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Monday, May 14, 2007
Hi Everyone,
Just a couple of quick updates. I have changed the Keep on Swimming website and tickets are now on sale for the gala!!! Click here to check it out. The address is www.keeponswimming.org.
This Saturday May 19th we are having a muffin breakfast at our house to support Relay for Life. Here are all the details:
Time: 9am to 11:30
Place: 3049 Chaucer Ave. North Vancouver
Cost: donation to the relay
Let us know if you are able to come.
604 980 3177 or jbrear@shaw.ca
Love Heidi
Thursday, April 19, 2007 10:44 AM CDT
I have been meaning to update for a long time, but things have been so busy! Plans are coming along for the gala, silent auction items are coming in already and tickets should be on sale soon! It looks like we will be able to sell them online through the BC Cancer Foundation site, which will be great. As soon as they are on sale I will update this site.
This Sunday will be one year since Ashley passed away. As I write this I can hardly believe it. In many ways the time has gone by so quickly and in other ways it feels like forever since she was here. This Sunday will be hard, but also a special day because my god daughter Lucia Ashley is going to be baptized. I can imagine how happy and proud Ashley would be that this precious new life shares her name.
I’m working on updating the Keep on Swimming website with our new logo, but for now the old site is still up and provides info about the gala. To check out the site click here The address is www.keeponswimming.org.
Take care,
Heidi
Friday, January 19, 2007 8:51 PM CST Hi Everyone,
Friday, December 8, 2006 6:04 PM CST Hello Everyone,
Friday, December 8, 2006 6:04 PM CST Hello Everyone, Sunday, October 22, 2006 10:09 PM CDT Hi Everyone, Friday, September 15, 2006 7:47 PM CDT Hello Everyone, Monday, June 26, 2006 7:56 PM CDT Monday, May 23, 2006 12:56 AM CDT Hello Everyone,
Saturday, April 22, 2006 3:10 PM CDT This is the journal entry we never wanted to have to write. It is with broken hearts that we let you know that our amazing Ashley died peacefully this morning surrounded by her family and her beloved boyfriend Brian. She was at peace and will no longer be in pain.
Friday, April 21, 2006 11:37 PM CDT Ashley has had a couple of rough days. Wednesday started out with a fall in which she hurt her knee. She took some morphine and by the end of the day the swelling seemed to have gone down and she didn’t need any pain killers in the night, but today it was causing her a lot of pain again. Yesterday morning she woke up in a great deal of pain in her stomach area. The home care nurses came as well as Ash’s GP. Ashley took morphine, but the pain did not go away so they kept increasing her morphine. By the end she was completely stoned and frustrated that she could not think straight and was so groggy. Today we have been trying to find the balance of keeping her out of pain, but not completely out of it. I think it may take some time to adjust to the morphine and some of the side effects will get better as her body gets used to it. Throughout it all she has not lost her sense of humour and is often making us laugh as she points out how silly many of our questions to her are! Thank you again for all the prayers, support and love. Monday, April 17, 2006 0:19 AM CDT Hi Everyone, Thursday, April 13, 2006 0:03 AM CDT Hi Everyone, Tuesday, March 21, 2006 11:24 PM CST Hello Monday, March 6, 2006 11:04 AM CST Hello Again! Friday, March 3, 2006 2:29 PM CST This week has been a bumpy ride. I started getting fevers and my bowels were all messed up. They decided it was probably an infection so I've been going in daily for antibiotics. I'm feeling slightly better but my bowels are still really messed, Hopefully they will clear up soon. I had a really bad fever last night. I think it was from the Hodgkin's. I'm down to 10mg of Prednisone and hoping to go to 5 really soon. And then...boom....good bye Hodgkin's!!
Tuesday, February 21, 2006 10:38 AM CST Hello! Monday, February 13, 2006 4:34 PM CST Hello! Thursday, February 9, 2006 3:10 PM CST The words “palliative” and “terminal” have come up this week BUT….they always come with and IF or a WHEN!! These two words are my HOPE!!! I have so much HOPE. I am still fighting this disease and I haven’t given up or surrendered. Yes, these are very scary times but I am also witnessing my bodies amazing ability to heal. My spleen has shrunk down and no longer hurts and my platelets have gone from 2 to 4! Not HUGE things but little things. I know the prayers help so please keep praying for my platelets and my spleen. Also pray that this GVT will come in and kick the Hodgkin’s BUTT leaving everyone shocked as I walk away!! Tuesday, January 31, 2006 3:31 PM CST Hello, Tuesday, January 24, 2006 11:54 PM CST This last weekend was rough. I was admitted into the hospital AGAIN!! It was crazy...they put me back on all the antibiotics, anti fungal and did chest x-rays and ct-scans...everything I've been through for the last 30 days and we decided it was my Hodgkin's...not an infections! It all happened because it was the weekend and I spiked a high fever at the hospital and they the doctors didn't really know my case so they had to cover all the bases again. I was on the 4th floor and the care was questionable and I think I was at WAY higher risk being there then at home. Thank goodness Monday came and my regular doctors released me ASAP! PHEW! Thursday, January 19, 2006 9:16 PM CST Friday, January 13, 2006 11:27 PM CST Thursday, January 12, 2006 4:00 PM CST Tuesday, January 10, 2006 9:32 PM CST Hello... Sunday, January 8, 2006 4:42 PM CST Hello! Thursday, January 5, 2006 7:18 PM CST Hello... Saturday, December 31, 2005 2:22 PM CST Wednesday, December 28, 2005 12:01 AM CST Hello...
Thursday, December 22, 2005 7:09 PM CST Thursday, December 15, 2005 11:20PM Hello Hello! Monday, December 12, 2005 1:40 *Look for new pictures from Dec.12 at the bottom*
I am so happy to announce that thanks to Brian's support and amazing computer skills the new Keep on Swimming webpage is finally up and running! Ashley and Brian started working on this site, and I have continued to update and add to what they had already begun. There is a place for people to see what volunteer positions we need to fill for the gala, how to donate, listen to one of the songs from Ashley's CD, read some of the articles about Ashley and so much more. Thanks so so much to Brian for all his help.
To check out the site click here The address is www.keeponswimming.org.
Heidi
Thursday, December 24, 2006 8:51 PM CST
Just a quick update. There is an incredible little article in the Province today written by Donna, Brian's mom about Ashley and Brian. There is a beautiful photo of the two of them. If you can't get a hold of the actual article click here and scroll down the page to read the text but unfortunately it doesn't have the photo.
Have a blessed Christmas,
Love Heidi
December, 14, 2006
Hi Everyone,
Wow, Tuesday evening was an incredible night!! It was so special to spend that evening, Ashley’s birthday, in a room full of so much love with so many amazing people. Thank you to everyone for coming and for all of you who worked so hard to make the evening so very wonderful. A special thank you to the talented, caring musicians and all who made the CD possible, the people who baked yummy treats for us to enjoy and those who served tea and coffee, those who did decorations, sold CDs, spoke or donated their talents and time. You all truly a blessing and I know Ashley would be very proud of the evening!
As many people have said the music on the CD is absolutely beautiful, it will transport you into another world, to a place you can come to find comfort and relaxation. The booklet in the CD is also great, with many quotes about and pictures of our Ashley. If anyone would like the CD, they are $20 and we have them available here. All the proceeds are going to Callanish (http://www.callanish.org), a place that provides wonderful healing for so many. Give us a call 604-980-3177 or send us an email (kosgala@gmail.com) and we will work out how best to get it to you.
Take care,
Heidi
P.S. Thanks for all the caring entries in the guestbook. They mean so much to our family.
On December 12th (Ashley's birthday) at Highlands United Church you are all invited to join us for the launch of a healing CD in Ashley's memory. It will be a chance for us to gather to hear the beautiful music, be together, have some treats and purchase CDs if you would like. The CD is wonderful and the booklet with it is full of quotes and photos of our beautiful Ashley. The proceeds from the CD will go to Callanish (http://www.callanish.org), a place that was so special to Ashley.
Hope to see you there.
Love Heidi
On December 12th (Ashley's birthday) at Highlands United Church you are all invited to join us for the launch of a healing CD in Ashley's memory. It will be a chance for us to gather to hear the beautiful music, have some goodies and just be together and remember.
Hope to see you there.
Love Heidi
http://i17.photobucket.com/albums/b84/ashleybrear920/Poster1.jpg
The Light the Night Walk last week was a huge success. We had a fabulous team and raised at least $4000 for lymphoma and leukemia research. I want to say a huge thank you to Leah Callen, our fantastic team captain. She did an amazing job gathering our team together, making a special banner, sending out helpful and encouraging emails and so much more! Thank you also to Donna for having beautiful buttons and stickers made of our amazing Ashley.
This Thursday at 7:00pm we are having a meeting for anyone who is interested in helping with the next Keep on Swimming Gala, August 24, 2007. Everyone is welcome, whether you know what you would like to help with or not. It will be a chance to gather together, hear about the plans so far, exchange ideas, get even more excited about what is certainly going to be a great night and maybe even have some yummy treats! If you would like to come and need directions to our house send us an email ( kosgala@gmail.com) and we can send you directions. Hope to see everyone on Thursday!
Take care,
Heidi
I can not believe how long it has been since I’ve updated! Mom, dad, Andrew and I went to Maui for ten days in August. It was a hard trip because we missed Ashley but a really good trip. It gave us all a chance to relax and spend sometime together. Along with the relaxing we had some good adventures, surfing, snorkeling, and kayaking (even if I don’t think we will ever get either mom or dad back in a kayak again).
We are getting quite excited about the gala! Lauren, mom and I met with Gerry at the Pan Pacific. She is the person that Ashley worked with for the last gala and she is amazing! She has been so accommodating and wonderful. We all left the meeting convinced that the Pan Pacific would be the perfect place for the gala next year. The date is set for Friday, August 24th, 2007! There will be lots of opportunities to help and be apart of this wonderful night. If you want to help and haven’t let us know please email us at kosgala@hotmail.com.
Andrew and I also finally went together and donated blood. We have been wanting to do this for so so long but either one of us has been sick or we haven’t been able to coordinate our schedule with the blood donation clinics. When we finally did it it was on the one year anniversary of when I donated stem cells to Ashley. Since a year has passed I have also asked Canadian Blood Services to send me information about getting on the unrelated bone marrow registry.
The day before we left for Maui my friends Anke and Chris in Victoria, welcomed their newest daughter into the world, Lucia Ashley Marie. I can only imagine how thrilled and honoured Ash would be to share her name with this precious new life. I went to visit Lucia on the day she was born and remembered the fun Ashley, Erin and I had when we went to see Lucia’s big sister Hannah on the day she was born just over two years ago. We have pictures of us laughing and laughing in the car on the ferry as Erin tried on Ashley’s wig, and the famous picture that Ashley loved of her and Hannah, both with baby hair. Hannah came to visit Ashley many many times and brought her so much joy.
I think that is it for now. I will try to update more frequently and keep everyone up to date on gala plans.
Take care,
Heidi
Hello Everyone,
I know that it has been along time since I have written, and there are many things that are happening that I wanted to share with you. Yesterday morning we put Ashley’s ashes in the memorial garden at St. Agnes after the regular worship service. This garden is a special place because the church has played such an important role in all our lives. Ashley loved the people there so much, and her relationships with some of the children and their families were some of the most important in her life. It is also the place where our Nana’s ashes are. When Ashley was dying we knew Nana would be one of the people there to lovingly greet her into heaven. It was a very hard day. There is something so hard about the finality of it all, but we all made it through. It was very special to have our Grandma and Grandad from Montreal and our cousin Kathleen and Auntie Shirley from Toronto there.
There are also some really exciting things going on in honour of our Ashley. In the last few months some high schools decided to run blood drives encouraging the senior students to give blood in memory of Ashley and each school was challenged to see who could get the most people to give blood. What an amazing way for Ashley’s legacy to continue! It would be so great to see this idea grow and have other high schools and groups do similar drives and continue to share Ashley’s story.
The other exciting thing that is going on is beginning plans for another gala. It was Ashley’s wish that the galas did not end with her life, and we promised they would not. The planning is just beginning but at this point, but it looks like the next gala will be in the summer of 2007. We are having the first of the planning meetings this Thursday 7:30pm at our house. It will be a chance to hear what people are interested in doing and maybe get some committees together. If you would like to come send me an email (hbrear@hotmail.com). As more plans are made I will continue to update the website about them.
Love Heidi
Thank you to everyone who continues to sign the guestbook. We look at it regularly and love to hear from people. I don't think any of us can really believe that Ashley is gone. I guess your brain only lets you process a little bit at a time or you would just be too overwhelmed by the sadness and grief of it all. Reality seems to hit in waves, some moments harder than others. We are hanging in there and feel so blessed to be surrounded by so many amazing, caring people.
Just wanted to remind people about the fantastic show that will be happening on June 4 as a fundraiser for Keep on Swimming and a youth and young adult bursary fund. I think it will be a really great night and hope to see lots of you there!! Have a look at the poster below for more details.
Love Heidi
Sunday, May 7, 2006 12:56 AM CDT
Thank you to everyone who came out on Friday to celebrate Ashley’s life! The church was filled with so many amazing wonderful people who have companioned Ashley, myself, mom, dad, Andrew or Brian on this difficult journey. There are many people that we had the chance to talk to and so many others that we did not get to say hello to and only saw at a distance. Thank you for all the cards, messages, hugs, food and donations to Keep on Swimming that we have received.
I also wanted to let you know about a fabulous concert happening on June 4 at Ryerson United church in Vancouver at 7:30. Ashley’s friend Dan Mangan is an amazing singer/ songwriter who will be performing that evening to raise money for Keep on Swimming and a youth and young adult bursary fund. It should be a great night and everyone is welcome to come. Admission will be by donation.
Love Heidi
Tuesday, April 25, 2006 12:56 AM CDT
Ashley's service will be Friday, May 5 3:00 pm at Christ Church Cathedral (690 Burrard St.) There is no parking at the Cathedral itself, but there are a few parking lots off of Hornby St one block over from Burrard. Parking may be difficult to find downtown on a weekday afternoon so it might be good to come early. Details about the reception will soon follow.
Saturday, April 22, 2006 3:10 PM CDT
This is the journal entry we never wanted to have to write. It is with broken hearts that we let you know that our amazing Ashley died peacefully this morning surrounded by her family and her beloved boyfriend Brian. She was at peace and will no longer be in pain.
We will post when and where the service will be when we get those details figured out. Thank you all for the love and support you have given Ashley and each of us through this almost three year battle with cancer. We have appreciated all the beautiful flowers but if you are considering sending flowers to us please instead make a donation to the BC Cancer Foundation or the cancer fundraiser that Ashley founded Keep on Swimming directly at(3049 Chaucer Ave. North Vancouver, BC V7K 2C1). This would mean so much to us and to Ashley.
Dearest Ashley, You will remain in our hearts forever and we love you so so much. Now may you be free to dance with God and the angels!
Love Heidi, Dave, Judy and Andrew
We will post when and where the service will be when we get those details figured out. Thank you all for the love and support you have given Ashley and each of us through this almost three year battle with cancer. We have appreciated all the beautiful flowers but if you are considering sending flowers to us please instead make a donation to the BC Cancer Foundation or the cancer fundraiser that Ashley founded Keep on Swimming directly at(3049 Chaucer Ave. North Vancouver, BC V7K 2C1). This would mean so much to us and to Ashley.
Dearest Ashley, You will remain in our hearts forever and we love you so so much. Now may you be free to dance with God and the angels!
Love Heidi, Dave, Judy and Andrew
Love Heidi
Heidi here again. Ash and I thought it would be good if we could update more often so I will give it a try. Ashley has been feeling physically very weak and tired. The stuff the doctor gave her for her eyes seems to be helping which is great. She is having less trouble sleeping, fewer nose bleeds and definitely feeling more at peace in the last day or two. We think that the depression is starting to lift. She even decided last night that she wanted to come to an Easter service at the Cathedral. She had to be at the hospital for 9:30 so the whole family came to the 8:00 am service. It was an exciting service because it was Easter and there were six baptisms. I think it meant a lot to each of us that Ashley wanted to go and we were able to be at church together. It was the first time that the whole family has been able to see me at work and today was particularly special because I was doing two of the baptisms. Brian has been sick for the last week so he hasn’t been able to come over and Ashley is really missing him!! We are all hoping he gets better soon.
Love Heidi
Ashley has asked me (Heidi) to post another update. She has been struggling along these last few weeks. She is still at home and going to B4 ever other day for platelets, blood and fluids. She is really tired, weak and her platelets are so low that she is bleeding a lot. She is also having trouble with her eyes. They are dry and hurting which is making it hard to see, but she went to an opthalmologist yesterday and he gave her some ointment that is supposed to help. Over the last several months Ashley has been very down and up until about a week ago we all just assumed this was normal feelings of grief considering all she was facing, but then we began to wonder if she was actually suffering from depression. Her doctor agreed that she believed she was depressed and started her on an anti-depressant. They will take a few weeks to kick in but we are all praying that this may help her to feel a little better. Ashley wanted to make sure I thanked everyone for all the messages, prayers and love that you have been sending our way (not to mention all the wonderful food!!!).
Love Heidi
I know many of you have been anxiously awaiting an update and Ashley has asked me (Heidi – her sister) to let people know how things are going because she is not able to at the moment. These last few weeks have been really rough. On Sunday she was admitted to palliative care at VGH. She spent the night there with Mom and I, but decided after a mostly sleepless night that she would rather be at home for now so that is where she is! She will go in to B4 every other day for now. She is very tired and weak. Her spleen is enlarged and her platelets are still very low. She continues to amaze us with her strength and courage. She is not up for visitors at the moment or even able to talk on the phone but appreciates the email messages and guest book entries so much!! Thank you all for your support and love. Please continue your prayers as we face the difficult days ahead.
Love Heidi
What a week last week was?!?!? Wiped me right out! I hardly had a chance to talk to anyone. I felt much better yesterday and I'm hoping for a great day today! I'm thinking of some fun things to do out of BED! :) Every single day seems to have some challenge or crisis to overcome!! I am feeling really strong and hoping to cut my Prednisone to 5mg this week. Hodgkin's isn't going to be able to survive much longer!!!
Brian stayed over Friday night and I managed to remain fever free until the morning!! YEAH!!!! It was really special to get to spend more then a couple hours with him!
Check out my guest book to find out more about giving blood!!! We are trying to get 100 units in my name!! Wouldn't that be amazing?!?!?! I use about that much...so it would be so great to have it given back. Yesterday I sat in a room as 3 people received platelets that would keep them alive..me being one of them!!
I'm still wanting my own immune system to kick in and produce the platelets so please pray for me...,my counts were only 4 yesterday!!
Thanks for all the amazing prayers...
Love always,
Ashley
I'm feeling pretty good right now and hoping it will last!! I never know what the next moment will hold so I just live minute by minute appreciating every moment that I feel good!
Keep up the prayers and the donations to the blood bank!!!
Love,
Ashley
I am still doing well but I have had a few fevers in the last few days which sucks. They worry me and aren't much fun. I'm hoping that somehow they are related to my cold and not my Hodgkin's.
I'm still on the every 3 day check up to the hospital that is really nice. I'm going less then I'm staying home. My numbers have stopped going up and I pray they start to go up again. They are stable but not as high as I would like...esp those little platelets. I received platelets on Sunday and we'll see if it made a difference. I don''t know if you read in my guest book but my neighbours donated platelets!!!! This is such a HUGE gift. Blood and platelets have saved my life many times. If you donate blood you can mention my name and they write it in a special book. It isn't a big deal to do but it can literally save lives!!!!!
I got a great surprise this week! Lauren came home to visit!!! It has been soooooo special having her here. She makes me feel so good. Every time she comes over I smile no matter how hard a day it is!
My aunt Sally also flew out and spent the weekend visiting. It is soooo nice that everyone cares so much. I think it was really special for dad to have his sister here!! It was neat to watch the two of them!
On Sunday we all went out for a huge sushi lunch. I felt so good and the food was amazing. I'm really lucky that I can eat well right now. I know that helps me get stronger. My family is so blessed with people who bring us meals. It is so amazing. We get the very best food! I can't even describe how much it means to us. Thank you to everyone who has so kindly fed us!!!
