Written 6 minutes ago
Dear Family & Friends, I appreciate all of your emails and text messages checking in. Sorry I’ve been so quiet but I have gone a bit silent on facebook and some other things. I appreciate you reaching out to my everyday contacts to fill you in, but again, sometimes no news is good news.
It’s been a crazy two weeks with lots of ups and downs with the pains. When you have pains like this you tend to try to sleep it off and just aren’t much in the mood to talk as you are so sedated from the painkillers. I kept joking to the doctors on Tuesday how I’ve become a drug addict, but thankfully I do not have an addictive personality so could probably stop, but let’s not as they work!
I’ve been sleeping a lot during the day and when I am awake I am keeping as busy as ever. Niomi is loving gymnastics and having playdates with old friends and now some new friends from her new school. She has fully adjusted to having Jen and doesn’t get mad that it’s not me anymore. She has adjusted to the fact we are all around at night and when we have lots of company, etc. popping by to drop of dinner or to say hello than I send Jen home early. Somedays she just isn’t in the mood for company so hides in her room with Jen. You can tell she’s had enough at school or is just tired so wants some privacy. Little girl all grown up.
She loves her room!!!! We went to IKEA on Sunday and found these great cabinets that fit under the loft bed and on Tuesday we ordered a little desk and chair that should fit in her room perfectly. It’s so cute and that will end up being one of her Hanukkah presents, as she doesn’t expect it. We also got our tree on Sunday. We decided that we have out done ourselves in the past and got a much smaller tree and didn’t overdue the tinsel. Thank god! It’s just a great tree. On Friday night Keri and I hit the Christmas stalls with the kids and we bought our 2012 ornaments and had our hot cider and hot chocolate. I love going to the stalls. It brings it all back to wonderful memories since moving here and seeing how old the kids have gotten. Nothing like Christmas in NYC! The lights and the vibe. You just can’t beat it. We are also crossing something off my bucket list and going skiing to Stratton next weekend with our friends Lisa, Andrew and their daughter Isabelle Grace. We are so excited to see the girls on skis. I’ll miss being on my own pair but seeing her is what matters.
I want to thank everyone that is part of the dinner deliveries. Whether it is homemade or delivery, it makes my life so much easier as I truly can’t cook. I am not able to go out food shopping for large quantities, as the bags are to heavy so this is truly the most helpful gift from everyone. Jess also has a list of delivery menus she has compiled. I’m so grateful to her for handling this. The following is what Jessica sent out in case you would like to sign up:
I’m sending out this email, as December dinners need to be filled. If you can take a look and sign up that would be great. As always thank you for doing this. I know how much help and how much it means to Meredith and her family. In addition, I know many of you ask where to drop off the food. I have updated it in the care calendar, so you will see it says the SRO desk, which is like the doorman for the apartments there. If you have problems with the calendar, please email Jessica at firstname.lastname@example.org. If the schedule if full, you can email Jess about Jan.
Helper Log In:
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This is a huge part of the cancer—not letting people help yet. By me letting have people deliver dinner for us vs. us cooking is a big step. I am now letting Jen pick up food when I truly know it’s too much for me to carry. I’m just not ready for my independence to go away so it’s step by step.
I have had some great visitors over the past two weeks-my uncle and aunt drove down from upstate and they mean the world to me. I love spending time with them and they were just always the coolest so to get a couple hours with them brings everything down a level and makes me happy. Simeon and Heather also came through town for a quick couple hours so I got some special time with them from Boulder, Stephanie came by for some quiet lunchtime girl talk and my dear Rhaea from Boston, who I hadn’t seen in over probably 8 years, was able to come and spend an hour with me. She’s been so helpful to me with pain control and putting me in touch with people who can help me with what’s going on. And lastly I had a fun lunch with my friend Jacqueline from Laguna and our friend Hobby from downtown. I loved going out of my little neighborhood and having some fun while catching up with the girls. That night we went to DMB at Izod Center. It was Gary, Jenni and another friend of theirs from work. We had so much fun and I was able to get silly. I bumped into some old friends and colleagues and I still get my little drive of excitement; which feels good. They all look at me like, is that really you, but it is and it’s nice to see them and to say, I’m alive and at another show. I think Gary also likes seeing me in my place where I am very comfortable and confident.
Lisa and I brought the girls to see Angelina Ballerina Christmas show. It was so much cute! The girls were called onto stage and got to dance with the characters. We also had play dates this weekend and have been keeping really busy. I’m also still baking with the special ed kids. Last weeks project of making smores was a disaster and Niomi was laughing at how much I was cursing, but I couldn’t help it. Instead we came up with projects for the kids using marshmallows and we ate the smores I made the night before. Must admit, they weren’t my prettiest batch but they were damn good! Tomorrow I get to make up for missing the circus and am escorting Niomi’s class to see it. I think it’s going to be fun especially as all the Kindergarten kids plus special ed kids will be there. I can’t wait to see their reactions.
