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Monday, May 7, 2007 10:21 PM CDT
Things are still going well here. I've switched over to clinic visits & blood work every other month (from monthly check-ups and blood work). I'm also finishing up two prerequisites for the accelerated nursing program at the University of Rochester. I haven't applied yet (I've been meaning to for a while), I'm slow getting all the paper work done, but the whole application will be in by the end of this month... keep your fingers crossed for me!
For any young adults who read this, and you're in the NY area, there's a young adult overnight at camp good days coming up June 22nd to 23rd. It's a retreat just for our age group, so if you're at all interested in it, send me an e-mail at lmnop_17@yahoo.com or go to www.campgooddays.org
Someone that I was inspired by while going through treatment passed away today. She had been battling Hodgkin's disease on and off since 2001. She was only 22 years old. Alese, you were and will continue to be an inspiration to me and many others. www.alesecoco.org
Tuesday, April 3, 2007 2:59 PM CDT Hello, I just wanted to update and let everyone know that this week (April 1st- April 7th) is Young Adult Cancer Awareness week... Here's a little blurb from planetcancer.org that talks a little bit about young adults with cancer, and why there should be a little more focus on this group: Tuesday, March 13, 2007 5:41 PM CDT Thought I would do a quick journal... Things are going really well. On Thursday I had my 4 months post treatment check-up, so far, so good! I'm really feeling better and better each day, which is such a great feeling. For a while I forgot what it even felt like to be able to get up and not be worried about making it through the whole day without needing a nap. Now, it's almost hard to remember how bad I really felt (almost!). In two weeks I have an appointment to check out the hips and to see how they're doing.
Wednesday, January 3, 2007 9:16 AM CST It's been a LONG, LONG time since my last update. A LOT has happened since. Again, I AM DONE WITH TREATMENT!!! WHOOOHOO! Also, my family and my best friend Ashlee threw a surprise-finished with treatment party for me at the beginning of December. I was shocked at the amount of friends and family friends that were at the party. Thank you to everyone for attending. Also, I've had my one month check-up, and everything went well. On Thursday, I have my two-month check-up, and by the way things are going, I'm positive that it will go well as well. Today, I have bone scans to check how my hips are doing. And then Thursday I may start my new bone medicine, as long as it is cleared by my insurance company. I also finished all of my undergrad classes, it's not official yet, but I am a college graduate! I just need to transfer the rest of my credits back to Binghamton. Monday, October 30, 2006 10:13 AM CST So, I'm officially DONE with treatment. I took my last dose of 6mp on Wednesday, last dose of methotrexate on Thursday, and then followed that with some champagne to CELEBRATE!!!
Tuesday, October 10, 2006 10:31 PM CDT Friday, September 22, 2006 3:29 PM CDT Last weekend I went to Boston for my Grandpa's 80th birthday party. It was a great mini-trip to see my whole family - grandparents, cousins, aunts, and uncles. I always love visiting Boston because I get to see everyone.
Tuesday, August 22, 2006 4:22 PM CDT UPDATE 8/26/06:
Thursday, July 27, 2006 12:56 AM CDT It's been a while since my last update... So, I figured I would get another one in. It's been a little bit busy around here, but in a good way. Last Thursday was my last intrathecal chemo (chemo into my spine) EVER!!! Usually I get headaches from the treatment, but my NP changed the needle she normally uses to a different type and I had NO headaches! Although, I did wake up in the middle of the procedure, but I didn't feel a thing and they immediately put me back to sleep.
Tuesday, June 27, 2006 4:22 PM CDT Another update this week, I know it's a record :)
Sunday, June 25, 2006 6:28 PM CDT Hey Everyone, Friday, June 9, 2006 5:14 PM CDT It's been a few weeks since I last updated. Since then, I've been to Las Vegas for a few days with my boyfriend Paul and his two sisters Beth and Emily. We stayed at the Bellagio, it was my first time there and I had a great time. I would have to say my favorite thing we did while there was go to the Cirque du soleil show "O", it was amazing... Can't wait to go back again!
Friday, June 9, 2006 5:14 PM CDT It's been a few weeks since I last updated. Since then, I've been to Las Vegas for a few days with my boyfriend Paul and his two sisters Beth and Emily. We stayed at the Bellagio, it was my first time there and I had a great time... Can't wait to go back again! Sunday, May 7, 2006 8:26 PM CDT Last week my old high school track coach invited me to come to the high school to watch the Hilton run-a-thon, which they were conducting to raise money for the Ronald McDonald House, and they were donating the money in my name... I really appreciate everyone's efforts, so, I would like to give a huge THANK YOU to all the Hilton High School track team members who participated in the run-a-thon. You guys did a great job.
Sunday, April 30, 2006 3:50 PM CDT Update 5/1/06
Saturday, April 8, 2006 9:59 AM CDT Hi Everyone, Sunday, March 19, 2006 9:15 AM CST It's a few days late, but Happy St. Patricks Day! Last weekend, March 11th was the St. Patricks Day parade here in Rochester, so Paul came in and he and a few friends and I all went to the parade in Rochester and then to the bars to celebrate ( I am 25% Irish! of course I had to celebrate), I'm so glad I was feeling well enough to go out, because I had such a great time. Wednesday, March 1, 2006 10:56 AM CST Hey Everyone, Sunday, February 5, 2006 10:14 PM CST Hey Everyone,
Tuesday, January 10, 2006 6:15 PM CST Alright, so we got home Sunday at 5:00am from the cruise and we had soo much fun! Thanks again Grandmama and Papa for this vacation, I will never forget it. I'm going to try and figure out how to post some pictures from the cruise for everyone to see in the next few days. I changed the main page picture, this picture was taken during the cruise. And I put a picture of my dad, grandmama, papa and I from the cruise on the pictures page.
Saturday, December 24, 2005 8:21 AM CST Okay, it's been about three weeks since my last update. And I can't believe it is christmas eve already! This will be another quick update, because things are going well, and there's not much to report on right now : )
Friday, December 2, 2005 5:19 PM CST It's been a while since I last posted. Not much going on though. Which like I said last time is a GOOD thing :) I had to go to the clinic today to start my chemo cycle over again... I received Vincristine, Methotrexate, Pamidrinate (can't spell), I start my oral chemo tonight, and steroid pulse. I have 15 cycles left which is about 11 months until I AM DONE!
Sunday, November 13, 2005 6:36 PM CST *************************************************************************************
Wednesday, October 26, 2005 1:45 PM CDT Hey Everyone, Friday, October 14, 2005 12:54 AM CDT Hey Everyone, Saturday, October 1, 2005 9:46 AM CDT Yesterday we did the Light the Night Walk in Rochester, NY. Let me first thank everyone who donated and particpated in the walk with me! My original goal to raise for this walk was $500, with everyone's generous donations I ended up raising $900, so THANK YOU! The team I was on, creatively named 'team kim' (by my mom) :) ,raised close to $2000. And the Rochester walk last night raised $81,000 dollars for the Leukemia and Lymphoma Society. The walk was great, each participant is handed a balloon that lights up, white ones for survivors and red ones for supporters.
Wednesday, September 28, 2005 12:24 AM CDT Today is a really big day for me. A year ago today, I was told that I have Leukemia. It's been in the back of my mind that my one year anniversary of diagnosis has been coming up, but when I woke up today, I didn't realize what day it was. I realized when I was sitting in class what today is, and then I remembered that one year ago, I was in the emergency room lying on my stomach getting a bone marrow biopsy, crying and thinking that instead of going through this procedure I should be at school in Binghamton in one of my classes that was occuring at the exact time of the bone marrow biopsy. Coincidently, the class I was in today is lead by the same professor of the class I was missing one year ago. Tuesday, September 20, 2005 8:24 PM CDT There are 10 days left until the Light the Night Walk for the Leukemia and Lymphoma society. I've raised 75 f my goal ($375 out of $500). So, THANK YOU to everyone that has helped me raise this much. If you would like to visit my donation page, click here.