Brian's new job is going really well and he just LOVES it! I am sooooo happy for him. It means so much to me that he has a place to go that makes him feel good!! And he is totally in love with his new car. He spends the weekends working on it...making it cooler...if that is possible!!! hehehe
Keep prayer for no more fevers and great counts!
Love
Ashley
I have been getting much stronger. I am eating and going for walks. I even went out for dinner at the pub last night. My body is getting better. My counts are slowly going up. My platelets were at 9 today...so we need to keep praying that they go up so I'm not at risk for a bleed. I get 2 DAYS off from the hospital. It is so hard to go back once you start getting time off! I get used to lazing about!! 8:00 appointments are early! My Prednisone is still at 20mg and we will think about tapering it on Thursday. We need to start kicking the Hodgkin's butt...I've had enough of it!
Brian got a new CAR!! YES...the truck is gone...:(! I did love the truck but his new car is really nice and I think it was the right thing to do!!! He is SOOOOOOOOOOOOOOOOO excited!! It is great to see him happy about something!! I know this time is so hard for him and he deserves a treat!
Heidi's birthday was really special. I felt great all day and it was just a neat day! I was so happy not to be sick.
My cousin's were visiting for the weekend and it was so AMAZING to have them here. I LOVE them so much!!!! They give me so much hope and inspiration! I know God sent them to talk to me!!!! I feel sooooo blessed to have them in my life!
I got a surprise phone call today from one of my best friends KATJA!!! It was a surprise because she lives in Slovenia!!! It was so great to here her voice and get to chat!!! WOOOOHOOOOO!!!!
Thanks so much for all the prayers...keep praying for my platelets...and that my Hodgkin's goes away...
Love,
Ashley
Today I got to go for a beautiful walk in the sunshine and they have cut my hospital visits from daily to every other day! I am receiving healing touch and I believe this has a HUGE impact on my progress!! It is so spiritual and magical! I don’t know how it works but it does and my body loves it! It really is healing for me!! All parts of me!
Sorry I haven't updated in so long but I've been pretty weak. I had a dose of chemo on Friday with the hopes that it will tame my horrible fevers. I also found out I have the flu...bonus! I'm not doing very well and my body is so weak, I ask you to pray for strength. My platelets are also really low at 5. This means I am at a high risk for bleeding....please pray my platelets go up!! My tummy is swollen from my spleen and most of my clothes don't fit. I have to get mom to go get me some loose sweat pants to wear. It is very hard to see my body like this. I can't do ANYTHING. My days consists of visiting the hospital and coming home to sleep. I do read my guest book and it always makes me smile to know that so many people are thinking of me!!! THANK YOU SO MUCH FOR ALL YOU PRAYERS!!
Love always,
ashley
Today was tough with fevers and dizziness....I'm also dealing with GVHD now. I have a rash the covers my entire body, gut problems and my liver enzymes are up! The GVHD is what we wanted and means that there will be GVT!!!!!! So I pray that I deal with the GVHD and the fevers stop...showing that my Hodgkin's is being beaten once and for all!!
Keep on Praying!
Oh yes...please please please pray for my friends Lothar and Jeremy who are going through tough cancer battles right now..
And the good news...there is always sunshine! Tonight I felt good and was able to go over for Brian's belated family birthday dinner. I was so happy to be a part of it! I LOVE him and his family so much! I really wanted to be there to celebrate his special day with him! Keep him in your thoughts as he starts a new job tomorrow...not an easy task with all this stuff going on!
Love always,
Ashley
Hello
Things are really rough. I'm still having fevers but not as much...but they are still so draining. I am very weak and can do nothing more than sleep and lay in bed. I'm praying for my sister's cells that they will be free from the immuno-suppressants to fight my Hodgkin's so I can have some relief. Thank you so much for the unbelievable guest book entries. They mean the world to me. I am so impressed at how well people express themselves!! Keep on Praying!
Ashley
I write tonight with sad news. My bone marrow biopsy came back positive showing Hodgkins! This is most likely the reason for the fevers and the enlarged spleen. Dr.Barnett still speaks with hope and doesn't believe this battle is over! He said...we have come into rough times before and we deal with them! We are stopping my immuno-suppressants with the hope of more GVT and GVHT...this could make me quite sick but will hopefully take charge of these nasty cancer cells. We have to hope for some chronic GVHD that is annoying but not life threatening. We are going to talk with the Lymphoma experts on Monday and see if they have a chemo for me. This is soooo hard and thank everyone for there love and support! WHAT A SHOCK?! The good news is that we now know what is making me so sick and we can start dealing with it!
Love always,
Ashley
Hello...
Another day...more waiting. We will probably get the initial results from the bone marrow biopsy tomorrow. I am praying for good news. They have started me on some anti-fungal medication in case that is what is causing all this. I really really really hope it is.
I was able to go to my Callanish Young adult group last night. It was so great. I was surrounded by soooo much love and support! I feel so blessed to be surrounded by so many amazing people. I get to go home again tonight and come back again tomorrow night.
Thank you so much for all your thoughts and prayers...they mean the world to me!!
ashley
Today's doctors appointment seems to have left us with more questions then answers. The fact they all agree on is that my spleen is enlarged. They still don't know why or what they are going to do about it. Dr.Barnett was very vague. The next step is a bone marrow biopsy to see if there are any abnormal cells there. That will happen tomorrow and we should have the results by Friday. Some things they are throwing around are reoccurence, non hodgkins from the transplant, an infection, and possibly the removal of my spleen. They really don't know and I think this is a time that we just pray for some answers.
Love,
Ashley
Thank you so much for all your thoughts and energy at this very scary time. We still don't have answers. We know my spleen is enlarged but the reason still a mystery. On Tuesday The Lymphoma Experts at the cancer agency will be meeting to review my case. I am so scared by cancer is reoccurring. I pray that they can find another clear treatable explanation for my enlarged spleen and fevers. I am still having high fevers daily. I am very blessed to have received a day pass to come home for the night. I will go back tomorrow at 8:00am. They know the waiting is really difficult and especially when you are in the hospital setting. I really appreciate that they support me psychologically as well as physically! My body is really weak from being in the hospital for so long but overall I feel pretty good!
These next few days will be really really hard...keep on prayer for my friends, family, doctors and I!!
Love,
Ashley
I'm not sure what to write today but I really really really need your thoughts and prayers. The original infection they believed I had turned out to be a false alarm. 1 week later I'm still dealing with fevers. They have been searching for an infection but found nothing. They decided to do a ct scan and it showed that my spleen is enlarged. There are three reasons why this could be....it could be an infection, it could be from all my treatment or it could be my Hodgkin's disease. I am terrified. Waiting is soooooo very hard. My family and friends need prayers too. This is so scary. Please also pray for Brian who has spent every night here with me...
We really don't know what this means...I pray that it isn't Hodgkin's....
The waiting is sooooooooooooooo hard.
Love,
aShLeY
Hello...
BIG UPDATE...I am in the hospital. I have an infection...and I need antibiotics every 6 hours. It SUCKS! I hate being in the hospital! It makes you feel so much sicker! I am in here for a minimum of 7 nights! I have done 2. I have convinced Dr.Barnett...in Ashley style..to let me go out for a New Years Eve dinner!! I have to receive blood today and I'm hoping it will arrive in time for us to go out for dinner! It is common for your hemoglobin to drop after a transplant when you get an infection. They are still checking me out to make sure there are no other infections causing my fever.
One of the worst parts of being in here is having to be on a constant IV drip! They are hung up on it! You have to fight tooth and nail to get unhooked for a second! The other night they wouldn't even unhook it for me to change into my pj's. I had to put the iv bags through my shirt sleeve, bra and then pj sleeve...geez! I think I could be off for 5 minutes! I can drink so I don't see why I'm not allowed to get off and walk around for a bit! I'm working on them...baby steps!!
It also sucks not having a Hickman line (central line used instead of an iv) any more. It means that I get poked over and over and over and over again
! My little veins have been through so much they can't take it!
My family has been AMAZING!! I am never alone which makes a huge difference. Brian has been spending the nights! He also is a great advocate for me. He makes sure everything is in check and negotiates with the nurses when I need something!
This all has been a huge shock! I thought I was doing fine and back on track...and then all of a sudden...BOOM...sick again! Please keep in your thoughts and pray that this infection clears up and I can go home!
Love,
Ashley
Goals for 2006:
1. Get out of hospital
2. Get off Prednisone
3. Stay cancer free
4. Get 6-pack!!!
I'm not doing too great! I'm on my way to the hospital. I have had a fever and we did tests yesterday and something showed up. I am going in for iv antibiotics...YUCK!! The other bad news is my liver numbers a slightly up so they don't want me to taper my Prednisone...
Ashley
Some people have been worried about this entry so I'll add some more information...this is just an infection...not really fun...but nothing to worry about. I'm on the antibiotics and they will clear it up! Just means IV's and time in the hospital! Sorry for any confusion!
Hello!
A whole week..it must be Christmas time! I saw Dr.Barnett on Monday and everything looks good. He did warn me that as I start to come off the Prednisone I have more then 50% chance of getting more GVHD. If that happens I will be on Prednisone for the next few months. I ask that you keep me in your prayers at this time. He did tell me that it is normal to get some more and not to be upset about it! I have been having terrible mood swings this week. It is related to decreasing my dose of Prednisone to 20mg. I know that this is really hard for my loved ones...seeing someone you care about go CRAZY is never too much fun!! The good news is they come and go and I still have lots of time where I am happy and enjoying Christmas. Physically I feel really strong and I'm able to do most things! YEAH!
I saw an endocrinologist today and he was TERRIBLE!!! I am very confused about what is going on and I'm going to ask to see another doctor. If anyone knows a good endocrinologist in Vancouver...someone who would know about transplants..let me know!
Lothar is out of the hospital!! YEAH!!! I am so happy for him. Mom and I went out for lunch with him today. It was really really special!! He is sooo important to me! We have become such great friends. He is going to spend Christmas at our house with his family!! I know we both have a lot to celebrate this year!
I got to meet Lothar's roommate the other day when I went to visit him. We got to chat and it was really special to me. He is an amazing man and I ask you to keep him in your prayers. His name is Jeremy and he is having chemo to prepare him for a transplant.
My friends are home for Christmas and it is sooooo great to see them again! I really really missed them!! It is great to just get to chat in person again!
Tomorrow I have the Chu kids again and I am really excited! Days with them are so special to me! I feel so blessed to have them in my life!
OH...Paige came to visit last weekend and she told me some HUGE news! She is going to shave her head for my next fundraiser (Gala in August)!! She is so BRAVE! I am so proud of her. She is growing up into such an amazing young woman! Speaking of my Gala...I have begun working on it and anyone interested in helping can let me know! The website should be ready the beginning of January and will have TONS of information.
I hope everyone is doing well and enjoying time with their families and friends...Merry Christmas!
Love,
Ashley
I have been so busy I haven't been able to update very much....guess it means I'm doing really well! I am loving the holiday season and all the fun activities that come with it!
I had a Christmas party at Callanish on Wednesday night and it was so much fun. Mom and Brian came with me. It was really neat for them to see the place that means so much to me! It was also great to see everyone from the group and share a FANTASTIC meal with them!
Today Heidi and I had a very special night! We went to Tony and Tina's Wedding! It is a play and you participate! Heidi won tickets and she took me! LUCKY ME! We had the best table and we all just had a fabulous time! Everyone was SOOO into it! We laughed really really hard! I would recommend the show to anyone!
I am really frustrated with my face. It is so swollen from the Prednisone. I don't look like me! I really notice it in photos when I smile...the girl I see looks so different! I can't wait to get off this drug so I can be me! Now I have hair...but a puffy face!! It is really hard to have such a dramatic change in how you look. I know it is only temporary but for the first time in my life I don't like to have my picture taken!! If you know me...this if very odd!!
I am babysitting the Chu kids tomorrow night!! WOOOOHOOOOO!! I am sooooooo excited. They are the kids I have been taken care of for 7 years and I really miss them! I know tomorrow will be so special. They are so precious and I value every minute I get to spend with them!
Thank you so much for all the great birthday messages!!! It really was a very special birthday for me!!
Love,
Ashley
HELLO!!
IT IS MY BIRTHDAY!!! 22!! I made it!! There were times this year when turning 22 seemed like it might not happen!! But here I am and I am strong!!! I am soooo excited!!
I had the BEST day today! Brian took me out for a very special birthday supper! We went to the Granville Room and then to Sequioa for dessert! It was soooo great! We had the Belgium chocolate truffle cake!! WOW!! If you ever want really good dessert go to Sequioa. It is the old Tea House in Stanley park. My friend Lothar told me about their desserts and he was bang on...best in the city! I am a chocolate freak and I was very impressed. I also got my gift! I was really really spoiled and shocked beyond belief! I got a digital camera AND printer! It prints photos just like the stores...and for about the same cost! Totally AMAZING!!! WHAT AN AMAZING BOYFRIEND I HAVE!!! I am sooooo blessed!! He treats me like a princess! THANK YOU BRIAN!!!!!!! I LOVE YOU!!! Oh I almost forgot....at 12...when it really became my birthday we went for our regular Tim Horton's trip and I took some pics!! PREDNISONE GIRL...on top of the world...stuffing her face with a birthday donut!! hehehe You can see how great my new camera is!!! hehehe
Today I have big plans for when I wake up! I am going to lunch and a movie and then later having a few people over for cake! I am soooo excited! YEAH BIRTHDAYS! AND I don't have to go to the hospital...I get the day off!!! WOOOHOOO!!!
I heard today that my friend Lothar is in the hospital. He now has GVHD in his gut...yuck! He is on TONS of Prednisone and needs prayers! I went to visit him today and his spirits are great!!! He is such an amazing guy!! We chatted for a long time and I'll go back and see him soon! He is one tough cookie!
I will update again with news of my birthday celebrations!! THANK YOU TO EVERYONE FOR YOUR SWEET BIRTHDAY MESSAGES!!
Love,
THE 22 year old donut eating girl!
BIRTHDAY PARTY PICTURES
Thursday, December 8, 2005 1:22 AM PST Hello Hello Hello!!!
Sorry it has taken me sooo long to update!!! I've been super busy and haven't had a chance to sit and write....now at 1:20 in the morning I get a chance!
Heidi's ordination was beautiful! The service was AMAZING!! The sound in the Cathedral is so powerful! She was surrounded by so many people who love her and support her. It was so crazy to think that my big sister was actually being ordained! I knew from the beginning she would be but it was still so great to see it happen! Please continue to keep her in your prayers as she begins this new ministry! The pictures didn't turn out very well but here is one of the family and Bishop.
I have been cleaning out my room and it feels so good! It was a disaster! When I was sick I just didn't have the energy to sort through everything and it just built up...I HATE CLUTTER!! It is really healing to get it all out and start fresh! I also want to start decorating for Christmas and you can't do that with clothes on your floor!!! hehe
My fish Gill died on Sunday. He was a Gold Fish of 1 1/2 years! I got him from my friends when I was re diagnosed the first time. He was an amazing fish and brought lots of joy to my life. Who would of thought something as simple as a Gold Fish could be so important! I had a little fish funeral with Christine...hehe...I know....little wacky...but he was my pet! I still have Demetri (white and gold one) and today I went and picked out a new orange one! His name is Leet! (1337) lol I think Demetri is happy to have a friend again!!! I'm going to get them a little tank...they are in a bowl right now and it needs to be cleaned TOO much! I can't clean it because of my weakened immune system so poor mom is doing it every week! I hope with a tank we can do it every 3 weeks...and I know the fish will be happier with more room!
I have been Christmas shopping and that is tons of fun! I am getting really really excited! There is so much happening this time of year and I am well enough to do almost all of it!! I just pray that my good health continues through this season and into the new year!
I saw Dr.Barnett on Monday and I don't have to go back for 2 weeks! This is really exciting because next Monday is my 22nd birthday and I don't really feel like going to the hospital on my birthday!! He said that my liver counts are still normal and we will keep tapering the Prednisone. The less I am on the better I seem to be doing! I am still emotional but I have lots of support so I am making it through and learning tons! I think I have my diet under control and I feel good about! I have never eaten so many fruits and veggies in my life!! hehe I asked Dr.Barnett if I could try snowboarding and he said there is no reason why I couldn't! He also said not to break an arm because that would just suck!! So...maybe just maybe...I will make it up the mountain this year!
My friend Allison has just been diagnosed with GVHD of the liver...seems to be the season of it...so please pray for her! Karin has a CT scan tomorrow so keep her in your thoughts!!! CT scans are sooo scary!! Lothar is still dealing with his GVHD but being strong as ever! I feel so lucky to be blessed with meeting such amazing people...sucks that cancer brought us together but I have made so AMAZING friends!!
Thanks for all the guest book entries...I love seeing who reads my entries!!!
Love always,
Ashley
OH YES...still looking for little jobs to make some Christmas money...so if you need something let me know!!! I have been having sooo much fun babysitting! Feel free to pass my name on to your friends!! I also do Christmas baking and walk dogs...hehehe!
Sunday, December 4, 2005 12:45 AM Hello,
Just a quick update to say I am doing great! Things are going so well! I babysat the last two nights!! YEAH!! I LOVE IT SOOOO MUCH! It is the best job for me!! I can't believe people pay me to spend time with their kids! It is especially fun at Christmas time because we can do Christmas crafts and baking!
My diet plan is going really well and I am at a really healthy weight again! I have figured out how to live and be healthy on Prednisone!! It is a bit of work but it works and I feel good about myself! I can't do anything about my rounded face but that will just have to stick around till I'm off the drug! The gym is going really well and I can see improvements in my energy and especially my mood!
I have a new project and I am loving it! I have started working on my next gala! I am doing a new web page and it is soooooo much fun! It is going to have some really neat stuff on it! I can't wait for everyone to see it! I hope to have it ready for January! I am going to be doing another news story then. It is about bone marrow transplants and the importance of donors....I think it will be really powerful! I want the website to be ready for when the story happens!
Tomorrow is a HUGE HUGE HUGE day! Heidi will be ordained!!! YEAH!!!! I get to present her with mom! It will be so neat! I am so proud of her! Please pray for her as she enters this new chapter of her life!!
OK...really better sleep...zZzZzZ...
Ashley
Thursday, December 1, 2005 3:21 PM CST
Another picture of Brian and I at the Christmas party!
Hello Again!
I am doing really well today! My day is pretty relaxing and I'm enjoying it! I had healing touch this morning and it was FABULOUS!!! It is the best feeling in the world! I can't wait till I can't start practicing it some more. My energy is still really low and a whole session is a bit much but I have been doing mini sessions...and I just love doing it!
I'm thinking about my fundraiser and getting really excited. My big project is a webpage. I have a story with Global planned for the middle of January and I want to have a great webpage ready for that! I know nothing about creating a webpage but I'm going to see what I can come up with. If you are into webpages and want to come help me I would love it!! I think it will be tons of fun to create! I want to have it so people to hear about me on the news can easily follow my fundraising....and maybe even be inspired to do some of their own!!
I am registered for a class at school! EEK It is an English lit class. I am totally nervous about going back to school but I think it will be good for my brain!
I had a great dinner with Steph last night! It was so great to catch up and visit! I feel like I kind of disappeared for a while and I'm finally ready to reconnect with everyone!
I have a dermatologist appointment today to see if they can give me anything for my Prednisone acne! It would be great if they could..but it doesn't bug me too much if they can't!
Tonight we are going out for sushi again!! hehe FAMILY sushi night! Yes...I guess I am still thinking about food! hehe
I feel really strong and I'm so amazed at my body’s ability to heal!!!
Love,
Ashley
Wednesday, November 30, 2005 1:06 PM CST SNOW SNOW SNOW SNOW SNOW SNOW SNOW!! Sunday, November 27, 2005 4:50 PM CST Hello Again!
I had really good appointment with Dr.Barnett on Monday. My liver counts are normal and we are working on getting me off the Prednisone. Most of my pain is gone. I have a slight pain in my right foot but nothing too bad! I am continuing to exercise and it feels so great! I have gained some weight so I have started to eat on a diet so I don't end up way overweight. I have cut out junk and I am watching my portion sizes very carefully. I am hungry all the time. Not only does Prednisone give you a never ending hunger but it also makes you crave junk food!! BONUS!
