Notes From Supergirl

My Diary from the Trenches

Day 558

December8

I’m sorry I didn’t update anything yesterday. I was having a terrible time with nausea and the third medication they gave me in the afternoon knocked me out for the rest of the day. Which was actually a good thing because I slept through my second dose of radiation. The first dose, in the morning, ended up being very emotional for me. I couldn’t stop crying when I got off the table. I think it was just the reality of everything I am going through and praying that this all works. I NEVER want to have to do any of this again. Giving 2 years of my life to fighting this cancer feels more than sufficient to me!

But onto today … my lovely new donated stem cells were given to me around 11:30 and the whole process didn’t last more than 40 minutes. Once again I was given IV Benedryl and steroids to prevent a reaction so my head remained in the clouds most of the day. Although the medications are helpful at relieving symptoms, I hate the way I feel when I am on them. The nausea seems better today and I’ve been able to eat a little, so hopefully I will be able to stay away from any of those meds for a while.

Getting back to the transplant, I was somewhere smack in the middle between excitement, nervousness and that good old “how did I get here?” feeling. The process is as simple as getting some IV blood yet it carries these millions of cells that will change the entire function of my immune system. Crazy, huh? Brian took pictures and video so I’m sure they’ll show up somewhere.

What happens from here is that we wait for my counts to go down and then come back up again. Most likely my counts will be bottoming out early next week and then it will take a couple of days for them to start coming up. That bottom part is where I might end up with some issues and I just have to do the best I can stay healthy, infection free and up-beat. And for those of you waiting for gory detail updates, next week would be the week that could happen. But let’s hope it doesn’t!!! I hate to be a bore, but boring is BEST in this place!

Before I go I wanted to share this picture that Holly took of me on Tuesday. It is me waving goodbye to chemo – hopefully forever!

Bye Bye Chemo!

So thank you Holly for being there to share the great goodbye with me! Also thanks to Brian, a great crew from Ulman Fund and Roseann who all visited today. And thanks, as always, to my dad for bringing me snacks and magazines. There’s just a few things a girl needs in this joint – love, hope, snacks, something to read and something to exercise on – and all of you have given me those in one way or another.

One last thing I wanted to do is say an enormous thank you to my incredible donor, wherever you are! I only know a couple of details but the rules of the system are that the donor and the recipient are not allowed to be identified to each until one year post-transplant. What I can say is that my cells came all the way from Germany! For whatever reason, I had a feeling that they may have been coming from someone in our military and when I found at they came from Germany (where we have a huge base), the nurse practically confirmed it. So at this point I can guess that it is a woman from the Armed Services who may be stationed abroad. I could be wrong and it may just be a German citizen, but in either case, they are incredible to me for having gone through this process for a complete stranger half way around the world. I am forever grateful and quite humbled. I only hope I will be able to thank her in person one day.

Day 556

December6

Well I have some very exciting news to report today – I may have just finished my last dose of chemo… EVER!!!! Let’s restate that, that WAS my LAST DOSE OF CHEMO EVER! Wahoo!!!!!! Now big fingers and toes crossed that the sentence holds true for the rest of my life.

Tomorrow is two doses of radiation and then Thursday is the big day. I don’t know about anyone else, but this feels like it’s going pretty quickly right now. My counts are begging to drop but I still feel okay. I had some mild nausea today and also wasn’t doped up on Benedryl, so that helped a little.

I got in a good run and lots of walking and finished the first book I had download to iTunes. It is my goal to finish an actual book while I am here too, though somehow I manage to keep myself busy enough not to find the time to do it.

I had a great visit with Melly and Heather today. Heather brought the adorable Christmas hat you see below:

Christmas Hat

It has been a big hit here on the unit as well as at home with the kids.

Kay also stopped by for a very nice visit, as did Holly who filled me in on all of the room mom activities I am missing at home. It is hard to believe that my kids only have a week and a half left of school before they are on winter break. I am hoping I get through this in one smooth piece and get to spend most of that time with them.

I didn’t get to see Kelli, but received a lovely package from her included home-cooked goodies and an adorable motivational sign.

Many of you have been calling and emailing and I apologize for any lack in response. I’m functioning well, but definitely a little tired. It feels harder to find time to pick up the phone, but then my internet cuts out so I’m not much use there either.

I’ve made it a goal to really work on defining myself while I am here. What makes me happy, what I truly love, my bucket list of things to do – explaining beyond the things that may already have been said and done to create a genuine list that defines me and what I want for my life. We should all have this and many of us never get a chance to do it. To start with, I thought I would end each post with a love/gratitude list of 10 things from each day. Each day I have something to smile about and I don’t want to forget any of it.

