Wednesday, June 30, 2010

Long weekend

My 91 year old grandmother had a medical scare a few weeks ago and ended up in the hospital for a few days. I haven't seen her since having been diagnosed with leukemia close to four years ago. She speaks very limited English and the few Vietnamese words I know either involve eating or cursing, but we muddle along.

I got clearance from my doctor to fly out for a visit. We'll only be there for the weekend since Chris needs to get back to work.

Family is a part of my life that is complex and convoluted. Sure, you say, you and everyone else. I know that I'm not alone in this. I only mention it because even now I'm having difficulty writing about the trip. I'll post pictures when we get back, but as for a recap of the visit, I can't make any promises.

Thursday, June 24, 2010

MDA follow-up

Yesterday was yet another day in Houston, but this time it was expected and has been on the books for three months. It was supposed to be my 21 month check-up. Thanks to the GvHD flare-up two weeks ago, it was a follow-up to see how the medrol and prograf had affected the situation.

The itching that had propelled me into MDA two weeks ago has become very tolerable. I still have moments of insane scratching, but the episodes are happening with much less frequency. I thought the GvHD in my mouth was getting worse, but now I suspect I forgot to use the steroid mouthwash one day. My gums and the lining of my mouth were swollen and sore and I didn't get much of anything accomplished that day due to the distracting nature of constantly feeling like gremlins were rubbing the tender tissues with sandpaper. I will try to never forget the dexamethasone rinse again.

Spicy food consumption is way down in the Gregory household. Vanilla ice-cream intake is up. The ice-cream is nice and bland and the temperature soothes the inflamed tissues. That's my story and I'm sticking to it.

Dr. K. was non-plussed by this past weekend's mystery illness. She said the fact that some of my blood counts were elevated accounted for it. She also authorized the next round of vaccinations. Five shots. Two arms. I'm still sore.

As Dr. K. sorted through the mystery that is my GvHD, she speculated that I'm gearing up for a big flare-up. No one wants that, especially me. It means discomfort and months of steroids. No thanks. She's increasing the Prograf to 1mg per day. I'll stay on it for three to six months, then we'll see about tapering off. I won't have to start taking antivirals or antibiotics since the drug will only be maintained at homeopathic levels in my system. I will be more susceptible to illness, so I'll take precautions.

I also saw the dermatologist who specializes in skin GvHD. She took one look at me and said, "We don't need to do any biopsies, I can see the remnants of the rashes." Hooray for that. She wants me to use steroid cream in place of the tacrolimus ointment, but I do have the option to use the one that I find works best. Dr. H. also took a look at a mole that appeared on the top of my right foot after the first transplant. Apparently, it happens. She wasn't worried about it three years ago. It's a little bigger these days and since my dad struggled with skin cancer, I wanted to be safe. She still thinks it's benign, but she had pictures taken for my file.

As for the numbers, here you go:

WBC: 7.8 K/UL (4.0-11.0 K/UL)

RBC: 3.99 M/UL (4.00-5.50 M/UL)

HGB: 12.5 G/DL (12.0-16.0 G/DL)

PLT: 282 K/UL (140-440 K/UL)

ANC: 5.28 K/UL (1.70-7.30 K/UL)

ALC: 1.11 K/UL (1.00-4.80 K/UL)

AMC: 1.22 K/UL (0.08-0.70 K/UL) This reading accounts for the fever over the weekend.

LDH: 612 IU/L (313-618 IU/L)

Alkaline Phosphatase: 183 IU/L (38-126 IU/L)

Alanine Aminotransferase: 153 IU/L (7-56 IU/L)

As you can see, my liver is still not behaving. It is what it is and we'll deal with one thing at a time. My thyroid levels are now normal thanks to the Synthroid prescription. I can feel a difference and I'm all the happier for it.

I need to see my local doctor in two weeks to have my Prograf levels tested. July means another trip to MDA to check my progress with graft versus host disease. Until then, it's business as usual around here.

Sunday, June 20, 2010

Ill equals normal

GvHD manifests in many ways, and for me it's the skin, eyes, mouth, and occasionally the muscles and joints. It can hit you in a myriad of combinations and no portion of your body is safe. Thursday night, my feet started cramping and the toes kept locking in unnatural positions. When it's at its worst, my toes spread very widely and curl upward. This is what kept happening first to the left, then the right foot.