I have some babysitting jobs this weekend and I am SOOOOO excited! I love babysitting! I am so happy that I am able to do it again! If anyone has Christmas parties or needs someone to watch the kids when they shop please call me!!! I have lots of fun Christmas stuff to make with kids! hehe
Tonight I am going out for dinner with Stephanie! I am very excited! We haven't hung out in so long and I miss her. It will be great to get together and catch up!
I am getting excited about planning my next fundraiser and I'm going to start working on a new website ASAP!! If anyone has website ideas or skills and wants to help me out let me know! I want to set up something really professional!
Heidi is away at her ordination retreat! WOW!! Still in shock! She will start her position at Christ Church January 1!! Please keep her in your prayers!!
Enjoy the snow!
Ashley
I have really really really really really REALLY REALLY big news!! Heidi will be ordained on December 4th!! WOW!!! We had to wait till the very last minute to announce it. She will begin work in January. This is such a HUGE thing! I am so proud of her. I knew from the day she started at VST that she would be a priest...even when she said NO WAY! The ordination will take place at 7:00pm on December 4th at Christ Church. This is so huge in Heidi's life and I ask that everyone keep her in your prayers as she goes through this time of transition! I know she will do an amazing job!! She has the best pastoral skills and the congregation will be so blessed to have her!! Congratulations HEIDI!! I am so proud of you!! Wait till you see your present...hehe...
Last night was so much fun!! I felt so pretty. Being in the Crystal Ballroom brought back so many amazing memories. It is such a beautiful space. The food was amazing and the atmosphere fun!! I was totally healthy and felt great all night!!! THANK GOD!
I feel so much better now that I am going to the gym again! I think it has also helped a bit with the hunger. I feel much better about myself. Now I just have to keep going! hehehe It isn't so hard when you wake up at 5 because what else are you going to do?!? I can even see that I am retaining less fluid. My face looks more normal shaped. I am still really emotional. Emotions just come out of the blue for absolutely no reason. I never know what to expect. Other then emotional stuff my body is doing awesome. I feel really strong and healthy!
Now I just want to do some work so I can make some money to get Christmas presents....looking for ideas.....I must be able to do something! hehehehe
Love,
Ashley
PS If you click here , and click on Annual Report 2005 you can read a story about me!! I will see if I can post it better tomorrow!
Saturday, November 26, 2005 2:31 AM CST Hello,
Wednesday, November 23, 2005 2:30 PM CST AHHHHH PREDNISONE!!!
I am doing well! I have cut my Prednisone down to 60 mg a day and I haven't had joint pain...I pray that it stays this way! I am still an emotional mess. I am up and down and all over the place. I never know how I will be from one moment to the next. I am very anxious a lot of the time. This is something I am not used. I have had several attacks of anxiety this week.
Today I managed to go to the gym! It was soooo great!!! I felt so good and did a full hour! I was so proud of my body! I hope to go again tomorrow morning! It was the perfect way to start the day! I then went to the spa and got my face waxed..hehe..sounds fun eh?! The drugs cause little hairs on your face and they were driving me mad! I am so happy to be rid of them! I feel a lot better!
After the spa Mom and I got to do something really special. We went to the sound healing at Callanish. It was so relaxing and very powerful. There were 3 singers and a Didgeridoo player. He played it right close to your body. We were also given healing touch. Oh..and some bells were played. When I opened my eyes after I felt like I had been on a trip to another world. It was the most incredible experience. WOW!! VERY COOL! It brought me so much peace and I know my body just loved it! The Didgeridoo player does individual sessions and I'm going to find out more about it because I would love to try it. I love healing techniques that feel good and don't hurt...so many cancer treatments cause so much pain! It was really special to go with mom and for her to experience the healing power of Callanish! It is my oasis!! It allows me to release so much....a very very very powerful place. I really want to do fundraising for it...and I'm working on some ideas! I love that they run by donation so ALL can receive healing when they need it. You give what you can! I have heard of so many people losing everything to pay for alternative healing...and having debts for the rest of their lives...it is really horrific! I could go on forever about Callanish!!! It is just sooooooo important to me right now! And it is run by the MOST amazing group of people!!! They are soooo great and so loving and have the most amazing healing beliefs!! My dream is to work in a place like it one day!!
I was suppose to go to the hockey game with my B4 buddy Lothar on Thursday night but he found out he has GVHD in his liver and couldn't go. We got to go for dinner at Monk's and then Brian and I went to the game! I was so touched that Lothar invited me to go!! He is an amazing guy!! We have such a close bond! PLEASE keep him in your thoughts as he walks through this tough journey!
Tomorrow is very exciting for me..and I think why I am in such a good mood right now! It is Brian's work Christmas party. It is at the Pan Pacific! WOW! I get to go to the Crystal Ballroom again! It will be so amazing for me to be back there. It is the place where my dream came true! And I know the food is the best in the city!! I can't wait to dress up fancy and feel like a princess! I will post some pictures of us for sure!! I just pray that my health stays good...and my mind is stable!!
Wow...I guess I had lots to write about! Now I better get some sleep!! hehe...
Love,
Ashley
OH...I want to do a little work...I'm not sure what I can do right now but if anyone has any ideas let me know! I would love to babysit...I just have to be careful that the kids aren't sick...
I am going CRAZY...literally! For whatever reason Prednisone has a HUGE power over my mind. Last night I lost it...I was anxious and scared...so far from myself. I am having major control issues. The Prednisone has so much control over me and I'm working to try to gain some back. I am going to try to make sure that I am physical everyday...no matter what! This is something I can do. I am also not just eating anything. I have to be careful what I put in my mouth. I know now that I could eat all day and never fill the Prednisone hunger. So now I'm going to be careful that what I am eating is good for me...and reasonable amount. The physical stuff is hard but the emotional stuff is the hardest! I think it is really hard for people to understand what is happening. It is easy to say that it is the drug...but when I act different...it still hurts the same. My biggest fear is hurting people. I really don't want Prednisone to have a negative impact on my relationships. All this said...I want off it and know I have to go through some rocky stuff so that I can be free of it. It has also impacted my sleep. Last night I went to bed around 12:30 and was up at 4:30! It makes for very long days! Most people want more time but I have lots of time. I really just want rest!
I am going to a sound healing session at Callanish on Friday. I am so excited. I have never done anything like that and I'm curious to see what it is like. Callanish is the most amazing place. I couldn't think of it higher! It has brought soooo much healing to me! I hope that one day I can work at a place like it! A place where the true, real goal, is healing! Callanish isn't about making money or curing cancer. It is about HEALING!! WHAT A CRAZY IDEA!??!hehehe Sounds simple but a place like that is really really hard to find!
Right now I feel really good but I just never know. I guess I just keep swimming through it. Everyday is one day closer to being off of it and cancer free!!
Love,
Ashley
Tuesday, November 22, 2005 11:14 AM CST Sunday, November 20, 2005 2:56 PM CST Hello... Saturday, November 19, 2005 1:50 PM CST SUSHI SUSHI SUSHI!! Friday, November 18, 2005 9:56 AM CST Hello,
Thursday, November 17, 2005 8:43 AM CST MINI UPDATE:
Hello,
I woke up this morning feeling pretty sad. I hate it! I just like to wake up and look forward to the day. I know it is the medication but it is still so tough not to feel like yourself. I want to go out and savour every fabulous moment...but instead I just have this feeling of sadness. I talked and cried and now I'm feeling a bit better. I'm having trouble with the Prednisone. I can't stop eating and I'm gaining weight and that is hard to deal with. I also can't exercises because I have all these silly pains. I feel kind of stuck. It seems so silly to worry about something like your weight but it is really controlling. I can NEVER get full. Yesterday I ate 2 dinners and I was still starving. I am going to try to keep myself busy and far away from FOOD! I think living with some hunger will be my next challenge because eating doesn't stop the feeling...this is very odd. Odd for normal people...very common for people on Prednisone!
I met with Dr.Barnett yesterday and he is so fabulous. I feel soooo great every time I get to go see him. HE IS THE BEST!!! We have such a great relationship. He takes such good care of me. He has given me some amazing months...with relatively few fears considering all I am going through. He is the doctor of HOPE! He doesn't believe in scarring patients...why bother?!?! He only does tests that need results...to decrease my anxiety. He is calm even when my body is going crazy. And he is hilarious...he has the best sense of humour! I think I am the luckiest person in the world to be in his care. He wants to get me off the Prednisone so today we are starting to cut quite dramatically...wish me luck! I want off it too...so we might as well go at it full force. The fastest I'll be off of it is 6 weeks. We must pray for my body that it will be ok without the Prednisone...and find a state of peace between my cells. I am worried about the emotional roller coaster I am going to go on trying to get off of this drug...but I know it does pass!! I haven't had the joint pain so bad in the last couple of days. I have even managed without morphine. I am hoping it doesn't come back today when I cut down but if it does I am ready for it! hehehe
I went to healing touch last night and it continues to blow me away. It is soooo powerful. I find it especially clearing for my head. It really helps to lift my sadness and let me experience joy. I am so thankful for everyone who has offered healing touch to me over the past couple of years. It is soooo important to me. It is the most amazing gift I have ever received! I also believe with my whole heart that it does amazing, incredible, unbelievable things for my body! I know my body is like "YES...THANK YOU THANK YOU THANK YOU!" The healing work that goes on at Highlands United is something that must change the lives of so many people!!
Well...now after writing I feel pretty good! I have a smile on my face and maybe today won't be so bad. I'm hoping I won't have pain so I get out and move!!! If only my hunger was for exercise instead of food!! hehehe I'll work on that transformation!
Thanks for all the AMAZING guest book entries and emails...they keep me going!!!
Love,
Ashley
OH OH OH...I almost forgot...Mom and I saw Harry Potter yesterday!!! WOAH...sooooooo GOOD!!!!! It was so well done!!! YEAH HARRY!!! It was also great to get to go mom and I!!!
So the journey continues! I am doing really well. I still have the pain but the morphine does a great job of controlling it...and I must say I don't mind the little morphine world I have been living in! I am at Brian's and spending tons of time with the kitties. They are only here till December 1. It will be so sad to see them go. They are at such an adorable age. You sit in the room and they all come over and climb all over you. They purr and cuddle and play! I am so happy that they all have great homes to go to! I also feel very lucky that I got to play with them at this tender age. Grace is loving them and I know will be very sad to say good bye to her new playmates.
I am still watching out for colds and will be happy when I am done with the Prednisone and don't have to worry so much. I go to the doctor tomorrow for a check up and we will probably try to cut back on the Prednisone some more. I am in a really good space and excited that all of what has been happening is what kills cancer...kicks its butt!
Love,
Ashley
I am going for sushi! I am very excited. I have the world's worst sushi addiction! I haven't taken morphine since 5:30 last night so maybe the slowering of the taper has helped. I have the pills in my purse ready to go if I feel any pain.
And later today I'm going to Brian's to visit the kitties! I can't wait to see them!
Hope everyone is enjoying the beautiful SUN!! The mountains look sooooo AMAZAING!
Love,
Ashley
I'm back from the hospital. They have given me morphine to take every 3 hours and that should control the pain I am in. This is just another thing Prednisone does! They have slowed my taper a little and that should help as well. I think I will be out of it for a bit...as morphine makes me pretty wacky. I am just glad that the morning came and they were able to give me something strong. I forced myself to suffer through the pain all night and not go to emergency. My immune system is very weak from the Prednisone and the emergency is FULL of bad germs. I think there has to be a safer way for people with bad immune systems. It is terrible when you end up in pain...knowing there is something that can stop it...but having to wait hours and hours to get the relief!
I feel for my family, as last night was a very HARD night for them. I can't even imagine how they felt as they witnessed me in my bed screaming in pain. I felt like my joints were in a vice and being crushed. I am not sure why the Prednisone does this...but I think it is a very common reaction. I wish they would have given me morphine yesterday afternoon when I first phoned in with pain. I guess it is just one of those things. And I am always amazed that with pain it goes and you can't recall it. I know it was bad but I can't feel what I felt. THANK GOD! hehe I was working myself into a tizzy last night and then all of a sudden I was able to picture an image and it pulled me through. I held onto the image deepest to my heart. I had the image of me holding a baby. My baby! This is why I am doing all this. I do this so one-day I WILL be a mom. One day I will hold that precious child in my arms. Last night when I didn't know how I was going to make it to morning. I just pictured the moment. The moment when I finally get to hold MY baby! This is my deepest and most powerful dream. I fight each and every day so one day I will be a mom!
Love,
Ashley
After yesterday I had a shock last night....I ended up in THE VERY WORST pain of my entire LIFE! It is a joint pain caused by Prednisone withdrawal. I made it through the night. I am on my way to the hospital. I can't walk. I will post as soon as I know what is happening. This isn't "serious" it is just horribly painful.
Ashley
Two in one day...woah! I just got my blood results and my liver is still going down! YES!! GREAT NEWS! Everything else looks good except my Potassium which is now too high so I have to go back tomorrow...always something! hehe
Hello Hello,
I just woke up and it is so early but I'm buzzing! I have this CRAZY energy in me and I have to write! I haven't felt this in a very long time. I have felt much like a blob of nothingness. Not happy not sad...just there...moving through each and every agonizing minute. Just trying to get through the days and pain. Being sick is hard on your mind. All the drugs I am on control my mind! I am not myself and that is a very hard thing to deal with day to day. It is hard to be around everyone I love when I know they just want me to smile but I can't seem to do it. I spend all day trying to think of something that could pop my bubble and bring me some joy the best I come up with is eating a cookie...lol...thanks PREDNISONE! Lucky for me I am surrounded by the very best! The best don't go anywhere when you stop smiling! The best keep calling and most importantly keep stopping by trusting you will eventually do something other then sit in your bed!
But today for the first time in weeks I woke up excited. Excited to be alive. Excited to see my friends today and everything I have planned. WOW! Big news! I have TONS of gossip and stories to share!
The BIGGEST NEWS IN THE WORLD is that Colleen Nicholson is engaged!!! WOWOWOWWOWOWOWOW!!! She is marrying the incredible Chris! This is HUGE news in my little world! Colleen is like a big sister to me and it is hard to believe that she is all grown up! I am so happy for them.
I also got some pictures sent to me from Scott Barrett...another really close family friend. He did an amazing thing last year and organized his own balding for cancer night! He had incredibly LONG hair and took it all off!! I was soooo touched that he just decided to do this! To do something that makes a difference. To raise money to END cancer!!! To walk bald! YEAH! I will post some pictures for you to see!
Last night as I said...I was bummed. AND then...I heard a knock on the door. I went to the door and heard a little voice behind...of course I was excited because kids give me so much joy! I opened the door and there was little Grace and her dad Chris with beautiful flowers she had picked out to bring to me! Seeing her there with the gorgeous flowers brought the hugest smile to my face! Chris also brought the news that his Starbucks....after being inspired by his head shaving this summer...wants to do a head shaving! YEAH!! MORE PEOPLE getting involved and making a difference! I am honoured that they are thinking about this! And a HUGE thanks to Chris for going bald and sharing his story when he has his morning coffee! AND of course this has got me thinking about my next GALA! YES THERE WILL BE ANOTHER GALA! And YES you can help!! hehe I will be holding it again in August! The ball is rolling...hehehe...expect updates soon!
Last night Brian did manage to drag me out of my bed! We went out for a little coffee and chocolate date! It was really special. It got me out of my little rut for a few minutes and did something real! Something other then lie in my bed!
AND today is kind of big in my life! Brian and I have been dating for 6 months today! It is hard to believe. We have been through soooo much together over the last 6 months. I just feel so blessed to have him in my life. Not a minute passes that I don't realize I am lucky to have a man like him. Not many guys could handle the last 6 months with me. They have been HUGE...HARD...and at points HORRIFIC! My treatment is really HARSH...and witnessing someone you care about go through it is NO easy task! I think it is harder to see someone you love in pain then to be in pain yourself. Brian took the chance on me! He didn't run when he found out I had cancer. He stepped in and has walked the journey with me! We have both grown as individuals over the last 6 months but we have also grown together! I LOVE HIM OH SO MUCH!!
So...now it is 7:00AM and I'm not sure what I am going to do all day! lol I'm done with the gossip! I really enjoy having this journal and I'm so touched at how many people check it and follow up on me! I love the guest book and little emails I get! I feel so surrounded by love! Sharing my story is so important to my healing journey. I couldn't do this alone...I wouldn't! THANK YOU SO MUCH TO EVERYONE who listens to my story!
Love,
aShLeY
OK OK...I got these pictures and I just had to put them up! My kitten has fallen in love with the kitties! She is going to be heart broken when they go!
Monday, November 14, 2005 4:24 PM CST Hello Again!
I'm getting used to updating this everyday. I kind of like it...cool to have the record of what is going on!
What a beautiful day! The sunshine is AMAZING! I woke up early today and went for my morning walk and was in AWE with the snow covered mountains...truly beautiful.
I had the best surprise for Day 100!! Diana came from the island for a quick visit! It was so great to see her! I was also blessed with a evening of little pain so I could enjoy it! Many other special things happened yesterday too! Laverne from Healing Hands came by with her perfect Grandson Luke! I got to hold him. He is so precious. He was born early had a rough start to life but he is doing so well. It is such an incredible experience to hold a baby. When I held him all the pain in my stomach disappeared and I was at bliss. I have some picture of him I will put on here.
I also was given my beautiful yellow roses from Brian. They looks so great. It was especially special because I haven't been aloud flowers before Day 100! They make my room look so PERTY! Heidi bought me some Ritter Sport chocolate! OMG..so yummy! Mom made a cake and we had a little low key celebration. I was really happy that we were able to mark the day. It is really significant and I'm glad it didn't just pass by!
I saw the doctor today and my liver is looking better. It is still a little elevated but the Prednisone has made a HUGE difference. I will get to start to cut down on my doses today. I also get to start an anti acid pill because my liver can handle it. The combo of decreasing the Prednisone and the new pill should help to take care of my stomach. I do have T3's...if it doesn't work! YEAH! I will have my liver tested again on Thursday to make sure it doesn't go up as I slow down on the Prednisone.
I have healing touch this afternoon and then I guess more rest. I'm still not up for much...kind of living in a cloud...but I know it will get better as I decrease my Prednisone!
Thanks for all the sweet Day 100 notes!
Love,
Ashley
AND of course some pics...hehe
Sunday, November 13, 2005 8:45AM
DAY 100!!!!
I made it to 100 days! It is hard to believe. I had parties planned and huge celebrations on what I would do to mark this day...and I don't think anything is going to happen because I've been in too much pain. I am hoping for an hour free from pain to eat some cake! hehe That would be nice!
I made it through the night without any pain! This was great! Yesterday I was in pain almost all day. I started taking Tylenol 3's and they stop the pain but totally mess me up! You would have thought I drank a bottle of Tequila yesterday afternoon! Although I must admit it wasn't a bad feeling! hehe
I still have about 1 hour in the morning where I feel good. I take this hour as a blessing and go for a walk. It is a calming time for me and prepares me for the tough day ahead. It means so much to me that I can exercise. I think it really helps with the side effects of the Prednisone. I feel comforted knowing that if I lie in bed all day I at least went for a walk in the morning.
I miss my friends. I haven't been able to see anyone for a while because the pain is too intense for visitors...:(! I also never know how I will be doing minute to minute. It is very taxing emotionally. I'm tired of hurting and just want to do normal things! I am being really careful about colds and stuff right now when I am on the high doses of Prednisone. It is an immune suppressor and I don't need a cold right now. So until my doses are down it is important that I'm not around people who are sick or who have been recently exposed to something. Vaccines are especially important. I can't be around newly vaccinated people. I don't think I will be on these high doses for long but I'm going to be a little cautious because I know my body has enough to deal with without an extra bug! I really appreciate everyone’s phone calls, email and guest book entries! They make me smile!! I am constantly blown away by the amazing support of all the people in my life.
Dr.Barnett is coming home from Italy on Tuesday! YEAH!! What timing for him to go away! hehe I'll tell him to schedule with my body before he takes his next trip. The good news is the doctors at B4 are really good and I know that even when he is away I am in really great care. I also don't think it is a bad idea to get many opinions when it comes to this anyways...
I have some new pictures of Grace! I have loved all the emails and stories people have sent me about their cats. They are such incredible animals. Yesterday I felt miserable and Grace spent the whole day on my lap! Somehow it just made me feel better knowing she chose to sit with me...even when I felt too much pain to pet her! I hope you like the pictures!
