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.
Wednesday, October 28, 2009
Monday, October 26, 2009
35 down
As promised, here are two shots of my new driver's license picture. They're a little blurry because of the special film used to deter crafty kids from making fake i.d.'s, etc.
I still can't reconcile the face in the picture with my own. There's still a residual fullness to my face that I attribute to steroids.
I've also taken close ups of my scalp so you can see what's happening with my hair.
I'm almost 14 months out from the transplant and I still can't grow a full head of hair. Dr. K. keeps telling me it's busulfan hair and will grow back. I've done a bit of research and found that as a result of receiving busulfan, I'm lucky to have what I do. There isn't a lot of data available on the net, but from the little I've found it appears that busulfan doesn't actually cause your hair to fall out if given during regular chemo. I assume this to mean while you actually have hair and are just beginning a regimen. For those who have received busulfan after transplant, hair regrowth becomes a problem. A study that followed transplant patients who received the drug post transplant showed that a very large percentage had spotty regrowth and diffuse alopecia.
I'd say I fit the mold. My stylist is wonderful and has done much to make me presentable, but when something doesn't exist, you can't pretend that it does. I wish it didn't bother me as much as it does, but I feel like this is the last road block to passing as normal in public. I do occasionally go out without a hat, but find it's easier to cover up to avoid the curious stares and questions.
I worry that it will make it difficult to conceal the fact that I've had cancer when I'm finally able to go back to school or start interviewing for jobs. It's such a petty vanity when I consider all that we've fought for and I wish I could rise above it. Unfortunately, I'm only human and haven't been able to find a way to cope with it.
I've started researching wigs online and my stylist has given me the name of a great place to find a wig in town. I just haven't been able to reason myself into actually buying a wig. I feel like I'll be giving in, but at the same time I'm sick to death of dressing like I'm 12 to make a baseball cap seem like a reasonable accessory.
My transplant PA has given a thumbs up to the minoxidil route. Chris is wary of me introducing a new chemical to my regimen and so I'm holding off until he feels more comfortable with the idea. Right now, I just want to pass for normal.
As for more mundane things, I baked cupcakes to celebrate my 35th birthday. They came from a mix, but were frosted with chocolate ganache frosting made from scratch to give them a little cache'. For those interested in the frosting recipe, it's 12 ounces of semi-sweet morsels and 2 cups of cream heated over medium low heat. You have to constantly stir it until it reaches the consistency of loosely set pudding. It takes about 30 minutes and is well worth it. It's very much like the center of a dark chocolate truffle. Once it comes off the heat, you have to refrigerate it for a few hours until it's cool. If you over heat it, the fat separates and it won't set on it's own. This happened to me last night, so I poured the entire concoction into the stand mixer and whipped it on medium speed for 15 minutes until it came back together.
I managed to eat two cupcakes for lunch before I had to raise the white flag. The ganache is rich. This is the first birthday in three years that wasn't spent either in the hospital or in the clinic. I'm going to finish celebrating by folding some laundry. Who says the life of a transplantee isn't glamorous?
I still can't reconcile the face in the picture with my own. There's still a residual fullness to my face that I attribute to steroids.
I've also taken close ups of my scalp so you can see what's happening with my hair.
I'm almost 14 months out from the transplant and I still can't grow a full head of hair. Dr. K. keeps telling me it's busulfan hair and will grow back. I've done a bit of research and found that as a result of receiving busulfan, I'm lucky to have what I do. There isn't a lot of data available on the net, but from the little I've found it appears that busulfan doesn't actually cause your hair to fall out if given during regular chemo. I assume this to mean while you actually have hair and are just beginning a regimen. For those who have received busulfan after transplant, hair regrowth becomes a problem. A study that followed transplant patients who received the drug post transplant showed that a very large percentage had spotty regrowth and diffuse alopecia.