When this happens, I find it helps to massage my foot. If that doesn't work, I have to walk in order to stretch the muscles. I had a really hard time finding relief and as soon as one set of muscles would relax, the other foot would kick off. I took an ativan in the hope that it might help relax the muscles a little.

The ativan didn't help with the GvHD, but it did put me to sleep, which is all I was trying to do in the first place. Chris woke me an hour or two later because he said I felt really hot and needed to take my temperature. I can be an extraordinarily graceless person when my sleep is disturbed, so I know Chris must have been worried when he did so. 100.8 degrees fahrenheit.

Post-transplant, a fever of 101 degrees fahrenheit is a mandatory trip to the ER. Fever usually means an infection and transplant patients aren't so good at fighting them off without a lot of help. For me, it usually means three or four days in the hospital getting a cocktail of IV antibiotics. Dare I mention the poop swabs?

I did not go to the ER. Chris wanted to take me, but I argued that I'm nearly two years post-transplant and that the fever was probably the result of the excessive GvHD that I'd been suffering with that day. I now believe it was the other way around.

I think the GvHD flares were a result of my immune system reacting to an infection, but not quite understanding how to deploy an effective defense. Instead of sending in a small team of special forces, my immune system went nuclear and started attacking everything, hence the excessive itching and horrible cramping.

When Friday morning found me still feverish, I put a call in to my local oncologist. A nurse returned my call a few hours later. After getting details, she promised to confer with Dr. B. The result was an appointment with his APN, G., for the same day.

Dr. B. ordered so many blood cultures, the phlebotomist had to use both arms to draw blood. When I asked what the cultures were for, she blithely replied, "Everything."

By this time, I was feverish, my head hurt, I was nauseated, I had a sore throat, and all I wanted to do was sleep. G. checked me out and relayed the information to Dr. B. He popped in between patients and looked me over. Because the symptoms of leukemia can be similar to the symptoms of an extreme case of the flu, he decided to check a blood smear. He didn't think that I was in the throes of a relapse, but considering how it all manifested the last time, he wanted to be cautious.

A prescription for Biaxin was called in and he promised to call if he saw anything strange in my slides. I went home and slept for the rest of the day. There was no call, so I feel pretty confident that I'm suffering from some pedestrian illness.

I've been fever free for almost twenty-four hours. I get nauseated if I'm in a moving car, and I'm still not one-hundred percent. I'm pretty certain that the antibiotic is doing its job and helping fight off the infection because the skin GvHD has come roaring back. Although I itch as a result, I'm happy for it. I'd rather have this manageable complaint than the alternative.

Since I'm housebound, I've managed to think up a new knitting project using some yarn that's been languishing in my motley collection, so the down-time isn't totally a waste. I'll resume coursework tomorrow. The deadline is quickly approaching and I have six more lessons to turn in, as well as two tests left. This means I won't be answering calls or be present on the digital front for a bit.

I'll pop in once a week to keep everyone updated.

Thursday, June 17, 2010

Thursday, already?

I received an email from MDA reminding me that I have an appointment next Thursday, which reminded me that it's been a week since I last updated.

The steroid pack is empty and I enjoyed a compressed experience. My last experience with steroids lasted several months, giving me time to fully appreciate the manic bursts of energy and middle of the night hunger. There were a few days of excessive energy and two nights where I popped fully awake after only three hours of sleep. I didn't notice an increase in my appetite, which I am thankful for. I'm now mired in the sluggish throes of my adrenal gland's artificial increase in production having been cast off. Poor little gland is having to make adrenaline without the aid of methylpredinisone and it's making me a little cranky.

I noticed a small reduction in itching while taking the steroids. I still itch and there is still a danger of me tearing my skin open thanks to excessive scratching. It's all much more manageable now, though. On a scale of 1 to 10, the worst the itching has been is an 8 this week. There were days where I was constantly stuck at 10 before seeing my transplant doctor.