Monday, September 12, 2005 12:17 AM CDT September is childhood cancer awareness month. This is important to me, because I have a pediatric form of cancer. At the end of September, I will be walking the Light the Night Walk for the Leukemia and Lymphoma Society. I hope to raise some money for the cause, b/c this is a cause that is very close to my heart. If you would like to walk with us, or if you would like to make a donation, click here.
Monday, August 29, 2005 3:13 PM CDT Okay, well I thought I would update while I have the chance. My parents moved me back in to school this weekend, and today was the first day of classes. Doesn't sound like a big deal, but to me, this is a huge step. It doesn't seem real to me yet. So much has happened within less than a year, it doesn't seem possible. One year ago today I was In Binghamton just as I am now, but in that short amount of time, my life was flipped upside down and turned inside out, and now somehow it is starting to fall back into place again. Tuesday, August 23, 2005 2:51 PM CDT 4 more days until I'm back at school.. 7 more days until classes start. The countdown is getting low!
Tuesday, August 16, 2005 9:56 AM CDT Not too much new going on in terms of my treatment. Last night I gave myself my chemo through my catheter for the first time (usually my mom does it for me). But, since the countdown till I leave for school is getting pretty low, this was the last chance I had to do it myself before I leave. My prednisone (steroids) made me absolutely nuts(think PMS x 10,000), when I was coming off of them last week. Stupid steroids.
Tuesday, August 9, 2005 4:00 PM CDT Not too much to update about... Yesterday I had my doctors appointment with the orthopedic oncologist to see how my hip is doing. Good news, there are no changes in the bone, so the avascular necrosis has not progressed any further. It's really great to hear that, because it keeps me optimistic about my hip being able to repair itself with the help of the medicine I receive every three weeks.
Monday, August 1, 2005 4:27 PM CDT No new exciting trips to talk about today. But, everything is still going very well. I am a little tired the past few days, but I still feel better than I have in a while. I even went to the gym to work out on Wednesday and Sunday this week. Tuesday, July 26, 2005 12:13 AM CDT I just got home today after spending almost a week in Boston visiting family. This trip was the first time I have really done anything on my own since I have been diagnosed. It felt good to get some of my freedom back, and be semi-normal again. Tuesday, July 19, 2005 3:36 PM CDT This past weekend, I went with Paul to Long Island for a quick visit and for Paul's brother-in-law's graduation party. (There's a new picture from the party posted). It was great to get down to Long Island to see all of Paul's family. The only downside was I had a headache from the intrathecal chemo I had on Monday, and they would not go away!! Tuesday, July 12, 2005 12:27 AM CDT Well, I had another great weekend!! Friday Paul came to Rochester to visit, and then Saturday we went to my friend Kim's wedding. This is the first wedding I have been to of a highschool friend, I've actually known her since we were in pre-school... I cannot believe I am old enough to know people and have gone to school with them and now they are getting married! She looked sooo pretty and the wedding was great! The wedding was in the morning on Saturday and then Saturday night Paul and I drove to Keuka Lake to meet my family and family friends for a graduation party... Somehow Paul and I got completely lost and what was supposed to be an hour and a half drive turned into a three hour drive! But we still had fun once we arrived. And then finally on Sunday I was back home for the visiting nurse to come draw my blood to bring it to the hospital so I could receive treatment on Monday. Tuesday, July 5, 2005 12:16 AM CDT Not too much new going on here... Good news about my blood counts: I had my blood drawn last Thursday just to make sure my blood counts hadn't fallen again since my transfusions on Monday. We got the results back, and my counts had gone from my red blood cells being 19(the lowest they have been since being diagnosed) on Monday to being 32(the highest they have been since I was diagnosed) on Thursday!! This was definitely a relief to hear, and to know that my counts were going to be good going into the busy weekend ahead of me.
Monday, June 27, 2005 6:10 PM CDT Okay, so I had my first overnight and being admitted into the hospital yesterday since I've been through induction. I thought this maintenance was supposed to be easy!! Tuesday, June 21, 2005 12:47 AM CDT So, yesterday I officially started the maintenance phase of my treatment!!! It was a close one, they almost didn't let me get my treatment and start maintenance because my ANC (white blood cell count) was right on the border of being too low. If it's too low, you can't receive chemo.
Tuesday, June 14, 2005 9:20 AM CDT Yesterday I had my LAST L-aspariginase shot ever!!!! When I went into the clinic, the nurses had set up my room with candy, cookies, a card, banner, balloon, and soda. It was a really nice little celebration. I ended up having a longer day than expected though, because I needed a red blood cell transfusion. I feel a million times better after receiving the blood. Thursday, June 9, 2005 9:42 AM CDT Soo, the past few weeks have been pretty uneventful... which is a good thing! Wednesday, June 1, 2005 6:03 PM CDT Hello everyone,
Tuesday, May 24, 2005 8:34 AM CDT Hey Everyone,
Tuesday, May 17, 2005 11:57 AM CDT Hey Everyone, Tuesday, May 10, 2005 8:35 PM CDT Hey everyone,
Wednesday, May 4, 2005 5:03 PM CDT It's been a pretty uneventful week... All I can say is this chemo stuff is really wearing on me. I just started a new drug methotrexate three weeks ago (I receive it once/week), and it makes me sick!!! In the past 2.5 weeks, I haven't been able to go more than one day w/o having stomach trouble. Last Thursday I had to go to the clinic to get fluids through IV because I was getting so dehydrated from not being able to drink anything or hold it down.
Tuesday, April 26, 2005 5:10 PM CDT The visit to Boston was awesome. It was so good to see my family, I had such a great time. On Sunday I went with my Aunt Kathy, my mom, and my sister to shop in Boston on Newbury street. I was so tired though that they had to push me around in a wheel chair. The next day, Monday, we found out why I was so tired. My red blood cell count was down to 23 (normal is around 33). So, while I was in clinic getting treatment (L-aspariginase shot), I also had two blood transfusions.
Tuesday, April 19, 2005 5:53 PM CDT Yesterday (Monday) I went to the clinic at the hospital, and received my L-aspariginase shot(in my leg), and vincristine (a drug administered through the catheter in my chest). My blood counts were pretty good; just my red blood cells were a little bit low still, 26 (normal is around 33-34). So, hopefully they will come up a little bit more on their own. Thursday, April 14, 2005 10:29 AM CDT Not too much new going on. Monday I went to the clinic for treatment. I got my L-aspariginase shot in my leg (less then 10 left!!). And my doctor decided to start me on an IV drug similar to Fossimax to try and stop the avascular necrosis from getting worse, it took three hours to infuse. My blood counts were a little bit low, my red blood cells were at 25 (normal is around 33/34), but I told my nurse i didn't want a blood transfusion, because that would have taken an extra 6 hours! So, I've been pretty tired this week. We still haven't received the results from my bone scan, to see exactly what kind of shape my hip bone is in (due to the avascular necrosis). That's about it for now. Monday, April 4, 2005 2:35 PM CDT Alright... So, I had to go to the hospital this morning to get an EKG and Echocardiogram (can't spell). Just to check and make sure my heart and everything are working okay because of all the drugs that I am taking. Things are fine, lol. Then I had to go up to clinic and get my chemo (just the L-aspariginase shot in the leg). And then we have to wait around for an hour to make sure I don't have an allergic reaction to the drug. Monday, March 28, 2005 12:04 AM CST Today I had another round of treatment. Four drugs intravenously and one intramuscular. And I start taking oral chemo tonight along with high dose steroids(180 mg/day). BUT, I have some really, really, really good news.... Today I received my last dose of a drug called Doxorubicin, which is the main cause of my hair falling out. So, my hair should start to grow back in a few weeks!!! (just in time for summer!). Also, last week I had a follow-up appointment with radiation oncology (because I received 8 days of radiation to my head), and they told me everything looks good and I don't ever have to go back there again!!!