I'd say I fit the mold. My stylist is wonderful and has done much to make me presentable, but when something doesn't exist, you can't pretend that it does. I wish it didn't bother me as much as it does, but I feel like this is the last road block to passing as normal in public. I do occasionally go out without a hat, but find it's easier to cover up to avoid the curious stares and questions.
I worry that it will make it difficult to conceal the fact that I've had cancer when I'm finally able to go back to school or start interviewing for jobs. It's such a petty vanity when I consider all that we've fought for and I wish I could rise above it. Unfortunately, I'm only human and haven't been able to find a way to cope with it.
I've started researching wigs online and my stylist has given me the name of a great place to find a wig in town. I just haven't been able to reason myself into actually buying a wig. I feel like I'll be giving in, but at the same time I'm sick to death of dressing like I'm 12 to make a baseball cap seem like a reasonable accessory.
My transplant PA has given a thumbs up to the minoxidil route. Chris is wary of me introducing a new chemical to my regimen and so I'm holding off until he feels more comfortable with the idea. Right now, I just want to pass for normal.
As for more mundane things, I baked cupcakes to celebrate my 35th birthday. They came from a mix, but were frosted with chocolate ganache frosting made from scratch to give them a little cache'. For those interested in the frosting recipe, it's 12 ounces of semi-sweet morsels and 2 cups of cream heated over medium low heat. You have to constantly stir it until it reaches the consistency of loosely set pudding. It takes about 30 minutes and is well worth it. It's very much like the center of a dark chocolate truffle. Once it comes off the heat, you have to refrigerate it for a few hours until it's cool. If you over heat it, the fat separates and it won't set on it's own. This happened to me last night, so I poured the entire concoction into the stand mixer and whipped it on medium speed for 15 minutes until it came back together.
I managed to eat two cupcakes for lunch before I had to raise the white flag. The ganache is rich. This is the first birthday in three years that wasn't spent either in the hospital or in the clinic. I'm going to finish celebrating by folding some laundry. Who says the life of a transplantee isn't glamorous?
Wednesday, October 21, 2009
Boogeyman deferred
I had the monthly visit with my local oncologist and all is well. For those of you interested in the counts, here they are:
WBC: 6.9 k/ul
RBC: 3.5 M/UL
PLT: 333 k/ul
ANC: 4.8 k/ul
ALK PHOS: 228 IU/L
ALT/SGPT: 55 IU/L
As you can see, I'm still a little low for red blood cells and the two numbers associated with my liver function are still elevated. They are down from my last visit, though, so I take this as a positive sign.
Dr. B. told me that I looked the best that he's ever seen me since I've become his patient. Kudos. I'm just happy to be here.
The scariest part of today's visit was the waiting room. It seemed that every other person either had the sniffles or a cough. Seeing as there were very obviously a few individuals undergoing chemo, I was surprised to be the only one wearing a mask. I often wonder if these patients are being non-compliant, or simply don't realize the seriousness of their situation. Of course I've been tempted not to wear a mask, but when I weigh the potential consequences versus my own comfort, compliance always wins out. I just don't love enforced confinement in a hospital room.
I've already scheduled my next visit for November, so I can check that off of my list.
As for running this week, it's not going to happen and it's all my own fault. I banged the top of my foot on the door well of Chris's car on Sunday and much like a paper cut, the residual pain seems out of proportion to the injury. It was my own fault for not picking my foot up high enough and I do feel ridiculous for having let it happen. There's a bruise on top of my foot and it's very uncomfortable to wear a lace up shoe. I tried and managed to walk on Monday, but in doing so, I seem to have irritated the injury site in the process. I'll get back into the swing of things next week.
I plan on renewing my license tomorrow, so stay tuned for further hi-jinks. I promise to post the picture so you can see exactly what is happening with my hair. Can't wait to enjoy four years of looking a little off on my ID.
WBC: 6.9 k/ul
RBC: 3.5 M/UL
PLT: 333 k/ul
ANC: 4.8 k/ul
ALK PHOS: 228 IU/L
ALT/SGPT: 55 IU/L
As you can see, I'm still a little low for red blood cells and the two numbers associated with my liver function are still elevated. They are down from my last visit, though, so I take this as a positive sign.
