Possibly Day -32: The Sound of Silence

"There are somethings in life that simply can't be avoided, no matter how uncomfortable they make us. And there can be rewards in stepping outside your comfort zone. Even when the thought of it makes us want to puke. Even when we want nothing more than to run screaming for the hills. They say what doesn't kill you makes you stronger. But sometimes, those people don't know what the hell they're talking about."

-from Grey's Anatomy

When I last left you, I had just heard from the hospital and my nurse coordinator that my bone marrow transplant was on hold as a result of my perfect donor, the one willing to give up 1.5 liters of her bone marrow, having a major health event. My back up had been called. 

I've gotten all kinds of questions from my family, my friends, other cancer patients, other potential bone marrow patients, and also bits of wisdom from other bone marrow transplant survivors who have had similar things happen to them. 

The first question I've gotten, from nearly everyone, is how often does this happen? Certainly, when we're dealing with imperfect humans (which we all are), things happen and they become ineligible to donate. But does it happen literally when you're in the end zone? Not often, though I've heard from a few people who it has happened to, like me. So if you're awaiting a bone marrow transplant and you're reading this, don't think that this is likely to happen to you. The chances are slim. 

The next question was asked by my brother and dad. What would've happened if they started chemo on me -- the point of no return, essentially -- and all of a sudden this donor became ineligible? Because I am really, really lucky that didn't happen. If that happened, I could've died. So as heartbreaking as this was, I'm glad I found out about this before we crossed into that space where there is no going back. And that's a question I asked my nurse coordinator: What would've happened if I was already depleted of bone marrow and suddenly I had no one to give some? 

The answer to that question is this: it's very, very rare. But they would've tried to get a back up ready to go as fast as possible. I also know there's a shot called neupogen which encourages the white blood cells to grow and maybe that would've been a very temporary answer, but I honestly don't know. 

But this did prompt my team to start the process of reaching out to more than just the back-up donor. And this answers the most prominent question: What's next?

So, my back-up donor, now known as donor 1, and the back-up-back-up donor, now number 2, were both contacted. Both of them live out of the country. Both have committed to donate to me. However as of now, they have not returned calls about getting the appropriate blood panels done to have the formally, officially chosen as my donor. Time zone differences can be a real hurdle when it comes to international donors, at least from this particular stand point. Both of these donors are willing and able to donate through a bone marrow harvest.

I spent most of the week waiting for answers that just weren't there yet, no matter how many times the transplant coordinator called the National Marrow Donor Program. I went through a lot of anxiety and a lot of tears. I survived this week on Lexapro, Xanax, and a lot of naps. It was all difficult for me to handle and process. My mom said she was afraid I was going "dark and twisty" like Meredith on Grey's Anatomy. But truthfully, I just needed to escape, and without a place to go or really anything to do that could hold my attention, I turned to sleep instead so I wouldn't get dark.

Since donors 1 and 2 were not responding, they contacted donors 3, 4, and 5. Donor 3 has completed the entire process and is officially set as my donor -- at least for now. If he or she does end up being my donor at the end of all this, I will be admitted July 18 and be transplanted on or around July 24, which is why I'm calling today PROBABLY -32. But things could change. Monday morning things could change. But at least for the weekend, we're on probably -32.

Why are they still searching? Well, a couple of reasons. 

First of all, they'd like me transplanted sooner. The Hydrea I'm on is not a long term solution and it's close to driving my counts down. So there's a potential balancing act there that we're trying to avoid, especially since I have a line in. If I were to become neutropenic (less able or unable to fight infections) with a line in, that could be dangerous. It's very easy to pick up infections. So if we can find someone who can donate sooner, we will. At this point, my team is going to take the first available donor. Right now, that's donor 3.

Secondly, they'd really like someone who can complete the bone marrow harvest. Donor 3 weighs considerably less than me, so to take 1.5 liters of marrow from her is just not possible. So she'd do the peripheral blood stem cell collection, otherwise known as PBSC. This is the most common way of doing things now. And while patients these stem cells tend to engraft faster than those from a bone marrow harvest, they do have a slightly higher rate of GVHD. In the end, they're ALL stem cells and they will ALL do the job, but my team would still like a chance at a real bone marrow harvest, so we are holding out hope that donors, 1, 2, 4, or 5 will respond with blood panels and clearances and be available for harvest.

So at the end of the week here, we finally have some good news. There is a donor, there is a date. It's just questionable whether that will stick. 

It's a weird position to be because I am truly, truly grateful for this donor and I'm grateful to know that I'm not going to be waiting endlessly. But I got attached to the idea of a bone marrow harvest and I'm terrified of GVHD, so I'd still like that possibility. But truly, I will be happy to take cells anyone is willing and able to give and all five donors are equally matched to me, 10/10.

So I'm taking all prayers, crossed fingers, good thoughts, great vibes, and positive energy and anything else you're willing to throw at me and the donors for this situation.

Now, let's talk about my tri-fusion central line and what it's like taking care of that day-to-day.

First of all, I've lost track of how many strangers who have seen my boobs since my line was placed. At the start of the procedure, they have you open your gown so your chest is visible and then they taped a blanket just above my nipples so you couldn't see my whole breasts, but just enough for them to place the line. But in doing that, they definitely saw my boobs.

Last Saturday, I went to one of U of M's Infusion Centers to get it the lines flushed and the dressing changed. On Monday, I did the same thing. 

On Tuesday, I went to U of M for a teaching session with my nurse and my parents on how to care for my line. Every day, I have to flush each line with a small amount of heparin and replace the green alcohol-infused covers (some people call them caps). Once a week (or whenever the dressing gets wet, gets soiled from drainage, or starts to come off) I have to change my dressing. Also once a week, I have to replace what they call the caps that are between the green covers and the hub of the line. My mom learned how to do everything and my dad learned how to flush the lines and change the caps -- he can't do the dressing because it involves me being shirtless. A big box arrived with all these supplies on Tuesday. We've gotten pretty good at flushing the lines and we've changed the caps and dressing once. We'll be changing the dressing again today because it drained and had some superficial bleeding overnight. I'll be taking this opportunity to shower before we change the dressing. I have to cover the whole dressing in Glad Press and Seal Wrap beforehand. 

My biggest complaint is that it's itchy. I'm reacting to the adhesive and it itches literally all the time. The biggest relief it when we get to take it off for a dressing change. If it keeps bugging me into next week, I'll have to ask about something to soothe it. I also know there are other dressings that do the same thing but are supposed to have a more tolerant adhesive. 

I don't know how long I'll be keeping the line. My nurse-coordinator is definitely nervous about it and of course, I don't want an infection, but I also imagine getting it taken out and then put back in would be extremely painful. So I want to try to keep it as best as I can. 

So that's where I'm at right now. I'll post more as I get more news. Thank you to everyone who has reached out to me on Facebook or email. I really appreciate it!

xo,
Heather