Friday, May 30, 2008

Thursday, May 29, 2008

Day +364

On the eve of my first "birthday" by way of 33, I am secure in the knowledge that I know enough to admit that I really don't know anything at all. For each precious day that I am granted I discover something new about myself or someone close to me. They are small things like a new dislike of blueberries or a strange love of peanut butter. Inconsequential out of context, but considering my circumstances, an absolute miracle.

I have been very lucky in the last year and have met some truly amazing people. To all of my transplant buddies: you guys inspire and amaze me every day. You each face your own obstacles with such grace and wit, it looks almost effortless. To my family and friends: I wouldn't be here without every one of you. You've all stood by me and helped me to find the strength and courage to deal with my illness and treatment.

Now on to the non-mushy stuff.

I'd like to say a very big thank you to my real estate agent, Angela Jordan. She's located in Baton Rouge and she's with ERA/Stirling if you're ever in need of her services. This woman has stuck with us through all of our zany medical adventures with an understanding and patience that borders on the biblical. She's handled many anxious moments with aplomb and humor. I've done the real estate thing before and can honestly say that she has made this experience absolutely painless. So shameless plug: If you're buying or selling a home and need an agent, give her a call or contact us and we'll put you through to her.

Infomercial complete.

On to the meat of things. My GvHD is flaring up a little. I have small red rashes on my abdomen and my upper arms. The backs of my knees also itch more than usual. My fingers are all cracking and peeling which is a little unsightly. This is all in addition to my usual symptoms. In a word, I am itchy. I actually scratch in public. Not a coy little brushing of the fingers but full on, unadulterated scratching. It itches that much.

At my last local doctor's visit, Dr. Bienvenu commented that if doctors could install a dial on transplant patients that regulated the type and amount of GvHD that they had, then they'd choose my setting. I have just enough to show that my co-opted immune system is working, but not so much that it interferes with my day to day life. He also said that transplant patients who exhibit a little GvH tend to have the best prognosis. Yay baby stem cells!

Wednesday, May 28, 2008

To say that the last few days have not been my own would be the ultimate understatement.
It all started Saturday night just before midnight. Squeeze, our eldest cat, began vomiting, which if you've ever had the pleasure of being a cat owner isn't really a big deal. They tend to do it a lot for many different reasons. Then she lurched into the bathroom behind her and defecated. That's not where the cat box resides. Before I can get aggravated I notice that she's leaving a trail of red droplets in her wake. She's approximately 17 and has been suffering from kidney disease for about ten years. On top of this, she's on heart and blood medication which she has to take once a day since she's recently been diagnosed with heart failure and high blood pressure. I adore this cat. She's been with us for almost 14 years and is just now starting to become a lap cat.
Naturally, I freaked out thinking my poor girl was going into renal failure or exhibiting signs of stage four kidney cancer. My mind just went there. I went into automatic mode and started gathering her medicines while Chris put Squeeze in her carrier. We're lucky in that LSU has an excellent small animal vet clinic. I actually have them on speed dial, so you know I've done this before.
By the time we walked into the clinic I was a nervous wreck. Literally. Squeeze just calmly sat in her carrier as if to say, "What's all the fuss about?" She was taken into the back for evaluation while Chris and I tried to pass the time in the empty waiting room. I've been here after midnight before and there are usually one or two worried pet owners in similar situations.
Just under an hour passed before we were ushered into a room to meet the on-call vet who looked dead on his feet. The man probably hadn't slept in close to 24 hours and was now being confronted by a very over anxious pet owner (me) and a man who knows more about blasts and neutrophils than an average person should (Chris). We got the run down on what it could be and what it might be. He explained that he'd have to do x-rays etc. in order to make a more thorough diagnosis and would we like to wait.
So we waited for another hour before being told that one of her kidneys was twice the size it should be and there was definitely blood in her urine. He asked to keep her for observation and got permission to do an ultra-sound in the morning.
She ended up having to stay in the hospital through Monday while various doctors checked her out and put together a treatment plan. I got to pick her up Tuesday morning and talk to the internal medicine specialist. Our dear girl has a cyst on her right kidney the size of an orange. We have a few options open to us for treatment, but because of her age and over-all health they come attached to some very high risks. We asked to have the cyst surgically removed, but the consulting surgeon wants to wait and see. It would appear that the cyst was a secondary finding, i.e. not the reason for the bloody little trail. Squeeze had a urinary tract infection which means that she has 2 more pills to take every day.
She has a follow up appointment next week and we'll go from there. One of her legs was shaved, as was her neck and stomach which is probably the reason for the dirty looks I've been getting since yesterday. I know how she feels.
That catches you up from Saturday to Tuesday. As for today, I was at a home inspection. We found another house late last week and I was loathe to say anything for fear of jinxing myself. The irony is that this it the house that we ditched in order to see the first house that we put an offer on. Go figure. So far so good. There are 2 "major" problems that probably have minor solutions. I'm just hoping that our wanting them fixed doesn't kill the deal. I'll know more tonight when I get a copy of the inspection. Stay tuned for details.
One last thing. I just got a voice mail from my clinical nurse at MDA. My cytogenetics are in and my bone marrow shows no sign of leukemia. W00t!