Dr. B. told me that I looked the best that he's ever seen me since I've become his patient. Kudos. I'm just happy to be here.
The scariest part of today's visit was the waiting room. It seemed that every other person either had the sniffles or a cough. Seeing as there were very obviously a few individuals undergoing chemo, I was surprised to be the only one wearing a mask. I often wonder if these patients are being non-compliant, or simply don't realize the seriousness of their situation. Of course I've been tempted not to wear a mask, but when I weigh the potential consequences versus my own comfort, compliance always wins out. I just don't love enforced confinement in a hospital room.
I've already scheduled my next visit for November, so I can check that off of my list.
As for running this week, it's not going to happen and it's all my own fault. I banged the top of my foot on the door well of Chris's car on Sunday and much like a paper cut, the residual pain seems out of proportion to the injury. It was my own fault for not picking my foot up high enough and I do feel ridiculous for having let it happen. There's a bruise on top of my foot and it's very uncomfortable to wear a lace up shoe. I tried and managed to walk on Monday, but in doing so, I seem to have irritated the injury site in the process. I'll get back into the swing of things next week.
I plan on renewing my license tomorrow, so stay tuned for further hi-jinks. I promise to post the picture so you can see exactly what is happening with my hair. Can't wait to enjoy four years of looking a little off on my ID.
Wednesday, October 14, 2009
The gift that keeps on giving
The following question is my kryptonite: How are you doing?
The moment I am asked this question, I become incapable of forming a coherent thought. I know that the person asking wants to know about my current state of being, but after three years of doing the cancer jig, I still haven't come up with that perfect, all encompassing answer. The one phrase that will satisfy that need to connect and effectively communicate my actual state of health constantly eludes me.
I understand that some people ask as a courtesy and are hoping for a simple, "Fine." I have other friends that are looking for in depth detail of what's going on medically and are willing to sit through thirty minutes of medical jargon and blood counts with chemistry panels thrown in for good measure. There are still others who want to know what's going on emotionally as well as physically. Then there are those who use it as the opening parry in a game of competitive woe.
I had that conversation yesterday with someone who has known me for my entire life. I love this person and understand that they have a very unique perspective of the world around them and their place in it. We don't always get along, but this is true of many long term relationships. She asked, "How are you?" Before I managed to get two words out she launched into the minutiae of every wrong done to her by a small coalition of people. 20 minutes went by before she paused for breath. 20 more elapsed before I realized that my cancer diagnosis was one of her woes. She wasn't upset that I had cancer. She was upset that the fact that I had cancer was happening to her.
I refuse to play the competitive sport that is "poor me." I cannot relate. If you want to compare notes for the sake of understanding how your illness relates to mine, I am there. If you want to pick my brain for what I know about leukemia, I welcome all inquiries. I want my experience with cancer to be informative to other people who may be overwhelmed by their own diagnosis. If you need help or a spare ear, I'm your girl.
Now, if you're going to use the fact that some latent genetic switch accidentally flipped on causing cellular anomalies and all around fun in the form of blood born cancer in my person as your personal cross to bear, then I have a problem. It's an unfortunate situation that I'm realizing happens more frequently than not to people diagnosed with a life altering illness. I'd be interested to know how other patients deal with it and the overall outcome.
The person to whom I referred earlier doesn't read the blog. I know for a fact that she's never touched a computer, so this isn't a direct message to any one person. I just felt that I needed to be honest about a residual issue related to my recovery. I don't think I'll ever be able to answer the question, "How are you?" adequately in an extemporaneous platform, and so I'll stick with the answer that I usually give. I'm fine.