Monday, March 21, 2005 6:29 PM CST Hi Everyone,
Monday, March 14, 2005 3:32 PM CST Had treatment today, an easy day; just the shot in the leg,(17 down, 13 to go!).
Monday, March 7, 2005 3:15 PM CST Had another round of chemo this morning. Two drugs intrathecally (injected into my spine), one through a shot in my leg, and three intravenously (through the catheter in my chest). Hopefully I can handle this round of chemo alright, and don't feel too many of the side effects.
Monday, February 28, 2005 3:06 PM CST Had chemo today, just the L-aspariginase shot (in the leg). Then I had to get an x-ray on my hip, because it has been really bothering me for the past week. My nurse isn't too sure what the pain is from... the x-rays were just a precaution to make sure that the prednisone(steroids) that I take aren't causing me to lose bone mass.
More than 65,000 young adults in their 20s and 30s are diagnosed with cancer each year and it is the leading disease killer among 20- to 39-year olds. In addition to the unique psychosocial concerns that young adults face such as fertility, body image, cognitive function, long-term effects, education, insurance and employment, young adults with cancer have had less survival improvement than either younger or older patients, and strides made in cancer treatment have bypassed young adults.
~Kim
Now for some fun stuff... I'm helping out the wonderful people at Camp Good Days (I volunteered as a counselor there for a week over the summer) put together their first young adult overnight. I'm so excited about this, throughout my entire treatment I wanted to meet others my same age going through treatment, but it was SO HARD to find others. Luckily I managed to meet a few people on my own. And now Camp Good Days is going to offer an overnight and I'm also going to help them figure out a means for everyone to keep in touch throughout the rest of the year. If you know anyone who might be interested in this overnight for young adults (anyone 18 through their 20s), pleeease let them know about this overnight. And if they are really interested, you can e-mail me, or go to the Camp Good Days website (www.campgooddays.org).
Besides that, I'm just passing the time by taking a microbiology course (a prerequisite for nursing school), and looking for a job.
Take care,
Kim
I think that's it for now. Thank you so much for supporting me throughout these past few years.
Happy New Years to EVERYONE!!!!!
<3Kim
I can't believe I'm done, I can still remember when I was diagnosed like it was yesterday... It's been 2 years, and I've made it!!!
I have been surrounded by and met so many people who have helped me out in so many different ways. You have all made it easier for me to make it through this. I'm so grateful to be where I am today, so Thank you.
I go in on November 8th to get my hickman/broviac removed, and labs drawn to make sure everything is okay. Then once/month for six months I'll have to go in to get my blood checked to make sure everything is alright, and then after the first six months it will go down to every other month for six months. And I think it will progress like that for the next three years.
Dec 8th, I start a new treatment for my avascular necrosis, called Zometa. I'll get it once/month for three months, and then it will go down to once/year. This is a pretty new drug, and I have no idea how long I'll have to take this for. Or how long it will take to make the avascular necrosis disappear, or even if that will ever happen. But, I have my fingers crossed!
Thank you for continuing to check in on me! I really appreciate it, please sign my guestbook so I know you were here!
<3KIM
So, here we are, Thursday is the beginning of my last treatment cycle. I've waited 2 years for this, and it is finally here. It's so weird, I'm so excited for my treatment to end, but I'm so scared at the same time. The chemotherapy has been there for the last two years proactively helping me fight the Leukemia, and now all of the sudden I am just going to stop. Stop getting treatment, stop considering myself sick... I'm going back to a normal life, and it's exciting, but nerve-wracking at the same time.
Friday was the Light the Night Walk in Rochester. My team raised about $2500, so THANK YOU to all who donated and particpated. AND the Rochester walk alone raised over $175,000!!! This is a new record! Here are some pictures from the walk: 
by lmnop_17
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The back of the Team Kim shirts we all wore... Does this quote look familiar??
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A friend of mine who fought Leukemia very hard for the last 3 years passed away on Friday. Rest in Peace Jimmy, you had amazing determination, and you fought relentlessly.
-Kim
Here are a few pictures from the weekend (I'm not very good at putting pictures on, and for some reason they came up really small, but if you click on them you can see them full size):
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Grandma, Papa, my mom and her brother and sisters
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Kristen and Me
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Aunt Kathy and Me
Yesterday I started my SECOND to LAST cycle of chemo!!! After this, ONLY ONE MORE!!!!! I'm so excited that this whole thing is almost done!
Also, on October 6th, I'll be walking the Light the Night walk to raise money for the Leukemia and Lymphoma Society.. If you want to donate, please visit my webpage at:
http://www.active.com/donate/ltnAmhers/teamkim
Thanks for checking in on me, sign my guestbook so I know you were here!!!
<3Kim
Initial reports back from MRI say that now both my hips have Avascular Necrosis... Not really sure how the orthopedic doctor and my oncologist are going to handle this. My nurse practitioner suggested that they may discontinue the prednisone (the cause of the avascular necrosis) for the rest of my treatment. And possibly change the drug they are using to treat my right hip (now both hips). I go in on Wednseday for the beginning of my next round of treatment, so I'll find out by then and keep you all updated.
************************************
It's been a while since the last update...
I had a BLAST at Camp Good Days and Special Times.. I can't believe I was nervous to go! I am definitely planning on going back and volunteering again next year. I had such an amazing time and everyone there from the staff at the camp, the volunteers and all the campers were such great people. It was really nice to meet other people my age, younger, and older who have been through some type of cancer.
After camp, I started another treatment cycle on the 10th. Nothing new to talk about with treatment, I did have an MRI last week, b/c my left hip is bothering me, so we are worried that that avascular necrosis has started in the left side (i've already been diagnosed with it in my right side). I should find out the results by my next treatment, which is scheduled for the 30th. By the way (I've repeatedly been telling my friends and family this), I only have THREE MORE cycles left until I am done with treatment!!!
My little sister is leaving for college on Thursday... I am sad to have her leave the house, but I'm so excited for her and what she is about to experience as a freshman in college. I wish I could go with her!
About a week ago I returned from spending the week in Boston with my aunt Kathy and my uncle Dennis. Paul came and stayed for a few days as well. My aunt and I shopped till we dropped, we ate out at some of the best restaurants in Boston, and then on Saturday Paul and I went to a Red Sox game (THANK YOU Uncle Benji!!!!), we had tickets in the second row behind the Red Sox duggout, the game was awesome.
This past Tuesday I finished up with my summer course I was taking, so now I only have 8 more credits until I am done with undergrad. And then on Wednesday I gave a small speech at a luncheon for the Light the Night Walk in the Rochester area that will be happening at the beginning of October this year.
And on Sunday I leave to go volunteer at Camp Good Days for a week. Camp Good Days is a camp for kids who have cancer or have had cancer. The camp I will be going to will have kids attending from all over the world. I'm a little bit nervous about going to the camp, but I know it will be a lot of fun.