Tuesday, May 20, 2008

Some Good News...Some Bad

Day +355

WBC 6.6 K/uL
RBC 3.96 M/uL
HGB 12.7 G/dL
PLT 419 K/uL
ANC 5.0 K/uL

Good news and bad news. Good news first...

Today we had our last doctor's visit before Ann's 1 year post transplant anniversary. As you can see from Ann's counts above, the news is good. Ann continues to win her doctor's "best transplant patient I've ever seen..." award. For my part, I can barely believe that we have come so far. Life does seem to be changing remarkably fast now. Less encumbered, it gains momentum and rushes to restore the equilibrium that everyone (me included) took for granted.

It is difficult adapting to a workday world again, but as the doctors and nurses at MDA promised me the white knuckled terror that I lived with everyday for the past year and a half has begun to recede. While I don't feel like I'm 100% yet, it is easier now to go for an hour or two without thinking about Ann getting sick and concentrate on learning my new job. Luckily, I'm now working for a multinational corporation and there is a lot of breathing room.

For her part, Ann has begun to gain more and more independence. She routinely takes the SUV for the day to go house hunting and drops me off at work. A return to LSU to finish out her degree is next on her agenda.

OK, so on to the bad news...

We thought we had found our new home, but the deal officially collapsed today. We made what we thought was a very attractive offer-- the full asking price of the house, contingent on the seller covering our closing costs up to a certain amount. Please keep in mind that the seller has priced the house $3 a square foot higher than comparable houses in the neighborhood. There are no upgraded amenities, a hole in the ceiling of the garage, 3 cracked tiles in the hall, a poorly constructed deck which we'd have to remove, and only a few appliances were slated to stay. The house is also only 6 years old. It's also just been re-zoned as being in a flood zone thanks to FEMA having just completed new flood maps for Baton Rouge. So, we were looking at having to invest in a few things upon moving in.

Unfortunately, the seller countered by actually increasing the final sales price of the house and insisting we have the entirety of our financing completed in three days! I should add that our closing wasn't going to be until the end of June. Then she wanted to continue to live in the property for a few days after closing...rent free from my point of view.

After a few rounds of negotiating with her and her agent Ann and I just threw our hands up and walked away. I feel like we wasted our poor agent's time.

If there is anything the last 350 days has taught us, it is that life is too short to waste on the inconsequential.

Monday, May 19, 2008

I did something that might have been perceived as questionable last week and I've been holding off on blogging just in case. Before people start calling me in a panic, let me just say that my transplant doctor would have been fine with it. I took the necessary precautions, held my breath and dived right in.

I went house hunting. By myself.

I don't know if any of you will recall, but late last September Chris and I put in an offer on a house. Lucky for us the seller didn't accept. I say "lucky" because two days after we put in the bid I had to be rushed back to MDA for my big mystery illness. You might recall that this was when I got sent back down the river to spend another 30 days in solitary due to the perfidious little tumors riddling my body. While I was getting my initial dose of Rituxan to take care of the PTLD, the seller who had previously declined our offer called with a change of heart. What were the odds? Chris explained that we were no longer in a position to make that kind of commitment, but thanks anyway.

