Nothing Says Success like Being Reminded You Could be Dead

Today was an unqualified success. Yesterday I went in for a PET/CT (which shows if there's any cancer growth). I'm already over 30 days out from receiving my donor cells, so it was time to run a check and see how things were going. Results were already back today, and clean as a whistle. No cancer on the scan.

Plus my graft vs. host (GvH) is starting to clear up even more. My hands chest and head are starting to look normal again and I'm able to do things like open bottles (which was much too painful just a week ago). My mouth is still quite raw inside, but it gets a wee bit better every day. I still have eye irritation, but I think that will abate once my steroids are reduced.

Which is why I was thrilled when the doctor told me that we're reducing my dose of steroids again. I'm on a metric ton of them, so it's a slow and trying process to come off of them. But starting out at 80mgs of steroids twice a day means I have a long way to go. Now I'm down to 2 doses of 60mgs a day. The lessened dose will make my muscles (and apparently ankles) weak, but I'm anxious to be on the lower doses. Steroids have some nasty side effects and I'd like to avoid as many of them as possible.

This is *most* of tomorrow's pills. An additional 7 and that's it.

 So everything at today's visit was looking up. The doctor even gave me a few days off from seeing him in the office (back on Friday afternoon). Last week I was there Mon - Sat...every single early morning. So this little vacation is quite the reprieve. Of course, if anything flares back up, it's back to daily morning visits for me. For today though, I'm happily on the upswing.

And to put things even further into perspective, my doctor offhandedly mentioned that if we hadn't treated the GvH, I'd be dead. Right now. No question. The steroids and the immuno-suppressants that I whine about taking are the only reason I get to curl up on my couch with my baby girl tonight and leisurely watch a movie. That beats the hell out of dead.

Coming Full Circle

So my graft vs. host seems to want to hang around. Everytime it starts to ease up in one place, it crops up somewhere new and seemingly worse (like all over the inside of my mouth and throat). We're not just going to roll over and let it do its worst though. Today the doctor added another immuno-suppresant called Cellcept to my drug list. Along with another immuno-suppressant (Prograf), these two meds should help beat the graft back down into submission...or at least hopefully get it to quit attacking my skin, mouth, stomach, etc.

There's an ironic twist to this new drug though. All medicines that I'm aware of are required to list the side effects of the drug. Things like nausea, blurry vision, constipation/diarrhea, etc. are all just par for the course. Today's new med has an extra special warning though...

"WARNING: Mycophenolate [Cellcept] decreases the body's ability to protect against illness and infection, and may also increase your risk of developing lymph node tumors (lymphoma) and other types of tumors. ...Notify your doctor immediately if you develop signs of infection or other symptoms such as weight loss, night sweats, enlarged lymph nodes, or skin growths."

Did you catch that? My new med CAN CAUSE LYMPHOMA.

And that, folks, is coming full circle.

Give me 5 on my GvH covered hand for irony in the highest degree.

My Own Worst Enemy: Graft vs. Host Edition

Do you ever have days where you feel like your body just won't cooperate with you? Maybe when you're especially tired or feeling sick? Well my body is hosting a full-on attack on...well...my body.

I've developed graft vs host (GvH), which happens when the donor's immune system (now my new immune system, aka the graft) doesn't recognize my body (the host) and attacks it. Ideally I would develop *just* enough GvH so that the new immune system will recognize any new cancer as foreign and attack it, but not so much as to cause all these other cruddy symptoms. GvH can cause everything from dry itchy eyes, to dry mouth, to skin rashes, to gastrointestinal problems, to organ malfunction, even to death.

So naturally the doctors are taking my outbreak very seriously. They started me on 80mg of steroids a day (a lot) and when that didn't immediately work they DOUBLED the dose to 160mg a day! The first night I wasn't sure I was going to be able to sleep a wink, the steroids had me buzzing around getting all sorts of things accomplished. I'm getting the hang of it now (sleeping that is) but the steroids still haven't made much of a dent in my skin rash. Today I was told that unless my skin shows marked improvement by Monday, they might have to check me back in the hospital to get super, epic IV steroids three times a day. I'd rather not, so I'm cheering for a quick weekend recovery. Plus, it would be great if every bit of my skin above my knees would quit itching.

You can see a bit of rash on my face & neck here. I could show you the worse parts, but I'd have to flash you.

Other than the GvH and its associated symptoms, I've been doing great. My blood counts continue to look good; I've not needed a blood or platelet transfusion since I was discharged from the hospital. I'll be on "house arrest" at least until the 100th day post transplant (sometime in August). That means no retail therapy, no baseball games, no roller coaster, and no restaurants. If you ask me, I think a lunch from Penn Station and a DQ pecan cluster blizzard would do a body good, but I'll follow my doctor's orders until I'm cleared in the fall. Then I'll eat ALL the food.

On the Rise

After what feels like quite a bit of waiting, my white blood count is finally on the rise. A normal WBC is between 4.6 and 10.2. Mine went as low as .2. Then, ever so slowly, it began to creep up a few days ago. First to .4, then to .6, then to .9, and finally today to 1.5. It isn't rapid progress but it's a move in the right direction. Basically this means that the stem cells from the transplant have nuzzled down into my marrow and they're starting to produce new blood cells for me. My new immune system is in its infancy, but it's working and growing. In order to go home I need my ANC (a subset of the WBC) to be at .5 for 3 days. Today's ANC was only .1, but again that's an improvement over the previous day's count of 0.0. I'll take every step forward I can get!

The doctors and nurses love this particular room decoration.

 I'm feeling much better than I was during my first week and a half in here. My nausea has mostly subsided and, while I still don't feel like I *want* to eat anything, at least my stomach rumbles and lets me know I am, in fact, hungry. I haven't had any infections (knock on wood) with the exception of a possible small infection around my "line" that cleared up with antibiotics. The hospital is terribly boring, but I've gotten SO many cards and gifts to help keep me entertained. Thanks to everyone who has been thinking about (and worrying about) me. With any luck I'll be home by the weekend!

***Update (5/2): The doctor has decided that since I've been doing so well and since my counts are way up today (WBC 2.7, ANC .8) I should get to go home tomorrow!

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.