Wednesday, May 26, 2010

Skin

It has been two months since I went off of Prograf and the motley assortment of prescriptions that went with it. As such, I've been living with the strange affects of a stand-alone immune system. My two most prominent complaints: allergies and itching.

Pre-leukemia, allergies were a very minor nuisance. After the first transplant, environmental allergies put me on a daily dose of medication. I could not function without Claritin or Atarax. I've been taking Claritin each day for three years.

Since my liver numbers are now slightly elevated over last month's near normal numbers, I've decided to try a little experiment. Many of the drugs that I've been on in the past can elevate these dreaded numbers. So can GvHD. I've decided to abstain from most over the counter medicines--including Claritin, to see if it makes a difference. It's not scientific and there are a host of reasons my liver numbers could be elevated; the most prominent being graft versus host disease.

It's been five days and I'm functional. My nose runs off and on throughout the day and I'm prone to the odd sneezing fit. There's a hell of a lot of pollen in the air, so I'm staying indoors for the most part.

As for my second complaint, I itch. The skin GvHD issue is getting a little worse. There are only small windows during the day when my skin doesn't itch. Very small windows. My arms, abdomen, and legs are covered in multiple, small rashes and stretches of very dry, irritated skin. I keep cortisone cream close to me and have resorted to taking benadryl when the itching becomes obsessive.

That swath of skin across my cheeks and nose has been joined by two new patches on my chin and forehead. It looks like an odd cross between rosacea, eczema, and mid-life acne and--you guessed it, it itches. Sun exposure makes it worse, even with the use of sunscreens.

I'll be going to Houston at the end of June for a quarterly check-up and I'll raise the issues then. My local oncologist is aware of the problem.

I've been staying busy with the class I've been working on and various other things. This week, I've been getting estimates on termite prevention treatments for the house. Formosan termites are swarming this month and one poor homeowner in the neighborhood presented with $50,000 worth of termite damage very recently. I'm all for an ounce of prevention, hence the estimates.

I'm scheduled to have a treatment installed next Wednesday which means Chris and I have a few things to do in order to get the house ready. The planting strip along the side of the house has to come out since the treatment plan includes digging a six-inch wide trench along the perimeter of the house. About half of the plants will be relocated to a new planting bed under the shade trees in the front of the house. The plants that haven't been doing very well in the ground will be transplanted to pots and nursed back to health if they survive the transplanting process.

Yard wok should prove interesting this weekend. I'm sure a post involving out-of-control allergies and new rashes will be appearing shortly thereafter.

Wednesday, May 19, 2010

Two in one day

I had a late afternoon appointment with my oncologist for a little routine maintenance. By maintenance I mean he was doing my monthly bloodwork. All is well and my numbers are good. I am a little disappointed by my liver enzymes, though. They're just a little elevated over last month. I'm coming to believe that this may be my new normal and that I have low level GvHD of the liver. I have a visit scheduled with MDA next month, so we'll see.

The numbers:

WBC: 7.0 k/ul

RBC: 3.74 M/UL

HGB: 11.8 g/dl

PLT: 285 k/ul

ALC: 1.2 k/ul

ANC: 5.2 k/ul

AEC: 0.5 k/ul

Alk phos: 138 iu/L

AST/SGOT: 60 iu/L

ALT/SGPT 130 iu/L

These days, seeing Dr. B. feels more like a social call than a doctor's appointment. With numbers like these, I'm not complaining and I love his staff, so it's a little treat for me.

Apologies

The last few weeks have included several days during which multiple annoyances have been in abundance. These petty annoyances don't amount to very much on their own, but when added to a string of similar incidents they have become monumental.

For instance, this weekend Chris and I did the dreaded deed: the baby sago palms are no more. While Chris was doing the heavy labor, I decided to clean-up one of the flower-beds. Nestled between two struggling marigolds I found two fresh coils of dog poop. The bed I was working in is closer to the backyard than the street and prior observations lead me to believe the scat belonged to one of the next-door neighbor's two large dogs. The very dogs who are turned loose without leashes when nature calls. I've had the pleasure of observing the little fellows in the act of eliminating in my yard. This usually happens when I'm working in the shade of one of the trees or working near the front door. If you aren't looking for me, you won't notice that I'm there.