So, fast-forward to last week and keep in mind that my transplant doctor very strongly urged us to start making long term plans. I called up our amazing realtor, who also happens to be a friend--no bias here, she really is amazing at what she does. Last Thursday I met up with her and we did the "house" thing.

The only reason that I thought that house shopping would be questionable is that you never really know what to expect. You're walking into a total stranger's house and sometimes they're model ready, but more often they aren't. For example, I asked to see a house located in a pretty nice neighborhood that was priced way below anything else around it. The online pictures looked decent, if dated, and I felt that we'd be up to the task of updating.

Wrong. The highlights included mildew on the exterior and interior, a funky, musky animal scent, damaged drywall, and a dead bird.

Angela knows my situation and got me out of there ASAP. We literally left flames in our wake.

The other houses were cute and occupied by young families with small children who were mostly present. I got to converse with a precocious two-year old and forgot to be in mortal terror of nasty germs looking for a way past my defenses.

I felt normal and it was nice to talk to total strangers who had no inkling of this past year. I know I keep saying things like that, but once you've become a medical paradox, it tends to be the first thing people want to talk about. Or it makes people fall silent in discomfort. Take your pick. With friends and family, I don't mind. They have some inkling of what's happened.

I went out again on Saturday with Chris and we may have found our new home. We've made an offer, which has been countered and in a few minutes I'm off to counter the seller's offer.

I've waited all week-end watching for the tell tale signs that I'm getting sick or carrying an infection. Nothing. Horrendous inherited allergies don't count.

I'm fairly certain that I'll have something to post tomorrow, so the blogging drought might be over.

Thursday, May 15, 2008

I realized that my posting about typing kits for the NMDP might have come off sounding a little strange. I'm referring to the part about non-minority registrants. Of course it's free for everyone until May 19. In most of my experiences typing is usually free for minority participants and there is usually a small fee for non-minorities. Don't quote this as gospel since I am by no means an expert.

There are so few minorities registered with the NMDP and globally. When I was first told that I had to have a transplant, it didn't occur to me that my Anglo-Irish-Vietnamese-Chinese heritage would be such an obstacle. When I was told that there were potentially 26 HLA matches for me globally, I didn't worry. 26 is a lot, right? As it turns out, in the big scheme of things it's not. My 26 matches dwindled down to zero. How many times does this happen on a daily basis? The web is saturated with stories of people waiting for life saving transplants who can't proceed because there are no HLA matches on the books. I was supremely lucky in that I was able to be matched for a cord blood transplant. Somewhere out in the world is a little boy who's parents gifted me with a second chance. Not every waiting transplant patient is so lucky, or eligible for the same procedure.

So please, please, please get registered. Some very generous sponsors are allowing the kits to be sent out for free until May 19. If you're interested, or just curious, please follow this link: http://www.donorgarden.org/main/default.aspx

If you're a minority or mixed race (like me:)) it's particularly urgent that you get registered. You could be the one in one-million who could save the life of some one waiting for a transplant. Getting registered is absolutely painless and won't take up a lot of your time. Please.

Thursday, May 8, 2008

Over the last year, we've talked about the importance of joining the National Marrow Donor Program. It's literally just a few minutes of your time and there are so many people who are terrified and battling a very sinister disease in need of transplant. You could be their match. Getting registered is painless and from now until May 19 it's free for non-minority registrants. Please take a moment and visit this site: http://www.donorgarden.org/main/default.aspx

If you're called up to donate, it's virtually painless and will probably only take up a day of your time. That's not a lot to ask when you consider that you'll be providing many "tomorrows" for someone like me.

If you're already registered, don't forget to keep your profile updated with the NMDP. They need your current information, like how to contact you in case you're needed.

It'll only take you the time to do a cheek swab and post the kit, so what are you waiting for?
The address to Michelle's blog is: http://www.projectmichelle.com/index.html

Wednesday, May 7, 2008

Michelle Needs Your Prayers

Prayer is such a personal and private thing that I have rarely, if ever even spoken about it in public. It takes an unusual and serious situation for me to even consider mentioning it to family members. Unfortunately, something happened today that I feel so strongly about that I feel like I need to bring up the subject.