If anyone wants to support me in the light the night walk to raise money for blood cancers, by donating money, please visit this page:
http://www.active.com/donate/ltnAmhers/teamkim
Or, if want to join my team for the Light the Night walk in October, e-mail me (lmnop_17@yahoo.com)!
Thank you for checking in on me, and don't forget to sign my guestbook so I know you were here.
<3KIM
Today my mom and I went to a committee meeting for the Light the Night Walk (walk to raise awareness and money for blood cancers - Leukemia is a form of blood cancer). At the meeting I was asked to be the ambassador for the Rochester Light the Night Walk. I'm not 100 percent sure what this entails, but I'm excited and honored to have this opportunity.
Speaking of the Light the Night walk, I finally set up my page for it. If you would like to donate to the Leukemia and Lymphoma society through the Light the Night walk, please visit my page:
http://www.active.com/donate/ltnAmhers/teamkim
I really appreciate any donations.
OR
even better, if you would like to join our team and walk with us, e-mail me (lmnop_17@yahoo.com)
That's it for now.
Thanks for checking in!
<3KIM
This will be a really quick update. I'll have more later on this week.
I hope everyone is enjoying the beginning of summer... I am : )
On Thursday I noticed the site where my hickman catheter going into my chest was a little bit red... and the night before I had a dream that it was hurting me. Turns out it's infected, so I had to go into clinic and they cleaned it up and started me on anti-biotics. I should find out this week what type of infection I have in it.
Yesterday my little sister graduated from high school... I feel old now. Very proud of her! This fall she'll be going to school and the University of Buffalo. I will definitely be making a few visits there to make sure she is behaving herself, haha.
That's it for now.
<3 KIM
I started a new round of treatment yesterday... Methotrexate, Pamidronate (for my hip), Vincristine, 14 days of oral chemo - 6mp, and a 5 day pulse of prednisone. Everything is going great with my treatment, my counts have stayed pretty stable throughout the entire maintanance phase, so for the third time my chemo has been increased. My doctors decided to increase my methotrexate by 10 percent This is the second time they increased my methotrexate, the other time they increased my 6mp.
Next weekend I am going with my friend Torey from clinic to a training session for Camp Good Days and Special Times, because we are going to be counselors at the camp later on in the summer. I'm excited for training, especially because I have no idea what being a counselor at this camp entail. But, I know it will be a lot of fun, and I expect to meet a lot of new people.
Thanks for checking in on me!
<3KIM
I started a new round of treatment yesterday... Methotrexate, Pamidronate (for my hip), Vincristine, 14 days of oral chemo - 6mp, and a 5 day pulse of prednisone. Everything is going great with my treatment, my counts have stayed pretty stable throughout the entire maintanance phase, so for the third time my chemo has been increased. My doctors decided to increase my methotrexate by 10%. This is the second time they increased my methotrexate, the other time they increased my 6mp.
Next weekend I am going with my friend Torey from clinic to a training session for Camp Good Days and Special Times, because we are going to be counselors at the camp later on in the summer. I'm excited for training, especially because I have no idea what being a counselor at this camp entail. But, I know it will be a lot of fun, and I expect to meet a lot of new people.
Thanks for checking in on me!
<3KIM
My mom and I have decided to be on the committee for the Light the Night Walk in October. On Friday my mom and I went to a luncheon for the Walk. We met the other members and discussed ways to raise awareness for the walk, raise money, and get people to participate in the walk. I'm excited to be able to work on this, and contribute to helping raise money for researc for blood cancers. The walk in Rochester isn't until the beginning of October, but if anyone is interested in joining our team for the walk, or making their own please e-mail me! And if you would like to donate money to our team, I'll be posting the webpage soon!!!
Thanks for checking in on me,
KIM
Today has been a very interesting day.
I found out this morning my friend from clinic gained his angel wings and is now healed in heaven. J.O. you will be greatly missed by many.
This afternoon I went back to my old high school to visit the track team (i used to pole vault in high school and in college). My coach from my high school team has been organizing a run-a-thon to raise money for the Ronald McDonald house for the past 5 years, last year and this year he donated the money in my honor. He introduced me to the team and I told them a little bit about my experience with cancer and thanked them for participating in the event.
I am really touched by everyone's generosity to volunteer and raise money for such great causes. Not only did the local high school track team raise money, but my mom's best friend Terry is currently raising money for another marathon she is running for the leukemia and lymphoma society, she is running in the memory of her daughter Emily and in my honor as well... If you are interested in donating to her, I will be posting her website within the next few days.
<3KIM
Sunday, April 30
Hey everyone!
Just the same as usual to report today. I started another round of chemo on Friday (9 left until I am finished! I know I said that last time, but that was because I didn't count right, and that equals 27 weeks until treatment is officially done). I received the usual on Friday, methotrextate, pamidronate, vincristine, started 6mp for two weeks and the steroid pulse. So far, feeling pretty good, and that is a very GOOD thing, because I have final papers to do and a final for one of my classes to study for.
On Thursday for one of my public policy class, we were talking about the legalization of marijuana, and of course the medical use of marijuana came up. (my professor has known that I am in treatment for leukemia since class started, and he asked if I would mind talking to the class about my experience with Marinol-a pill that is 99 percent THC for this class). Normally, we split up into smaller groups and discuss our thoughts on the public policy up for discussion that day, and then we all get back together and report back to the class what our groups thought about the public policy and our stance on it. Well, the day the marijuana discussion comes up, I'm thinking that I will raise my hand when I am comfortable and share with the class that I have been undergoing chemotherapy for Leukemia for the past year and a half and during this time I have taken marinol, and share my thoughts about the legalization of marijuana and my experience with marinol... Nope! We don't have a discussion this day, instead my professor has me come and sit up in front of the class and talk to everyone. At first I thought no big deal, but I really started to feel my nerves when I sat down and began to tell everyone about my treatment... long story short, it went pretty well, this was the first time I have ever told a group of people who I don't know very well about my diagnosis and treatment and it was a little bit (okay, very) nerve-wracking for me. But I am glad that I did it, this way my classmates can put a face and a personal story in place when they are thinking about these types of topics.
On a more serious note, I received the news from the social worker at the hospital that one of my friends from clinic who has been in remission for a few years has recently relapsed with a very aggressive form of cancer and has decided not to do anymore treatment.
J.O. you have been an inspiration to me from the first day the social worker, Eric, told me about you. And from then on when you e-mailed me to help through my diagnosis and treatment period and my transition back to Binghamton, and meeting in clinic, you have become not only an inspiration, but a friend. I am deeply saddened by this news. My thoughts and prayers are with you.
<3KIM
It's been three weeks since I last updated, but not too much has happened since then.
After my spinal tap last time, I ended getting a spinal headache (as a result of some fluid leaking out after the procedure, causing an imbalance of fluid in my spine), which didn't go away for two weeks! The only time I could get relief from it was when I would lie down. But it eventually went away.
I started another round of chemo yesterday, same as usual... Vincristine, Methotrexate, Pamidronate (all IV), then had to start 6MP every night for two weeks, and the prednisone pulse (both oral). And the countdown continues, 30 WEEKS until I am DONE w/treatment!!! (that equals 8 more cycles after this one).
Easter is next weekend and my family and I are traveling to Boston to spend Easter with my mom's side of the family. I'm excited to see everyone, b/c the last time I saw them all was Thanksgiving.
And a BIG Congratulations goes out to Paul, b/c he was just accepted into Cornell's gradschool!!!
Thanks for checking in on me, I really appreciate it.