Chris observed that my complexion is a bit rosier as of late. I don't know which drug to attribute this to. I don't believe I've been taking the thyroid medicine long enough to have made a significant difference. I know I haven't been taking the Prograf long enough to have built up a homeopathic level in my system. Perhaps it has something to do with the obscene amounts of water I've been drinking. Who knows?

Dr. K. has ordered a complete pulmonary function test for next Thursday. She wants to be sure that my lungs aren't developing GvHD. That's a nasty condition, to be sure. I haven't noticed any diminished capacity, but I'd rather play things on the safe side. I'll also see Dr. H., the dermatologist who specializes in skin GvHD. I'm hopeful that she won't want a biopsy. I have numerous punch scars on my back and I don't care to add to them.

Next Thursday will be a very long day and I promise to post a recap on that day's madcap adventures the day after.

I'm still working on cranking out the marketing course work. It's happening much more slowly than I would like. I have seven more assignments to turn in and two tests left to take before the semester begins in August.

Thanks for keeping up with me as I muddle through all of this.

Thursday, June 10, 2010

cGvHD and me

I am exhausted. Chris and I got home around 11:30 and promptly went to bed after being up since 4AM. I was up again at 1AM vomiting, and then three times after that. As for the whys and the whats, I'll get to it.

My transplant doctor, Dr. K, saw me a little after lunch, and as a bonus she was being shadowed by a fellow from Germany. I like to think the bonus was more for him, rather then me. How often is a newly minted doctor studying transplants going to get to interact with a two time transplant patient with such an engaging sense of self-deprecation? Probably more often than I suspect, but none the less, he took notes and studied the physical manifestations of GvHD I was presenting.

Dr. K. admitted that she had visions of me covered in an angry red rash, which is why she asked me to come in immediately. I don't usually complain about transplant related complications, so when I do manage to come up with something, she believes it's pretty serious. Plus, she's really good at what she does and takes a personal interest in my well-being.

When she referenced an angry red rash she was alluding to the kind of GvHD that can land a person in the ER if not treated promptly. Any GvHD needs to be managed as soon as possible, because it has a nasty habit of ballooning into seriously life-threatening conditions. A little something can turn into organ failure in a matter of days or weeks. I'm not just talking rashes, either. I've seen transplant patients with angry red rashes. It's not very nice. You can google GvHD if you'd like a visual of how bad it can be, and if you're so adventurous, I recommend doing it on an empty stomach.

I have rashes. All lower case, and no italics. They are sometimes red and sometimes flesh toned, but mostly they ITCH. I have given myself scabs from constant scratching. Constant scratching due to constant ITCHING. The sensation is always present in different areas of my body and with varying intensity. Imagine the sensation of having a grain of sand under your skin being pushed around by a fire ant that is also simultaneously biting you as it pushes this little grain of sand around. Now imagine the intensity of the sensation being tied to the frequency knob of an old-school transistor radio, in the hands of your bratty younger sibling, who can't resist playing with shiny knobs and buttons.

The rashes cover most of my upper torso and upper legs and arms. Throughout the day, raised bumps appear on my face, mostly across my nose and cheeks. The bumps start out as very intense, concentrated itching, then become small raised welts, and then proceed to become very small pustules on my face only. It makes looking in the mirror in the late afternoon an adventure. It's not acne, but classic chronic GvHD.

Dr. K. prescribed a Medrol pack and told me to start taking 0.5mg of Prograf every other day. Medrol is a steroid that I've been on before. Nasty stuff. I only have to take it for six days. Prograf is an immunosuppressant drug that keeps your immune system from rejecting a transplanted organ. In my case, it's keeping the immune system from rejecting my body. The fact that this immune system recognizes its environment as foreign is what's causing the GvHD.

While Dr. K. was looking me over, she discovered cGvHD in my mouth. I had no idea, but as soon as she asked me about it I realized that something had been off. Food that I don't normally find spicy has been really spicy this week. The burning sensation in my mouth was located in the same area as the cGvHD that Dr. K. discovered. She prescribed a steroid mouthwash for this.

Here's where I go a little off tangent. I used the steroid mouthwash for the first time last night. It is clear and smells slightly sweet. When something is labeled as a mouthwash, I automatically assume it's going to be refreshing, maybe a little minty. That's just me. Some joker gave it a grape flavor.