Love,
Ashley
Friday, November 11, 2005 6:30PM
Hello,
WHAT A DAY! I went into the hospital today for blood work and an assessment. Last night I was in horrible amounts of pain for many hours. The doctor looked at me today and thinks that I might have an ulcer. She is booking a scope for me next week. She doesn't think GVHD (Graft vs Host Disease) would cause this kind of pain. She then told me that if my liver function was up today she would admit me! AHHH! So...all day long I waited for my liver results. I was so worried...and they just weren't coming back. I phoned the hospital every 30 minutes all day. I finally got a call saying that they have gone down from Wednesday! YEAH! I was going crazy all day not knowing. Now I'm trying to eat foods that help ulcers. They also said I could use T3's!! Woot! I'm so happy because I might have a chance of having relief from the pain. This is quite the adventure. I am happy that my liver counts are going down. The Prednisone makes me pretty sick but at least it is doing its job. Everytime I take the pills I remember that they are saving my life. They are just as important as any chemo I have received. I took my Prednisone a little later today to give myself a couple hours without nausea...we'll see if I will be able to sleep tonight! I have my fingers crossed.
Today Brian and I were able to go out and get Grace a collar! It was so fun picking something out for our perfect kitty! The kittens are doing really well and are at such a cute stage. They are playing and climbing all around. The other day Grace was caught sleeping with then in the play pen! hehehe I will post a picture when I get it!
This is quite the adventure...I never know what is going to happen or how I am going to feel. I am living minute by minute! I am so thankful for everyone who is thinking about me at this critical time and taking care of me!
Love,
Ashley
Thursday, November 10, 2005 9:37AM
Hello again!
Lots of news...lots of updates! I phoned the doctor at 9:00 sharp to get my results. I didn't want to wait for her call. She checked and they are going DOWN!!!! THANK GOD THANK GOD THANK GOD! This is really good news. It means that the Prednisone is starting to work and the attack on my liver is slowing down! This is such a HUGE relief. I am still in large amounts of pain but somehow the pain doesn't feel so bad anymore...I guess it is just isn't as totally scary!
Thank you so much to everyone who signed my guest book and emailed me since my last post! It really meant the world to me to wake up this morning and read that you were all thinking about me!
Love,
Ashley
Hello,
I really need prayers. I have been having severe pains in my liver area. They are not sure what is causing them but most likely it is related to my GVHD. My liver counts are really high and my liver is hurting. I need peace in my body. I pray the Prednisone will take effect and my liver will calm down. I was in the hospital today and they gave my fluids and did blood work. They will phone me tomorrow if my liver counts are higher then Monday. Please keep me and my liver in your thoughts! Thanks :)
Ashley
Monday, November 7, 2005
Hello,
Monday again! I just got back from seeing Dr.Barnett. My liver function is worse this week so we are going to try doubling my Prednisone dose. I also have a rash and signs of GVHD in my mouth. All this worries me and I ask for prayers that my higher Prednisone dose will lower my levels. I will be tested again next Monday. I just want the GVHD to get under control. So far I don't have any physical symptoms of my liver problems. I am on a ton of meds and they aren't easy to tolerate but I've adjusted my diet and I think that is helping me to cope with the Prednisone. Once again we must remember that Dr.Barnett is happy and the GVHD was part of this transplant process. GVHD means GVT! I know my Hodgkin's has been aggressive so it likely needs a big dose of GVT!! hehe
I am getting out more and exercising. It is tons of fun. I love being able to move again. I especially love being outside. I bundle myself up and walk in the rain! Yesterday Marisa, Brian and I went ice skating. That was an adventure since I'm not much of a skater! hehe I think the worse part was the rental skates that killed my feet! After skating we went up Cypress and played in the snow. It was dusk and just stunning up there. They snow was fluffy and clean! It felt so neat to be there! I ask Dr.Barnett if I could go swimming but I'm not aloud because I'm on the Prednisone and it lowers my immune system. Don't want to take any extra risks!
The kittens are doing really well. They are getting stronger by the day. They have even started to use the litter box a little!! I didn't get great pictures but I'll post a few anyways! I'm going to try to get some really good ones this week! I just want to capture how absolutely adorable they are!
Thank you so much for keeping my in your thoughts and reading my webpage!
Love,
Ashley
This is Grace! She looks so big next to the pictures of all the kittens. She still steals my heart! hehe
Feeding time!
Friday, November 4, 2005 1:39 PM CST
Hello,
I am lying in bed...in a quiet house with no one home...listening to the rain. It is pouring down. I am trying to motivate myself to go to the gym but I think I would be too wet to work out by the time I made it there. I'm pretty nervous about going to the gym again. I know it is so important right now but it kind of intimidates me!
I met with Dr.Barnett on Tuesday. He says this is the plan and we wanted GVHD! Before my transplant he told me when I got GVHD he would be happy and I would be miserable! hehe He was right! I hate Prednisone! It has so many nasty side effects. I am doing my best to stay in shape and eat healthy to help reduce long-term problems from it. I guess I shouldn't hate it...Prednisone is saving my liver right now...so I better be grateful!
I went babysitting last night and had soooo much fun! I really want to baby-sit more. I just love hanging out with kids. If anyone needs a babysitter please call me! I have lots of time and would love to take care of your kiddies! I really miss it!
Brian's house is full of kittens again! They have 5 sweeties! They are only 3 weeks old. They have to be fed by a bottle! I just love watching them. They are especially cute when they all curl up and cuddle together when they sleep! They wrap their paws around each other like they are hugging! They will be ready for homes around Christmas if anyone is looking for an adorable kitten! I have a real thing for cats these days. I think they are really healing. Nothing is more relaxing then sitting with a cat on your lap! WOAH...I'm actually turning into a cat person! Grace my kitten that Brian's family so kindly kept..hehe...is doing really well. She is soooo sweet but I think a little jealous of the kitties! I think she might like not being the smallest one around anymore!
Oh..I'm trying to eat a low sodium diet. If anyone knows any good recipes let me know...it is tricky! I have done many diet restrictions before but I've never tried to decrease my sodium...and it seems everything I love to eat is really high is sodium!
Love,
Ashley
Monday, October 31, 2005 6:16 PM CST Monday, October 24, 2005 5:21 PM CDT Whoa, Friday, October 21, 2005 7:40 PM CDT Tuesday, October 18, 2005 1:24 PM CDT Monday, October 10, 2005 7:21 PM CDT Take a deep breath in....and a deep breath out...and remember that God is as close to you as the breath that you breathe. Monday, October 3, 2005 5:41 PM CDT Wednesday, September 28, 2005 4:24 PM CDT Hello Hello Hello!! Monday, September 26, 2005 4:55 PM CDT Hello! Monday, September 19, 2005 6:45 PM CDT Hello!
Wednesday, September 14, 2005 4:32 PM CDT Hello! Tuesday, September 13, 2005 5:30 PM CDT Hello hello hello! Tuesday, September 6, 2005 8:23 PM CDT Hello! Saturday, September 3, 2005 10:56 AM CDT Hello Again! Tuesday, August 30, 2005 10:22 AM CDT Hello,
Friday, August 19, 2005 2:37 PM CDT Hello Everyone!
Hello,
Today has been a very intense day. First...I dressed up in my Alice costume to go to the hospital and fell down the stairs. My back is really sore and it really hurts to walk. And then....I went to the hospital and they thought everything was good so they pulled my Hickman. It came out pretty easily but stung a bit.
And then...I got the huge shock. I got a call from the hospital saying my blood work was good except for my liver function. It was raised quite high. This means that I have GVHD of the liver...EEeeEEeek! I was sitting eating sushi when I found out! I start Cyclosporin again and begin Prednisone today. What a shock?!?! I also will be needing Mg once again because the Cyclosporin causes it to be really low! I really wish I still had my Hickman...but it is gone and we will just have to deal with this without it. I have a liver ultra sound next week. I will be seeing Dr.Barnett tomorrow to talk about everything that is happening. I am really scared. I know GVHD can by extremely dangerous and life threatening. I also know that Prednisone is a nasty drug. I have heard many stories about it in B4. All that said...this means my cancer is also being attacked. We did the transplant to get GVHD. We took me off Cycolsporin to get GVHD...and now that I have it...I'm not so sure I want it! I just need prayers that it can be controlled by the meds and doesn't attack other locations. We want MODERATE GVHD. So another journey begins. Good bye Hodgkin's!!!
Happy Halloween!!!! Eat lots and lots of CANDY! hehe
Ashley
Things have been soooo intense. I have been having a tough time emotionally this last week. Dealing with the deaths of my two friends is really hard. It is also really scary when you are going through cancer treatment yourself!
On Saturday I had a really really amazing day. Brian took me out to Hope. He knows how important it is to me and thought it would be a healthier place for me to be then crying in my bed!!! I went and decided to go for a walk and dedicate it in memory of Randy and Margaret. It was very powerful. I walked the trials and reflected on many great memories. I decided to make a cross in memory of Randy and put it on a rock covered in moss. Randy loved the outdoors and was always hiking! As soon as I put the cross down I looked in the sky and saw the most amazing sight. It was a cloud coloured all the colours of the rainbow. It only last a few seconds...but it was such a sign of hope. It reminds me of the story of Noah and how the rainbow was a sign of the storm being over. After that I continued to walk with a little angel in my hand. On the back it said "Always with you." I carried it and prayed for Margaret. When I got to the point where the river flows the fastest. I said a prayer, kissed the angel, and threw it in the river! I then walked down to the beach beside the river. I took my special crystal that I carry everywhere and carved END CANCER into the sand. I then charged my crystal in the strong flowing river! It was such a healing trip for me.
I went to a young adult discussion group last night and was told something that really changed my faith. I was really angry with God. This last week has been really hard and I was having trouble understanding. A very wise man, Bishop Jim Cruickshank, told me this "Ashley remember that when Margaret died God was the first one to cry." This made so much sense to me and really helped me to know that God did not wish for her to die...or to be in pain. And he hurts when my cancer grows...and he cries with me when I'm sad! This is the God I love.
Today I saw Dr.Barnett and everything is still on track. I was worried because my neck is a little swollen but he says to watch it and not over react. He also said he tested my hormone level...and guess what?...it looks like I am out of menopause! I don't know how this has happened but things are starting to work again!! This is very exciting and will help me to be strong and healthy!! I might get my Hickman out in the next week. Dr.Barnett says that it isn't safe to have it if we aren't using it...not worth the risk. So...things are good on the medical front. Now we just continue to watch for GVHD!
Love always,
Ashley
Hello,
I'm not sure what to write or how to begin. Last night found out that Randy had passed away. Randy was one of those people who you meet and he leaves a mark on your heart and soul. I met him at B4 on the day I was getting my Hickman in. We were instant buddies. Both of us were coming daily and would chat. Randy was a true hero!! He was a firefighter and his disease was a result of his job! Randy died saving so many people over the last 20 years! Randy was athletic and vibrant. He would come for chemo and go hike..kayak..swim..nothing could stop him. Randy's number one thing in his life was his family. His wife and 3 kids meant the world to him. He was the world's best dad! Randy inspired me to suck it up and get out there! To live...to hike and most of all spend time with my family and friends! Randy's funeral was today and I feel deeply blessed to have attended. There were hundreds of fire fighters and many people who were there to celebrate Randy's incredible life. It breaks my heart that Randy has died...It pisses me off that cancer can take away a friend, husband and most of all dad! It isn't fair!
Today I also remembered Margaret. I attended her funeral this afternoon. The church was packed and many people spoke about Margaret's strength, courage and love! She was a model for so many people! Everywhere Margaret went she touched people with her love!
I will miss these two hero's deeply! I will remember them and continue to fight my battle with the strength and courage they both modelled everyday! I will also continue to raise money for the CURE! The cure where no one has to be taken from their family and friends by this horrible disease.
I know Randy and Margaret are together in heaven...free from pain...free from cancer!
Love,
Ashley
Hello!
Sorry I haven't updated in so long...I've been running around like crazy. I'm not sure what I have been doing but I've been busy!
I started Art Therapy at Callanish last week. It is so powerful. I am so excited to go again today. It is amazing what can be expressed and released through art! I have met so many incredible people and heard so many unbelievable stories through Callanish. I feel so blessed to get to go!
I got my latest results about my donor cells. I am still at 94%. I will stop Cyclosporin on Thursday. Soon after that I will reach 100%. I need prayers as my body goes through this transition. I need prayers for no major GVHD and prayers that those cells attack my Hodgkins. I'm nervous about what is about to happen. I have witnessed the trauma's of GVHD at B4. I know I am strong and feel ready to face this next step of my treatment. This is the magical part...the part that could be the cure!!! The whole reason of doing the transplant was to initiate GVHD...so here we go. Dr.Barnett is really happy with my progress and says everything is going just as we planned it.
OH OH OH...I got my Halloween costume. I am going to be Alice in Wonderland! hehe I am so excited! I can't wait for Halloween. I have gone Halloween crazy! I have been working on many decorations! I hope I finish by Halloween!
Brian and I went on a picnic in his truck last night to celebrate 5 great months together. It is hard to believe that it has only been 5 months. We have been through so much together! He continues to be an amazing support as I walk along this CRAZY journey!
Love,
Ashley
I write today deeply saddened with the news of my friend Margaret's passing. Margaret was an inspiration, support and friend to me. She battled cancer for a long time and is now at peace...free from all the horrific pain. I have shed many many tears. I feel so so blessed to have had Margaret in my life. I learned so much about strength and determination from her. She never ever gave up. No matter how hard things got Margaret keep going! She never let cancer control her life. She worked, she exercised, she fundriased and had fun all well going through tough treatments. Margaret's journey was painful and I know now she is in a place that frees her from the pain. It broke my heart that she was hurting. I pray for her friends and family. Margaret will be deeply missed by her friends, family and everyone touched by her AMAZING story! Margaret changed how I think about cancer and changed how I live my life. Words can't express the true beauty the Margaret exhibited each and every day. She was ALWAYS thinking of others and finding ways to help. She brightened the lives of so many people! Margaret's faith was very strong and I know she dances among the angels....free...
Love,
Ashley
Hello!
The Light up the Night event this weekend was so special!!! I am so glad that I got to go! Brian and my dad came with me! I was so happy they were there to support me! And....Dr.Barnett was there...And...he made a speech! I was so proud to be his patient. I think they raised over $130,000! Pretty impressive! It was so cool to see all the people carrying white balloons (survivors). It was amazing how many little kids were there walking with white balloons. It was a very powerful experience. I was so proud to walk 5km! The night was gorgeous without a drop of rain. We walked along the sea wall and watched the sun set! I had the most amazing time!
This weekend we had pet Sunday at church. It was very cool to have everyone bring their pets to be blessed. The church was full! Brian and I brought little Grace. She was very good but pretty nervous about the experience!
Today is day 59! I can't believe it has been 2 months since my transplant...unbelievable! Things are going really really well. My stomach is a bit upset but nothing that they are worried about...just annoying! Lohtar (my B4 buddy) gave me a present today! It was a vest from his lodge in Prince George! I was so excited. He really is such a great friend!
Jen came with Mom and I to the hospital today and then we went to Granville Island. I got some cool stuff to do Halloween crafts. I'm really excited. It will give me something to do! I'm all about Halloween this year...there are so many cool things to do with it!
Tonight I'm going to do something CRAZY! hehe Are you worried?? I'm going to try going back to the gym! WOAH! I'm pretty excited but a little nervous! I haven't been with a Hickman. I talked to Dr.Barnett today and he said that it shouldn't restrict my activities. I'm going to start very very very slow. I don't want to tire myself. I just want to get moving and developing muscle again! I can't wait to slip into my gym gear again! AND I'll get to go with my new ipod!
Please pray for my friend Margaret she needs to be surrounded by love and prayer right now!
I'm off for a rest! Enjoy the fall sun!
Ashley
WOW!! Green Day was AMAZING!!! I was feeling tired and not sure if I wanted to go but it was one of the best shows I have ever seen! The music was great and the band hilarious!!! I'm so glad I got to go!!! Heidi and I sat together and Andrew was on the floor with his friends! I'm no quite up to moshing yet! hehe I saw some wicked hair styles and I must say I missed my mohawk!
I had such a great visit with Paige! We gossiped, laughed and of course shopped! hehe She got me the cutest little lady bug! I'm going to keep it on my purse for good luck! We also went to the Imax and saw Sharks in 3D! Very cool! Did you know whale sharks can be over 60 feet long?? Don't worry...they don't eat people!
I'm so excited for Saturday! I have signed up for another fundraiser! hehe It is the Lymphoma and Leukemia Society's Light up the Night! I think it is going to be an amazing experience. I just raised money for Terry Fox so I'm going in this one for the experience and the exercise! hehe It is a 5km walk around Stanley park at dusk! Survivors carry illuminated white balloons and supporters carry red ones! I think it will be so awesome! It is for all blood cancers! These are the people I see everyday at B4 (leukemia and bone marrow ward)!! I have so many friends that I have met that I will be praying for as I walk! I will also remember David. David was my cancer buddy Matt's step dad. Soon after Matt went into remission for Hodgkin's David was diagnosed with Multiple Myeloma. David went through horrific treatment and was stronger than anyone I have ever met! Whenever I get down I remember David and his strength and courage and I keep going! I fundraise because the treatment isn't good enough yet! I fundraise in memory of super hero's like David! If you wish to support this event go to www.active.com/donate/ltnvan/ashleybrear. NO PRESSURE....I know I do A LOT of fundraising...so donate when works for you!! I don't want to over do the fundraising but this is an event I feel called to attend! OH...and if you want to walk in the walk go to www.lightthenight.org!
LOTS OF LOVE,
Ashelina ballerina (hehe..hopefully one day soon!)
I had a check-up with Dr.Barnett today and it went really well. He is really happy with how I am doing! PHEW! I'm going to have a blood test on Thursday to see what percent of Heidi's cells I am at now! I'm going to be having weekly doctors appointments with Dr.Barnett so he can closely monitor me. I am really happy about this because I know I am in really good care.
Last Friday I was blessed to go hear Bradley Chu speak at Mulgrave. He talked about The Shorn on the Shore Night! It was very moving! He is wise beyond his years! I feel so blessed to know him!!!
Saturday was my dad's special day! It was his birthday! We had a great celebration with very yummy food! We are going to go to Whistler for a weekend as a family! I think that is an awesome gift! hehehe
Yesterday Brian and I spent the day at The Quay. It was gorgeous. We sat outside...looked at the water...and listened to a man sing Elvis songs off key! The best part was this little old couple dancing to the music! It was awesome! We then took the sea bus downtown and wandered around gas town! It was a nice relaxed day!
So...things are going well! Paige is coming to spend the night! YEAH!
Ashley
Finally...17 days after my bone marrow biopsy...I have results. I am at 94 percent donor cells! This is excellent news. Very soon I will be at 100 percent a nd her cells will start to kill my Hodgkin's. In order for this to happen I need to have Graft vs Host where her cells attack my body. No one can predict how much GVHD will occur and it is a bit of a scary time. You need some but not too much! I think the next little while will be tough...from what I have witnessed GVHD isn't easy! It is also a time of great joy and celebration...this is the part of the transplant that can cure me! I feel strong and ready to walk this next part of my journey.
I was blessed with the chance to speak at Banting Middle School last Friday. It was an incredible experience. The students were amazing. The room was silent as I talked and they asked the most wonderful questions. I felt so lucky to share my story with them! And to be able to share how Terry Fox has touched my life! Here is my speech:
"Good Afternoon. My name is Ashley. Many of you may know me as Mr.Brear's daughter. I remember having Terry Fox runs when I was in school and I didn't get it. I hated running and didn't understand why on this day they forced me to do it. I was a dancer...not a runner! Many years later I understand too well. I hope that by talking to you today I might be able to tell you a little bit about why I understand and help you to know just how very important these runs are!