The beautiful young woman in the picture above is named Michelle. She first contacted me and Ann almost a year ago when Ann was just entering her transplant. She was nothing but supportive and positive, and her kind words went a long way to comfort two very scared people trying to be as brave and positive as they could be.

At the time we first heard from Michelle, she was undergoing treatment for a "favorable" form of Acute Leukemia (AML). "Favorable" in this instance means that a bone marrow transplant was not immediately needed to treat her condition, or to improve her chances. We continued to follow her story on her site, marvelling at her progress as she finished her treatment, began to do normal things like go on a celebratory trip to Spain and then go back to work.

I am very sad to report that we just learned today that Michelle has relapsed and will most likely need to have a bone marrow transplant. In addition, it seems that her doctors have detected a "mass" in her brain that could complicate her treatment.

Please if you can spare a prayer or just a positive thought then please keep Michelle foremost in your mind.

A Belated Update

Day +343

WBC 5.5 K/uL
RBC 4.21 M/uL
HGB 13.3 G/dL
PLT 386 K/uL
ANC 4.09 K/uL

I've got to apologize to all our faithful readers. I really should have updated yesterday, but after starting a new job my system is in a bit of turmoil. After the drive home I'm basically dead tired and it doesn't take much to distract or shut me down.

Ann covered the high points from our trip the other day but I have a little more news to add. We got the preliminary differential count back from MDA on the bone marrow sample and it's good news. There were 0% (zero) blasts detected....Woo Hoo!!! We could'nt have asked for a better result. The cytology tests etcetera will take longer of course, but Dr. Kebrieai is absolutely, glowingly positive.

Doctor Kebriaei also let Ann know that she can now move her visits to MDA back to every three months and we only need to see our local hematologist every month! That little gem of news was so unexpected that it left both of us momentarily speechless. Bombshells are usually bad news after all.

Ann covered almost all of the high-points so I'll end this post by sharing some of the pictures we took at MDA this time around.

The Bone Marrow Aspiration/Flex Clinic

Our favorite cook, Felix cooks Ann a burger at the clinic cafe

First inoculation...ouch that looks like it hurts!

%&^%$@$#$#!!!! It does hurt!!!

Tuesday, May 6, 2008

Day +342

As I write this, I would like everyone to be forewarned that
a) I'm eating left-overs because the baby stem-cells get very angry when they haven't been fed.
b) I feel like I've been shot in the left buttock, a la Forrest Gump.
c) My arms ache like I've been involved in the most vicious game of "Dead arm".

Yesterday was a very long and trying day and I'm just happy to be back in BR in one relatively battered piece. The day started at 4am because we didn't want to stay in a hotel and Baton Rouge is roughly 5 hours from Houston. We were late to my first appointment due to obscene amounts of traffic around the medical center. It didn't really matter since the diagnostic lab was standing room only and the mob waiting to be seen stretched out to the reading room down the hall from the lab. Those of you who are familiar with MDA will know that that's a lot of sick people waiting to get blood drawn. My appointments were spaced at 30 minute intervals, so Chris started calling clinics to let them know that we were in limbo.

My 9:30 appointment was in an area that we'd never been and the receptionist Chris was talking to asked that we come in without having my blood drawn. After securing directions we jogged over to the Cancer Prevention Building anxious to see what this new experience entailed. This place is all the way across the compound and it took us 15 minutes of power walking to get there. Cancer Prevention could have been anything as far as we were concerned and quite frankly, I was wondering what you could do to prevent a cancer that slips in silently and destroys one of the most fundamental parts of your mechanism.

The visit ended up being more of a meet and greet that my transplant doctor had arranged so that I would show up on the Cancer Prevention center's radar. I met with Dr. Blazek who I absolutely loved for her candor and total ease. I was really looking forward to working with her long-term, except she let us know that she was leaving to establish a private practice and yesterday would be my only meeting with her. She's going to specialize in internal medicine, so if I'm ever in need, I'll just go see her privately.

