Wednesday, January 30, 2008
I am experiencing a new flare-up of my GvHD. This time it's a head to toe kind of thing. My skin is starting to get that papery, thin feel in spots and there are noticeable spots of chicken skin. My hands are pretty constantly itchy and the ever present rash has gotten a little worse. Also, the rash has appeared on the tops of my feet. Just yesterday I was joking about how horrible it would be if it spread to that particular spot. Today, I plan to joke a lot about winning the power ball drawing.
There you have it. Another bunch of quiet days.
Friday, January 25, 2008
The intrepid adventurers have returned from yet another safari in the wilds of Houston. After a long week of languishing in abject boredom without the benefit of a single blood test it was nice to break up the monotony. I had a single appointment with the melanoma center at MDA just to follow up on my skin GvHD. Believe me, I did try to have the appointment moved to coincide with a few others just to save a trip, only to be told that if I cancelled my appointment I'd have to wait until June.
Since getting off of Prograf over three weeks ago my skin has been behaving for the most part. I am fully aware of how lucky I am to have such a minor case of skin GvHD. There are patients walking around with giant purple welts and unexplained rashes that look more like flesh eating diseases. I am definitely one of the lucky ones. I have patches of "chicken skin" which are more or less kept under control by slathering on Cerave cream. As an aside, this is the best moisturizer that I have ever used and it definitely does not leave me feeling like I've been bathing in diaper ointment. My sole complaint is that my hands continue to bother me. They constantly feel dry and itchy with just a dash of rawness. My fingers continue to peel and I keep getting rashes on my palms and wrists. I've been given permission to keep using the steroid cream on them so long as I let the dermatologists know what's going on. My scalp continues to have scaly spots and there are still a few bald patches that are stubbornly refusing to grow any hair. After examining me head to toe Dr. Hymes pronounced my skin near perfect. What adolescent doesn't dream of having perfect skin?
I was attended by two dermatologists who pored over me looking for suspicious moles and any indications of worsening GvHD that I may have missed. The last time they saw me, they did find an unusual mole on my back that I wasn't even aware of. Chris assured me that it was relatively new and that he'd never noticed it before. Dr. Hymes announced that we should keep an eye on it and return in six months for a check-up. Chris asked if it wouldn't be better just to remove it altogether since my father had such a horrible time with skin cancer. She said it was really up to me and that she'd remove it and have it biopsied if I'd like. I was just as happy to leave it be, but Chris looked terrified at the thought of having to deal with skin cancer down the road. I agreed to have the procedure and fifteen minutes later found myself missing some skin with two new stitches to add to my list of war wounds. It currently feels like a tiny red hot poker is digging into the back of my shoulder every time I move my arm. I know it's the stitches pulling and it's driving me crazy. I still didn't get to see the mystery mole, but it was described as looking like a figure 8 with the top part colored in and the bottom half covered with a white dot. I did see the skin sample sitting in the little jar and it was impressive.
I thought that I might be developing a cold sore on my lip and started taking Valtrex again just in case. Chris pointed it out to the two doctors who surprised me by telling me that it was something else. It turns out that it's a tiny yeast infection that's confined to the corners of my mouth. Forgive me for sounding like a three year old, but "Gross!" It would seem that this is pretty common among the general population and some people are more prone to it than others. My immune system is surpressed and my upper lip over laps my lower lip in the corners. I was the perfect candidate to start yeast farming. They prescribed an ointment to take care of it and I'm still taking Valtrex just in case.
I'll have to wait a week for the biopsy results, but have been assured that they didn't think there was anything to worry about. Fine by me. There are no other appointments on the books until February 5. This means that I'll be having a few procedures while the seething masses are celebrating Mardi Gras. My appointments carry over until the next day, so it's a long visit in Houston for us.
Saturday, January 19, 2008
By popular demand...here is Ann's new haircut! Ta-Da!
OK so I have forgotten if Ann told everyone that our weekly checkups have been changed to bi-monthly checkups. Ann couldn't be more thrilled, but I have to confess more than a bit of anxiety over missing all those numbers and results. They were reassuring more than anything else, and I have to keep reminding myself that "normal" is walking around with no available test results at all. With that in mind here is the latest CBC:
WBC 5.0 K/uL
RBC 4.02 M/uL
HGB 13.0 G/dL
PLT 390 K/uL
ANC 3.7 K/uL
Ann has recently developed a craving for peanut-butter. No particular brand, Skippy, Jiff, Peter Pan, it doesn't matter, but barely does a day go by that she has not been caught sneaking spoonfuls from the bottle. Odd behavior considering that before the transplant Ann couldn't stand the stuff and had often expressed outright disgust at the idea of the lowly PBJ sandwich. Now she is addicted.