10. My hat from Heather

9. An email from Kim

8. Finishing “The Power” on my iPod

7. A visit with Kay

6. Reading a Christmas book to the kids

5. Receiving a picture of my new floor from my contractor

4. Laughing with Holly

3. Heather’s cowboy boots

4. Melly’s wisdom

3. The warm thoughts and health and healing from Kelli’s gift

2. An article about Yoga as Religion

1. Finishing chemo!!!!

Day 555

December5

Today was fairly uneventful. My liver enzymes went up slightly to a high level which they say is a result of the chemo that I had over the last two days. I am finished with that chemo so they expect they will drop back to normal in the next few days. That may be most exciting medical thing that happened today :)

I also finished the rabbit blood stuff that I was getting to prep me for transplant. I will start another medication tonight – all are designed to suppress parts of my immune system so that my cells don’t reject the transplanted cells. These things are definitely making me a little tired but I am trying to get up and walk around frequently so that I don’t just sleep all day. I’ve worked out over an hour and a half on the treadmill (split up morning and evening) today, just to do something. I do enjoy reading and listening to the books on my iPod, but things are a little boring. Tomorrow I have a number of people coming to visit so that should be exciting.

I also look like a big puff ball right now, definitely not my chipper self. I am pretty pasty looking and swollen with fluids. I normally have very low blood pressure and a low heart rate and both of those have dropped even lower as a result of the meds, so they are keeping me on lots of IV fluids to try to keep those numbers up. The result is that I have put on over 5 pounds of fluid in the last few days and I barely recognize myself in the mirror. Can’t wait for my friends to see me like this! I should come off the fluids in the next day or so and things will return to normal.

I wish I had something more exciting to report. Things should pick up over the next few days, but let’s all hope that I remain pretty boring. Boring is best in a hospital setting – that is one thing I’ve learned for sure through all of this!

posted under Part 3 - The Allo-Transplant, The Daily Record | Comments Off

Day 554

December4

I’m going to write quickly tonight for fear of my internet going down again and because I am exhausted from some medications they gave me today. I started a dose of Thymoglobulin, which is a blood product that helps my body to prevent it from rejecting the transplanted blood from the donor. I don’t completely understand how it works, but somehow it mixes human blood with rabbit blood and is then injected into me. To prevent my body from rejecting this drug, I have to take two doses of benedryl, tylenol and a steroid. I have been in la-la land most of the day. I have to do this again tomorrow as well. But the good news is that I only have two days left of chemo! On the 7th I will do radiation and then the 8th is the transplant. I think I said this incorrectly in an earlier post when I mentioned I would be having the transplant the same day as Pearl Harbor Day. This will not be the case.

I had a lovely visit today with Gigi and Amanda and my dad came later on to bring some food. I’ve also had the pleasure of a couple of great visits with Roseann. I certainly can’t complain about being lonely! And Gigi left me with a beautiful box of Origami projects that I will be tackling over the next few days. Perhaps this could be a new hobby for me? Stay tuned!

Day 553

December3

I am having a really hard time with this internet access!!! I wrote this entire blog and then hit “post” when I discovered that the internet was no longer connected! This is the third time I am trying to write and post it. Basically, their internet kicks me off automatically every couple of minutes and it takes a good 5-10 minutes to get back on and reconnect to everything I was in the middle of working on. It’s also made Skyping with the kids a little challenging.

Aside from that, things are going well. I got in a good workout this morning, some quiet time with mindless magazines and way too much Food Network and HGTV – all things I would never get to do at home. The food remains terrible, but I have lots of snacks and a great organic version of Ensure that I am loading up on in between meals. I am doing everything I can to keep my weight in check this time. Hopefully my liver cooperates.

The chemo has been very tolerable so far. They have given me a number of medications to prevent reactions from the chemo as well as to prepare me for the transplant. I’m feeling some fatigue which I think is a result of the meds and the weeks of preparation and running around that led up to this. They have warned me that I’ll be pretty tired in the days following the transplant and probably won’t have much appetite, so I should stock up now! I’m doing what I can.

I had a very uplifting conversation with my friend Michael today, a former donor transplant patient who is now over 3 years in remission. He offered many glimmers of hope in the journey ahead. I know that we will both have different experiences, but it is good to hear stories like his.

I wish I could remember some of the other things I blogged about before my internet cut out, but that will have to do for now. I’m going to settle in with a good book and watch It’s A Wonderful Life. I don’t think I’ve ever watched it by myself before so I may end up with more Food Network again later. Thank you all for the calls and emails!

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