WBC: 6.1 k/ul
RBC: 3.48 M/UL
PLT: 387 k/ul
ALC: 1.4 k/UL
ANC: 3.8 k/ul
ALK PHOS: 192 IU/L
AST/SGOT: 27 IU/L
ALT/SGPT: 45 IU/L
The last three numbers pertain to my liver and are trending down nicely. The AST/SGOT is within normal ranges. The ALT/SGPT is on the very cusp of being normal and the ALK PHOS is a little over double the high end of normal as opposed to being three to four times normal as it has been in the past. The next checkup is in Houston two days before Christmas.
Thursday, November 19, 2009
Muddling through
A few years ago, Chris and I took a long overdue trip to California to see my extended family. While we were there, a group of relatives, including my tiny grandmother brought us to a small Buddhist temple to pay our respects to my grandfather who had passed years earlier. Chris and I speak little to no Vietnamese and so we tended to orbit one another while my aunts and uncles visited with the monk holding vigil that day. For a short period, I found myself standing with one of my younger aunts while she had a conversation with the smiling monk, listening to the sing-song cadence of his voice as he spoke at length. There was a long pause during which my aunt started to giggle. As it turns out, the monk had been speaking to me the entire time I'd been daydreaming and looking around the temple.
My aunt explained to him that I only spoke English and he had a good chuckle over it all. I should have had a laugh myself, but the experience made me feel out of sync for the rest of the day. What must that poor man have been thinking as I looked at everything but him?
This theme continued throughout our visit at dinner parties and shopping excursions. Guests or proprietors would talk to me without me being aware that I was the focus of their conversation and I would continue doing whatever it was I was doing at the time. The point I'm so inelegantly trying to make is that I look Asian and while in the company of my relatives who are multi-lingual, most people assume that I am as well.
As a child, I spoke fluent Thai. No one else in my family did, including my parents. I learned it from the maid while we lived in Bangkok. I wasn't fluent in English until I was about four and I learned it from watching Sesame Street. I've always been the one that was just outside of the norm.
I've felt out of sync this entire week. I've been doing a lot of things out and about solo and realize that while wearing a hat, I look just as average as everyone else. Except, I've forgotten how to speak the language.
I find that I'm no longer comfortable doing some of the pedestrian, mundane things that I used to do. An errand to the Apple store to have Chris's computer serviced left me frazzled. An impulse stop at another shop left me feeling isolated. A visit with a local opthamologist found me floundering for words.
These are the everyday things that I've been aspiring to do since I've been transplanted. I thought I was sick of having to buy everything off of the internet. I longed to be able to try clothes on in a shop. All of the little nuisances that add up to a normal life now are so foreign to me that I marvel at being able to do them at all. The very act of asserting my independence has left me feeling disconnected.
A visit with my local oncologist yesterday put the entire week into perspective. Dr. B. came in, reviewed my counts with me and asked me if I had anything new to tell him. I slumped in my chair, shook my head and said, "Not a thing." He smiled and told me that my counts were perfect and everything looked normal. He checked my head and neck for unusual lymph nodes, then did the spleen check and pronounced everything normal. We went through the perfunctory checks for heart and lung functions. Normal.
As I left with a copy of my counts in hand, he reiterated to me that I was the best looking transplant patient he'd ever seen. Someone else remarked that you'd never guess I'd had anything done to me.
So I suppose this entire week has been a test of my patience and my nerves. As for how I did, I'm still standing and will have to work on embracing life as a normal person. There will be hiccups and I will stutter, but I'm determined to relearn how to speak the language of the everyday.
My aunt explained to him that I only spoke English and he had a good chuckle over it all. I should have had a laugh myself, but the experience made me feel out of sync for the rest of the day. What must that poor man have been thinking as I looked at everything but him?
This theme continued throughout our visit at dinner parties and shopping excursions. Guests or proprietors would talk to me without me being aware that I was the focus of their conversation and I would continue doing whatever it was I was doing at the time. The point I'm so inelegantly trying to make is that I look Asian and while in the company of my relatives who are multi-lingual, most people assume that I am as well.
As a child, I spoke fluent Thai. No one else in my family did, including my parents. I learned it from the maid while we lived in Bangkok. I wasn't fluent in English until I was about four and I learned it from watching Sesame Street. I've always been the one that was just outside of the norm.
I've felt out of sync this entire week. I've been doing a lot of things out and about solo and realize that while wearing a hat, I look just as average as everyone else. Except, I've forgotten how to speak the language.