I was given a mini-physical in order to establish a base line reading and we talked about my diagnosis and treatment. Dr. Blazek was able to speak fluently on the subject of transplants since she's had experiences with the procedure in her personal life. We talked about my dad's multiple cancers and I learned that melanoma and leukemia are tied for new diagnoses. So kids, wear your sunblock and don't take anything for granted.

We had to hustle back to the diagnostic lab so that I could have blood drawn and I was able to get in and out in record time. We were about an hour behind on my schedule so we forged ahead and hoped for the best. I had a bone marrow biopsy which would explain the little quip about my left buttock. Tommy, who performed the procedure was a dream and managed to do everything on the first try. This is important in terms of how you'll feel over the next few days. Fewer attempts at punching through your hip equals fewer days coping with a sore bottom.

By this time I was starving since breakfast had occurred over 8 hours earlier and I was fretting over when I was going to get to eat something solid. Chris surprised me with the news that he'd gotten my next appointment rearranged so that we could get a quick bite. I feel terribly for the people sitting at nearby tables in the cafeteria because my table manners were atrocious and I fear that I was making feral animal sounds as I wolfed down my lunch.

I had a bone density scan which was absolutely painless and over so quickly that I was able to get back on track with my appointments. I found myself sitting in a hospital gown explaining all the new little skin ailments that have been plaguing me to my transplant PA. I have several new rashes on my upper arm and abdomen and a small circle of irritated skin on my left eyelid in addition to everything else. There are a few new fingers participating in Paronychea '08 and my nails still look like the surface of mars.

Since I have a habit of sitting on my hands when I'm wearing a hospital gown, I had to be sure that I resisted the compulsion this time around. You see, it makes my palms very red which is an indicator of GvHD of the skin. My transplant doctor always looks at me in askance when she gets to the part of the visit that involves examining my hands and I have to sheepishly tell her that my palms don't always look like a baboon's bottom and that I've been sitting on them like a fidgety child. As it turns out, the sides of my palms including pinkies are constantly red. I've never noticed this, but my amazing doctor has. After giving me a once over, she pronounced that I do indeed have a manifestation of low level chronic GvHD of the skin. This is a good thing so long as it stays in the minor category and doesn't start to occur in any other organ. Patients exhibiting signs of chronic GvH of the skin have been shown to have the least occurrence of relapse.

We asked a few difficult questions involving my situation and were met with a lack of studies and concrete evidence. It would seem that I now find myself in a nebulous stratosphere where studies are currently being done, and I'm being told that I'm cutting edge. Not on the cutting edge, but the embodiment of it. I have unresolved feelings about it. We gleaned that my chances of surviving past 5 years have climbed above 60 percent which is as good as it gets. Dr. Kebriaei has encouraged us to start making long term plans as far as life is concerned. I've hit one benchmark and the next is to survive two years.

I am still not allowed to eat sushi or rare beef. The sun is still not my friend and no one can answer the allergy question. As in, will they always be this bad? I can't take a shower until tomorrow afternoon because of the bone marrow biopsy, so I feel like a disgruntled fraggle with B.O. We learned that we should wait until I hit the 5 year mark before starting a family or adopting. I didn't' argue the fact that this would mean that I would be in the twilight of my thirties which presents a whole host of new issues. I'm sure I'll find a way around it, so it's a worry for another day.

As for my arms feeling like 8 year olds have been whaling on them, I got my first set of vaccinations. Five shots. Not five in one, but five individual shots in various locations of both upper arms. Vaccines cause a good bit of discomfort as they're being absorbed into your tissue. Just for the morbidly curious, here's a lift of what I got: Hepatitis B, Haemophilus Influenza B, Enhanced Inactive Polio, Tetanus and Diphtheria, Pneumococcal Polysaccharide. I'm scheduled for 4 new ones in three months time and then 6 more 9 months after that. Now I know why my friend's daughter Mia always looks so cross after a visit to the pediatrician.

I'm sure that I'm forgetting something, so I trust that Chris will post something when he gets home tonight. Pictures will probably be included. I'm off to make an indentation on the couch.