<3 KIM
On Thursday I started another round of treatment (my mom's countdown was off by one, so now I have 10 rounds left... 33 weeks, and I'LL BE DONE!!!). I had to have intrathecal chemo this time, which is when they inject Methotrexate and Ara-C into my spine. I get put to sleep for the procedure, so I don't mind it at all. And then I received Vincristine, and Pamidronate through IV, and started my oral chemo (which I'll take for 2 weeks), and my steroid pulse. Feeling pretty good with the exception of a headache I'm having from the intrathecal chemo, I'm fine when I'm laying down, but sitting up or walking really makes my head hurt. I've had this side effect once before from the intrathecal chemo, and it took TWO WEEKS to go away. So, I'm really hoping this time it doesn't take as long, because I have classes to go to this week, and I get pretty bored lying on the couch allllll day long.
That's it for now, thanks for checking in on me!
<3KIM
So, same as usual, everything is going very well. I just had another round of chemo last week on Thursday - Vincristine, Methotrexate, Pamidronate, started 14 days of 6mp, and the prednisone pulse. My nurse practitioner went over all my counts and I had a small physical and she said everything is going great. All of my counts have remained steady and everything is right on track. According to my mom's countdown, I have 10 cycles left!
After I had chemo in the hospital, my family and I headed off to Lake Placid, NY (where the 1980 olympics were held), to watch my sister and her synchronized skating team (it's like synchronized swimming, but on skates) in the Empire State games. We had a great weekend, saw a lot of snow, and her team won the gold medal!
Some pictures from Lake Placid
Mirror Lake
Mirror Lake
Lake Placid Main Street... It snowed almost 2 feet in two days!
Thank you for continuing to check up on me, I hope all is well with everyone.
<3KIM
It's been a little while since I last updated. As usual, I don't have much to update about as far as my treatment is concerned. I began another round of chemo on Friday in the hospital, same as usual; Vincristine, Pamidronate, Methotrexate, started the two weeks of 6mp and the 7 days of Prednisone. The increase in my 6mp hit me hard on the second week in my last round of chemo, I just didn't have the energy to get out of bed!! So, we'll see how I handle it this time around. I did find out that when my treatment is over(around the beginning of November 2006), they will stop everything for a month. Then I will come back and get a bone marrow biopsy done, and if that comes out clear, my Hickman catheter will be removed a few days later! I can't wait for the day I don't have this thing hanging out of my chest anymore!!!
Classes are going well so far, I'm about three weeks into them (I'm only taking two). My professors are great and very understanding.
I had a great weekend, Paul came to visit and on Friday we went out with one of my best friend's Ashlee, and Alexis for a little while, and then Ashlee's boyfriend Nate showed up for a little while. It's always great to get out and feel like I'm getting my old life back, it gets closer and closer to what life used to be like everyday. And I'm so thankful for that.
Here are some pictures from the cruise that I promised a while ago!
A really pretty sunset
Me, Kristen, and my mom on New Years Eve
Kristen, and Dad
Mom, Kristen, and Dad out on their balcony
Our ship, The Constellation on the left
Kristen and I on New Years
This picture speaks for itself
Thanks for checking in on me!
<3 Kim
I hope everyone had a great New Years! We spent our New Years on the cruise ship, it was the first night and we had a lot of fun.
<3 Kim
I went to clinic yesterday and started my chemo cycle allll over again. Vincristine, Methotrexate, Pamidronate, started 6mp, and Prednisone pulse. My nurse did tell me that they have to raise the amount of 6mp that I get, because my blood counts are still coming back too high. This is really normal around this phase of treatment. They are just going to play with my chemos until they can get my blood counts to drop a little bit more.
On a really exciting note, my trip that my grandparents are sending my family on (my grandparents are coming too!) is just a week away!!! I don't remember if I have ever posted about the trip before, but my grandparents decided that since I am too old to qualify for make-a-wish they are sending my family and I on a trip! So, we have decided we are going on a cruise in the Carribean. We fly down to Puerto Rico on the 31st and then the ship will go to St. Thomas, St. Kitts, Barbados, and the Dominican Republic and Grenada. We are all so excited!!!! I'll post some pictures when we get back.
As always, thank you for checking in on me. Happy Holidays, and may everyone have a happy, healthy New Years!
-Kim
Next week is my last week of school and then there is finals week, and I only have one final. So it shouldn't be too bad. And then I will be home!!!
Happy Holidays to everyone!
Thanks for checking up on me,
Kim
Update 11/14/05
Just got back from the Orthopedic Oncologist... No sign of Avascular Necrosis progression!!! This is good news!!! :)
*************************************************************************************
Been a little while since the last update... that's b/c there really hasn't been much going on. But I figured I would do a little bit of an update, just in case anyone is wondering.
Treatment has been going smoothly. On Friday(11/11) I went into clinic to have a procedure done that only gets done every 4 months - I had intrathecal chemo ( chemo- ARA-C and Methotrexate injected into my spine). And then I was given vincristine through IV and Pamidrinate also given through IV. My blood counts are good, and my Red Blood Cells are as high as ever (at 37). For anyone who doesn't know anything about blood counts, this is great.
Tomorrow I go to the orthopedic oncologist to check up on my hip and the avascular necrosis. I have a feeling everything is going to be fine and that the avascular necrosis has not progressed any further.
I had a great weekend. Paul came to visit and we went to see the movie "Kiss Kiss, Bang Bang". I highly recommend this movie (for adults). And then we went out to watch my best friend's boyfriend's dad play in a band at a bar. It feels great to be feeling well enough to be out and about and doing 'normal' 22 year old things again.
By the way, Jay Leno Oct 28th was AWESOME! he was so funny!
Thanks for checking in,
Kim
P.S. My team (team Kim) for The Light the Night Walk I did at the end of September, came in 10th place for money raised by a team for the walk in the Rochester area!
Things have been pretty uneventful, that's why there hasn't been an update in a while. Which is a pretty good thing.
The increase in the chemo dose has actually made me neutropenic (white blood cells fall below a certain level, making me pretty susceptible to infections and colds), which has not happened in a VERY long time. But besides that and feeling a little more tired than usual, the increase in chemo hasn't effected me as much as it could have.
I'm looking forward to this Friday, because Paul and I are going to see Jay Leno live! I'm pretty excited about this, everyone can use a good laugh once in a while.
That's about it - told you things have been pretty uneventful.
Thanks for checking in!
=Kim=
Haven't updated in a little bit. Not too much to report on. I've decided that I'm going to come home after this semester at Binghamton, and have arranged with Binghamton to finish the rest of my courses at a college in the Rochester area, and still be able to get the Binghamton degree. After this semester I will only have one class in my major to finish up and then two or three more classes just to get enough credits to graduate. School just isn't the same as it was before I got sick. And I haven't been able to adjust to it too well. So, I decided that if I could come home that would be the best option for me. And luckily it is possible for me to finish in Rochester.
Also, I was informed that the dose of one of my chemos (methotrexate) that I receive weekly intravenously will be increased. This is because my blood counts have been coming back consistently really good, and are not showing enough of a drop after I receive the chemo. So, we will see what happens tonight when I give myself the new higher dose of chemo.
Thanks for checking in on me!!
-Kim
Also, before the walk, I had a long day at the hospital receiving chemo. My counts were pretty good, and I'm continuing along without any major 'bumps in the road'.
Come back soon, b/c I will post pics from the walk & Thank you for continuing to check up on me!
