Hair Today, Gone Tomorrow

Today was the day I "let my hair down." Way down. Like all-the-way-to-the-shower-drain down. Almost every person who has received certain kinds of chemo (like the kinds I received to kick off my transplant) will awake one morning, look at their pillow, and see something remarkably like this...

Thank goodness Rapunzel didn't have this problem.

This is my 3rd turn at waking up to a hair coated pillow. Nothing prepared me for the first time, and not even the memory of the first loss quite prepared me for the second time. This round though, I was ready. So ready in fact that I beat the process. Many of you have already seen this, but here's Brynn cutting off my hair to send it to Pantene's Beatiful Lengths program to be made into wigs for cancer patients. Ironic wigs.

Youtube Video of the Hair Cutting

Some people lose their hair in patches, but mine just thins all over. Gradually at first but then much more rapidly. Despite clogging the shower drain with my locks, I still have enough hair tonight to perhaps have the loss go unnoticed. Tonight's sleep and tomorrow's shower won't be as kind. So I think the plan is to have one of the nurses come tomorrow and buzz my hair close to my scalp. It makes the mess on the pillow easier to endure. It also makes it easier to wear the periwinkle/lilac wig I brought just for the occasion. And in the end, like so many other things, it's no use hanging on to my hair. If it's ready to go then I can't make it stay. Luckily it's only hair and I can live without it.  And, if all goes well, I'll be growing a whole new crop of it soon.

Special Delivery: One Allogeneic Stem Cell Transplant, International Style

Ordinarily, stem cell transplants happen during the daytime, when first shift people are busily doing their first shift jobs. I'm not one for ordinary though, so when my stem cells arrived at the airport on an international flight around 8pm, we started gearing up for a late night stem cell infusion.

I was given pre-meds, like Benadryl and anti-nausea medications, so that I was as prepared as possible for the known side effects of receiving stem cells. Before the end of the night, I'd get more of each of those meds. There were additional concerns because, although my donor is a perfect match on 10 of 10 genetic markers, she has a different blood type than I do. So we knew my body might not take kindly to the cells.

♪ "Me and my stem cells..." ♪  (to the tune of the "My Buddy" or "Kid Sister" doll jingles)

Those concerns proved well founded when I (a) lost my dinner, (b) had an extended coughing fit, and (c) broke out in hives. Things were always under control though. After the infusion was complete I was given another (much larger) dose of Benadryl and you'd never have known I had any issues at all. I slept like a rock until 8:30am.

The process of infusing the stem cells was rather boring (apart from my antics). It's really just like getting blood. It takes awhile and you just sit there. Boring or not though, those stem cells are brilliant. Now that they're in my body they know to get into my bone marrow and re-grow an immune system for me. Eventually they'll completely overtake my system and even my blood type will change (to the donor's blood type and blood fingerprint).

What we hope happens is that new immune system will recognize any future cancer growth as foreign and attack it. There are worries with this too. The donor's immune system can mark *all* of me as foreign and start attacking my body from within. Fortunately my doctors are a top notch team and we're taking every precaution to prevent the stem cells from staging a full on coup. Everything from very expensive medications (like Prograf) to additional chemo treatments, help suppress the new immune system and make it less likely to rebel against my body.

A small dose of chemo, to keep my (kind, generous) donor's cells from attacking my body.

From here it's a bit of a waiting game. It will take about 10 days for the donor cells to get up in my marrow and start making any new cells to rejuvenate my immunities. In the mean time I'm taking anti-viral, anti-fungal, and anti-biotic meds to scare away any germs that might wander my way. An infection could be fatal if not caught right away, so I'm extra careful (and you thought I was a germaphobe before!). Now I'm required to wear a face mask if I leave the room for a scenic walk down the hall. Overall though, all the precautions and hiccups are a small price to pay for a shot at really, truly, FINALLY giving this cancer the boot.

A Brief Update to Assure Everyone I'm Still Kicking

It turns out that not all transplants are the same. Of course I knew that going into the hospital, but the only thing I had to base my expectations on was my last transplant. Because of that, I didn't expect to get sick nearly as fast as I did.

During my first transplant (Dec 2009) my first week and a half or so was more about killing boredom than feeling ill. This time around, however, I was feeling green around the gills by day 2, and still don't feel anywhere close to "normal" (though I am feeling better). I've been taking all kinds of medications. Some to kill viruses, some to kill bacteria, some to kill fungus, some to ward off nausea, some to help my donor cells engraft when I get them, and some chemo.

That's 3 bags and a bottle, for those keeping score at home.

I'm taking each day as they come, and some are better than others. I don't always feel like talking, texting, or being on the computer, but I appreciate everyone's love and concern. All the cards and packages I've gotten have cheered me up on dreary days. I miss feeling like myself, but a little bit of rotten right now will hopefully equate to a lot of normal old "myself" time in the long run.

Cat Poop Disease; or The Transplant that Almost Wasn't

Getting to Jewish Hospital by 8am is never easy when you're coming from Northern Kentucky. No matter when you leave the house you're fighting rush hour traffic. This morning was no exception, but I headed out anyway, ready to have a minor surgery and then be admitted to the hospital for 3-12 weeks.

But that almost didn't happen. While I was waiting to register, my transplant coordinator came down to the lobby to inform me that there was an issue with my donor. She wasn't showing any signs of being sick, but her blood work indicated that she could be coming down with an infection. Bad news, since I'm inheriting her immune system and could also be infected.

My primary oncologist was alerted to the news. He would recommend one of 3 options: proceed as planned, wait until this donor was better, or screen an entirely new donor. Either of the last two courses of action would result in a delay of at least a week if not a month or more. Everything was put on stand-by, even my morning surgery, until my doctor could review all the details.

It turns out that my donor might be coming down with toxoplasmosis, a disease contracted and spread mostly by cats. When my doctor explained the whole situation (and recommended proceeding as planned) all I could do was cock my head to the side and say in disbelief, "Cat poop disease? Really?" I laughed so hard I almost cried. Somehow I just couldn't believe that a parasitic litterbox somewhere in Germany (where my donor is from) could be a matter of life and death for me. But it is.

After a good, exhaustion-driven laugh, we decided to move forward with the transplant process now.

Step one was to install a triple lumen Hickman catheter. This is a tube that comes straight out of my upper chest near my shoulder and provides 3 lines of access into my bloodstream. Doctors and nurses love it. I like not getting stuck with needles all day long, but I hate the "line." I'm always super stressed that some tiny little germ is going to sneak into me around the area with the open hole into my body. It's a necessary evil though for the transplant, so it's installed.

The way to this girl's heart is now directly accessible.

Next I was admitted into my room, allowed to change back to my non-hospital-gown clothes, and then started on my first dose of chemo. The idea is that the chemo will eliminate any remaining bits of cancer as well as lessen my immune system (so the donor's immune system has room to move in and make itself at home). Today's chemo was called Melphalan and infused over just 30 minutes. I was so exhausted that I slept through the whole thing and don't even remember my nurse unhooking the i.v. bag!

I'm feeling pretty good all things considered. Not much pain from the line. Just a headache and sore throat from the chemo. Hopefully the sore throat isn't foreshadowing mouth sores, but we'll cross that bridge if we get there. (12:30a update: developed nausea and it's aftermath, but took meds to get rid of it. Blech!) For now I'm just hanging out in my smallish, decoration-less room.

There's more wall space than you can see here.

If you'd like to see your card, postcard, or other fun mail featured here, check out my last post here: http://sintelligently.blogspot.com/2012_03_01_archive.html
All mail is greatly appreciated (and anticipated)!

This is home for the next few weeks, help make it homey!