Thursday, May 1, 2008

Highlands





















































Day +337

Chris and I have returned from the wilds of North Carolina where the climate is confused and the speed limit is a dare, but the scenery is lovely and the elevation is mind boggling. We were visiting his dad, Bob, and stepmother, Suzie, and Fluff the wonder dog. It was a trip that we kept meaning to take and after I got sick it became a trip that we needed to take. We'd put so many important things off for inconsequential reasons for so long and these last 17 months have showed us that you need to make your life a priority and live it like you may lose it tomorrow. Chris and I had hoped to make this trip a part of our East Coast tour last October, but the PTLD intervened and I vacationed in sunny Houston for a month as a VIP guest at MD Anderson. In February we tried again and I was diagnosed with the flu the day before we were to leave.

I'm sure you can all understand my hesitancy in talking about the trip before hand. I felt like I'd jinxed myself both times by getting excited and writing about my anticipation. We left Baton Rouge very early in the morning on Sunday and drove straight through to Highlands, North Carolina. Bob and Suzie live up in the mountains and the only way to reach them is on a narrow one lane road that more closely resembles a rumor littered with gravel. Their house is literally perched on the side of the mountain with an incredible 360 degree view of some of the most beautiful topography. Bears occasionally make themselves comfortable on the attached deck dining on bird seed and wondering why the crazy humans are making so much noise and flapping their arms in aggravation. There are chipmunks, of which I saw none, and many birds like cardinals and finches that perch all around the house.

The satellite navigation system we were using to find our way presented a very unique mystery when we were roughly ten miles from our destination. It kept telling us that we had an hour left before we reached the house, but only had to travel ten miles. We were both skeptical and continued to follow the disembodied voice's directions. Fifteen minutes later Chris's knuckles were pale on the steering wheel and I could hear his teeth grinding together. The road we were using was a ribbon of soft soil and rock with an occasional guard rail. More often than not the only thing keeping us on the road was a healthy respect for gravity and the truck's overworked transmission. Our speed slowed to 10 miles per hour and even then we didn't feel secure negotiating the many hair pin turns and steep slopes. An hour later we met a grinning Bob at the end of his driveway.

The night we arrived I saw a furry brown head pop up above the window sill and slowly disappear from view as my brain scrambled to make connections. I was the only one facing the window and I was so tired from driving all day that I still couldn't tell you if it was an enormous raccoon or a moderately sized bear. By the time my body recognized the message my brain was sending out to me it was too late to get a good look. Bob and Chris went outside with flashlights to check things out while Suzie and I remained in the relative warmth of the living room. I'm sure the raccoon/bear/Bigfoot wasn't disappointed in my absence and I wasn't inclined to go outside to brave the 30 degree mist. 30 degrees in spring. We had dressed warmly by Louisiana standards which meant that our sleeves reached our wrists and we were wearing socks. It wasn't quite adequate.

We spent Monday exploring the town shops of which there are many and they all offer a diverse range of merchandise. It's very reminiscent of a resort town in the midst of a boom. Since we had arrived before the tourist season the streets were relatively empty save for a few locals and the shops were still keeping winter hours. While we were strolling the streets I discovered that I have developed a new super power which does not bode well for my prospects of respectability as an elderly woman. It seemed like every cat within a one mile radius had locked onto my presence and had come to pay homage. It all started with one very well fed calico wearing a red collar and a bell who pranced up and started rubbing her cheek against my ankles. She followed me for a block before handing the torch to a large white cat with gray tabby patches. It went on from there, much to Chris's amusement. I'm fairly certain this means that I'll be the "crazy old lady" with all the cats some years from now.

Tuesday Bob took us on a tour of the Blue Ridge parkway where the views were breath taking and the area is touted as having the most waterfalls in the U.S. per square mile. I can believe it.

Overall we had a very lovely, albeit brief visit. We weren't able to spend more time because Chris had to be back in town to start his new job. Yippee! Life is marching to a more even rhythm and we're starting to think more in terms of everyday things. The next step is getting back in school. I'll start with correspondence classes and I'm hopeful that I'll be able to re-enroll in the fall.

I'll post pictures later tonight since they're all on Chris's phone and he's at work. Monday is a very big day at MD Anderson and it seems like every time I check my schedule it grows to consume another hour.