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!