The diaphragm issue isn't bothering me this week. I've been walking 30 minutes each day to combat osteopenia. It's been going well and I've been able to steadily increase my speed. I'm pretty confident that I'll start running next week and am excited to be able to join the ranks of PJ, Ronni, Susan, and Jim. I definitely won't be in the same class, as they are all serious runners and Jim is currently training for a marathon, but it feels good to look forward to doing something that I used to love doing. Since I still have issues with GvHD and heat, all of my running will be accomplished on a treadmill indoors.
Chris is doing well and staying busy with work. The cats have managed to stay out of the vet's office this week and are creeping closer to being buddies. I caught Etsuko grooming Akiko yesterday. Akiko tolerated it for a few minutes before it was time to wrestle. My brother got married on his birthday and started basic training for the Navy last week. It's been an eventful week on a personal front and I can say with all honesty that life is amazing and I really am doing fine.
The moment I am asked this question, I become incapable of forming a coherent thought. I know that the person asking wants to know about my current state of being, but after three years of doing the cancer jig, I still haven't come up with that perfect, all encompassing answer. The one phrase that will satisfy that need to connect and effectively communicate my actual state of health constantly eludes me.
I understand that some people ask as a courtesy and are hoping for a simple, "Fine." I have other friends that are looking for in depth detail of what's going on medically and are willing to sit through thirty minutes of medical jargon and blood counts with chemistry panels thrown in for good measure. There are still others who want to know what's going on emotionally as well as physically. Then there are those who use it as the opening parry in a game of competitive woe.
I had that conversation yesterday with someone who has known me for my entire life. I love this person and understand that they have a very unique perspective of the world around them and their place in it. We don't always get along, but this is true of many long term relationships. She asked, "How are you?" Before I managed to get two words out she launched into the minutiae of every wrong done to her by a small coalition of people. 20 minutes went by before she paused for breath. 20 more elapsed before I realized that my cancer diagnosis was one of her woes. She wasn't upset that I had cancer. She was upset that the fact that I had cancer was happening to her.
I refuse to play the competitive sport that is "poor me." I cannot relate. If you want to compare notes for the sake of understanding how your illness relates to mine, I am there. If you want to pick my brain for what I know about leukemia, I welcome all inquiries. I want my experience with cancer to be informative to other people who may be overwhelmed by their own diagnosis. If you need help or a spare ear, I'm your girl.
Now, if you're going to use the fact that some latent genetic switch accidentally flipped on causing cellular anomalies and all around fun in the form of blood born cancer in my person as your personal cross to bear, then I have a problem. It's an unfortunate situation that I'm realizing happens more frequently than not to people diagnosed with a life altering illness. I'd be interested to know how other patients deal with it and the overall outcome.
The person to whom I referred earlier doesn't read the blog. I know for a fact that she's never touched a computer, so this isn't a direct message to any one person. I just felt that I needed to be honest about a residual issue related to my recovery. I don't think I'll ever be able to answer the question, "How are you?" adequately in an extemporaneous platform, and so I'll stick with the answer that I usually give. I'm fine.
The diaphragm issue isn't bothering me this week. I've been walking 30 minutes each day to combat osteopenia. It's been going well and I've been able to steadily increase my speed. I'm pretty confident that I'll start running next week and am excited to be able to join the ranks of PJ, Ronni, Susan, and Jim. I definitely won't be in the same class, as they are all serious runners and Jim is currently training for a marathon, but it feels good to look forward to doing something that I used to love doing. Since I still have issues with GvHD and heat, all of my running will be accomplished on a treadmill indoors.
Chris is doing well and staying busy with work. The cats have managed to stay out of the vet's office this week and are creeping closer to being buddies. I caught Etsuko grooming Akiko yesterday. Akiko tolerated it for a few minutes before it was time to wrestle. My brother got married on his birthday and started basic training for the Navy last week. It's been an eventful week on a personal front and I can say with all honesty that life is amazing and I really am doing fine.