-Kim
p.s. my mom's friend Terry who has been running marathons with me as her honored teamate is in an article...
http://www.sportsetc.com/c_editorial/Faces/Peak Performer/Face_PP_1005_TerryJordan.cfm
I'm thankful, happy, and proud of myself to be where I am today.
Also, I would like to thank EVERYONE who has donated in support of the Leukemia and Lymphoma society to the Light the Night Walk that I will be participating in on Friday. Thanks to everyone who donated I have surpassed my goal of $500 and raised $695!!! so, THANK YOU! If you want to check out my donation page, click here
-Kim
I'm into my fourth week of school here at Binghamton, and starting to get more used to being back. I still can't help but think of what was going on exactly one year ago. One year ago, I thought something was wrong with me, because I wasn't feeling right. But I had no idea what was to come, what I would need to go through, and what I would need to face in order to be back here in Binghamton right now. It's crazy what can happen in one year.
A little side note about my counts... Last Wednesday when I had my blood drawn, my results came back GREAT!!! They were the same as a normal person's, this is the first time I have see my counts this good ever! Tomorrow I get my blood drawn again, and they should be a little bit lower because the chemo should have started to kick in.
-=Please keep my friends Devon and Jimmy in your prayers because they are both going through a rough time right now=-
Thank you for checking in on me. The support I have received this past year has been amazing, and it has helped me to get to where I am today. Thank you.
It's been a little while since I last updated. I went home this past weekend to get chemo on Friday, everything went well, nothing unusual.
It's the beginning of the third week of classes, and so far I'm managing. It's still not the same here, but I can't complain, I'm lucky to be here and be able to finish up school.
While I was in the hospital I had a chance to visit a friend who was an inpatient fighting cancer at the hospital during the time I was diagnosed last September. Jimmy needs some extra prayers, because he is having a rough time right now.
I also would like to ask everyone to hold my little friend Devon in their thoughts and prayers. He is another cancer fighter who is going through a very difficult time.
As always, thanks for checking in on me, I appreciate all the support I have been given throughout the past year.
-Kim
I didn't have any classes today, I don't have classes Mondays or Fridays (nice schedule, huh?). I had to make sure I had a schedule like that, because I will still be receiving treatment at Strong Hospital in Rochester every three weeks. So, I will go home for that part of my treatment. And the rest of it, I will give to myself. Tonight I will give myself chemo through my catheter for the first time by myself without anyone watching over me.
I am living on campus this year, because I need to be near the health center for my weekly blood draws and catheter dressing changes. So, this means I have new roomates. I finally met them this past weekend with much anticipation. I have two roomates; Cise, and Chieko. Cise is from Turkey and Chieko is from Japan. They are both really nice.
Tomorrow is my first class in a longggggg time! I'm a little bit nervous for this, just as I am for everything else that I do. But, this is still a big adjustment for me.
That's about it for now. Thanks for checking up on me!
-Kim
Yesterday I went to the hospital and had treatment. Hip medicine, and two chemos into the catheter. Also, the beginning of oral chemos for two weeks, and the dreaded steroids began and will continue for the next week. It was really nice to go into the hospital and see all the nurses, my nurse practitioner and my oncologist. It's been three weeks since they have last seen me, and apparently I look different than last time they all saw me( I bet it's the hair on my head that grew in!). It was a great feeling seeing all their reactions to how healthy I'm starting to look again.
The Leukemia and Lymphoma Society's light the night walk is going to be on September 30th here in Rochester. If you'd like to walk with us, or donate to the society, please let us know! We would love for anyone to participate with us.
Thank you to everyone who has signed my guestbook in the past week, it really brightens my day up to read your messages.
-Kim
My grandparents came to visit for the weekend, it was great to see them again. They are planning a vacation for my family and I during winter break... CAN'T WAIT!!! Thanks Grandmama and Papa!
On Thursday My mom and I are going to head to Binghamton to set up things at the health clinic before school starts.
Speaking of school, I'm starting to get pretty nervous/excited (more nervous than excited) about it. It's almost been a whole year since my diagnosis, and I have been feeling better and better in the past few weeks. But, I have not lived like a 'normal' 21 year old in a very long time. I don't know my roomates that I will be living with, since I will be moving back onto campus. And I am worried about what they will think of living with a roomate who 'has cancer', and is undergoing chemotherapy.
Thank you for continuing to check in on me. Sign my guestbook so I know you were here!
-Kim-
My blood counts also came back very good yesterday. I think they might even finally look like a normal, healthy person's counts. So, that meant that I was able to receive my chemo last night. I feel pretty good today from it, a little bit tired, but that's it.
That's about it, everything is going really great. Thanks for checking in on me!
I just came back from getting treatment at the hospital. Today is the beginning of a new cycle. I had Methotrexate, and Vincristine given through IV for the Leukemia. And Pamiginate(can't spell it) given IV to hopefully help my hip repair itself, this medicine takes the longest, it's a three hour infusion. And then tonight I start oral chemo (6MP), and the dreaded steroids.
My hair is finally starting to grow back! I actually have enough that when I was driving in my car home from Paul's on Friday, I could feel the wind blowing through my hair! I haven't felt that in the longest time.
That's it for now, thanks again for checking in on me.
-Kim
I spent the 5 days at my aunt's place in the North End in Boston and 1 day at my grandma's house outside of Boston. It was really great to see the whole family. I spent most of the week going out on a shopping spree with my Aunt Kathy - it was so much fun! (thank you again).
I flew home today, my mom picked me up at the airport and we drove straight to the hospital to get my blood drawn to see if I am alright to have chemo tonight.
I still have a busy week ahead of me, tomorrow is my rest day. And then Thursday to Friday I am driving to Syracuse to visit Paul and then drop him off at the airport.
Thank you for checking in on me. Treatment is going really well, and I feel great.
-Kim
By the way, HAPPY BIRTHDAY ASHLEE!
I went into clinic yesterday to get my blood drawn, and got the initial results from my MRI that I had last week... They said that my hip hasn't shown any signs of change, which is good. Because that means the avascular necrosis hasn't progressed any further.
That's about all for now, thanks for checking in on me!
-Kim
Monday morning I had to go into clinic for treatment. Every four months I get the chemo injected into my spine, and yesterday was the day I had to have that procedure done. But, it's not nearly as bad as it sounds. Since I am followed by the pediatric clinic, they put me to sleep to do the procedure, so I don't feel a thing! The only downside is that it causes headaches afterwards. After my spinal tap, I received chemo and medicine for my hip through my catheter. And after being off of the prednisone (steroids) for a wonderful 9 weeks, I was put back on them yesterday. This is the medicine that caused the avascular necrosis to my hip. But it is also essential in my treatment for the leukemia. We'll see how it goes this time, hopefully it won't have the same results as the last time I was on it. I am more optomistic about it this time around, because I am on 1/3 of the amount that I was on before. HOPEFULLY it won't have the same side effects! Because besides the hip stuff, it also causes me to want to eat everything in sight! lol. And it tends to cause a side-effect that is called 'moon face', which is just a nice way to say it makes your face really fat. I take the prednisone for five days, every three weeks. But they can't just end it right away or else I get withdrawal symptoms from it, which aren't too pleasant for me, or anyone who has to be around me!! So, lets all hope this smaller dose doesn't cause such extreme effects as the other dose that I was on.
Today I have to go back to the hospital to have an MRI done on my hip to see if the medicine I have been getting every three weeks has helped out in healing my hip. I really feel like it has, so I hope the results show the same. I will update when I find out.
Thanks for checking in on me!!!
