Day +368
WBC 12.3 K/uL (!!!)
RBC 4.37 M/uL
HGB 13.9 G/dL
PLT 484 K/uL
ANC 8.4 K/uL (!!!)
It all started Saturday with a cough, which became a tickle in the throat, then a fever. I never honestly felt under the weather, but a cough is a cough and so I started monitoring my temperature. It went up steadily until Sunday, when it peaked at 100. I had a doctor paged at my local hematologist's office and he phoned in some levaquin to get the ball rolling. My doctor was kind enough to shoe horn me in today for a few tests including blood work and a chest x-ray.
My white blood cells were elevated and to put my mind at ease, Dr. Bienvenu ordered a slide so he could have a look at what was going on. The cells turned out to be mature neutrophils and not blasts which put Chris's mind at ease. My lungs were clear as far as the x-ray went.
As Dr. Bienvenu put it, I probably caught a kiddie bug. Kids must be the most resilient creatures on earth to keep bouncing back from these strange infections. I know I have the immune system of a one year old, but it's fighting to keep a 33 year old illness free. The body is a traitor as you wave good-bye to your twenties.
As a preventative measure, I have to take valtrex twice a day for the next week and as a salve to my irritated throat I get to take a prescription cough syrup. Hello narcolepsy.
I had a very lovely "birthday" replete with cards from friends and a surprise dinner with Chris. We had a nice dinner at the Maisonette Brandt followed by hot fudge Sundays at home. Honestly, the secret to my heart is a cake purchased from a grocery bakery. Yes, I know what the frosting is made of and yet my palate yearns for the overt sweetness layered over dry yellow cake. No, I would not eat shortening out of a can, but I might consider it if you mix in some icing sugar. I'm just saying. If there is communal cake and icing is missing, it's usually because of me.
I have another birthday coming up in October, so there's still another chance at cake. I know I can just buy myself one, but I'd feel weird about eating the entire thing.
I'm getting plenty of rest and filling up on fluids while I frantically try to finish a gift for some friends who just welcomed their new daughter over the weekend.
Such is life.
Monday, June 2, 2008
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!
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.
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.
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.
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.
Subscribe to:
Posts (Atom)