One of the dogs' owners is usually within a few feet of them and so they're aware of the fact that the little rascals are decorating a neighbor's yard. The only time I've heard them tell the dogs not to poop in another yard is when the yard's owner is visibly present. One day, I was bent over spreading mulch when the Alsatian came bounding up, sniffed the tree next to me and prepared to begin the christening. My neighbor wasn't bothered by her baby's actions until I straightened up and she noticed they weren't alone. We made eye contact and I called out a greeting. She didn't acknowledge me. Instead, she called for her dog and hurried into her backyard.

A few days ago, I had just parked my car and was gathering my things when I heard a muffled slam and felt the car vibrate. There was a young woman peering into the passenger-side window with an embarrassed look on her face. She yelled, "There's no damage!" before hurrying away. She'd parked too close to me and had opened her car door without looking.

I went out and had a look and didn't notice anything significant. It may not have occurred to the young woman that she and I would be going into the same building, or that I would end up in line behind her at the post office. As soon as she recognized me standing behind her, she became agitated. She stepped out of line to look at a case of stamps and began talking loudly to a friend. The gist of the conversation involved mailing invitations the following week. Since they wouldn't be sending the cards out that day, there was no need to be at the post office buying stamps, she said. She ignored the strange look her friend gave her and exited the lobby. Her friend waited a beat before following.

After I mailed my package, I decided to have another look at the car door. I found a spot where some paint was missing. It might have been a coincidence and the young woman opening her door into mine might not have been responsible for the chip. I can't honestly say one way or the other since she was long gone.

The petty events I've been torturing you with all have the same thing in common; no apologies. When did people stop taking responsibility? When did apologizing become a lost art?

Why does apologizing have to be an art at all?

The simple act of saying you're sorry needn't be a monumental moment and goes a long way toward defusing a situation before it gets blown out of proportion. Apologize with sincerity and acknowledge the fact that you've done something wrong. You may feel better for it and I can guarantee the other person will appreciate the acknowledgement.

And so, for torturing you with my rant, I will say, "I'm sorry."

Wednesday, May 12, 2010

...

It feels like I just posted, but then I checked the date and realized that I'm overdue. All is well in the Gregory household. I'm still dealing with skin GvHD. The rashes are a little more prominent across my face, but seem to be concentrated most intensely on and around my nose. There are still large plaques of GvHD on my arms, mostly concentrated in the few inches above and below my elbows.

Since writing about them a few weeks ago, I've since learned that the reverse-freckles are a new take on GvHD. The light spots start to dry out and peel much like the tiny blisters I'm also afflicted with. I'm learning that it also takes less sun exposure to kick off another attack. I was outside, bare-faced, for less than five minutes before this latest episode. I now wear a dedicated sunscreen on my face in addition to the other two products containing sunscreen whether I intend to leave the house or not.

There have been no takers for the sago pups, so Chris is going to take them out this weekend. Three of the little buggers are showing signs of blooming again. We're making plans to put in a vegetable garden, which should keep us busy for the next little bit. Considering we are both so analytical, expect us to be in the planning stage for a bit while we hash out what will go in the actual garden.

Monday, May 3, 2010

History

A recent friend asked if I've ever written a history of events for the blog. I have, but it's been a while. After Lisa asked, it occurred to me that a brief recap of the last three years would be helpful to new readers. I promised to dash one off only to be stymied by other engagements.



When I did find the time to sit and write, I couldn't put any words down. The more I thought about the last three years, the less inclined I became. Should I simply write a time line of treatments with approximate dates? Could my memory be relied upon to accurately convey what I'd felt in the midst of this madness? The answer to this last question is no.



I imagine that I'm not alone in shying away from too acute an examination of events that have shaped such a strange life. It's not that I'm trying to forget, rather I'm too close to what has happened. Time has not stretched far enough giving me the kindness of an altered perception. The guardian of that portion of my memory is encouraging me to let things lie and revisit the topic another day. Knowing me, that day will be in the very distant future.



The thing I should do is go to the beginning of this blog and read all of the entries. I'm not so inclined because I'm not ready to revisit things that seem to have happened yesterday. Since I'm not going to do it, I shouldn't expect new readers to do the same. Here is what I will do: I will write out the sequence of events with a disclaimer.



Disclaimer: This brief writing doesn't account for all of the procedures and treatments. It's more of a highlights piece viewed through a distorted lens.