-Kim
I had the BUSIEST weekend I have had in a longggg time. On Friday my mom and I met Paul and his family at the finger lakes wineries. And spent the whole day going from winery to winery. Then on Saturday we drove to Niagara Falls for the day and walked around and saw the falls. And on Saturday we went out to lunch on the boat and had a bunch of people over for a 4th of July weekend cookout. And then finally on Monday we rested and hung out around the house with Paul and his family. And today, and the next few days I think I'm just going to recuperate from the weekend.
I also posted a few pictures from the weekend.
-Kim
Yesterday, I had my blood drawn to see if I could receive my chemo tonight. And a oncologist from the hospital called my house to tell us that my red blood cell count (hematocrit) was down to 19 from 29 the week before (normal is btwn 35-40). So, she suggested that I go to the emergency room to see what was going on. She thought that I might have a bleed somewhere in my body, and that was why my hematocrit dropped so much in one week. So, we got into the ER at about 9:30 last night, and they ran a few tests on me, and decided that I needed a blood transfusion. They admitted me to the hematology/oncology floor of the hospital so they could give me the blood overnight and I could sleep while they did it. They didn't find any bleeding inside my body. So, now they think I have a virus that dropped my counts so much. Those tests won't be back for a few days though.
So much for this being the first week that I didn't need to go to the hospital for treatment! But at least everything is alright and I'm back home now. I receive methotrexate tonight, hopefully that will go smoothly and I won't have too much trouble with it!
Thank you to everyone who continues to think of me and has me in their prayers. I appreciate it so much, and I know it is helping me make it through this.
-Kim
I've had some sort of virus for the past week, so I've been trying to fight that off, but it's really taking a lot out of me. I've been so tired from it. But, I think I'm finally starting to get better!
That's it for right now.
-Kim
July 11th marks the day I start the Prednisone (steroids) again... nooooo!!! I hate the side effects of this medicine, but at least this time I'm getting 1/3 of the dose I was receiving before.
Next week I start a new phase of my treatment, that I will remain in until the end of treatment... 16 more months.
http://www.thesurvivormovie.com/
this is a really nice movie about living with cancer, check it out if you get a chance.
The methotrexate is still not mixing well with my stomach. so, for the day or so after I receive it, it's still hard to eat... BUT, I have found a mix of anti-nausea meds that work pretty well when I take them: Marinol, and Kytril... Sometimes it makes me a little spacey, lol.
This upcomming Monday is a BIIIIIIG day for me. I finish the L-aspariginase shots!! I've been getting one/week for 8 months, and this Monday is my last one!!! This is also a big deal, b/c I will start the last phase of my treatment(Long Term Maintanance/LTM). The nurses are even throwing a little party for me in clinic to celebrate. In the new phase, I will only need to go to the hospital once every three weeks, instead of weekly. I will still need weekly blood draws to keep track of my blood counts, but a visiting nurse will come to my house to take my blood. LTM lasts almost a year and a half.
I'm so excited to get to LTM, I've been told by the nurses that things get a lot smoother and easier once you reach this part of treatment. Everytime I pass a milestone like this in my treatment, it's like the light at the end of the tunnel keeps getting brighter, and that's what helps to keep me going.
Thanks for checking up on me!
Kim
Last week was great.. I wasn't able to get my methotrexate, b/c my ANC was too low. And because I didn't receive the metho, I didn't have any side effects!! I felt the closest to normal that I have felt since I've been in treatment, it was great!!!
Yesterday I went to the clinic to get my shot of L-aspariginase. And tonight I get the Methotrexate. Hopefully things will go alright...
But besides that, I don't really have anything new to report.. My little sister Kristen passed her driving test, and now has her licsense. So, everyone on the roads, WATCH OUT! lol.
TTYL,
Kim
I was reading this article today, http://www.stuff.co.nz/stuff/0,2106,3297174a11,00.html
It really shows the importance of getting more people, especially of different races into the bone marrow registry.. I hope they find a donor for this boy.
Not too much going on here. As usual, I had a rough start of the week last week, and then it got better as the days went by. All the way till my best day on Sunday, where I almost felt normal again!
I went to clinic yesterday to get my L-aspariginase shot. And just as I was about to leave, my nurse practitioner stopped us, to let us know that my ANC is too low and my liver enzymes are too high, to get my Methotrexate (which I'm supposed to get every Tuesday). This didn't break my heart at all! I'm glad to get a break from the Methotrexate for a week. Hopefully things will be back to normal so I can continue on with it though next week.
Not too much else to report.
Until next time,
Kim
I was very lucky this past weekend, because I was feeling well enough to travel to Binghamton to pack up the rest of the stuff from my house, and say goodbye to some of my friends. It was such a tough weekend for me, because I was able to see firsthand what I had been missing all year long. I was also able to visit Paul in Syracuse too! Which helped lift my spirits after leaving Binghamton.
Nothing new to report really... Yesterday I went to clinic for my weekly L-aspariginase treatment. And found out that my Hematicrit was 21 (normal range is about 35-40), this explained my pounding headaches and fatigue the day before!! So, I began a red blood cell transfusion, but had a transfusion reaction, so I wasn't able to get my red blood cells completely restored. Besides that everything is going pretty well. I get my dose of Methotrexate tonite.. BLAHHHHH!!!! We still haven't been able to get the nausea under control, last week it was better than the week before, but not great. So, hopefully this week will be better!
I would just like to say a quick thank you to everyone who has been such a great support for me right now. Without everyone's help, support, thoughts and prayers I would not be able to make it through this.... so, THANK YOU!
And CONGRATULATIONS to the Binghamton University class of 2005. (Wish I could have been there with you guys!).
Sunday (mother's day) was absolutely wonderful!!! Paul came to visit, and my whole family was around hanging out. Not to mention I had a really, really good day, b/c I felt great! I washed my car (with some help from Paul), attempted to play whiffle ball (the first time i tried to play ANY sport since I've been sick), and was terrible at it. And then we had a cook-out to finish out the day. It was great and I had so much fun.
With such a great Sunday, it was hard for me to go to clinic on Monday knowing that I was going to be starting a whole new cycle of treatment. I received Vincristine through my port, L-asparaginase by a shot in my leg, and started oral chemo... I've handled all that chemo alright, but tonight is when I get the Methotrexate that has been making me sick the minute it is pushed into my catheter... Soooo, tonite I am trying to treat the nausea before it starts. For the past 48 hours, I've been taking Kytril (an anti-nausea pill that's supposed to work really well for chemo patients... but doesn't stop the nausea for me by itself when I take the Metho.), So, I am also taking Reglan (another anti-nausea), and Benedryll, b/c the Reglan has a semi-common side effect which causes pretty big muscle twitches, so it looks like the person is having seizures. So, the benedryll is supposed to prevent that side effect.
Also... last week I wrote about how I was given a prescription for Marinol, which is medical marijuana (to try and stop my nausea and help me to build up an appetite). It's in pill form and chemically made, so it's 99 percent THC. There are three different amounts that the pills come in, and originally my Onc prescribed me the middle dose.... When I took it, it hit me so hard, I couldn't even hold my head up, lol. So, they gave us a prescription for the lowest dose.
HOPEFULLY this new attempt at stopping the nausea will work, because this week is the last week of school for all my Bing seniors, and I really, really want to get to Binghamton to see everyone one last time!!! And hopefully to Syracuse to visit Paul(Thanks for being so wonderful, your support has been amazing to me!).
-Kim
p.s. Lacy and Devon, I really hope this is a better week for you both. And that you get to use your new pool from the make-a-wish foundation!