I find that I'm no longer comfortable doing some of the pedestrian, mundane things that I used to do. An errand to the Apple store to have Chris's computer serviced left me frazzled. An impulse stop at another shop left me feeling isolated. A visit with a local opthamologist found me floundering for words.
These are the everyday things that I've been aspiring to do since I've been transplanted. I thought I was sick of having to buy everything off of the internet. I longed to be able to try clothes on in a shop. All of the little nuisances that add up to a normal life now are so foreign to me that I marvel at being able to do them at all. The very act of asserting my independence has left me feeling disconnected.
A visit with my local oncologist yesterday put the entire week into perspective. Dr. B. came in, reviewed my counts with me and asked me if I had anything new to tell him. I slumped in my chair, shook my head and said, "Not a thing." He smiled and told me that my counts were perfect and everything looked normal. He checked my head and neck for unusual lymph nodes, then did the spleen check and pronounced everything normal. We went through the perfunctory checks for heart and lung functions. Normal.
As I left with a copy of my counts in hand, he reiterated to me that I was the best looking transplant patient he'd ever seen. Someone else remarked that you'd never guess I'd had anything done to me.
So I suppose this entire week has been a test of my patience and my nerves. As for how I did, I'm still standing and will have to work on embracing life as a normal person. There will be hiccups and I will stutter, but I'm determined to relearn how to speak the language of the everyday.
Tuesday, November 10, 2009
Stuff
An acute pain on my right side woke me up around 4am on Sunday. It felt very much like the same pain that was diagnosed in August and September, so I went back to sleep and thought nothing more of it. When I finally got up that day, I took 2 aleve thinking it was the same inflammation that had led to the partially collapsed lung. By midmorning, my entire abdomen was swollen.
The acute pain was more severe and I was loathe to move around because of the discomfort. By that night, it was painful to lie down, so I slept sitting up, thinking that things would resolve in the morning. By Monday morning, it was painful to stand due to the abdominal swelling.
Chris took me to the ER where I had x-rays and a CT scan as well as blood work. My white blood cell count was 10.9 which sent me into a moderate panic. All of my other numbers were normal for me with only one liver function test coming back slightly elevated. Normally, I return with 3 on the high side, so I guess this was a plus. The ER doctor didn't think anything looked amiss and chalked the high WBC up to being a response to the acute pain I was feeling.
The x-rays and CT scan showed nothing nefarious. There was a large deposit of material in my right transverse colon which was exactly where the most acute pain could be found. It would seem that my digestive system had stopped functioning normally, again. I was given an injection of anti-inflammatory meds via my IV line just in case there was any pleurisy and sent home with instructions to get plenty of fluids and take a few over the counter meds.
The acute pain has subsided and the swelling of my abdomen has lessened The muscles are all sore from being stretched for the last few days. I plan on staying close to home for the next few days. With transplants, if it's not one strange thing, it's another.
The acute pain was more severe and I was loathe to move around because of the discomfort. By that night, it was painful to lie down, so I slept sitting up, thinking that things would resolve in the morning. By Monday morning, it was painful to stand due to the abdominal swelling.
Chris took me to the ER where I had x-rays and a CT scan as well as blood work. My white blood cell count was 10.9 which sent me into a moderate panic. All of my other numbers were normal for me with only one liver function test coming back slightly elevated. Normally, I return with 3 on the high side, so I guess this was a plus. The ER doctor didn't think anything looked amiss and chalked the high WBC up to being a response to the acute pain I was feeling.
The x-rays and CT scan showed nothing nefarious. There was a large deposit of material in my right transverse colon which was exactly where the most acute pain could be found. It would seem that my digestive system had stopped functioning normally, again. I was given an injection of anti-inflammatory meds via my IV line just in case there was any pleurisy and sent home with instructions to get plenty of fluids and take a few over the counter meds.
The acute pain has subsided and the swelling of my abdomen has lessened The muscles are all sore from being stretched for the last few days. I plan on staying close to home for the next few days. With transplants, if it's not one strange thing, it's another.
Wednesday, November 4, 2009
Lingering
It's been one week since the sore throat manifested and I feel really well. There's still the issue of a lingering runny nose, but it does get noticeably better every day. In the past, before cancer, I could shake a cold in a few days, a week at the very most. This cold is literally my first since the last transplant, and I find that it's resolving in stages. First the sore throat disappeared, then the congestion, and now I'm waiting on the water works. My energy level is back to where it was and my appetite is excellent. I just need to be patient and understand that this immune system is having to find it's way in a foreign environment.
