It's Day +33 and I have my first signs of Graft vs. Host Disease -- and, since the nurse practitioner said she expected some around Day +30 -- it's right on time! For the last three days in the shower, a red and patchy rash has appeared all over my chest, only to disappear once I'm dried off and the steam fades. I dismissed it as some sort of heat thing. Then, today, I'm sitting in clinic and I start to itch all over my chest, my arms and the back of my neck. I go to the restroom and, sure enough, the red, patchy rash is back -- and I'm not in the shower! I go back to my seat and try to play it cool, because really I'm not sure what I'm seeing. Then, a nurse I know pops her head in to see how I'm feeling, points to my chest and says, "Oh, a little GvH, eh?" I am thrilled by her confirmation of my own suspicions (remember? I said I wanted the rash. Thank you, thank you, thank you!). When the nurse practitioner sees me, she agrees with the nurse, although she says it is "mild" and "not enough to biopsy, but definitely looks like some GvHD." OK, so we don't know for sure, but we definitely have good reason to believe I have Graft vs. Host Disease, in the form of a mild rash on my chest, neck and arms (not even my face -- there is someone answering prayers, here). Horray!
(OK, I just cheered for an unsightly, itchy rash on my chest. Hmmm.)
But wait, you say, Graft vs. Host Disease -- that sounds scary -- why am I so elated? Because, as some of you may recall, a little bit of GvHD is a good thing; it's evidence that the graft is working, taking hold of my body, winning the war, so to speak. Too much GvHD, however, is bad. I know, it's confusing. But so far, I got it just right.
Unfortunately, GvHD also comes in forms much more feared and detested, specifically gastro-intestinal distress and/or liver problems. I have to admit that I am a little worried about both. Lately, I have had some crampy bowels and frequent movements of said bowels, to the tune of five times (yesterday) and twice (so far today). The nurse practitioner said it could be the oral magnesium we introduced on Saturday, so I'm to stop it and see if that helps. Also, my Alkaline Phosphate -- one of the tests that monitors liver function -- is up. The nurse practitioner ticked off a number of reasons why that could be (other than GvHD), but also said "We'll have to watch that."
I am trying to remind myself not to worry, that they have ways of dealing with these things. That even if, God forbid, I end up with the trifecta of Graft vs. Host Disease symptoms, I will be OK. After all, I have youth, medical science and all of you on my side. Right? Right.
That's the physical update. Now, let's slide on over to the more emotional side of my day. Before I even saw the nurse practitioner -- heck, before I even had my blood drawn -- I had my first I-want-to-throw-dishes moment. Going to clinic is always an ordeal. A typical appointment consists of a blood draw (one room), vital signs (another room) and about a 10-15 minute visit with your doctor or nurse practitioner (yes, another room entirely) -- with a lot of waiting inbetween. A typical appointment lasts three hours (not exaggerating). I am usually prepared for this, bringing my very large bag containing book, magazine, tea, snacks, etc. I am patient, knowing that there are people ahead of me, people with sometimes unforeseen issues and/or complications. But today, all in a moment, I was just sick of it. I wanted to stand up, rip my wig off (the pink one, today) and storm out of there. And I realized, that I wasn't just mad at the clinic, I was mad at the whole situation. I hate not being able to go see the new Batman movie! I hate missing poker night with friends! I hate it that I'm not the one who drives my kid to school or play dates! I hate that I can't even pick him up and carry him around without getting totally winded. It sucks. (This is where you all get to see that I am not always "a good sport," "taking things well," "brave" or otherwise. Sometimes I am just a whingeing cancer patient.)
Well, the good thing about those moments is that they pass. Now that I'm home, I'm feeling much better -- especially since I found more "Footballer's Wives" waiting for me in the mailbox. See, I've found that one of the best things you can do to make yourself feel better while you're fighting for your life is to watch someone else ruin their own on TV!
cheers,
Katie
Comments (8)
You are certainly allowed to vent, and you should! Off your chest and out of your system. Besides a little anger now and then means you still have will and fortitude. If you were just resigned, we'd have to start picking fights with your or something to get you riled up....
:)
In any case, I look forward to your next appearance at poker night, so that I may gleefully take your money.
Posted by Tara | July 22, 2008 5:28 PM
Posted on July 22, 2008 17:28
Dude, there will be plenty of poker nights where you can try and troll everyone's money away, and I doubt that you would think the new Batman film is as good as Footballer's Wives anyway. You are making it through, and when you do, that'll make all the additional sequels to Batman even better....and losing to me at Poker a little more bearable....It will hopefully make everything a little bit rosier.
Three cheers for a little GVH, and even more GVL (Graft v. Luekemia). F Cancer.
Posted by Peter Z. | July 22, 2008 8:20 PM
Posted on July 22, 2008 20:20
Hooray for the right amount of GVH! And yes, now we are congratulating you on having an itchy rash on your chest. This whole experience must be full of such surreal moments.