Why the change? I think the baby stem cells are fueling the peanut-butter madness. Which gives us another clue about the little boy that was attached to DUC 8676. He is Asian (or part Asian) loves peanut-butter and based on the amount of platelets his body makes, will someday work as a stunt man. I for one can't wait to meet him and his family in person.
As an aside, life took another small step toward normal this week as I managed to go and see a movie without checking up on Ann every half hour. I'm not an obsessed Kaiju fan, but I do appreciate a good monster film. So when a friend offered to take me to see Cloverfield, I didn't need much convincing after Ann assured me she would be OK without me. Oddly enough the most terrifying thing wasn't the movie, but the enormous crowd of people I had to be around just to get a ticket.
MDA teaches you quickly to develop an almost pathological aversion to crowds of any number. You try to keep a three foot radius between you and everyone else. Just getting on an elevator with six or seven people leads to furtive glances at all my fellow passengers, as I try to evaluate who is most likely to have some communicable disease that could easily be passed to me or Ann. Silly behavior I know, but excusable considering the circumstances.
Imagine trying to keep a three foot radius between you and everyone else trying to get a ticket to a rapidly selling out movie on opening night! Yipes! I almost adopted acting like I was crazy so people would give me some space. What I should have done is brought one of Ann's clinic masks with me. You would not believe the berth people give you when you pop one of those on. Of course you have to endure people assuming you have TB, but that could be a net positive.
Having managed to navigate the crowds my friend and I collected our tickets and found some relatively isolated seats (at my request) and sat down to enjoy the show. Overall, it wasn't bad. Certainly not the typical monster movie fair, as it inverted the typical Godzillaesqe story/plot line. I was distracted for the better part of an hour and only thought to check my cell phone once for any possible emergency messages from Ann. Apart from feeling guilty at being able to enjoy myself while Ann was stuck at home, I was grateful that she didn't need me either.
Tuesday, January 15, 2008
I got my first haircut! Dixie joked that we should have saved a lock of hair to commemorate the occasion. I no longer look like a deranged mental patient who couldn't quite decide on whether to go curly or straight. The sight of me first thing in the morning is even better. I've started sleeping on my stomach for the first time since I was last an infant and it causes all of the hair up top to frizz out and stand up. A bit reminiscent of an angry fraggle. I would like to think that I am stylishly chic with my adorably short chemo perm. Pictures will follow.
This simple event made me feel more like a normal human being. As a super special bonus, I got to see a good friend who also had a rough year. We got to gab and compare notes and to be quite frank, it was just nice to give her a hug. She performed a small miracle with my hair and I am grateful. Chris managed to sweet talk her into cutting his hair, too. It's hard to resist those pretty blue eyes.
The peanut butter obsession continues. Tonight I made peanut butter cupcakes with peanut butter frosting. Deadly. I had two and I think I might need the rest of the week to recover. Now I have to figure out how to get rid of the rest without gaining another ten pounds. Seriously, I've almost gained back all of the weight that I lost while fighting PTLD.
It's been two weeks since I stopped taking Prograf and I've had a few GvHD flare-ups. The skin on my hands is very sensitive and itchy. It's also peeling and spotted with small rashes. I try to stay moisturized and have been applying steroid cream daily. Hair has started to fall out on various parts of the body and my scalp is starting to scale again. The new immune system definitely has mixed feelings about my skin. I'll see the dermatologist at MDA late next week and I'm hopeful that she'll have a game plan to alleviate the discomfort. In the mean time I have an appointment with the local oncologist for the regular blood tests.
Chris is giving me the "it's past your bed-time look" so I'll end things here. :)
Saturday, January 12, 2008
Chris and I are still living with Dixie in Denham Springs and since I'm still only an observer of outside life, my world consists of the few houses surrounding us and the school next door. I've learned that there aren't a lot of city ordinances in place, so you can get away with some interesting things. For instance, Monday night the LSU tigers won their game sparking a lot of enthusiasm amongst the neighbors--at 3AM, in the form of bottle rockets and other psychedelic fire works. Good times. They settled down around 5AM, presumably to get some beauty sleep.
Another neighbor has been burning leaves and assorted trash in their backyard. As far as I know, this is allowed within city limits. Unfortunately, I think there were a few chemicals in the mix because my lungs have been burning and I've been dealing with congestion. It's the same sensation as smoking too many cigarettes in a short period of time. I made the mistake of stepping outside, only to have to go right back in because of the amount of smoke in the air. Eventually someone called the fire department and a truck showed up.
The next door neighbor is currently burning leaves in his back yard. I gave up smoking years ago and I feel like I've been smoking 3 packs a day. This can't be good for the baby stem cells, but there isn't a lot to be done for it. Should I send out a flyer politely asking people to disrupt their lives because I can't handle a little smoke?