One strange thing I noticed while I was sick was a significant reduction in the occurrence of skin GvH flares. I assume my immune system was busy trying to figure out what was going on with the cold and took a break from torturing my skin. As the cold resolved, the skin GvH ramped up. Today has been particularly difficult in that regard.
On a scale of 1 to 10 in comparison to other transplant patients' GvH issues, I'd rank mine a 2, maybe a 3 on my worst day. The skin issues manifest as itching, rashes and dry patches. Today, there wasn't a single inch of me that didn't feel like it was covered in poison ivy; especially my scalp. At the moment, the itching is a low level hum on my face and feet, but that could change at any time.
As for what I've been doing with myself since last week, there are only a few things to report. Chris's dad and step-mom are in town for a few days and last night we got to have dinner with them which was really nice. We had the opportunity to visit them last year right before I relapsed and I can honestly say that they live in one of the most beautiful parts of the country.
We had our first Halloween in the house which was a lot of fun. Before cancer, we had a townhouse in a residential development that had a few kids, but there were never trick-or-treaters. Since we don't have kid ourselves, we weren't really sure of what to expect. I have friends in other parts of the country who take their kids to organized events instead of letting them go door to door like we did as children.
I emailed the home owner's association to get a rough idea of how much candy to buy. We hadn't received a reply the week of Halloween, so we just guessed based on the size of the neighborhood. The subdivision is so large, there are 2 homeowner's associations, and based on that, we bought a ridiculous amount of candy. A few days later, we ran into our next door neighbor and she told us to expect maybe half a dozen kids.
I made a point of getting candy that I loved as a child, so I wasn't heartbroken to hear that I'd probably be eating candy for the next month. Chris is trying to lose weight, so he was definitely worried.
Chris started getting really excited about the holiday and wanted to decorate the yard and windows. I know he's going to be a really fun dad because he's already making plans for something big next year. Keep in mind that he's an engineer, so there's probably going to be lumber and motors involved.
We had way more kids than we expected and had just enough candy. The first set of kids showed up at 5:30 just as we finished putting the yard decorations up. I happened to be in the kitchen, which faces the street, when I saw a tiny blur tearing across our lawn. I could make out a tiara and a frilly little tutu as she whizzed past.
There was a steady stream of kids until 8:15 and Chris and I had a blast handing out candy. The kids were mostly of the under 10 set and were all precious. I'm really looking forward to doing it again next year.
One strange thing I noticed while I was sick was a significant reduction in the occurrence of skin GvH flares. I assume my immune system was busy trying to figure out what was going on with the cold and took a break from torturing my skin. As the cold resolved, the skin GvH ramped up. Today has been particularly difficult in that regard.
On a scale of 1 to 10 in comparison to other transplant patients' GvH issues, I'd rank mine a 2, maybe a 3 on my worst day. The skin issues manifest as itching, rashes and dry patches. Today, there wasn't a single inch of me that didn't feel like it was covered in poison ivy; especially my scalp. At the moment, the itching is a low level hum on my face and feet, but that could change at any time.
As for what I've been doing with myself since last week, there are only a few things to report. Chris's dad and step-mom are in town for a few days and last night we got to have dinner with them which was really nice. We had the opportunity to visit them last year right before I relapsed and I can honestly say that they live in one of the most beautiful parts of the country.
We had our first Halloween in the house which was a lot of fun. Before cancer, we had a townhouse in a residential development that had a few kids, but there were never trick-or-treaters. Since we don't have kid ourselves, we weren't really sure of what to expect. I have friends in other parts of the country who take their kids to organized events instead of letting them go door to door like we did as children.
I emailed the home owner's association to get a rough idea of how much candy to buy. We hadn't received a reply the week of Halloween, so we just guessed based on the size of the neighborhood. The subdivision is so large, there are 2 homeowner's associations, and based on that, we bought a ridiculous amount of candy. A few days later, we ran into our next door neighbor and she told us to expect maybe half a dozen kids.
I made a point of getting candy that I loved as a child, so I wasn't heartbroken to hear that I'd probably be eating candy for the next month. Chris is trying to lose weight, so he was definitely worried.
Chris started getting really excited about the holiday and wanted to decorate the yard and windows. I know he's going to be a really fun dad because he's already making plans for something big next year. Keep in mind that he's an engineer, so there's probably going to be lumber and motors involved.