Whine and vent all you need to, Katie. We don't mind. (I mean, damn, what's the point of a blog otherwise? My blog is one long whining, navel-gazing, therapy session. Plus the occasional rhapsody about sausage, of course.) On the whole, you are being so strong and positive about this. It really must be frustrating to have to wait so long, on a regular basis. I've been getting my check-ups before our move, so have been spending way too much time in waiting rooms. (Why are they always so ugly?) That would suck to do it on a regular basis.
I am sympathizing with your frustration, sharing in your anger, and cheering you on! There are so many of us thinking of you, believing in you, and full of hope. I carry you with me everywhere I go and think of you often. (Especially when I eat bacon.)
much love,
Charlene
p.s. I like that you call it a want-to-throw-dishes moment. I'm fond of punching pillows when I'm really mad. I used to throw things (when I was alone!) but I would wind up actually breaking stuff, Pillow-punching requires less clean-up afterward.
Posted by Charlene | July 23, 2008 12:09 AM
Posted on July 23, 2008 00:09
Katie,
Oh how your posts take me back! As weird as it sounds I am glad to hear you have developed some GVHD. As I am sure your doctor has told you some of your meds can cause your liver numbers to fluctuate. Rest assured your numbers can get pretty high and still be managed and brought back down. A couple of comments about the rash... Try to stay out of the heat! Mine is very aggrivated by heat, especially at night when I am sleeping and have a blanket over me. Something else might work for you, but I have found peppermint oil (I get mine from young living oils so I know there is nothing mixed in with it) works really well at keeping me cool. Stress! Try to avoid it... I know, how can I even say that knowing what you are going through, but let me tell you when I get upset or mad it flares up a nasty red!! It sounds like you are doing great, the fact that your GVHD came before your 6 month mark is good (anything before 6 months is considered acute, while everything after is chronic, but treatable) My first signs of GVHD came at 6 months and I can assure you even chronic GVHD is managable. I am so glad you are posting about your experience. The strength and honesty that comes across in your posts is amazing. As I am counseling people these days about their cancer and their impending transplant experience, I keep you in mind and and hope that they can handle this with as much honesty and grace as you! It is hard to put yourself out there, but it helps people to understand and it also helps you to deal with what you are going through. You are always in my thoughts and I am sending positive transplant mojo your way!!
Brandy
Posted by Brandy | July 23, 2008 12:24 PM
Posted on July 23, 2008 12:24
When did medicine become alphabet soup? My neighbor's license plate happens to include GVH. I know only because I have a tight parking space and pay attention. AAA once meant emergency auto help, but then Bob got diagnosed with an abdominal aortic aneurysm, AAA. Now the Auto Club stickers remind me to say a prayer and be sure his 6-month CT scan to measure it is on the calendar. My GVH neighbor will send a prayer your way! I am glad that your healing is confirmed by this bump in the RTR--road to recovery.
Batman is getting the buzz, but I am eager to see Mama Mia. Bob and I saw the musical a few years ago and loved it. The movie won't include confetti raining down during the finale, of course; but it should still be great fun. Maybe I'll take a handful of confetti! Believe me, I'll send confetti when you are ready to party. . . soon, yes?
Lovingly, Eva
Posted by Eva | July 23, 2008 2:56 PM
Posted on July 23, 2008 14:56
Hi Katie! Good to hear that GVH (in just the right amounts) has developed. Keep it up -- you're on the road to health!
BTW, cancer or no cancer, every woman is entitled to her freak-out moments. For me, it helps reset my thinking and find new perspectives.
Since you've been watching all sorts of TV/movies, I vote for a top 10 list pretty soon! ;)
Thinking of you ... hugs!
marie
Posted by Marie | July 23, 2008 5:46 PM
Posted on July 23, 2008 17:46
Get those feels up and out. We all have them and it's just all about how we deal with the "deck" that we are given.
Cheers for the rash and on with recovery.
Posted by Jamie Zarling | July 23, 2008 7:46 PM
Posted on July 23, 2008 19:46
Dear Katie,
Gald to hear that everything is pretty much OK with the physical side of the BMT. I would be going absolutely stir crazy with resticted activity. I am a horrible sick oerson anyway-they would certainly kick me out of the hospital after a day; if that long!!!
As far as missing movies, you are still way ahead of me. I have not been to a movie, movie in over 3 years. I'm still waitng to get Charlie Wilson's War and Bucket List on DVD. I think that Mama Mia sounds pretty good as i really like ABBA. I wore my CD out and it continually skips. I wish I could figure the IPOD thing out. I just can't get hte computer to recognize it-think it is in the cable. OH, WELL. I'm still of the slide rule generation and that is really ancient.
Good news is that my financial man from my investment company came last week. And it looks like I may be able to retire next year!! I still an in shock, but that would be so awesome. All htese years of working and investing and living frugally have finally paid off. I can still work some but at something that is interesting and fun. I am pretty excited.
Well, need to clean today and it has been so hot but so has the rest of the country. Talk with you soon.
Oh, i havn't written in a while because work was 13 AND 14 hour nights and I was exhausted and by Tuesday I was really sick. so I'm up and running again.
Much love,
Mom
Posted by Mom | July 25, 2008 9:39 AM
Posted on July 25, 2008 09:39