A brief history:



In October 2006 I came down with strep throat. I know this because It was the week before my birthday when a client, her daughter, and the daughter's two children came in and spent more than an hour in close proximity to me before telling me that they had all just come from seeing the doctor. The mother and daughter had active strep and were taking advantage of that glorious window of opportunity that occurs right after getting a cortisone shot when you have an abundance of energy to do some serious shopping.



I saw my own doctor a few days later and had a culture done and was given a prescription to help things along. I silently cursed these women for being so selfish as to infect a string of people with strep because they didn't have the sense to stay home and get well. I managed to be actively sick on the days that I didn't have to work or be in school. Irony.



I never managed to fully recover from being sick and constantly felt tired and always on the verge of a sore throat. Being a full-time student while working a full-time job was punishing and I'm sure my work suffered on both fronts. I suppose I managed to pull things off because no one ever said anything to me directly.

When the bump on the back of my neck popped up in December, I thought it was stress or a bug bite gone rogue. I saw my GP for the lump on the back of my neck the week of Christmas.



By the time I saw my doctor, the lump on the back of my neck was joined by a lump behind my right ear. My GP of two years, the very same man who always introduced himself at each visit because he could never remember treating me previously, told me he had no idea what the problem was and prescribed antibiotics. He advised me to return in a week if things hadn't cleared up and he'd refer me to an ENT.

I dumped my GP and saw an ENT January 2, 2007. This new doctor reassured me that I was normal and that my lymphnodes were swollen due to a slight infection in my throat. To calm my nerves, he drew blood and had it sent off. More antibiotics.

January 9, 2007, my ENT calls me with the results of my bloodwork. My white blood cell count is just under 200,000 k/ul. He's consulted with a friend from med school who also happens to be a hematologist in town. Arrangements have been made for me to see this new doctor that afternoon.

There's a last minute switch and I see the man who will become my local oncologist. He tells me that I have Acute Lymphoblastic Leukemia. He encourages me to go to a hospital that specializes in treating adult leukemia. This is the point where I can look back and say that he helped save my life by being frank and candid.

I start treatment under the care of one of the country's foremost experts on ALL two days later in Houston. While in the hospital receiving chemotherapy, I learn that I have a rare chromosomal translocation that is an excellent indicator that chemo alone will not save me. History and experience have shown that this translocation means a short remission time followed by an aggressive return of leukemia. The leukemia comes back angry and is usually resistant to therapy that is currently available. This translocation is rare in adult patients and is usually found to occur in cases involving infant girls under the age of one. I will have to have a bone marrow transplant.

26 potential bone marrow matches are found after my brother fails to be a close enough HLA match. HLA is short for human leukocyte antigen and I need a 10/10 match. John is a 2/10. The chances of finding a match are greatest within a population of like ethnicity. I am Vietnamese/Chinese/Irish/English. 26 matches becomes zero. My doctors elect to do a stemcell transplant using cells harvested from umbilical cords. The HLA match doesn't have to be as close and the chances of finding a match for me are greater.

My employer is self insured and rejects the CBT as experimental. My husband is told that they will pay for hospice, but not a cord blood transplant.

I continue chemotherapy to keep me in remission while my husband, family, friends and strangers go to work to get me the life saving treatment I need. They start raising money so that we can move forward. The transplant averages a cost of $500,000.

Three months go by before the denial is reversed. Media and lawyers were involved.

I have a cord blood transplant in May 2007.

In October 2007, I am diagnosed with post transplant lymphoproliferative disease. This is much more common in hard organ transplants. This occurs in less than 1% of cord blood transplants. It is likened to pre-lymphoma. My digestive system is riddled with tumors. There is a mass in my left sinus cavity, just below my eye, and I can't breathe normally. I can't eat or drink without becoming violently ill. By this time, I have lost 6 dress sizes.

I receive Rituxan every month for four months. The tumors disappear.

The leukemia is back in June 2008.

Chris and I are back in Houston for more treatment. The chemotherapy is more aggressive and I am lucky to get into remission with the first round of treatment.

I am fortunate that I'm far enough out from the first transplant to be considered for a second transplant. An imperfect match is found and is willing to donate. There is a greater chance of complications due to the imperfect HLA match. Graft versus Host disease becomes a major concern.

I have a bone marrow transplant September 7, 2008.

October 2009, I learn that my donor's name is Dana. She has saved my life through her selfless act.

Today, I met with faculty members of LSU's College of Construction Management. I am registered to take classes this fall in order to complete the degree that was interrupted 3 years ago.

I am here and I am alive.

Thank you, Dana.