We had way more kids than we expected and had just enough candy. The first set of kids showed up at 5:30 just as we finished putting the yard decorations up. I happened to be in the kitchen, which faces the street, when I saw a tiny blur tearing across our lawn. I could make out a tiara and a frilly little tutu as she whizzed past.
There was a steady stream of kids until 8:15 and Chris and I had a blast handing out candy. The kids were mostly of the under 10 set and were all precious. I'm really looking forward to doing it again next year.
Trick-or-Treat
Close up of a bedsheet ghost
Chris creating some spooky ambiance
I poured all of the candy into a bag to mix it up. Chris is posing with it to give perspective.
Monday, November 2, 2009
As requested
For Dianne and David, here's the link to the story about the new research drug: Irish researchers discover drug that can kill leukemia cells
I stole it from my friends at AADP
I stole it from my friends at AADP
Thursday, October 29, 2009
Dx=cooties
I am sick. There, I said it. I managed to go almost 14 months post transplant without catching a single pedestrian virus or bacterial infection. Almost.
Wednesday I woke up with a sore throat. I didn't think anything of it and chalked it up to mouth breathing while sleeping. It happens. When it didn't resolve within the hour, I called my local oncologist to see if he could fit me in. His schedule was packed, so the scheduler forwarded me to the nurse's voicemail. I left her a list of my symptoms; sore throat, head congestion, no fever.
Sheryl called me back to get a more complete picture of what was going on, then told me to sit tight while she consulted with Dr. B. They would either squeeze me in or call in a prescription.
Chris checked in with me while I waited and I let him in on what was going on. We're both a little gun shy of mysterious sore throats. The first mystery sore throat led to a diagnosis of PTLD after the first transplant. Pre-Lymphoma is a very scary thing. The second mystery sore throat was the leading indicator of relapse.
This sore throat feels nothing like those two. For the first time in forever, this feels like a legitimate cootie. I tried to explain the difference to Chris, but I could see that he wasn't sold on it. He took the rest of the day off of work to come home to monitor me. I felt bad that he did because there wasn't really anything to monitor.
My local team decided to call in a prescription for Z-pak. Sweet, sweet Z-pak. The pharmacy didn't have it ready until almost 5pm and I didn't get out of the house until around 6 to get it.
I've got the first dose under my belt and will take the second later this afternoon. My throat is still sore and phlegmy. My nose is running and my head is still congested. No fevers as of yet and I'm doing my best to stay hydrated.
I've pinpointed the exact person who passed this on to me. It was an old acquaintance that I ran into at the grocery store on Sunday. I hadn't seen her in at least 5 years and she had no idea of what's been going on. She'd already hugged me twice before I realized that she might have a little something. It was when she was walking away that I heard her cough and clear her throat. Grrrr.
I know she had no idea. It's just one of those things that happens innocently enough. I was bound to catch something sooner or later.
The house is a wreck and will continue to be so until I feel a little better. I'm thankful that there are frozen left-overs, so I don't have to actively cook. Unless you count making rice, which I don't.
I did manage to run for the first time in years on Tuesday. It felt like coming home after such a long hiatus. Of course, all of the old complaints made themselves known within minutes. The weak ankles and shoddy left knee that likes to pop every few steps were in full effect. I got in half a mile before I decided to powerwalk the last mile.
I am and will always be a slow runner. At my peak, the best I could do was a seven and a half minute mile. That was in my late teens and early twenties. Those days are long gone. The thirty something me plans on babying her joints and running recreationally. There may be a 5k in my very distant future, but that is it. No marathons here, thank you very much.
This week is a complete wash. I plan on sitting on the couch and knitting until I feel better. Maybe Chris and I will get around to a little furniture shopping this weekend. We still don't have a dining table and the fold up card table in the dining room is starting to look silly. We'll get something in there eventually.
Wednesday I woke up with a sore throat. I didn't think anything of it and chalked it up to mouth breathing while sleeping. It happens. When it didn't resolve within the hour, I called my local oncologist to see if he could fit me in. His schedule was packed, so the scheduler forwarded me to the nurse's voicemail. I left her a list of my symptoms; sore throat, head congestion, no fever.
Sheryl called me back to get a more complete picture of what was going on, then told me to sit tight while she consulted with Dr. B. They would either squeeze me in or call in a prescription.