I just don't think some people understand that their actions directly impact others, and I'm not just talking about this instance. Last week the next door neighbor came over asking for a thermometer. Not a big deal, except I was the one who answered the door and he thought he had pneumonia. Are you kidding? If you thought you had pneumonia, wouldn't you call someone to take you to the hospital or a clinic? Wouldn't it occur to you that you might infect other people? The horror. Chris rushed past me, closing the door on the way. He provided the thermometer, explaining that I couldn't be around anyone in his condition because of mine; i.e., keep the thermometer. The genius came back a few hours later to return the thermometer. Isn't that like trying to return a used toothbrush? Has my point of view become skewed? The whole tragedy of the situation is that he was on the phone with someone the entire time giving him advice on what to do. Okay, I'll admit that I don't view this guy in the most charitable light since he threatened to kill Dixie's cat. Sue me.
Carrying on in the vein of strange happenings, the baby boy that I've become is addicted to peanut butter. I've begun craving it everyday which is really strange because before my transplant I would have chosen raw Brussels sprouts over peanut butter any day. I just didn't care for it. Now I can't live without it. Maybe I have some sort of vitamin deficiency.
Wednesday, January 9, 2008
I've been taking a serious break from blogging because I feel like I've been repeating myself with the last few posts. I just haven't felt like anything noteworthy has happened. That's got to be a good thing.
January 9 is the one year anniversary of me being diagnosed with leukemia. My poor ENT had to call me with the news that the tests he'd had run on me the week before had come back strangely abnormal. I got a chance to thank him for running the tests in April. He admitted that he didn't know why he'd decided to have them run since he was sure that I just had an infection. Doctor's intuition, maybe. At any rate, I'm thankful that he did.
I spent the day like I do most others, just puttering around the house and trying to stay out of trouble. Nancy, you might want to skip this part. :) My transplant doctor surprised me last week by telling me that I could dust around the house. I had originally been told to avoid any activities that might expose me to air borne debris because of my immune system. It was in response to a question about being able to do a bit of painting around the house. I am that bored. I volunteered to paint trim, etc. around the house. I didn't rush right home and start cleaning--I'm not that foregone. I waited a day and I have to admit, I enjoyed myself. Okay, so I didn't actually dust, but I did push around the vacuum cleaner. Just in case, I wore a surgical mask, since I have been warned to avoid exposure to mold and fungus. In south Louisiana, you just never know what's in the air.
Last Wednesday, I had my fifth lumbar puncture in a series of six. The results of my fourth lumbar puncture showed rare atypical cells. The results of my fifth showed the same. I was told not to worry and that the team thought that it had something to do with the chemo drugs being introduced into my spine. I'll have an extra lumbar puncture after my sixth, just to test the theory. This last lumbar puncture was my least favorite by far. I can't remember how many I've had in addition to the series that I'm undergoing now, but they've mostly been nothing to remark on. It's taken me almost a week to recover from this one. When Jill was inserting the needle between my vertebrae, I could hear a grinding sound like someone stepping on salt in my head. Jill remarked on how "crunchy" my spine was that day. She had to exert a little more pressure to puncture the tissue and I could feel it. I was sore for a few days after. It was like I'd done a lot of heavy lifting. I'm fine today, but I'm really hopeful to avoid a repeat. It was still better than having a bone marrow biopsy performed by a small woman.
My EBV tests came back negative. Yipee! I'm having a CT scan next month to see if all of the PTLD tumors have disappeared, or significantly reduced in size. I'll also have another bone marrow biopsy to be sure that there's still no sign of cancer. I've also been told that I only have to see my local oncologist once every two weeks, now. This actually means that I'll only see him once a month since I go to MDA once a month. That means fewer needles. My poor arm veins are so scarred over, I'm surprised that phlebotomists are even able to get blood. Which brings me to a funny story.
I've been having some interesting days thanks to my skin GvHD. Every day brings a new "something", this could be a little red bump, or a small itchy rash, or skin scaling. For the most part, the steroid cream keeps it under control. Last week, I'd backed off to only applying it once a day and this has brought on a few flare ups. While I had my sleeve pushed up to get blood taken, I noticed a strange flat brownish blister on the inside of my arm, near my elbow. This immediately made me think that I'd just jumped to GvHD level 2 or 3. It was just a scary, "what the hell?" moment. So I told Chris and he got worried and wanted to go to the dermatologist immediately. He asked me to show it to him while we were walking to the elevator and when he saw it he got a small smile on his face. Of course I didn't think it was funny, but I decided to be a big girl and ask him what he thought. He pointed out that it was the scar left over from my picc line. He-he. I'd actually forgotten that I'd had one. Go figure. I'm glad that I didn't storm the doctor's office freaking out about it. My reputation is dodgy enough without hysterics. ;)
I'll see my local doctor next week and then it's back to MDA to see the dermatologist about my legitimate GvHD. I suspect that I'll be given ultra-violet treatments since the steroid cream didn't totally take care of my dry skin and rashes. That's the best I could do for today. Maybe something interesting will happen tomorrow.