Monday, October 5, 2009
Rash
Concerning the rash I mentioned in the last post, my doctor felt that it wasn't GvHD based on the burning sensation. Since she wasn't able to see it, she had to base the tentative diagnosis on my symptoms, which I don't think I did a very good job of describing. She was leaning more toward a fungal infection and prescribed an ointment accordingly.
The rash disappeared the day I heard from the team and I forgot to apply the ointment. Bad patient. I still tend to believe it was more related to GvHD than not, since I've been having skin flares since the prograf was reduced.
I have another appointment with my local oncologist this month to have a chemistry panel pulled. Aside from this, there's not much else going on.
The rash disappeared the day I heard from the team and I forgot to apply the ointment. Bad patient. I still tend to believe it was more related to GvHD than not, since I've been having skin flares since the prograf was reduced.
I have another appointment with my local oncologist this month to have a chemistry panel pulled. Aside from this, there's not much else going on.
Thursday, October 1, 2009
Just a recap
I keep starting and stopping this post, frustrated at my inability to collect and order my thoughts, so it's probably going to be a bumpy ride from here on out.
My transplant doctor reduced the amount of tacrolimus that I've been taking from 1mg a day to .5mg a day and I'm already starting to see the difference. My opening statement not withstanding, I've felt more capable on a mental level. I don't feel quite as slow as I did on the higher dose and I'm looking forward to getting off of the drug completely.
Since the immunosuppressant dose has been reduced, I've had a GvHD flare of the skin. The backs of my hands are fairly raw and red and look like they belong to an eighty year old woman. The texture is scaly and if I don't keep them constantly moisturized, they get really irritated and start to hurt.
A small rash appeared on top of my left foot Sunday night. It's a small patch no more than an inch and a half long of slightly raised red skin. If you apply pressure to the spot it feels like a minor bruise. When something brushes lightly against it, there's a burning sensation like someone is holding a flame too close to the skin. When I wear shoes that cover the spot, the burning sensation is constant. I've been applying cortisone cream to no avail. There hasn't been any change. I sent an email to the team and spoke to my nurse a short time ago. My doctor's out today, so I should know something tomorrow. It's a non-emergency, so I'm not worried.
Tuesday I started feeling queasy mid-day and by late afternoon I had vomited once. I haven't been feeling sick and I haven't been running a temperature. If you've been following the blog for a while, you'll remember the bout with PTLD(pre-lymphoma). Whenever I vomit for no discernible reason, I always worry that it might be coming back. This doesn't feel the same and I have to remind myself that I've had two CT scans in the last two months, so if something was going on, it would have shown up.
The same thing happened today. I don't feel unwell and I felt perfectly fine after I was sick. I'll let the team know and see what they want me to do. I suspect that I'll be seeing my local oncologist just to get looked over.
On a much more positive note, the pain in my chest has resolved. I can take a deep breath and only feel a slight tightness at the bottom of my rib cage. Yesterday, I got a case of hiccups and it was a very surreal moment when I realized that only the left side of my chest was fluttering. This leads me to believe that my doctor's suspicions are correct and that I do have a partially paralyzed diaphragm.
I'd like to thank everyone for weighing in on the chiropractor. I've really been thinking it over and after talking to a friend who's specializing in internal medicine and taking my doctor's reluctance in approving the move into account, I've decided to forgo it. In my mind, the cons outweigh the benefits.
I'll post when I hear from the team tomorrow.
My transplant doctor reduced the amount of tacrolimus that I've been taking from 1mg a day to .5mg a day and I'm already starting to see the difference. My opening statement not withstanding, I've felt more capable on a mental level. I don't feel quite as slow as I did on the higher dose and I'm looking forward to getting off of the drug completely.
Since the immunosuppressant dose has been reduced, I've had a GvHD flare of the skin. The backs of my hands are fairly raw and red and look like they belong to an eighty year old woman. The texture is scaly and if I don't keep them constantly moisturized, they get really irritated and start to hurt.