Yesterday night, I had my third dose of the methotrexate. To try and stop me from being sick, I took anti-nausea medicine(zofran) an hour before I was supposed to get the metho. And as soon as the metho was put into my catheter I got sick. So, after my stomach settled, I took another anti-nausea pill(atavan/lorazapan) that would help me sleep through the night. Woke up this morning thought everything was alright....... NOPE! sick again.
The clinic set me up with IV fluids here at my house, so I have been hooked up with them since about noon today, took a different anti-nausea med (Kytril, w/o insurance it's $40/pill!!!!). But NOTHING is helping my stomach!
My mom talked to my doctor, and she thinks that this new medicine along with the L-aspariginase shot i receive once/week are having a reaction with each other in my stomach. So, my nausea should stop, once I stop getting the L-aspariginase shots. Bad news is that I will be receiving both of these medicines for six more weeks! So, the next attempt at curing my nausea, the doctor is prescribing me Marinol(medical marijuana)... This should be interesting. I just hope it works!!!!
We're still waiting on the results of what the doctors want to do about my hip... I'll post when I find out.
And then today I had an appointment to go see an orthopedic oncologist for my hip and the avascular necrosis (blood stops flowing through the bone, causing it to die) that developed in it... I didn't receive the news I was hoping for. I was hoping that the doctor would just tell me to go to physical therapy or something like that and to keep taking extra calcium... But, instead he told me that there are a few options (none of them appealing to me), the first one is to do a surgery where they drill a hole in the top of my femur that goes into the hip joint (b/c that's where the avascular necrosis is), and by doing that, they hope that the bone will regenerate itself and in the process bring blood flow back through to where the bone has died. I would definitely go for this, except there is no guarantee it will work. The next option which may be what I am forced to do, is just wait it out and see what happens. I might have to do this, b/c we aren't sure if having surgery now will interrupt my chemo schedule. The problem with waiting it out, is that more of the bone may die and eventually just collapse. And in the end, a hip replacement will be my only choice. OR, I could get lucky and blood may start to flow through the bone once again.
The meeting with the doctor was upsetting, because he didn't have a solution for me, or a clear-cut answer on what we can do to fix my hip. I wouldn't mind going through any procedure as long as I was assured that it would heal my hip. I'm really worried about this, because right now (for the next few years) I don't mind going through treatment and dealing with the side effects of curing my Leukemia, but I don't want it to effect me for the rest of my life.
Anyways, the doctor is going to talk to my oncologist and his partner who he works with to try and decide which is the best course of treatment. UGH!! This chemo stuff and it's side effects really stinks!
Thank you to everyone who has sent me cards, gifts, called me, visited, thought of me, signed the guestbook. I really appreciate it all.
Today I started a new drug, Methotrexate. They didn't give it to me at the clinic yesterday, because it can't be given the same day as the L-aspariginase. So, my mom had to push it through my catheter today (I was a little nervous about that!), but everything went pretty well.
And I finally have an appointment scheduled with an Orthopedic Oncologist.. I didn't even know that occupation exists! The appointment is next Tuesday, so hopefully he will be able to tell me what I can do to try and prevent the avascular necrosis in my hip from getting worse. I do have some VERY good news... my bone scan came back, and it shows my hip bone to be completely normal. This means we caught the avascular necrosis before it started to cause osteoporosis.
We are flying to Boston tomorrow to visit my grandparents and some aunts and uncles. So, I'm pretty excited to visit with everyone.
-Kim
Meanwhile, my oncologist came in and told me the results of my MRI from last week. Nothing is wrong with my back (they were checking to make sure that I didn't have a slipped disk or anything like that, b/c I've been having pain while walking and sitting in my lower back and hip). But, my hip is showiing early signs of avascular neucrosis (blood is not flowing through the femur at the hip joint). This is a result of the amount of steroids that I am taking to help get rid of the cancer. So, now I am going to see an orthopedic oncologist to check out my hip some more, and see if I need to have physical therapy to help it out and whether or not I should have weight bearing restrictions. Also, we are still waiting on the results of my DEXA scan (bone scan), to see the amount of damage or bone density that may be missing due to the avascular neucrosis. FORTUNATELY, it appears to be caught really early, so blood flow will hopefully be restored and my hip/femur won't degenerate (and not need a hip replacement). For the next three rounds of chemo, I won't be receiving the prednisone(steroids), to help try and get the blood flow back, anddd I will most likely be put on a drug similar to Fossimax, but instead of being given it through pill form, it will be given through IV.
That's about it for now!
Check out Terry's racing page... http://www.active.com/donations/fundraise_public.cfm?key=tntorTJordan
It's really exciting to know that I'm getting through the worst part of my treatment. I still have a long way to go, but the nurses and my oncologist have all told me that the hardest part of the treatment is the first 6 to 9 months, and I've completed 6 months of treatment so far.
"Success is not final, failure is not fatal: it is the courage to continue that matters most."
- Winston Churchill
Check out Terry's(my mom's good friend) webpage and her progress in training for her upcoming race and marathon to help raise money for the Leukemia and Lymphoma society.
http://www.active.com/donations/fundraise_public.cfm?key=tntorTJordan
Today I had chemo. We thought it was going to be a quick, easy day because I was just scheduled for the L-aspariginase shot (in my leg). But, it turned out to be a very long day for us. My red blood cell count was very low (22, normal is around 34), so I ended up getting a blood transfusion. I received two units of blood, each taking about three hours to transfuse. We arrived at the hospital at 9:30 a.m. and left at 5:00 p.m.! Besides that, everything is going very well.
My mom's good friend Terry Jordan is running a race in Portland, Oregon and a marathon in San Diego, California to help raise money for the Leukemia and Lymphoma society. She is running in honor of me and in memory of her little girl Emily.
Check out her webpage: http://www.active.com/donations/fundraise_public.cfm?key=tntorTJordan
Nothing new going on, handled the big treatment from last week very well. Was feeling well enough to finally get out of the house to do some shopping by the end of the week. Paul came to visit this past weekend, and we went out to eat twice... Before this weekend, I haven't been out to eat in more than a month.
The hip pain seems to be pretty well controlled right now, making it a lot more easy to move around. Still have an MRI and DEXA scan scheduled for the 29th to make sure that there is nothing wrong.
I got the results of the x-rays to my hip, they showed my hip to be normal. But, the doctor still isn't sure what the pain is from. She thinks it could be either a slipped disk in my back, or it be the beginning of avascular necrosis (when the blood stops flowing through the bones, as a result of high doses of steroids... resulting in bone mass loss). So they scheduled me for an MRI.
This week my mom and I started setting everything up so I can go back to Binghamton University next year. YEAH!!!
While I was in clinic today I also received a bear from the starlight starbright children's foundation. It's a great foundation that sends teddy bears to children in hospitals who have a life threatening illness.
http://www.slsb.org/
Monday, February 21, 2005 1:45 PM CST It was chemo day today. Only one drug this time given through a shot. It was supposed to be a short day at the clinic today. But my blood counts came back, and everything was really good, except my red blood cells were a little bit low (they were 24 and normal is around 34). So, they decided to give me a blood transfusion today. I've had about 6 or 7 of them since I was diagnosed and never had any problems. But, today I had an allergic reaction to the blood. So, they had to stop the transfusion, and I need to go back on Wednesday to try again. Besides that, everything is going well. Monday, February 14, 2005 1:28 PM CST Went to get chemo today - Three drugs intravenously, and one intramuscular(shot).
2 drugs intravenously, and 1 intramuscular. Monday, February 14, 2005 7:57 AM CST CHEMO DAY. Sunday, February 6, 2005 9:08 AM CST This page has just been created. Please check back for additional updates.
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