Chris checked in with me while I waited and I let him in on what was going on. We're both a little gun shy of mysterious sore throats. The first mystery sore throat led to a diagnosis of PTLD after the first transplant. Pre-Lymphoma is a very scary thing. The second mystery sore throat was the leading indicator of relapse.
This sore throat feels nothing like those two. For the first time in forever, this feels like a legitimate cootie. I tried to explain the difference to Chris, but I could see that he wasn't sold on it. He took the rest of the day off of work to come home to monitor me. I felt bad that he did because there wasn't really anything to monitor.
My local team decided to call in a prescription for Z-pak. Sweet, sweet Z-pak. The pharmacy didn't have it ready until almost 5pm and I didn't get out of the house until around 6 to get it.
I've got the first dose under my belt and will take the second later this afternoon. My throat is still sore and phlegmy. My nose is running and my head is still congested. No fevers as of yet and I'm doing my best to stay hydrated.
I've pinpointed the exact person who passed this on to me. It was an old acquaintance that I ran into at the grocery store on Sunday. I hadn't seen her in at least 5 years and she had no idea of what's been going on. She'd already hugged me twice before I realized that she might have a little something. It was when she was walking away that I heard her cough and clear her throat. Grrrr.
I know she had no idea. It's just one of those things that happens innocently enough. I was bound to catch something sooner or later.
The house is a wreck and will continue to be so until I feel a little better. I'm thankful that there are frozen left-overs, so I don't have to actively cook. Unless you count making rice, which I don't.
I did manage to run for the first time in years on Tuesday. It felt like coming home after such a long hiatus. Of course, all of the old complaints made themselves known within minutes. The weak ankles and shoddy left knee that likes to pop every few steps were in full effect. I got in half a mile before I decided to powerwalk the last mile.
I am and will always be a slow runner. At my peak, the best I could do was a seven and a half minute mile. That was in my late teens and early twenties. Those days are long gone. The thirty something me plans on babying her joints and running recreationally. There may be a 5k in my very distant future, but that is it. No marathons here, thank you very much.
This week is a complete wash. I plan on sitting on the couch and knitting until I feel better. Maybe Chris and I will get around to a little furniture shopping this weekend. We still don't have a dining table and the fold up card table in the dining room is starting to look silly. We'll get something in there eventually.
Wednesday, October 28, 2009
Donor
I got a call from one of the BMT coordinators at MDA a few minutes ago. Lori is constantly buried in work, but always has the time to answer questions or look into things for you, which is amazing considering the amount of stuff she has to deal with. When she identified herself on the phone, it didn't immediately click that it was BMT Lori. I immediately started thinking, "Oh hell, the PCR came back fishy." No pun intended--it's also called the FISH test.
She called to let me know that she had my donor's information for me, with the caveat that the donor didn't release any contact information. She has contact information for me if she ever wants to get in touch. I'm just so grateful that she donated and gave me this extra shot at living.
Her name is Dana and she lives in Hawaii. I have a little more information that I'm not posting out of respect for her privacy. I'm most surprised that she's local since Chris and I were convinced that she was from Malaysia or another country close to it. We were working from something a different coordinator let slip eons ago. When you really think about it, Hawaii does make sense. There's such a rich blend of cultures that have intermingled over the centuries and it's not unusual to run into Hapas of all kinds.
We weren't a perfect match on the Human Leukocyte Antigen front, but she was perfect enough to save my life. If she ever googles me and comes across this blog, I just want her to know that she helped facilitate a miracle and I'll be forever grateful for her selflessness. After all, I wouldn't be here writing this if not for her.
She called to let me know that she had my donor's information for me, with the caveat that the donor didn't release any contact information. She has contact information for me if she ever wants to get in touch. I'm just so grateful that she donated and gave me this extra shot at living.
Her name is Dana and she lives in Hawaii. I have a little more information that I'm not posting out of respect for her privacy. I'm most surprised that she's local since Chris and I were convinced that she was from Malaysia or another country close to it. We were working from something a different coordinator let slip eons ago. When you really think about it, Hawaii does make sense. There's such a rich blend of cultures that have intermingled over the centuries and it's not unusual to run into Hapas of all kinds.
We weren't a perfect match on the Human Leukocyte Antigen front, but she was perfect enough to save my life. If she ever googles me and comes across this blog, I just want her to know that she helped facilitate a miracle and I'll be forever grateful for her selflessness. After all, I wouldn't be here writing this if not for her.
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