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?
Thursday, May 8, 2008
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!
%&^%$@$#$#!!!! It does hurt!!!
WBC 5.5 K/uL
RBC 4.21 M/uL
HGB 13.3 G/dL
PLT 386 K/uL
ANC 4.09 K/uL
I've got to apologize to all our faithful readers. I really should have updated yesterday, but after starting a new job my system is in a bit of turmoil. After the drive home I'm basically dead tired and it doesn't take much to distract or shut me down.
Ann covered the high points from our trip the other day but I have a little more news to add. We got the preliminary differential count back from MDA on the bone marrow sample and it's good news. There were 0% (zero) blasts detected....Woo Hoo!!! We could'nt have asked for a better result. The cytology tests etcetera will take longer of course, but Dr. Kebrieai is absolutely, glowingly positive.
Doctor Kebriaei also let Ann know that she can now move her visits to MDA back to every three months and we only need to see our local hematologist every month! That little gem of news was so unexpected that it left both of us momentarily speechless. Bombshells are usually bad news after all.
Ann covered almost all of the high-points so I'll end this post by sharing some of the pictures we took at MDA this time around.
The Bone Marrow Aspiration/Flex Clinic
Our favorite cook, Felix cooks Ann a burger at the clinic cafe
First inoculation...ouch that looks like it hurts!
%&^%$@$#$#!!!! 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.
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
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.
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.
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