In the entirety of my experience of taking grape flavored medicine, I have never found said medicine to taste like grape. Grapes taste like grapes. Wine tastes like fermented grapes. Grape flavored concoctions taste like purple. Flap-doodle, you say. Colors don't have flavors, you argue. I shall hold my ground on this one issue and say grape flavored things taste like a poorly derived chemical additive formulated by tongueless sadists. It smells purple and it tastes purple. Aliens who have never tasted a grape will insist that grape flavored items taste purple. If evil has a flavor, it is grape-bubble gum flavored medicine. I'll spare you the bubble gum flavored medicine rant.

I've only used the steroid mouthwash twice and can already feel a difference. The area in my mouth where GvHD was detected doesn't feel quite as foreign today.

I started taking prograf last night. One of its side-effects is that it can cause nausea and vomiting. It hasn't done so for me in the past, but drugs are drugs and you never know when you're going to develop a side-effect. I woke up nauseated an hour or so after taking it. I blamed all of the hurling episodes on food poisoning. Chris thinks it's the prograf. I'm willing to split the difference. The next dose is slated for Friday night.

My bloodwork showed that my liver numbers are still slightly elevated. They're slightly down from last month when I had bloodwork done at my local oncologist's office. It's nothing to be alarmed by. I also know that any liver-related issues can cause extremely itchy skin. My elevated LFTs are separate from the chronic GvHD affecting my skin. The higher numbers might be very minor GvHD or could be a result of extra iron being stored in the organ as a result of all of the blood transfusions I had to have. Thanks leukemia.

Dr. K. also had my thyroid checked. My thyroid stimulating hormone level is 7.3 (I can't remember the units that follow this measurement, so I will leave the spot blank). In March, my TSH was 6. Normal is under 5. I have hypothyroidism. The doctors don't know if it would have occurred independently of the damage done to my body by chemotherapy or if it is a result of said chemotherapy. I'm now taking a prescription for it. It must be taken in the morning on and empty stomach and one of the numerous warning labels on the pill bottle advises drinking a large quantity of water with it. It doesn't specify what constitutes a large quantity of water, so I took a stab in the dark and had 16 oz. You have to wait 30 minutes before eating anything. This is going to do strange things to my morning routine. I'm all for a little variety.

I also scored a prescription for tacrolimus ointment for the rashes. It is sticky and reminiscent of Vaseline. I know a lovely tacrolimus cream exists, because I've used it many times in the past with transplant number one. I suspect the ointment variety was devised by the same joker who thought purple flavored medicine would be a hoot.

Since you shouldn't use topical tacro on the face, I got a prescription for hydrocortisone cream for that afflicted area.

So, to recap, I now take estrogen once a day, a thyroid pill once a day, a whopping dose of vitamin D once a month, swish with steroid mouthwash twice a day, take prograf every other day, apply an ointment and a cream twice a day, and will take varying doses of medrol for six days. And a partridge in a pear tree...sorry, wrong list.

I won't know how effective all of the new medicines will be for a few weeks. The tacro ointment can take up to three weeks to produce a result. I'll need a few doses of prograf before a homeopathic level accrues in my system. I don't know about the thyroid prescription, but look forward to shedding some of the weight that refuses to budge from my middle.

With all of this excitement behind me, I plan on resuming school work. Unless something else happens, this may be the only post for the rest of the week. Hope it's good enough to hold you over until next week.

Tuesday, June 8, 2010


For the better part of the last three years, I've been living my life according to someone else's schedule. People in white lab coats, or people who worked for them would tell me where and when, and sometimes how. I'd say I was fairly compliant.

Now that I'm free to follow my own schedule, I find that I lack discipline and structure. Part of the problem is unique to me and my ability to procrastinate. The other part of the equation relies on Murphy's law. At some point during your adult existence, you will come to realize that the universe has a total disregard for your plans. Your perfectly planned schedule is but a pipe dream.

I planned on turning in three lessons for my independent study class this week. I was supposed to have finished the bulk of the grunt work today. I'd planned on getting most of the reading done this weekend. It didn't happen.