In Sept 2003 I was 19 years old. I was registered for my third year at UBC. I had long blond hair and no idea what was about to happen. I had a lump in my neck...and before I knew it I was diagnosed with CANCER. What?! I was healthy, strong and young...I wasn't suppose to have cancer! Before cancer my life was about partying with my friends, staying up all night and kissing boys! I was diagnosed with Stage 4 Hodgkin's Lymphoma and my life changed immediately. It is a rare cancer of the lymph system. Stage 4 is the most advanced stage. Scans showed it in my neck, chest, lungs and spleen. Hodgkin's is one of the most curable cancers and my biggest fear was not the cancer but of the treatment! Cancer treatment is tough...and when your 19 years old losing your hair is super terrifying! I was my hair! When you lose your hair it allows cancer to enter the room before your name. It becomes a clear symbol of your illness. I was scared. Scared I wasn't even going to be able to look at myself in the mirror! Luckily my brother came up with a plan. His dream was to have a mohawk. AND my mother would not let that happen...but he figured since my hair was already falling out I might be able to do it! And I did...before I knew it I wasn't losing my hair...I was gaining an 8 inch purple and red mohawk! Without cancer I never would have had the chance to sport this amazing hairstyle! And I have many pictures to prove I did it!
Over the past two years I have had 42 chemo treatments, lost my hair 3 times, had 2 bone marrow transplants and spent countless nights in the hospital.
Chemo was a word the foreign to me before I became sick. Now I know all too well what the word means. Chemo can be given my IV or orally. Chemo is strong drugs given to kill the cancer. The problem is it comes with major side effects. When on chemo you deal with hair loss, nausea and vomiting weakened immune system and fatigue! Every chemo is different and affects the patient differently.
One of my favourite parts about going to the hospital is sitting and visiting with the other patients in the room. I have heard the most incredible stories. It is amazing what happens to people when they are fighting for their life. Listening to these stories is inspiring and heart breaking. I have witnessed the power of this horrific disease! There are many amazing treatments out there and many people who are now surviving this disease and thriving but it isn't good enough!! The treatment is harsh and the outcomes unpredictable.
When you have cancer you often feel alone! You look different...and can't do the same activities as your friends. But this summer something amazing happened. My friends organized a fundraiser in honour of me. They gathered 32 brave souls who volunteered to shave their heads! It was so incredible to stand with all these people who realized that raising money for cancer was more important than how they looked. We had a silent auction, band, leg shaving and food! I think that the time of the Terry Fox run is very inspiring. I can't tell you what it means to see millions of people out...making the statement that they want to see a CURE for cancer. It is a sign of HOPE...hope that one day this disease won't kill!
I have a dream of being a Grandmother. I want to have my grandkids on my lap and show them pics of my mohawk, me in the hospital and tell them stories about my battle with cancer. Then they will look at me and say WHAT?? Grandma are you crazy...all you have to do is take a pill and cancer is gone! Joe had it last week! By running today and supporting the Terry Fox Foundation you are making a difference!"
On Sunday Brian and I participated in the Terry Fox run in POCO!! It was awesome!! Around 15,000 people were there! How powerful!! I thank everyone who donated to me!! My total was over $1,000!! Way more then I ever dreamed of raising!! I was deeply touched by the run and even shed a few tears!
Woah..so much to say today!! Here we go...the next stage of this battle begins!
Ashley
I have to write today to talk about my hero! TERRY FOX! When I was a kid...and even a teen I didn't get what the big deal was! Actually I was usually annoyed that I had to run! I hated running and I didn't understand what it was all about! How silly do I feel now! After battling cancer for over 2 years I can't think of anyone more incredible then Terry Fox.
I have been watching every news segment and movie on Terry. His spirit, strength and determination are mind boggling! He ran on one leg...doing marathons every single day...for months!!! Most people wouldn't run one in a life time on two legs. WOW!! And the most amazing thing about Terry was that he did it for others...for all people with cancer! Terry ran for me...he ran for my support group, he ran for everyone in the bone marrow ward...Terry ran for everyone touched by this disease!
I've decided that I better get my butt out of bed and run for everyone with cancer! Least I can do! I'm doing a run in POCO on Sunday. I wanted to go to his home town! If you want to sponsor me you can CLICK HERE So far Terry has raised over $400 million world wide! Lets help make it half a billion!!! His goal was 23 million....I think he did it!
I'm going to be doing a speech at Banting Middle School on Friday and I'll post it on here once I get it written!
Ashley
I haven't written this week because I haven't had any news. I'm still waiting for my cat scan and bone marrow biopsy results. I will likely get them on Thursday.
I got the exciting news yesterday that my mg is high enough that I only have to go in to the hospital 2 days a week. I will be going on Mondays and Thursdays.
I'm feeling pretty good. I've been doing tons of shopping which is always fun. I'm wanting to start an exercise program but I have to talk to the physio about what I can do with a Hickman line. I will have it for a year so I can't use it as an excuse not to exercise!
A sweet baby has been born in Calgary. His name is Luke and he is 5 weeks early. Life so far has not been easy for this little bundle but he is fighting hard! Please pray for baby Luke! His proud Grandma is Laverne who has been my angel giving me healing touch whenever I've needed it!
I'm up for visitors and have lots of free time in the day...so if anyone wants to come over for tea and cookies or meet for lunch let me know!
Love always,
Ashley
So Katja has left! BOOOOOOOOOOOOOOOOOOOOO! I miss her so much already! It was such a gift having her here! My hospital visits aren't the same without her!!! AND....Brian has gone back to work! So...things are a little boring! I know I will adjust but it is tough!
I had a ct scan of my chest today to see what is going on. I'm a little nervous to get the results but it will help the doctors to make their important decisions.
Yesterday Brian and I went to the Aquarium. It was soooo much fun! He had never been before so it was great to be able to take him!
I got something really really really really really amazing in the mail today...it was from Donna of The Waifs!!!!!! They are one of my favourite bands!!!! I listened to their music when I shaved my head this last time. Their music has helped me through many transitions in my life!! Buy one of their cd's. I promise you will LOVE it! My amazing friend Leah wrote to them and Donna wrote back!! She sent me cd's and t-shirts and the nicest note in the world!!! Thank you soooooo much Leah! And a huge thank you to Donna for your AMAZING words and sweet gifts! I will put all the cd's on my ipod and listen to them everyday at the hospital!!! One of my fav's is People who think they can! Kind of fitting to my life!! hehe
Love ya all,
Ashley
It has been quite the week. I have discovered many new lumps. I hate that the cancer can grow so fast. I've met with the doctors and they feel that this is a sign that we need to move quickly and not take months to get me to 100%! I think that this is a sign we needed. The decision of how fast to go is hard...and now we don't have to make it.
I had a bone marrow biopsy yesterday. They did a really great job and it wasn't nearly as scary as I thought it would be. I'm so glad it will done. Now we wait for the results which will tell us what to do next.
I have a wonderful day Thursday. I went to the Spa and fogort about all my worries. I found peace with my new lumps and lots of strength to face this disease! I was feeling tired but that isn't the case now. I'm really ready for this next step of the fight. I feel strong and very hopeful. I'm excited that finally we will be working at destroying the cancer. It is going to be so hard...but I'm tough!! And it is just cancer...lol
Thursday night Katja,Brian and I went to the new drive-in movie. It was sooooooooooo fun! We put mattresses and blankets in the bed of Brian's truck and watched from there! It was a great experience. Katja and I even wore matching pj's! hehehe I slept for most of the movie....the perfect activity for me! hehe
Yesterday I just slept all day from the morphine...but managed to have some energy in the evening...so we had a spa night. We did healing touch, facials and painted out toes! It was totally fun and my face looks great!! Katja goes home on Monday and I'm soooooo sad! I'm going to miss her like CrAzY!! It is going to be tough but we have decided that we need to talk on the phone more...so I think that will be very special!
Today we are going to try to hit the PNE! I've never missed it so I better go today! Thank you so much for all you kind words in my guest book...they keep me smiling! I also thank everyone who reads this and says a pray silently in their heart!!
Love,
Ashley
Sorry it has taken me so long to update. I'm not doing too well. I've been suffering from nausea since Friday and spent most of my time in bed. Yesterday I was able to get out and go for a quick walk. Last week I was doing 1-hour hikes and this week I have trouble making it around the pond by my house. The other thing that is upsetting me is I just found a new lump in my neck. That is so scary. It is a sign that my cancer is growing. It isn't surprising but for the last little bit things have been shrinking so growth is scary. I will talk to the doctors tomorrow. I have my sister’s cells in me so I think they will quickly try to get me to 100 er cells!
So that is the tough stuff...but lots of really neat things have happened since I last updated. I had an amazing mini vacation to Whistler. Brian, Katja and I went up for the night. We had a blast. It was so great to get away and do normal things...with a couple extra naps! hehe
This weekend Sara Healing came and stayed with us. It was soooooo special. Sara is a friend of my sisters and used to be my leader at camp. She is someone who I have always admired and looked up to. She has touched my life very deeply. It was so great to have her here for a visit! I LOVE YOU SARA!!!
A bunch of my girlfriends have gone back to school. It is so tough to say good-bye at a time like this. I'm going to miss them terribly. They are such amazing people and having them on the other side of Canada sucks! I'm very grateful for free long distance. I don't know what I would do without it!
I got to talk to two of Katja's sisters in Slovenia! It was so cool. Their English is AMAZING. I can't wait to go and meet them. I'm hoping I'll get to go there soon! It sounds like the most unbelievable place. Katja is only here for another week and it is going to be horrible saying good-bye. She has been my angel this last month and I'm going to miss her desperately. She has been my nurse and taken so good care of me!
So...that is my life! Up and down...up and down once again!
Ashley
I had a rough couple of days but I feel SUPER today! I was very confused about what was going on but Dr.Barnett met with me today and explained everything! I feel much better! My counts have also recovered! Wooohoooo! I might get to switch from going to the hospital everyday to every other day! Yes! I have tons of pics which I have been meaning to post forever! So...here they are! If you want to see pictures from my Shorn on the Shore night look in the journal history! Today we are off to hike around Rice Lake!
Cavci,
Ashley
My AMAZING sister who donated her cells to save my life! This was taken when I got her cells!
When I got out of the hospital Brian shaved my head! It was the first time I ever had it done with a razor!
Bubbles...bubbles..bubbles...
More bubbles...
Brian and Katja hugging the tree!
A little piece of heaven! Can you see why I love Hope??
Brian and I
Katja and I playing on the slide! WeEeeEEEEeee
Friendly Canadian Bear!
WOW!
My new wig!!
I hope you enjoyed the new pictures!
Tuesday, August 16, 2005 4:00 PM CDT
Hello All!
I am doing fantastic! I have had many great adventures this weekend! I went to Granville Island, a Foam party, Hope and hiking at Lynn Headwaters! I'm feeling really strong. My counts are still really low but they are slowly coming up!! Think about my neutrophils!! They are at 0.1 today!! Better then 0!
My Hickman is being dumb and not working for blood...I had to get poked today and it hurt so bad! I hope it will work tomorrow!
Today we went and got fancy Cupcakes from Denman! It was so much fun! This afternoon we are going wig shopping to get me a new dark brown wig! It should be lots of fun!
We don't have a total yet but we know we raised at least $20,000!!! WOWOWOWOWOWOW!! That is incredible!
Ashley
Saturday, August 13, 2005 9:30 AM CDT WOW WOW WOW!!! Friday, August 12, 2005 8:32 AM CDT Hello EVERYONE, Sunday, July 31, 2005 9:58 AM CDT Hello! Friday, July 29, 2005 10:16 AM CDT Hello All! Monday, July 25, 2005 6:22 PM CDT Hello! Saturday, July 23, 2005 1:16 AM CDT Hello, Sunday, July 17, 2005 4:04 PM CDT HELLO! Tuesday, July 12, 2005 1:35 AM CDT Hello, Friday, July 8, 2005 11:17 AM CDT Hello Folks, Wednesday, July 6, 2005 0:35 AM CDT Hello! Saturday, July 2, 2005 4:22 AM CDT WOW! Wednesday, June 29, 2005 5:33 PM CDT Hello, Sunday, June 26, 2005 7:16 PM CDT Hello Everyone!
Saturday, June 25, 2005 2:21 PM CDT Hello Everyone! Friday, June 24, 2005 2:17 AM CDT Hello, Wednesday, June 22, 2005 1:44 AM CDT Hello! Saturday, June 18, 2005 2:14 PM CDT Hello! Thursday, June 16, 2005 12:09 AM CDT Hello Everyone! Wednesday, June 15, 2005 2:20 AM CDT WOAH... Monday, June 13, 2005 8:38 PM CDT Hello, Saturday, June 11, 2005 11:01 AM CDT Hello, Wednesday, June 8, 2005 8:48 AM CDT Hello Everyone,
Sunday, June 5, 2005 4:29 AM CDT Yellow! Saturday, June 4, 2005 10:14 AM CDT Hello! Thursday, June 2, 2005 2:05 AM CDT Hello Again! Tuesday, May 31, 2005 5:05 PM CDT Hello Folks! Sunday, May 29, 2005 3:03 AM CDT Hello! Saturday, May 28, 2005 11:40 AM CDT It is shrinking...It is shirking...It is shrinking! My pain has stopped and it is getting smaller!! I can't tell you how unbelievably fantastic this feels!! I am so happy they we are doing something about it and it appears to be working! THANK YOU GOD for chemo!
Wednesday, May 25, 2005 2:14 AM CDT Hello!!
Monday, May 23, 2005 11:30 PM CDT Hello Everyone!
Last nights fundraiser was an AMAZING event! It touched my heart. I was so happy to see so many people out and 32 people shave their heads...what an amazing symbol of support! I felt so healthy and full of energy! I can't wait to find out how much we raised! I will hopefully post a total on Monday! It was so great to see so many people who I haven't seen in a LONG time! I was especially happy to see my dear friend Margaret who had just got out of the hospital that day!!! Please hold her in your prayers each and every day! She is so strong and I was so glad that she got to come out!!!
HUGE HUGE HUGE HUGE HUGE thanks to EVERYONE that made this fundraiser happen. I was too sick to plan it but everyone stepped in to support me and make my dream come true! It was perfect...absolutely perfect! AND...I know how much work goes into perfect events! hehe Thank you Steph (You look so hot bald!), Lauren, Mel, Manako, Bradley, Diana, Paige and Iain!! Thank you balders, hairdressers, band ("Sick Days" they are totally awesome and very HOT...check them out at Earls (West Van) on Monday nights!), fire fighters, leg shavers, volunteers, BC Cancer Foundation, my sister Heidi (She is out treasurer and does countless hours of work getting our totals!), thank you donors for the amazing silent auction items, thank you bidders and most of all thank you to everyone who came!!! YEAH!!! Another great memory!!
I'm so grateful for all the people who traveled from around the world to be at the event and participate! Having my family here this week has been a miracle! I love them so much and wish I could see them everyday!!! They keep me smiling...even when they are scattered across Canada!
I was also sooooo happy to see my godchildren Paige and Iain and their mom Diana! It has been way too long and I have missed them from the bottom of my heart! They are remarkable people! The support I get from these 3 people is astounding!!! I feel so blessed to have such amazing god kids! Paige isn't "officially" my goddaughter...but I've adopted her...hehe!
I also got to see all the kids I nanny and LOVE that I haven't seen in so long! I think I have to start booking play dates because OH BOY do I miss them! Seeing them out at my beach party...shaving their heads, wearing keep on swimming bracelets, having fun...made me really miss the world of kids I used to escape to EVERYDAY! But this is something that with a couple phone calls can be fixed! Thanks for coming Bradley, Catie, Sarah, Alex and Tyler!!! I LOVE YOU GUYS!!!
Katja should also be noted as she traveled the FARTHEST....all the way from Slovenia!! Having her stay with me is a miracle. She is my angel and seems to fly into town just when I'm in need of an extra angel! She also makes a great nurse!
I keep thinking of all the people there and want to thank each and every one of you for coming!!!! It meant the world to me! This event gave me new energy and life to get up each day and keep fighting! Keep working on my mission of ending cancer!
If you didn't make it to this event...you can still donate! We have great "Keep on Swimming" bracelets. They are $5 each! We also have cute t-shirts for $25! If you are interested let me know at kosgala@hotmail.com! The bracelets are flying away so don't miss out! They were donated by the incredible Chris and Andria Haines so 100% of the sales goes to the BC Cancer Foundation! Thank you so much for the generous donation and creative idea!
I really could go on FOREVER thanking people! I will post pics on here and on the keep on swimming website! I have to run for my daily hospital visit...day 8!! I will try to be better at updating now that things are a little less CrAzY!!! So...keep on checking!
Oh and by the way...this morning I feel totally healthy!! Amazing what being surrounded by countless friends will do for your health!!
Love,
Ashley
AND I must give a special thanks to my family! Even in this crazy time they worked sooooooo hard! Andrew even WAXED his legs...my gosh...that is LOVE! Dad shaved his head and actually looks really good! He has a great head! Mom was busy making phone calls and pulling everything together! And Heidi....without her and her money skills I would be in HUGE trouble! She does such a great job and will make sure you all get your tax receipts!
One more thank you...I'm sure I'll have more later! Alex Motut made the beautiful invitations! She is such an amazing creative spirit!
Ok Ok..thought of another one! Thank you to the Dekanich family! They initiated the men's leg shaving! It was so hilarious! Lots of blood but some impressive looking legs when the boys finished! I was shocked at how many people ran in to have it done!! I think secretly many guys wait for the chance to have their legs shaved! hehe This added a fun twist to the event! Thank you so much for sponsoring this section of the event!!
ok...really going to the hospital now! lol
Things have been crazy, nuts and insane! Sorry it has taken me so long to update! So much has happened! I don't have long so I will try to sum it up quickly!
Last week I got a terrible infection. My face when puffy, I got a rash, my blood pressure dropped, heart rate soared and I had high fevers and I was admitted immediately into the hospital. It was a very difficult time. I was so sick and the hospital makes me sicker! I was on 24 hour fluids and had to pee 22 times a DAY!! That doesn't leave you well rested! They never found out what the infection was but they suspect it was something from my gut. I was in the hospital for 5 days and received my allo transplant last Friday. It was a totally emotional experience for everyone! Brian stayed with me over night at the hospital for 3 nights and that made a huge difference. He is such an angel!! My friends and family were there everyday holding my hand and helping to keep my spirits up!!
Katja has arrived from Slovenia and it is so fantastic!!! She is so much fun and an unbelievable support! I love her so much and I'm so glad she is here in Canada!
Tonight is the HUGE beach BBQ at Ambelside beach in West Vancouver. Everyone is invited. There will be head shavings, live music, silent auction, activities, food and so much more!!! I really hope everyone can come out. It will be a very special night celebrating life and moving us one step closer to ending cancer FOREVER! If you need info about it today email kosgala@hotmail.com. It starts at 5:00..admission is free! My cousins have come from all over Canada to be here!!! It is so much fun having family here. They are so loving and help me to keep smiling everyday!! My cousin Mike will even be shaving his head! This is a cross Canada event! hehe
I have so much more to say but I have to leave for my daily hospital appointment. I will try to update with more info ASAP!!!
THANKS to everyone who pulled together the BBQ at this difficult time in my life. I'm so happy that it is happening!!! YOU GUYS MEAN THE WORLD TO ME!!
Love,
Ashley
Oh yes...thanks to eveyone who has signed the guest book...I read it everyday!!!
The journey has officially begun. I had my first dose of chemo yesterday. It made me feel off but I wasn't terribly sick. I will be much sicker on Tuesday and Wednesday when I get 2 drugs together. I will also be at the hospital for about 6 hours!!
I was given a beautiful gift the other day from Brian!!! I was so shocked!! He gave me a ring. It is white gold with 7 real diamonds!! It has two hearts connected together!! He really spoils me!! I feel so incredibly loved, cared for and supported!!
Today I go for another dose of the one drug. It only takes about 30 minutes. It is all pretty easy because of my Hickman line. I have no stress about needles and IV's! Life with my Hickman line is going fairly well. I have figured out a plan so I can sleep with it and not wake up! I wrap it in bandages and clip it to the middle of my shirt. It seems to work fairly well! I'm uncertain about bathing. Every nurse tells me to do something different...cover it up...get it wet...put it in a bad! EEK! I don't know what I'm supposed to do!
Today is the AMAZING MISS CHRISTINE BOYLE'S 21st birthday!!! YEAH!! She is an incredible friend and I am soooo very lucky to have her in my life. She has been there for me through all of this...laughing, smiling, and crying! I don't know what I would do without her! She also does make great entries in the guest book!! I love you Christine and hope you have the best birthday ever! You deserve it!!