Now onto the medical update—Medically the pain is about a 5, which isn’t so bad and livable. Part of the problem is A-we HATE our new mattress. It is so uncomfortable and Gary and I are both sore and our backs kills us. Solution, the bed was picked up today and we will have a new one tomorrow. I’ve spent the last two nights sleeping in my chair and I haven’t slept that well in awhile. Plus I’ve become obsessed with the show Homeland and every night I am cuddled and watching the old episodes. As of today I am caught up with the rest of the world. So good!
B- sleeping. We don’t know if it’s tumor fevers or something to do with all the narcotics. I wake up completely soaked throughout the night and I have no idea what is going on. I know its not menopause as I’ve been through that part. This is an entirely different level of what is going on. Today I woke up with my painkillers all over me and a bottle of water. I know the alarm went off at 4:30 but I have no idea how the pills got onto me. Wacky!
I moan when I am trying to get comfortable and walk a bit funny and slower than usual. I couldn’t get into the Sloan pain doctor until next Wed, which has been almost three weeks. Through Rhaea I reached out to a pain doctor at Columbia. We got on the phone last week for an hour and broke everything down. He explained that due to the fevers my fentanyol patches aren’t working after 48 hours which means I am going over 24 hours without pain medication in my system. My pain spikes to an 8 on those days. Fentanyol isn’t helping with the fever. We finally met with this pain doctor yesterday. It’s not Sloan Kettering but he was a very cool doctor who really seemed to get it. We sat down and went through everything I have tried and what I haven’t. He was great and wants to shake up my regiment. I told him I wanted to run it by Robson and they should speak first. He was cool with that. We are going to try to get me off oxy and fentanoly and get me on methadone. Plus meds for sweating. He was shocked to see how much pain I am in because there is so much cancer in the bones in the spine but these meds should be working for me. He did a full exam and didn’t like seeing my pain level when he pressed on certain areas of my back or around the liver. Spasms were start very quickly and he said this should be more under control. We are also thinking of doing a one-day treatment of a special radiation on the hips. I forget what it’s called. Radiation scares me, but if it’s one day, little toxicity and no steroids so I will handle it!
On day one of the new patch, I feel great and I have energy and can walk and don’t need help. By day two, I need to push off the toilet sink to use the bathroom and I’m slowing down, day 3—pain is there, energy is gone and I need assistance getting up and down. In front of the doctor I went into a full fledge sweat attack. Everyday between 3-6 it just happens. No control. Hair soaked, putting washcloths on my face, scratching my face and scalp. This then happens again from 9:00 p.m. on all night.
We are going to introduce methadone tonight and eventually wean off Fentanoyl. We also have to decide about the radiation. I’m meeting with Sloan’s team on Wednesday per Robson but we are moving forward with the other doctor’s plans in the meantime. He only said no to speed as he said, I already don’t sleep enough at night so he doesn’t want to introduce anything that would keep me awake. I agree.
After this appointment we went to see Robson. He was so upset I wasn’t with Sloan’s team and mad at his team. He didn’t know the pain had increased that much and that I had been in urgent care. He felt horrible and said he should have known all of this.
When he came in I had once again been sleeping and he told me to stay there lying down and he pulled up a chair. Mom, him and I sat there having a 40 min chat. I would like to leave most of this conversation personal due to doctor/patient confidentiality but it was the best talk as my mind had gotten very confused earlier in the week and I had attended the BCRF Symposium; which always puts things into my head.
My parents and Gary are amazing. But behind my back, we have been on different pages. When I was told 6 weeks to 3 months, I put all of my focus on that. It turns out, that they have been doing their own research to keep me around longer and to see what trials we maybe missing or should look into. During all of this time they haven’t had to tell me they were doing this, but last week they needed me to make a call to give verbal permission to MD Anderson to speak to their team about the trials and programs. I was very upset about this for many reasons. The most is that my mind is so at peace with the decision I made regarding moving forward with treatment. As a parents and spouse, I respect what they did and why they did it, but I needed to live with it for a minute.
During that minute I reached out to BCRF and Myra. I said I know you know them well. Can you reach out to them and pull the strings. Within 5 minutes my phone was ringing. The make up symposium that was canceled during the hurricane was taking place the next day and my mom and I must be there. I quickly called mom and asked her to call Myra as I was to tired and sedated to handle. This is where it becomes difficult—I start obsessing. Why haven’t we heard back. Is this the last Hail Mary? Why didn’t we know about these trials and do I qualify. I love living life. It’s fun no matter how hard it gets. But now I am questioning every decision I have made and have become content with.