The reason none of this happened has to do with an itch. That small, persnickety feeling under the skin. Cats and dogs know what I'm talking about. I've seen the looks of intense satisfaction on their faces when a human scratches them in just the right spot--that place just beyond their own reach.

I itch. Nearly everywhere. It's distracting. I have trouble concentrating because of the itch. Saturday, Chris and I had to make a late-night run to the drugstore in search of something to help. I've been taking Atarax for the last ten days to help with the itching. It tamps down the sensation for a brief period of time. The itching becomes like white noise on Atarax. It doesn't last very long.

There are rashes on my back, flanks, abdomen, chest, arms and legs. This is in addition to the stuff on my face. Scratching doesn't help. I've been scratching so much, I'm afraid of tearing my skin. I emailed my transplant team at MDA in the hopes of being prescribed a magic pill to help with my discomfort.

I just got a call from my transplant nurse. My doctor wants to see the rash. This is the one in Houston. I have a regular check-up on the 23rd. She wants to see me tomorrow. In Houston. This is nothing to be alarmed by. She wants to see my skin before prescribing anything. In the world of skin GvHD, a verbal description just doesn't cut it. It's not one of her regular clinic days, but as it happens, she's going to be seeing another patient tomorrow, so she wanted to fit me in.

Chris is taking the day off from work to drive in with me. Yet another schedule interrupted.

I have a sneaking suspicion that I'll start taking Prograf again. That would mean that I'd have to start taking a handful of supporting pills as a result. Anti-fungals, anti-virals, and the lot.

Chris and I will tweet throughout the day. Our twitter feeds can be found in the side-bar on the right. I'll post something on Thursday, the universe permitting.

Wednesday, June 2, 2010


For the incomparable Susan and so many fabulous others:

It has been raining and we have a mole infestation, so when conditions improve, I'll go out and get better pictures. I mention the mole because I stepped in a hole earlier and don't care to repeat the experience with soggy ground.

Tuesday, June 1, 2010

Holiday recap

Last week, I wrote about getting estimates to have a termite treatment applied to the perimeter of the house. In anticipation of having a trench six inches wide dug around the house, Chris and I had to take out the planting strip between the driveway and the house. It had only been in for a few months, so the plants never got a chance to put down deep roots.

I promised Susan that I would post a picture of the garden before we dug it up. Here it is:

And a few close-ups for good measure:

It's hard to see from the pictures, but some of the plants weren't doing very well, while others were flourishing. Curiously, the undersized plants were grouped together in the middle portion of the garden. Some might speculate that conditions were less than perfect. I tend to believe it had something to do with a certain Alsatian and his mixed breed cohort favoring the area with their special attentions. The plants that are struggling were transplanted to one of several pots in the hopes that given a little extra care they will recover. Once the termite treatment has been placed, Chris and I will fill in the planting strip with gravel mulch and relocate the potted plants to the side of the house. The only dog tall enough to threaten the potted plants with a lifted leg is a Great Dane and none of my immediate neighbors has one.

Chris and I put in a new shade garden under two of the Bradford pears in the front yard in order to save the other plants. We'd planned on putting something there next year to spare our neighbors having to look at the sparse and sickly lawn. Our decision to buy insurance against invading termites expedited the matter. Thanks to weather and my inability to tolerate sunlight and heat, it took three days to get everything done. There are a few things left to do and we're planning on adding to the shade bed next year. The grand scheme is a little too grand to tackle this year. I'll add plants in a little at a time as I'm able to.

Here are a few other pictures that I've promised in previous posts:

The urn containing the bullbine and red petunia is positioned on the walkway leading to the front door. The urn with the Spanish lavender and the extra marigolds is outside our backdoor. There were so many plants left over from doing the urns that we put them in under one of the crape myrtles in the front yard. The soil is clay, so the plants are struggling. I suspect they'll be moved to the empty bed dominated by the now shorn sago palm. It doesn't seem to be suffering from our over-zealous attentions and is putting up a cone as we speak. Deep down I was hoping it would give up and fall over. Stupid Jurassic plant.

I have a host of things to get done this week, so this may be the only posting. No worries, I am here and keeping busy with normal things.