I'm going to get up and do my make-up. I'm feeling pretty sickly looking and I'll see what magic I can do!! hehe
Love,
Ashley
Have things ever been crazy! I feel like I have been on an emotional roller coaster! UP and down UP and down Up and down! A pretty amazing experience! This week of prep for my transplant has been difficult. I'm very scared and anxious about going into this. This is the first time I've been very anxious about a treatment.
I have had some very special moments! Brian and I spent Tuesday together and had a picnic on the beach. I was determined to get one beach day in before I began all this. It was so warm and we had the best time. The sky was blue, the sun was shinning, the water was..well...not quite blue..hehe...but we were together and that was what was important!
Wednesday night I decided that the most important thing to me was making it to the fireworks. I was worried about getting home because I can't walk very well these days and I knew I would be in for a trek! I also knew that more than anything I wanted to be at English Bay and watch the show! I wasn't going to let anything stop me. Christine, Alex and I had a delicious picnic (very high class...roasted vegetable sandwiches!) and watched the BEST fire works we had ever seen! It was spectacular. I have never been so moved my fire works! We all sat there and watch and felt so comforted...kind of gave you the feeling that the world was good and everything was going to be ok! Very MAGICAL!
Yesterday was a HUGE day for me!! REALLY BIG! I got my Hickman line put in. I was dreading it like I have never dreaded anything in my life. The Hickman line is so symbolic and life changing. This central line affects your quality of life. You aren't aloud to swim or get it wet...very hard in the summer! I have to change the clothes I wear and how I go about my regular activities. I have trouble sleeping because it digs into my chest. I'm constantly worried about caps falling off, tubes getting pulled or infections getting in! This is going to be a really big adjustment for me. It will take some major work to get used to it and come to terms with having tubes coming out of my chest. All this said, a Hickman line is very important! It will save me a lot of trouble. My veins are in horrible shape and iv's are extremely difficult. This allows me to receive 3 things at once...no pokes! It is important for my safety. If I was ever to crash and be in trouble the Hickman could save me. It gives the nurses and doctors easy access. I can very quickly receive life saving blood, platelets, chemo, anti biotics and most importantly Heidi's stem cells! I have to remember that this Hickman line is there to help me. It is there to make my medical treatment easier. It saves my veins...it may just save my life!
I was so grateful yesterday to have my family, Brian and Christine with me as I waited for the surgery. I was terrified and the wait would have been horrific without them. Instead of being nervous and scared I was smiling and laughing...and complaining that I was hungry! I know it isn't the most fun to visit hospitals and watch someone go through this but it means the WORLD to me. I could not do this on my own. I need EVERYONE!! This is so hard but having such amazing support makes it WAY easier...it makes it possible. THANK YOU!!
Last night I made it to Christine's birthday! I was so determined. I wasn't going to let my Hickman surgery hold me back! It was so much fun. Christine has the most amazing friends and that makes her parties GREAT! I'm not going to waste time at home because I'm not feeling 100%!! I'm alive now and I'm going to live!! I want to try to do as much as I can throughout this treatment. I know it won't be easy but the more I do the better I feel!
I also know the importance of taking care of myself and balance. I have to set my priorities and only do things that bring me energy and fill me! I have been so blessed to have been taken in the arms of the Healing Touch crew. I'm receiving Healing Hands daily and it changes my life! It gives me time to relax and heal my soul! I can't even describe how much it means to me!!
Tomorrow I begin chemo. I'm scared to start because there is no turning back. This treatment is HIGH risk and super tough! It is a step up from anything I have done in the past. It is also exciting. This is my chance at a cure...not a short remission but a life long cure!! This is also my chance to do something that could save others in the future. By going ahead with this transplant and taking the risk I will help them learn about mini allo transplants and maybe it will save others lives. It will also means lots of time in the hospital and many chances to help others going through treatment. I can't wait to hear all the stories...and maybe share mine!
So today...I'm going to spend the day with Brian. We are going out for lunch and then to the hospital to get my dressing changed. I'm so lucky to have him!! I know all this must be very hard to deal with!! He has stepped up to the plate and is there for me. He makes me feel so good. I love him from the bottom of my heart! I'm so blessed.....
Ashley
I'm getting pretty nervous about this transplant. I've started all the pretransplant tests. I did a 24hr urine sample, dental check up, ECG, blood work and a chest x-ray today! BUSY BUSY! I have tests and check-ups all week. I guess it is good they are keeping me busy!
I'm really lucky to be receiving Healing Hands everyday! It is such an amazing thing. It really gives me time everyday to escape all this craziness and reflect and be present. I am sooo grateful for it! It is something that is so healing for ME! I always finish feeling so spoiled and good! It is an AMAZING experience!
My arms are still really sore from my chemo the other week! It is soooo frustrating. I just want to feel well for this week before I go into this tough time. Oh well...at least it is sunny out! I thought the summer was never going to come. I'm so happy I can wear my summer clothes.
Plans for the BBQ beach party are going really well. The head shavers are raising HUGE amounts of money! I'm so grateful for the dedication and determination of the team of people going under the raiser!! I feel very proud!! We are still looking for silent auction items....email kosgala@hotmail.com!
Tonight I have healing touch and then Hell's Kitchen is on!! YIPPPPPPEEE!! It is getting close to the end....very exciting!
Ashley
I haven't updated in a bit because things have been crazy. On Monday night I found a new lump in my neck. This was so incredibly scary....it was a clear sign the chemo didn't work. I can't believe I have hit a point where my cancer doesn't respond to chemo. I saw Dr.Barnett and he said he would do the transplant if I want to take the risk. He said I need to know that we aren't going into it under ideal circumstances and they are going to try to evoke Graft vs. Host and that it is a very risky transplant. I don't have a doubt in my mind. I am doing the transplant!!! This is my chance! I pray to God that my cancer will stay under control long enough for the transplant to kick in! It is going to be a scary couple of months. I'm really nervous but I'm also excited. These transplants have saved the lives of TONS of people! They do WORK! I will be incredibly sick but this is my chance at a cure! Not controlling the cancer but curing it!! My transplant process will start on July 29th...one week today! I start by having 5 days of immune suppressing chemo. I have August 4th to rest and then I receive Heidi's stem cells on August 5th. I will then have a month where I will go into the hospital regularly to be monitored, as my counts will be very low. As soon as my counts recover I will be put on immune suppressing chemo again. Slowly my bone marrow will be destroyed and my sister’s immune system will replace it. This will take 1-2 months. One day I will hit 100% Heidi's stem cells. This is where things get scary. At this point you have GVHD. This is where Heidi's cells recognized my body as foreign and attack it. You want some but not too much....they have no way of predicting how much you will have. Dr.Barnett says he wishes he had a magic wand to created moderate GVHD! At this point we will also have Graft vs. Tumor. THIS IS WHAT WE WANT! Heidi's cells will march in and kick my cancers ASS!!! It is a really complicated process and this is the best I can do to some it up!
I have had terrible pains in my veins from the Vinblastine. It is really intense and difficult to deal with. I've been taking T3's but my body doesn't tolerate them very well. My hands are so weak and I have trouble doing many things. I can't open things or write. It is very frustrating. My red blood cell count is also low so I'm very tired.
I have had many really great moments this week! I'm so thankful for all you people who make me smile...you know who you are!!! No matter how bad things get my friends and family keep me a float!
Brian's family is kitty sitting! I got to play with the 4 kittens yesterday! They are ADORABLE!! I think I need something like a kitten to help me get through the next couple of months. I'm thinking about what might work...
Plans for the Beach BBQ are going really really well! It is going to be a very special day! I'm so excited. Stephanie, Lauren and Mel have stepped in to organize the event and make my dream a reality!! If you are interested in helping email them at kosgala@hotmail.com. We are looking for silent auction items. We are going to have a small auction of 20 items. We are looking for restaurant gift certificates, electronics, hotel gift certificates, services, jewelry, condos at Whistler. If you have anything or know of contacts drop them an email and they will send you our donation letters and information! One thing I REALLY REALLY REALLY want is an ipod....any connections?!?!?! hehe
1 more week...CRAZY!!! I can't believe it is actually happening!!!
Ashley
FRIDAY WAS A GREAT DAY!! I was able to receive chemo because my counts were high and my tumor didn't grow over the week! I was so happy! My platelets were 482 and my wbc's 6.5!! Totally amazing! The visualization must have helped. I will keep doing it so that hopefully my counts won't drop too low with this chemo.
The Shore club night was a HUGE success! I would like to thank Marisa for all her hard work! She thought of the idea and made it happen. She is in Osoyoos and I MISS her like CRAZY!!! I would also like to thank The Heat for coming and putting on an amazing performance. It was great of them to donate their time!! The Shore was so fabulous to give us the space and support the event. I was unbelievably touched when all the bar tenders bought keep on swimming t-shirts and shaved their heads. I felt so supported! And then I have to thank EVERYONE who came out! (And who sold tickets to their friends)!! The place was full and had an amazing feeling. It was great to come from chemo to a place filled with so many people supporting cancer research. I also have to thank Heidi, Jen, Mom, Lisa and Barbara for organizing the printing and selling of t-shirts! They are $25 and look really great. If you want to buy one let me know. They will be on sale at the Aug.12 beach party! Another thank you to Douglas Balled Advocates of Dance who donated a remarkable $500!!!!! TOTALLY AMAZING!! THANK YOU THANK YOU THANK YOU!!!!
I had a blast. It was so great to see everyone!! I was whipping around trying to get a chance to talk to everyone! I felt so healthy and so alive! Fundraising is so neat because it makes me feel so supported as a cancer patient! I'm touched every time that someone takes some of their hard earned money and gives it to cancer research! Obviously I'm very passionate about the cause! Cancer is a HORRIFIC disease and needs to be stopped! The treatment is good but needs to be better! Chemo is tough and bone marrow transplants are HELL!! Although I don't mind going through it if it means I can live a little longer! I will do ANYTHING!! I appreciate all the research that has been done and has given me several months of remission. I have seen too many times what cancer has done to people’s lives and I will continue to raise money to find a cure!! I long for the day when cancer is treated like a simple infection. You are given some pills to take for 10 days with hardly any side effects and then you are done! You keep your hair. You keep your strength. You can go to work. You can party with your friends. You don't have to worry about it killing you! AND MOST IMPORTANTLY...when it is gone...it doesn't come back!! One day....
To see pics from The shore night click here
I'm feeling really strong. I have lots of energy and I'm out and about! My hands are weak from the Vinblastine. My fingertips tingle and I have trouble holding things. I went out for sushi yesterday and had to use a fork because I couldn't hold the chopsticks! SO EMBARRASING!!! lol Oh well...I'm lucky that the side effects are as minimal as they are! I know I have to appreciate everyday that I'm feeling well because I have a really tough treatment coming up!!
Katja is coming from Slovenia on Aug.1!! I can't believe it is so soon. It will be so great to have her back again! She is staying until Sept.5!! I hope that I have many strong days to take her around Vancouver! I know we will have an amazing visit even if it is sitting in hospital waiting rooms together!! hehe For those of you who don't know Katja she is one of my closest friends. I met her when I was in France 2 summers ago. She came out and spent last August with us and is coming back again!!! She is an incredible person and I can't wait for Aug.1!!!
Harry Potter is out!! OH YEAH!! I'm only reading one chapter a day so I can savor it!! hehe
Ok...I'm going to have a nap! I'm still recovering from Friday night!! hehe
THANKS AGAIN TO EVERYONE!!! It means more to me then you could ever imagine! I know the fundraising is a HUGE part of my healing...both physically and emotionally!!
Love,
ash
I'm pretty tired so I'll keep this short! I met with Dr.Barnett today and it was really hopeful. He will still do the transplant even if we can't achieve a complete remission. This was the greatest news ever! I was terrified he was going to say we shouldn't do it! The transplant is my only hope! I'm so glad that he still believes in me and is optimistic in its results. He went over the plan and the predicted schedule. It is going to take a long time and I'll be sick for quite some time. They don't know how I will react to my sister’s stem cells and how long it will take for my body to adjust....some people adjust in months and in others it takes many years. I will just have to have faith and go with it! I will explain more about what I learned when I can keep my eyes open! hehe
Thank you so much for everyone’s amazing support!! I am so truly blessed. I'm grateful for the awesome messages in my guest book. They touch my heart and keep my hope alive!!
The Shore night is coming up really fast. Email me at kosgala@hotmail.com for tickets. I need to know if you are coming before Friday night!
sleepy chick....zzzzzzz
Yesterday was the CRAZIEST day ever! I woke up and found out that Brian was in the hospital and then a couple hours later heard that Mel was in emergency. I was so worried about them ALL day. It turns out Brian's foot was badly infected from his surgery and he needed MAJOR pain killers and antibiotics. The antibiotics have kicked in and he is doing much better! I spent the night at his house to take care of him!! hehe. And his mom was so great and made us a fancy breakfast!! Super MOM! I think she has been through a lot in the last couple of days!! Mel still doesn't know what caused her stomach pains. I will talk to her today and see if she has heard anything.
My doctor’s appointment wasn't until 4:45!! I was sick with worry. I was so scared what she was going to tell me. Good news...or Bad news???? Bad news is my WBC count is too low for me to have chemo today. It is .4 and the cut off is .5. So I have to wait another week. Good news is all the visualization on my platelets worked...they were an amazing 180!!! A switch from the 47 last week! So you know what this means folk??? More visualization! It works...so number one, imagine my tumor shrinking. The one they are measuring is in my neck on the right side and about 1.5 cm. Next work on WBC’s and the rest of my blood. Might sound wacky but hey I'll try anything!! The plan is to try Vinblastine again next Friday if my tumor stays stable. If it grows we will go to plan B! I meet with Dr.Barnett on Monday to talk about the transplant and come up with a strategy. It will be an extremely important meeting.
Keep on Swimming's "Shorn on the Shore" BBQ is coming up really fast!! Stephanie has been AMAZING and taken this on!! I'm soooooooooooooooo thankful!! She is doing an incredible job. She is in need of help for our mini silent auction and beach blanket bingo. If you have some time and are interested in helping (but don't want to shave your head) this is a great opportunity! If you know of anyone who could donate we are looking for 15-20 silent auction items and 20 small prizes for bingo and 2 large prizes (+$100)! Let me know if you can donate or want to help coordinate. It is low key and shouldn't be too much work!
Tickets for the Shore club night need to be purchased a head of time. Let me know if you are coming out!! I will have chemo on the 15th so I really hope I can make it!! As long as I don't end up in emergency I'll be there! hehe
Today I'm going to the hospital with Brian to get his antibiotics. I'm so glad I don't have chemo so I can be with him!
Thanks for all your support!! Keep signing the guest book...I love to see who has been here!! Did you notice we have had over 10,000 hits!! WOAH!! Impressive!!
LOVE ALWAYS,
ASHLEY
It has been a while since I've updated and this is good news! I've been running around having TONS of fun! I have lots of energy after my blood transfusion and physically feel really strong. I went to the ice cream place in Vancouver with 208 flavours! They have the craziest stuff! The weirdest one I tasted was dandelion root...wouldn't recommend it!
Brian had his surgery yesterday and I've been playing nurse! I'm sorry that he has to be in pain but I'm happy that I'm healthy and strong to be able to help him through it. I love being able to get his pills or pillows and do whatever he needs! I just wish I could take his pain away!!! I know it won't last for too long and then his toe will be pain free forever! He has been there for me through a crazy couple of months and I would do anything for him! The best part is he really appreciates it! I feel so loved!! I'm very very lucky!
I'm getting nervous about Thursday. I really hope my counts are up!!! If they are up then there are so many more options. I'm feeling really strong so maybe that is a good sign. Everyone says I look so healthy. I don't get it...I don't really believe that I am sick! Maybe it is just a mistake!!
I don't think my tumor has changed in size...it hasn't shrunk and I pray to God that it isn't bigger. It is hard to tell because I feel it so often I don't know if there is a change. I think they will have to try something other then Vinblastine....although it is a pretty easy drug to tolerate (minus the chest pains and trips to emergency..hehe)!
Fundraisers...
SHORE NIGHT JULY 15th! Tix $10!!
Shorn on the Shore...beach bbq and head shaving on Aug.12! We have 15 people shaving there heads and I want 20...so 5 more!!! BALD IS BEAUTIFUL!! Thank you so much to the 15 brave people who have already signed up!!!
HELP END CANCER!!!!!
-Ashley-
Things have been totally nuts once again! I had my blood transfusion and chemo yesterday and it went really well. We had the best room! Jen and my entire family came. I met an amazing cancer survivor named Anne! It was her very first chemo! She was there with her two daughters and they are all angels! We all got along really well. They even bought me a guardian angel to watch over me...boy oh boy did I need it! I feel so blessed to have got to share a chemo party with them.
It was on the way home that things turned bad. All of a sudden I had an intense pain in the middle of my chest. It hurt to take deep breaths. We phoned the Cancer Agency and they said to go to emerg. I wanted in pain for hours and hours and hours with no one telling me what could cause my pain. They were taking it very seriously and seemed really concerned...so that scared me. They were worried my wbc's were low and I had a life threatening infection or that it was a blood clot. We finally got blood results and that ruled out the infection but not the clot. They decided that my risk was VERY high because I had a blood clot before and they put me on Heparin and decided that I should spend the night in emerg. In the morning they did more blood work and a CT-scan. It showed nothing!! YEAH! So my life was no longer in immediate danger. We talked with a doctor at the cancer agency and she thinks the pain is from my chemo drug Vinblastine! I guess this means it is busy at work!!! My platelets are really really low and I'm worried I won't even be aloud Vinblastine next week. I have to hope that they don't drop but increase!!!!
Today was so incredible!! One of the best days! Christine came over to visit at the hospital and then came back to my place for a bit! Brian also came over. Brian participated in the wacky Canada Day scavenger hunt I created around Lynn Valley!! We had a great time and it was an awesome way to take a minute to look at how beautiful and amazing CANADA is!! It was totally fun! We then watched Hitch...pretty funny! After that it was off to Tim Horton’s and then a quick visit at the Shore!! I'm a little tired now but it is 2:37am! hehehe I should be tired! Other wise I'm feeling really great! Thanks for all your prayers as I went through that very scary time!!!
I hoping my bone marrow will get its butt in gear and start working overtime!
Fundraisers:
Club Night at the Shore: July 15, $10, All money goes to BC Cancer Foundation! Buy your tickets ASAP!!
If you are brave and need a free professional hair cut! You can get it done at my Beach Party and Head Shaving on Aug.12! Pledge forms are almost ready. Give me a couple days after being in the hospital! The more people we have the better! Come on...it is a free haircut!! We even have a professional hairdresser so it will be done well! If you are interested in helping to plan the Beach party email me!
So that is my crazy story of the day!! I'm hoping tomorrow will be a calmer day! Today turned out pretty darn good...so I think my chances are great! :)
*ASHLEY*
I didn't have a very good doctors appointment today. My blood is worse then last week. My platelets have gone from 80 to 60. 80 is the cut off for a safe level. This means I can't receive the CHOP chemo again. It is too hard on my system. Dr. Sehn thinks my body is still recovering from the auto bone marrow transplant in November. My tumor is also larger which is really scary. It shows how aggressive my disease is. So...the plan is to give me a blood transfusion tomorrow. This is to increase my rbc’s, which are also really low. The rbc's explain why I have been feeling so tired! I think I will feel better after the transfusion. They are going to give me one chemo drug that doesn't have an effect on the blood. It is Vinblastine and I had it with my original treatment. Hopefully it will get things under control. We need to get things under control so we can do the mini allo transplant. The good news is I don't have to do CHOP again. It was really tough and had such an influence on my emotions. I will be WAY less sick with the Vinblastine.
I have found the website of an inspirational young girl. Her name is Emma and she is 6! She has been struggling with her health since she was very little. She is so brave and has an amazing view on life! I found her caringbridge website and was immediately touched! She writes some of her journal entries and they are profound and hilarious! She has the greatest views on life. I think we can all learn something from Emma and her struggles. If you want to read about a true angel click here. I have added her to my favorites and to my prayer list! You have to go and read what she writes and you will understand what I am talking about!!!