Mom and I went to the BCRF Symposium and I got up and asked a question. It was the top doctors from around the world. To sum it up--I said, you are presenting all this great stuff but what are you really doing and what about patients like me. I was crying and it made other people cry. They thanked me after for bringing the symposium down to a human level vs. just medical updates and facts. Myra then took my mom and I in the back and we met the head guy at MD Anderson. He was so sweet and very sorry for my position. Mom handed him all my paperwork and he said he would review and would then meet with his trial team.
Mom and I told Robson everything that happened. Robson is doing everything he can to save me. He would do anything. There are chemos out there, but again, they aren’t to save my life, they are to extend a bit, but I will still live with the toxicicity of the drugs and the pain.
We then talked about my decision. He explained how there are tons of trials out there, but not many for a person in my position. Sadly those trials can also backfire and hurt someone like me and make it worse. He’s so sad when he speaks to me as we have a very special relationship and he’s a parent so understands what my family is fighting for.
He turned the tables then and mentioned how much I’ve been doing in six weeks and how I wouldn’t be doing this if I were on chemo. He told me to go to Florida over Christmas and then he said a few other things that are between patient and doctor. I’m seeing him again the 18th and then we will speak during the holidays as they fall on his clinic day.
He said that I shouldn’t worry as I’m special and he will be there for me. He still can’t give me a time frame and he knows I want one, but he can’t. My liver function # actually went down. He can’t read minds and he can’t read the glass ball. He just agrees that I should continue down this path that I have already chosen and to live life every day and every minute. They will get the pain under control and we should keep doing as much as possible while we can. So the plan as of now is Florida over Christmas. This could change, but that’s the plan and we are moving forward with it. Gary will come back earlier than us and I will be back for Coldplay. NYE, we both don’t care about and Gary will be working anyway.
That’s the latest update. I am just dealing with things and something’s I just can’t discuss. My mom comes in once or twice a week to help with laundry, doctors, run errands with me to keep me going, etc. and I see my dad on the weekends. Gary and I go out as much as possible and spend as much time together as we all can.
Mom and I were lucky enough to see a screening of Les Miserable’s last night. Sadly I slept through most of it, but saw the songs I loved. Mom cried and cannot wait to see it again. She loved it and couldn’t believe how beautiful it was. I must now see it again, but at least I saw the parts I wanted and can relate to it. I love my mom, dad and Gary more than life for what they did for me and I understand what they were doing, but I am glad that Robson really spoke to mom about it and they understand why I made my decision. If something shows up at MD Anderson, then we will look into it, but I would rather spend my last few months living that being sick in a hotel room in Houston where we don’t know what will happen as these are early trials.
I’m off to sleep in my chair until our new bed comes tomorrow. Officially weaned off oxy and onto meth. Let’s see how this goes. I just want to continue doing activities with Niomi, celebrating Hanukkah and Christmas with friends and family and going down to the sunshine state. I can’t wait to sit on the beach with my friends and to hang with my brother and the family.
About the little girl I asked for prayers for 10 days ago, sadly she didn’t make it. Not cancer, but a freak illness that is heartbreaking. It was hard to tell Niomi as she kept asking questions about how she was just holding her, but to Nicole, John and the rest of the family, there isn’t a day that goes by that we don’t think of baby Ella. We promise to spoil her twin Abigail as much as possible or are allowed!
This weekend Hanukkah begins and Niomi is all ready for it. She also has her elves in the house. It will be fun celebrating as again I didn’t think I would be here. This not knowing makes it so hard. 6 weeks-3 months. We officially passed 6 weeks. Just maybe I’ll be a miracle and live longer than expected without the toxicity of chemo. Everyday is a new day, so don’t forget it. Live it! Love it and even on the bad days, find something to smile about. Even if for a second. I know I do.
Happy Hanukkah to the Hebs out there. I’ll check in before I see Robson or if there are any updates. Sorry again for not being on facebook or answering phone or texts. Just tired and as they said, this is what happens with cancer. And a special shout out to my sister Holly who has been helping me with decorating the apt and all the artwork. I love our lunchtime work plans and organizing together.
Love always, Meredith
Here's a photo of mom and I they took at BCRF symposium lunch. We sit with a great table of women and BCRF are now $.91 to a $1.00 for research only. That is who I chose to donate to if you ask me about BC charities. Otherwise, I would only do directly to Robson's research clinic.
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