Yesterday was SOOOOOOOOOOOOO much fun! Day trips are great! I think they are very healing. Brian and I went to Harrison Hot Springs. It is only just past Chilliwack...not too far! We lay on the beach...had an adventure in a paddle boat (next time we are renting something with a motor!)...soaked in the healing mineral pool, ate dinner and saw the sand sculptures! It is a beautiful little town. I could have easily spent a few days there. There are tons of things we didn't get to see! It is great to be physically well enough to do these things! It is really healing!
Today I had to recover from my big adventures yesterday. I've spent the entire day relaxing or sleeping! Big days totally ware me out...BUT they are totally worth it!
Suzette emailed me and told me about a story she is doing on the Center for Integrated Healing. It will be on Monday at 5:30 on Global National News (Kevin Newman is anchor)--it will be at the end of the 30 minute show probably. Suzette talked to one of the co-founders, Dr.Gunn, and he is interested in taking me as a patient! I have always been interested in the CIH and this is just the push I needed to do it! I am going to phone him first thing tomorrow morning and set up an appointment! If you want to know more about it you can go to there website by clicking here. I am really excited!
Love,
Ashley
I had a great day yesterday. I met with Janie at Callanish! She is so great! I really think everyone should have a therapist. She really has helped me to work through my fears and come to terms with everything I'm going through. I can't describe her but she just radiates kindness and love! Callinish is such an incredible place! She even gave me cookies to take home!
Last night Mel, Lauren and Chris came over and we made dinner! We made Pad Thai! It turned out fantastic. I have tons of leftovers so I'll be eating it for days. It was great to just sit around and visit. We laughed a lot! Christine is leaving for camp :(...actually she left today! I will miss her terribly this summer! She will be coming back to visit!
I read a great story in the Vancouver Sun Today. It is about a 17 year old who battled Leukemia all year and without attending classes managed to graduate high school! I am blown AWAY! What strength and determination!!! If you get the Vancouver Sun you should look for it...I think it was like B7...not too sure! An inspirational woman! The only part I didn't like is they asked her what her chances were! WHAT A DUMB QUESTION!! Don't ask someone who just spent a year battling for her life that!! SHE IS ALIVE TODAY and that is what matters! Statistics are stupid! No one knows when he or she is going to die. I think life and death stats should never ever be told to a patient! They are guesses...guesses that can destroy HOPE! One quote I like says, "Never put a period where God only intended a comma." I think stats can turn comma's into periods! HOPE is the most important thing...
Today Brian and I are off on an adventure! We are going to Harrison Hot Springs for the day! I will write and tell you all about it!
I'm going to spend this week working on the make-up project and doing lots of work for the up coming fundraisers! Any more people interested in shaving their heads?!?!?!
Talk to ya later,
Ashley
I met with Dr.Sehn today and got my blood test results. It turns out that my platelets are too low to do chemo tomorrow. They are right on the cut off and would be dangerously low if they were to give me chemo tomorrow. She said that it is very intensive treatment and my bone marrow is most likely still slow from my transplant! I'm upset because my tumor is coming back in my neck. I'm scared to have a week with it growing again! Dr.Sehn said I should not be concerned and to call her if there is any major changes. She is still happy with my progress. I'm just scared because I know a few days ago there was nothing there!!
I don't know why this has happened but I have to trust that it is meant to be. I have lost a lot of weight and this will give me a week to refuel my body. I will fill it with immune boosters and everything it needs to be strong! I'm also going to exercise and prepare my mind for this next big fight!
I've been given a week and I must appreciate that and LIVE...smile...laugh...fundraise!!
I ask you all to help me this week by picturing my cancer and imagining it gone! Kill it any way you like! If I can't have chemo I'm going to try something else. So if you have a moment...help me to visualize my body cancer free!! Picture me healthy (Oh and with long dark brown hair!!!) I know it sounds wacky but it helped with my wbc's before so I'm going to try with the cancer!
Thank you soooooo much!!!!
Ashley
I had a pretty busy weekend and quite a bit of fun! On Saturday morning was Heidi's muffin breakfast! It was a HUGE success raising around $1000!!! Totally amazing! Thank you so much to everyone who baked, ate and donated! It was totally amazing!! I couldn't believe she and Nicole raised so much! Everyone’s generosity inspires me!
On Saturday night it was my dear friend Andria's birthday! It was so much fun! She has amazing friends and I had a great time chatting with them and swapping stories! I met this on girl Laura who happens to be a make-up artist! I told her about Mel and my dream to do make-up for cancer patients and she says she is in!!! She can get us product and teach us what to do!!! SOOOO INCREDIBLE! Doing make-up has been a dream of mine for many years so it will be neat to see it finally happen. I don't know how much I can do right now because the chemo has caused nerve problems in my hands...but I'm happy that my dream is happening and I'll join in as soon as my fingers are normal again! Later that night I went and met a bunch of people at The Royal! It was Christine's good bye party...yes...she is going to camp for the summer :(! But she will be back to visit and party at the fundraisers!
Sunday Brian and I had a relaxing day together. My energy has been pretty low and after Saturday I needed to chill. We went for a walk along the river and actually saw sunshine! It was awesome!
Today I went to Bowen to visit Christine. She is on a retreat and invited me up to come see her! It was really really special. We got to have some great talks surrounded by the beauty of Bowen! Tonight Brian came over and we watched Hell's Kitchen our favorite show! It is on Monday's at 9:00 on Ch.28 (just incase you want to watch..hehe) but we couldn't watch it last night so we watched it today! Shocking what happened!! I'm not really into TV but this show caught my eye! It is pretty brutal but that makes it entertaining!
Emotionally I've been having a tough time. I'm no longer depressed from the Prednisone but I have to deal with all the stuff it brought up...stuff I hadn't thought about before! When you think about it what I'm going through is terrifying! I'm using all the coping skills I've learned and doing tons of reflection! I'm learning lots everyday! It is hard stuff to think about but facing these kinds of fears is pretty powerful! I've been trying to read stories of HOPE from survivors and this quote from a Lymphoma survivor stood out: "You're not dying this minute, so live this minute and the next and put them together and you've got an hour. And damn it, you never know where it's gonna' lead. You could have a lifetime of minutes." I also have Janie for Callanish House to talk to and she is so incredible! I don't know what I would do without her! She is blessed with an amazing gift to be supportive and gives me so many tools to cope with everything I'm going through!
More amazing news! My Granddad's Rock-a-Thon in Montreal raised $3600!!! I WAS STUNNED!!!! Thank you so much to my Granddad who put in countless hours organizing his dream event!!! WOAH!!! And thank you to everyone who donated and supported the event! What a great idea...rocking in rocking chairs to raise money for cancer! I think it was very creative!
Please keep my friend Margaret in your prayers! She is in my cancer support group and has gone into the hospital this week! Please offer her prayers of healing and support!
Love,
Ashley
I just wrote my whole entry and then deleted it! GO ME!! Another blonde moment!
I did it!!! I'm bald again!! It feels so good. It is pretty traumatizing having your hair fall out. It fell out sooo fast. There was hair everywhere...in my mouth, on my pillow, all over my clothes, in my hat and on my face! I hated it. The thought of seeing my hair thinning was too much for me to handle! We had a very special head shaving party! Mel, Lauren, Christine and I got together to celebrate and shave heads! YES HEADS!! The BRAVE Christine Boyle decided to shave her head with me! I totally admire her! It meant the world to me to have her sitting there holding my hand as we both got our heads shaved. Our society puts so much pressure on appearance and hair! It takes guts and courage to rebel against that and be a female with a shaved head! Mel the AMAZING make-up artist did our make-up so we would look our best with our newly shaved heads! Lauren was BRAVE and took on the role of hairdresser! She cut the dreads! Andrew has shaved my head 2 times before and he did the shaving once again! We played music and it was a true celebration! My whole family was there supporting me! I think it takes guts to watch that! It was so freeing! I felt a weight being lifted off of me! I LOVE my bald head! I actually prefer it to the curly hair! After we shaved our heads we dressed up in FUNKY clothes and went to Milestones! We also did spend some time playing dress-up with my wigs! I ordered mushrooms and fries! hehe I'm just starting to eat again and I eat what my body wants! The waitress looked at me like I was nuts! She was totally awesome! I love when you get a chance to connect with really neat people! The night wouldn't have been complete without stopping in at The Shore! We went and danced and celebrated! It was a night I will never forget! And several people asked me why I shaved my head!! I love that because it means I don't look sick!! YEAH!
If this story of head shaving has inspired you...pick up a pledge form! We are having a beach party and head shaving on Aug.12! It will be to mark the date of that gala and do something really special! If you need some convincing here are some reasons why bald is great....
Bald is great because you don't have to worry about split ends!
Bald is great because you can ride in a convertible and not worry about snarls!
Bald is great because you can hug your kids when they come home with head lice!
Bald is great because you don't have to worry about being dragged off by cavemen!
Bald is great because you can walk in the rain and only your friends look like drowned rats!
Bald is great because you can raise money for cancer research!
Bald is great because you can walk in solidarity with people facing cancer!!
So if you are BRAVE and decide you are too sexy for your hair...let me know! The more people we have the better! We hope to get some media coverage and make this another special event!
Heidi had her muffin breakfast to raise money for the Canadian Cancer Foundation! It was a huge success and tons of people came out to support it! Thank you so much to Heidi for putting it on and everyone who made muffins and came out! It was a really neat fundraiser!
I was interviewed by the BC Cancer Foundation yesterday. They are doing a profile on me for their annual report that goes out to all their donors! I'm really excited because the goal of the article is to inspire people to fundraise!! Fundraising has been so important to me and really brought so much to my life that I hope I will be able to inspire others to go out and do it! And one-day cancer will be a thing of the past! I feel so incredibly blessed to be able to share my story!!
Some Pics!
What a week?!?! It has been so hard...one of the hardest of my life! I have learned a lot and had some pretty amazing things happen. I haven't eaten and it is taking a toll on my body. I have lost a lot of weight and I'm going to force myself to eat today...or at least drink. I looked up foods that help depression and elevate mood. If I'm going to eat I might as well eat the right stuff!
Yesterday I received the most precious gift in the mail. It was from my cousin, Kathleen. Growing up I heard stories about Kathleen's best friend Val! Val was fighting cancer for a long time. She fought her battle with grace, strength and humor! She brought so much to many peoples lives. I grew up inspired and touched by Val. Val once said that she would never wish she didn't have cancer. I remember being first diagnosed and thinking she was nuts. My mom said...I guess we are going to learn what she meant! I also remember thinking...I hope I can capture the spirit of Val! Kathleen wrote me a beautiful letter telling me how much I am like Val! WOW! This is the best compliment in the world. With the letter she included some of Val's jewelry. Some purple earring with fish…hehe…perfect… and a beautiful necklace! I will wear them with pride and great honour!!! I feel so totally blessed to have grown up hearing Val's story! She is a huge part of me and has totally helped me to battle cancer!
I also got an AMAZING card in the mail and I'm going to type it out:
Dear Ashley,
We just wanted to let you know that we think you're an amazing person. Your positive energy and outlook on life have made a difference in the lives of many patients and staff in the program. There are not too many people in this world who can take what would be a very negative life experience, and turn it into an opportunity for personal growth and rediscovery. You are truly an inspiring person and we think that you will go on to do very special and extraordinary things in your life. In fact, you already are.. Thanks for being you. Sincerely, Alan and Sarah (Social Workers- BMT/Leukemia -VGH)
WOW!!! I couldn't believe it! What beautiful words. What a blessing to have someone write and tell you something like that! I'm so deeply touched. I feel so blessed that through my cancer I have been able to inspire patients and staff. This means the world to me! And being able to do that totally makes my battle with cancer worthwhile...if I can help just one person by sharing my story then it is all worth it! I think stories are amazing things and I feel so honoured to share mine!!
I want to thank everyone who has stuck by me through this difficult week. It has been one of the hardest of my life! I know it is so hard to see someone you love sad! I'm so grateful that you all understand and have sat with me as I cried. I LOVE YOU ALL SO MUCH!!! I couldn't make it through this without you! I also thank everyone who has signed my guest book. On the really hard days I sit there reading it over and over again. Knowing that I am surrounded by so much love and support helps me get through anything! I also send prayers out for anyone suffering depression! It is a terrible disease and I honour the journey people travel with it!
Love always,
Ashley
Oh yes...my hair is falling out like CRAZY!! I will be shaving it tomorrow...I will post some beautiful bald pics for you all!
Things have been so crazy. I have been on an emotional roller coaster. Sunday night I freaked out and I have been up and down since then. I thought I was totally losing it! I cried and cried and cried. I was so scared, confused and sad. I have never felt this way throughout the entire two years I have been battling cancer. I always just had a smile on my face and did it. All of a sudden I wasn't smiling and I wasn't happy. It was so sudden that I knew it had to be drug related. I phoned Dr.Sehn and she confirmed that it was an effect of going off of Prednisone. I wish someone had warned me. Prednisone is a stimulant and sometimes when people go off high doses quickly they crash. This is what happened to me. I've heard stories about other people describing it as being hit by a truck. The good news is it doesn't last forever. I just have to ride it out. I stopped eating on Sunday. I just have no appetite at all. I forced myself to drink some Gatorade today to keep me going. Mom made me eat some vegetables and a few pieces of fruit. It is so odd not being hungry. When I was on Prednisone I thought about food 24 hours a day. I have lost a lot of weight and I'm going to have to make sure that I force myself to eat. I want to make sure that my weight is up for my transplant. Maybe I'll have to go to the Granville room for a brownie!
I did manage to go to the gym today! It was the first time in months. I was really careful and didn't push myself. I was actually really impressed with how much my muscles remembered. It felt really good to be working out again. I really miss it. I had gotten really strong and was making great progress with Phil (Back on Track Fitness). I realized today that I have such incredible gym knowledge from all my sessions. It is really helpful because I know how to adapt to do what my body can handle. I think exercising is really good for my depression.
Lauren stopped by for a visit! I love it when people come by...even just for a few minutes! No matter how hard things are I always feel better when a friend comes over.
Brian and I went to see The Longest Yard! It was GREAT! Totally hilarious...and this is coming from someone suffering from depression! lol If you want a good laugh check it out!
I want to thank everyone for helping me through this HARD time. I know it isn't easy and I'm so grateful for everyone who has stuck by me! It means the world to me! THANK YOU THANK YOU THANK YOU!!!
ASHLEY
The Shore night is coming up!! I am sooooo excited to be in a place filled with people supporting cancer research. It is going to be the best feeling! Don't miss out! And this event is for everyone over 19! It is going to be a great band and fun for all ages! Parents...this is a chance to see where your kids hang out!! hehe
I had the most AMAZING weekend. I went to Hope and it was the greatest experience. I love it there! It is so calm and peaceful. The trails are so beautiful. I was totally taken away. I don't think I have ever seen anything so stunning. I think it is partly the time of year. Everything is so green from months of rain. And the people are awesome...what a different life? It was so nice to escape from the city and enjoy a day in a small town. It really felt like a vacation. Last night I went to Sarah McLachlan with Brain. I got tickets from the BC Cancer Foundation. It was so nice of them to think of me. She was really good and played an amazing set of songs!
Today I woke up very scared. All of a sudden I thought about what I'm going through and it is scary. I've never really been scared. I haven't thought about it. I just do it...I think it is good for me to think about it a little. I had a great weekend and now I just need some time to reflect and process all this crazy stuff that is going on in my life. And another thing...my hair started falling out today. I was kind of hoping it wouldn't happen…silly really…but you never know. I'm going to have a very special head shaving night with Lauren, Christine and Mel. The BRAVE Christine Boyle is going to shave her head with me! I'm nervous but I've done it before and I'll be happy to wear my "I'm too sexy for my hair shirt" again.
So I need prayers for strength. I know I've been down this road before and I'll do it again but it isn't easy!
Love,
Ashley
WOW...I had a great day yesterday! I was blessed with getting to meet an amazing person! Her name is Teresa and she is fighting Hodgkin’s. I went to give her a Stem Cell Bouquet as she begins her tough treatment. We met through my YACN group and have been emailing for a few weeks. She is so brave and has a truly incredible story. I was so lucky to get to connect with her and her husband. It was a really powerful experience. She needs lots of prayers as she goes through her bone marrow transplant!
Last night Brian took me out for dinner! It was the best food I have ever had! NOT JOKING! We went to the Boathouse and I had vegetable penne! It was so much fun to go downtown and sit looking at the ocean! We live in the most beautiful city in the world! I was thinking that I felt like I was on vacation...so awesome! After dinner we went to The Shore to entertain Marisa and the other staff! We were the only people there not being paid! hehe I was still happy to visit everyone again. I missed that place! Later Brian and I drove up Cypress and sat and looked at the city lights. Once again I was in AWE by our fabulous city!
I still feel a little sick and my energy isn't back yet but I'm on the road to repair. I'm so happy to be out of bed! Everything takes a lot of effort and I feel sick but at least I can move! I know that slowly in the next few days I will start to be myself again! I did do some pretty classic "Ashley" moments last night! Lets just say...never ever ever ask me for directions! I don't know my way out of my house!!! I was born a blonde...and I still have my moments!
Today I'm going to Hope! Brian needs to pick up some stuff so I'm going along for a drive in the truck! I will NEVER pass up a ride in a HOT truck! hehe
We are getting our tickets for The Shore night so I'll start selling them ASAP! It is going to be sooo much fun!!
Ashley
It is DAY 14!!!!!!! YEAH!!!! I did it...I did it...I did it!!! I just took my last set of chemo pills! I'm glad I got them in early so I can start to feel well again! 14 days straight of chemo is HARD! These drugs have hit my body really hard. I've had over 175 pills in the last 2 weeks. I'm so grateful to have a couple weeks off! I have big plans to PARTY this weekend...so pray that the energy I need to do it comes!
I haven't updated for a few days because my life hasn't been too eventful! hehehe I mostly just sleep and lie in bed thinking about what to do! I wake up super early, which makes for REALLY REALLY REALLY long days! I'm so thankful for all my friends who stop by to visit and call and keep me entertained! I know I'm not tons of fun these days but I promise party Ashley will be back for these next 2 weeks! YIPPPEEEEE!
This chemo has been really successful and I know what to expect for the next round. I think we have done a really good job at managing the side effects! Everyone has been so great at getting me all my wacky cravings! hehehe
I talked to Dr.Barnett yesterday and we are going to meet to talk about the mini allo transplant. So far I know very little about it and how I will be expected to respond. I don't want to find out information on my own. I want to wait and see what he has to tell me about it. I know he will put a positive spin on things! He is the best and I always feel so great after talking to him. It will be good to have an idea of what the next couple of months are going to look like!
The party at the Shore is happening on July 15th and it is going to be HUGE! I want everyone to come out! We will hopefully even have our t-shirts for sale. They look so awesome! They are black with silver writing! They are going to sell out fast! I'm really excited to hear Bruce's band, The Heat! I know they will put on an awesome show. This fundraiser is for everyone over 19! Andrew will be 19 so I'm expecting him to be there with all his friends! hehe! Tickets are $10 and I encourage you to buy one to support the night even if you can't make it! Maybe pass it on to a friend! OH BOY...I'm so excited! hehe
On another fundraising note, since I seem to be a little bit fundraising excited right now, we are going to have head shavings at the beach party this summer! So...if you are interested in going bald for cancer...I have a list of reasons why bald is great...hehe...let me know and I will get you a pledge form! The sooner you can start getting donations the more money your beautiful locks will make! It is going to be held on August 12th!
So...I'm great...and happy to be done chemo for a bit!! WOOOHOOOOO!!! THANK YOU EVERYONE FOR ALL YOUR SUPPORT THROUGH MY CHEMO!!
Love,
Ashley
I had a very very very special night! I was honoured with being invited to walk the luminary lap at the Coquitlam Relay for Life to raise money for the Canadian Cancer Foundation. My mom, dad, Brian and I joined Judy Jackson (A Super Cancer FIGHTER) and her family for this special lap! Candles were lit and everyone walked in silence sharing the memories of all who had been touched by cancer. It was so powerful! I lit a candle for some people who have touched my life through cancer. I also lit one for some people who are courageously fighting the battle right now! It is no easy journey and I wish they energy and strength! This was a powerful experience and I will always remember it! One especially touching moment was when I was writing on my candles and I looked over to see a 4-year-old boy writing "In memory of my daddy." This is why we are fighting folks!! The Relay for Life is an incredible cause and I encourage you to support Heidi as she does it in a couple of weeks! I will post her website on here!
Tonight is the fundraiser concert at Ryerson! I hope to see some of you out for some amazing music! We may even have a slide show from last year’s gala!
Love Always,
Ashley
Day 10!! Slowly making it through these 14 days of really tough chemo! I can't wait for all the exciting things I will do when I get a couple weeks off! Yesterday I was in my own little world. I hardly know what happened. I had dreams to go to Margaret's BBQ or to the Shore but I hardly made it off the couch! Thank you Brian for sitting with me! hehe I know I'm not much fun on days like that!
I feel a little bit better today and might hold off the Adivan. I think it is what makes me totally wacky!
Chemo was all right on Thursday. It didn't go as smoothly as others. My veins were acting terrible and I turned into the human pincushion. I just tried to meditate and relax during the whole situation. For everyone who knows it, I used the Tree of Life Meditation. It is very powerful at grounding you really quickly.
Between my blood work and chemo I went and visited with Karin. Her counts are really low right now and this time is very hard! My prayers are with her every second of every day. I can't wait for her to be on the other side of this! She deserves to feel well again! Keep on Swimming Babe!
The morning before I had chemo I woke up feeling fantastic. I took the opportunity to seize the day and get out of the house. The sun was shinning and we walked the West Van Sea wall. It was soooo amazing! We are so lucky to live so close to the ocean. After our walk and special visit we went out for the best pancakes! YUMMM! It was the perfect way to spend getting ready for chemo! Thanks Heidi!!
Before chemo I wanted to get in one more meal so we went to the regular sushi place and filled our bellies! It is really good and pretty cheap!
I guess that brings us back to today! I'm still feeling really happy and excited that this chemo is one step closer to be done!
I really really hope to be at the fundraiser tomorrow night! I promise it will be amazing! Details once again: PS More announcements on the fundraiser side! Sunday June 5th is another prefundraiser! It is a benefit concert held at Ryerson United (2195 West 45th Avenue, Vancouver). My friend Dan Mangan will be playing and the Ryerson Gospel Choir will perform. It should be a spectacular evening of music and fellowship! You are all welcome to come out! Admission is by donation and it begins at 7:30pm. The money will go to Keep on Swimming and the Youth and Young Adult Bursaries fund! If you have any questions email me! I know this will be a super night! Hope to see everyone there!
Ashley
I'm doing so great tonight so I thought I would write about it!! I had a rough day...starting to go house crazy! I even jogged around for a bit and tried to do low blood pressure friendly exercises! I talked to Dr.Sehn and she said that I'm going to do 2 cycles of the salvage chemo. I'm ok with this. I think that it is important that they get as much of the cancer as they possibly can. The 14 days of chemo is hard on my mind. I like to be active and giving that up for a couple weeks isn't easy. Although I am so thankful for nights like tonight when I just don't feel sick at all!
Christine slept over last night and we had a great time chatting and knitting. I pulled out my purple scarf I was working on years ago...maybe I'll actually finish it now!
Tonight Brian came over and helped me make a stem cell bouquet for my friend Teresa who is in the hospital for a stem cell transplant! She is just beginning this journey and needs lots of positive energy! I got to see Brian’s new DVD for his truck…very cool! I still can’t get over the fact that you can watch DVD’s in a car! CRAZY! What is next??? Coffee cups?! hehehe It is just past midnight and I did the midnight snack full out tonight! I think my body knows what is coming tomorrow and wants to stock up! My belly is totally full of great stuff.
Chemo tomorrow is at 3:45....Jen, Bruce and my family will be coming with me for this chemo party!
LOVE YOU ALL!
Ashley
PS More announcements on the fundraiser side! Sunday June 5th is another prefundraiser! It is a benefit concert held at Ryerson United (2195 West 45th Avenue, Vancouver). My friend Dan Mangan will be playing and the Ryerson Gospel Choir will perform. It should be a spectacular evening of music and fellowship! You are all welcome to come out! Admission is by donation and it begins at 7:30pm. The money will go to Keep on Swimming and the Youth and Young Adult Bursaries fund! If you have any questions email me! I know this will be a super night! Hope to see everyone there!
I've been doing pretty well! Chemo is no walk in the park but I'm making it through! Recently I've been dealing with Thrush (an infection in the mouth) and low blood pressure! The hardest thing for me is not being active. I hate sitting in bed all day! The great news is the chemo has done its job and I can no longer feel a lump in my neck. I'm also am no longer in pain and not coughing!
I've had to make a HUGE decision about my Gala! I've decided to postpone it till the winter! I don't think there is enough time to pull it together for August without a lot of stress! This event is still happening and I don't want to lose the momentum! We have silent auction letters and I want donations to come in!! This just means it will be bigger and better!!! August 12th should remain on your calendar as well. We will be hosting a HUGE beach party fundraiser to celebrate and raise money for cancer research!
More announcements on the fundraiser side! Sunday June 5th is another prefundraiser! It is a benefit concert held at Ryerson United (2195 West 45th Avenue, Vancouver). My friend Dan Mangan will be playing and the Ryerson Gospel Choir will perform. It should be a spectacular evening of music and fellowship! You are all welcome to come out! Admission is by donation and it begins at 7:30pm. The money will go to Keep on Swimming and the Youth and Young Adult Bursaries fund! If you have any questions email me! I know this will be a super night! Hope to see everyone there!
Ashley
I am doing really really well. I'm nervous to say it but I have tolerated this chemo really well so far. I've been really tired and slept most of today. The sleep is very restful and peaceful. I feel super happy and content. I almost fell like I'm in a constant state of meditation. The greatest feeling is to feel my tumor shrinking. It has gone from over 10cm of inflamed area to smaller than a pea! Pretty impressive!!! The pain has stopped 100% in my neck and almost totally gone from my chest. I have also been coughing WAY less. It is truly amazing what can happen in a few days! I'm getting better!!! I hope that I will continue to breeze through these next couple of weeks!
I love every minute spent in the sun with my AMAZING friends and family! You are the best!
Love,
ashley
I am feeling really strong. I'm scared to say it but I haven't had any nausea yet! I've been pretty sleepy...keep falling asleep on people...hehe...sorry about that!! I'm hoping that today I will get to go and enjoy the sunshine!
Today is a very very special day because I get to see my dearest friend Melanie who just got home from a year in Thailand! I have missed her with my whole heart and just can't wait to hug her and swap stories!! It will be amazing!
Keeping Strong,
-Ash-
This is a pic from chemo!!
Today was the BIG day!! I started chemo! Finally I am starting to kill this silly cancer once and for all! So far I am feeling really good! I had a chemo paaaarty with Andrew, Bruce, Heidi, my mom and me of course! The cancer supa star! It was tons of fun! I had a great time seeing all my nurses...even though they weren't so happy to see me back again! I went to the patio and but a nemo in the pond! I've been meaning to do that for months! I was reminded of a story...the first time I ever went for chemo this man was in my room. He was sitting in the corner causing trouble...with a puppy on his lap! He looked at me and said "Don't worry...this is a great place...you will love it...I've been coming for over 30 years!" EEEEEEK! But I get it now and it has only been 2!
Now I'm watching tv with Brian and eating lots of food...so I can't be that sick! hehe! I'm going to be on oral pills for 2 weeks and they are supposed to mess me up so we will just wait and she what happens!
Oh...I got to see Karin today and she looked so strong!!! It totally made me smile to see her! She is such a fighter! She got her stem cells back and I pray she will live cancer free from now on!!!
Love,
Ashley
I am home from camp! It was very very wet and pretty darn cold! I was pretty tired on Saturday but rested tons and was full of energy on Sunday! The theme of the retreat was Super Heroes! It was totally awesome. One day the kids had an open microphone and they shared their stories. It was very powerful to hear about their heroes and I may have shed a couple tears! hehe It was so fantastic to be away with friends and running around not having to think about the weeks to come. Everyone was so supportive and I had many great chats. I'm pretty scared about doing the whole chemo thing again. It is hard and I'm working on ways to make it as fun as possible! Bruce has signed up for the first chemo PPPPPPPaaaaaaaaaarrty! It will be tomorrow or Wednesday. Jen Jen is going to try to come next week! Watch out cancer....
After camp I came home, had a nap, and showered! After dinner, Brian and I went for a walk in Lynn Canyon. It was great to get to see the river rushing and soooo powerful! I imagine my chemo like the river, rushing through my body, clearing it out! After the walk we watched some killer mountain biking videos and Napoleon Dynamite! Hilarious! It is about time I saw that movie!
I'm super happy and just savoring every moment that I feel good!
-Ashley-
If you click on the pictures they will get bigger!
Friday, May 20, 2005 2:50 AM CDT Hello Everyone!
Tuesday, May 17, 2005 5:02 PM CDT Hello!
Monday, May 16, 2005 5:33 PM CDT Hmmmmmmmmm.... Sunday, May 15, 2005 3:48 PM CDT Yo!
Saturday, May 14, 2005 3:39 PM CDT Hello!!
Friday, May 13, 2005 10:05 PM CDT Hey... Thursday, May 12, 2005 7:50 PM CDT Hello All, Tuesday, May 10, 2005 1:57 PM CDT I just got a call from Dr.Sehn. They had the Lymphoma conference and everyone agreed that regrowth is occurring. It is only seen in the middle of my chest and in the right side of my neck. They recommend a PET scan be done to confirm this. It is booked for 7:30 on Thursday morning. We should find out the results on Friday. If no growth shows up in my lungs, liver and spleen they may consider just doing radiation. This is far less risky then the experimental mini allo transplant. It is possible that the PET scan may not show cancer in my lung, spleen and liver and it may be there (So please hope that if it is there it will show up)...we will have important decisions to make.
Monday, May 9, 2005 5:12 PM CDT Hello Again, Wednesday, May 4, 2005 11:42 AM CDT Hello Everyone,
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Today has been an AMAZING and emotion filled day! It began with a meeting with my doctors at 10:00. The meeting was to decide if I wanted to try the experimental mini allo transplant. It was really really hard to sit there and hear the facts. I still can't believe that I have a very aggressive cancer inside my body! After a year and a half, I still can't believe it! I was really blessed that I had a clear decision in my head. I'm a FIGHTER! I'm not giving up now. I'm going to try the mini allo transplant. If it has worked for someone then it can work for me. And we will know it has worked when I go into the clinic holding a baby 10 years from now! I am on a waiting list to start chemo and expect to start on Tuesday or Wednesday. It will be a 4 week treatment to shrink the disease and hold it back long enough to do the transplant! I will start the transplant procedure in the middle of June. No one knows what that time will look like and we will just have to wait and see!
After the doctors I went for lunch with my family. All 5 of us were there and it was really special. We went to my FAVOURITE restaurant the Macaroni Grill! How could you not love a restaurant where you get to colour with crayons?!
From lunch I rushed to get my nails done with Lauren! This was HUGE because I've been waiting months for them to grow out after my transplant. I got a french manicure and they look fabulous!
After lunch it was time for make-up! I met Andria at Holt Renfrew and we were all glammed up!! We left looking and feeling like movie stars. I also heard the story of an employee who is fighting Leukemia. Her name is Angie and she is in need of positive energy!
Why did you get your nails done and make-up??....a question you might ask!! It was all for something really really special! Andria Haines, a dear friend of mine, nominated me for the YWCA Young Woman of Distinction! This is a HUGE honour and a lot of work was put in by Andria and everyone who supported my nomination. The banquet was at the Bayshore and I was only going to go looking my best! hehe Can't look sick!!! WHAT A NIGHT?! Wow! It was an evening filled with emotion. It was like the Academy awards. Sitting in a room filled with lights and cameras and people dressed in their best...waiting to see who won! It was torture! lol Just look at Andria's face in the pic below. I think it sums it up! We waited and waited and waited some more! We heard the stories of some of the most AMAZING people in Vancouver. I couldn't believe that I was nominated! I was blessed to speak with the most caring person I have ever met. Her name is Ellen and she is better known as "Street Mom". She has dedicated her life to feeding the youth and homeless on the downtown streets. Every single day she hands out over 500 sandwiches. She is the mom that most of these kids long for! Totally inspirational...and there I was sharing my story with her. She can relate because her sister has aggressive Leukemia and has just relapsed. Her name is Shirley and she needs prayers. After speaking "mom" handed me a purple ring. She said, "Wear this and know that I am praying for you!" It was purple!!! My favourite colour. I was talking to my mentor and she was going to pray for me! I will wear the ring and pray for Shirley everytime I look at it! I will also wear it as a symbol of true love and compassion! Ellen is a saint and I feel so blessed to have been able to swap stories with her!
After all the waiting it was announced and I won!!! It was unbelievable! I had to make a speech in front of 1,000 people who were standing cheering for me! And of course nothing happens smoothly for Ashley! I was so excited that I won that I popped the strap of my dress! I had to make a speech with the fear that I was gong to flash 1,000 people!! It is a moment I will never forget! Tons of tears and pure joy! I got to share my story! I have no idea what I said! I didn't prepare anything and I just spoke from my heart! I spoke of the love and growth that cancer has brought to my life! I do remember one quote I mentioned. The quote was by Mother Theresa and it was "God doesn't give you anything you can't handle, I just wish he didn't trust me so much!" The evening also helped to clarify something else. I have been debating about my Gala and after this night I know it has to happen!!! No matter how sick I am, Aug.12 is going to be the Keep on Swimming Gala! I will need all the help I can get, as I will be too ill to do it. This Gala is about overcoming cancer and that is what is going to happen! This relapse isn't going to stop it! If you are interested please let me know!
So hear I sit, a Young Woman of Distinction! I feel truly blessed! I have had an amazing week and I'm filled to the brim with hope and joy! I'm going to Gambier Island for the weekend to lead at May Retreat. I am very excited and will write all about it when I get home!
I LOVE YOU ALL SO MUCH! I'm so thankful for my life and the chance to share my story! Thanks for listening!
-Ashley-
I'm slowly getting better. I still haven't eaten very much! But everyone knows how much I LOVE to eat...so I'll catch up really soon! Just ask Marisa about the night when I was hungry at the Shore!!! hehehe
I went to Healing Hands last night and it was FANTASTIC! I feel soooooo very lucky to receive it! I couldn't imagine a better feeling! I also got to see Karin which was very special. She has her stem cell transplant coming up so please send energy her way!! She is a member of my YACN that meets at Callanish House. Click on the links to see the websites! I just learned how to do that!! Sooooooo cool...thanks to Brian the Computer Master!
I made cookies today!! YUM YUM YUM! I can't eat them but they smell good!
Oh yes.... medical stuff...I almost forgot...I am meeting with Dr.Barnett and Dr.Sehn on Thursday at 10:00.
Movie night tonight...OH YEAH!
-Ashley-
I just got off the phone with Dr.Sehn and spots were found on my liver as well as in my chest and neck. This means that radiation is not an option for me. I will meet with the doctors this week to see if I want to try the mini allo transplant or not. This is going to be really tough folks...
-ash-
I'm doing SUPER folks! I got up and had a shower and got dressed...threw my silly sweats in the wash...did my hair...put on my make-up...and I feel great! Once a very wise man once taught me an important lesson. He said, "Ashley, always remember it is better to look good then feel good!" I have lived by this lesson. When picking shoes to go out I wear the ones that look good and not the comfy ones! Some days it is tough...esp. when you are sick but when you look good you feel good! hehe So today I fixed myself up and I feel great!
Lauren came over and we made super cool earrings! I'm wearing them right now! It was so great to see someone in real life! I feel like I've been caged up for the past few days and I was starting to go a little bit crazy!
The one great thing about being sick is it makes you appreciate being well! I'm thankful for today and feeling somewhat healthy again!!
I will hopefully get my PET scan results tomorrow. I'm a little bit nervous but I also want to know. Watch out cancer...I'm gonna get ya!!!!
I think I'm gonna go for a walk to the stream and then maybe watch a movie! This sure beats starring at the wall! hehe Maybe tomorrow I can hit the bar or maybe I'll just go to back flipping!
Thank you to everyone who has signed my guest book! It means so much to read all the super sweet things you write…totally makes me smile!
-Ashley-
I am feeling a million times better today! I went to the hospital for more fluids and they told me I have a bacterial infection called Clostridium difficile (C-diff). It isn't a fun one...so avoid it at all costs!!! They have put me on antibiotics and took out my IV. They said that I don't need to go back tomorrow as long as I get enough fluids. My blood pressure is still low but in the normal range. I was able to walk to the car and I don't feel dizzy like yesterday! I'm loving the popsicles!! It is a definite treat when you don't eat sugar!!
I think I'll be in bed for the next couple of days.... waiting for the antibiotics to kick in...but at least I don't feel soooo bad! I'm so glad that we called the doctor yesterday and they checked me out right away. I think I could have been WAY sicker if they didn't get me on fluids and antibiotics.
I'm mad because I was suppose to go to a metal concert, with my friend Jake, tonight...but it doesn't look like that will be happening!! OH WELL...maybe I'll get to wear my fishnets another night!
-Ashley-
Oh yes...take a look at my friends' websites! These are two of the most AMAZING chicks I have ever met!!! I feel sooooo lucky to have them in my life!
www2.caringbridge.org/canada/karin/
www2.caringbridge.org/canada/margaret/
What a day I have had?!?! BIG NEWS: I didn't get the PET scan results. The radiologist who reads them is at a conference. We expect to hear sometime on Monday...more waiting!
I am sooooo soooooo very sick. I have been throwing up all day. I can't keep anything down. I saw 3 doctors today and they decided I needed IV fluids, antibiotics, and anti nausea. I was in B4 for hours and hours...throwing up whenever I had the strength to get out of bed! :( They gave me the choice of staying over night or going home. I decided I would probably sleep better in my own bed (with my mommy close by). They left the IV in my arm and I'll go back in the morning. I have an emergency number in case I need to go back sooner. I feel absolutely awful!!! I can barely move and I'm suprised I can type!
I have never felt this sick without chemo.....I just hope it doesn't last too long! I had to stop writing to go throw up! My stomach is totally empty and I'm throwing up bile. I keep trying to drink Gatorade and eat posicles so I have something to throw up!
I'm gonna rest and hope this is a 24hour bug!
-Ashley-
I had my PET scan this morning and it was an interesting experience....I had to lie totally still for 1 hour! By the end I was going crazy....
I then went to healing touch. I was helping and I had to sit down because I felt really dizzy. I assumed it was from the drug they gave me to calm me down at the PET scan. I sat down and expected it to pass. I went out for lunch with Bruce and we had a great time...laughing and causing trouble with our LOUD voices in the restaurant. We then went for a bit of shopping and I realized I really wasn't feeling well....still I assumed it was from the drug this morning.
I came home and took my temp and I have a fever. I don't know what this is about and it scares me that it might be related to my cancer. I'm so tired of feeling sick and I haven't even begun treatment. My cough is gone and now I have a fever!!
I did get some really exciting news. My Grandparents are going to cover the costs of my PET scan!! THIS IS TOTALLY AMAZING. I was worried about the cost and how we were going to do it! I just let it go and prayed that it would work out. I knew I had no choice but to do it....amazing how things just work out!!! Thank you so much Grandma and Granddad!!! You are the best!!!
Love,
Ashley
I guess this means we just wait some more....The idea that I might just need to go through radiation sounds hopeful and less scary then the allo transplant. I'm also nervous about having to make big decisions...and I hope we will decide on the right thing! You want to make sure you KILL the cancer but you don't want to take unnecessary risk!
-Ashley-
I met with Dr.Barnett on Thursday and he sounds very hopeful! His plan is to do a mini allo transplant. He says that this has the possibility of curing me! GREAT NEWS!
Tomorrow all my doctors are meeting at the Cancer Agency for a Lymphoma conference. They will review my case and decide on a treatment plan. I will be happy to know a plan. It is pretty hard living with uncertainty...not knowing what my future holds.
I have a TERRIBLE cough and have spent the entire weekend in bed! YUCK! I hope it will go away soon! It would be so nice to be better by Wed. night so I could go to the YACN support group at Callanish House.
Thanks for all your thoughts and prayers!
Ashley
This is my first entry! I'm in total shock. Yesterday I was diagnosed with cancer for the 3rd time! I can't believe it and I'm not sure what this means. I know I will have to have really tough treatment if I am going to beat this again! I ask you to keep my family,friends and doctors in your prayers.
Love,
Ashley
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