A small rash appeared on top of my left foot Sunday night. It's a small patch no more than an inch and a half long of slightly raised red skin. If you apply pressure to the spot it feels like a minor bruise. When something brushes lightly against it, there's a burning sensation like someone is holding a flame too close to the skin. When I wear shoes that cover the spot, the burning sensation is constant. I've been applying cortisone cream to no avail. There hasn't been any change. I sent an email to the team and spoke to my nurse a short time ago. My doctor's out today, so I should know something tomorrow. It's a non-emergency, so I'm not worried.
Tuesday I started feeling queasy mid-day and by late afternoon I had vomited once. I haven't been feeling sick and I haven't been running a temperature. If you've been following the blog for a while, you'll remember the bout with PTLD(pre-lymphoma). Whenever I vomit for no discernible reason, I always worry that it might be coming back. This doesn't feel the same and I have to remind myself that I've had two CT scans in the last two months, so if something was going on, it would have shown up.
The same thing happened today. I don't feel unwell and I felt perfectly fine after I was sick. I'll let the team know and see what they want me to do. I suspect that I'll be seeing my local oncologist just to get looked over.
On a much more positive note, the pain in my chest has resolved. I can take a deep breath and only feel a slight tightness at the bottom of my rib cage. Yesterday, I got a case of hiccups and it was a very surreal moment when I realized that only the left side of my chest was fluttering. This leads me to believe that my doctor's suspicions are correct and that I do have a partially paralyzed diaphragm.
I'd like to thank everyone for weighing in on the chiropractor. I've really been thinking it over and after talking to a friend who's specializing in internal medicine and taking my doctor's reluctance in approving the move into account, I've decided to forgo it. In my mind, the cons outweigh the benefits.
I'll post when I hear from the team tomorrow.
Saturday, September 26, 2009
CT scan
Sorry I didn't post last night, but it was late and I was really tired after the long drive from Houston.
I was told Wednesday that I would be having a CT scan with and without contrast, so I shouldn't have been surprised on Friday when the nurse presented me with a barium smoothie. I also shouldn't have been surprised to see a small bolus of barium when I went in to have the CT scan, since I was having a pelvic series done. If you don't know the significance of the bolus, don't worry about it. If you do, my sympathies.
Dr. K. called me while I was navigating Houston's rush hour traffic in a bid to get home. Lucky for me I was trapped in a school carpool lane at the time and wouldn't be going anywhere so long as the crossing guard had his way. The CT scan didn't show anything unusual.
This finding lead Dr. K. to theorize that my phrenic nerve has been partially paralyzed. This is the nerve that, for lack of a better description, coordinates the movement of the diaphragm. So, the right side of my diaphragm is stuck in the up position which is causing the pain when I breathe. There's nothing to be done for it and as far as I can glean, it's not life threatening.
I'll be going back to Houston in December for a three month check-up and we'll repeat x-rays, etc. to see what's going on with my diaphragm. The paralyzed phrenic nerve isn't a definitive diagnosis and anything could happen between now and then.
I was told Wednesday that I would be having a CT scan with and without contrast, so I shouldn't have been surprised on Friday when the nurse presented me with a barium smoothie. I also shouldn't have been surprised to see a small bolus of barium when I went in to have the CT scan, since I was having a pelvic series done. If you don't know the significance of the bolus, don't worry about it. If you do, my sympathies.
Dr. K. called me while I was navigating Houston's rush hour traffic in a bid to get home. Lucky for me I was trapped in a school carpool lane at the time and wouldn't be going anywhere so long as the crossing guard had his way. The CT scan didn't show anything unusual.
This finding lead Dr. K. to theorize that my phrenic nerve has been partially paralyzed. This is the nerve that, for lack of a better description, coordinates the movement of the diaphragm. So, the right side of my diaphragm is stuck in the up position which is causing the pain when I breathe. There's nothing to be done for it and as far as I can glean, it's not life threatening.
I'll be going back to Houston in December for a three month check-up and we'll repeat x-rays, etc. to see what's going on with my diaphragm. The paralyzed phrenic nerve isn't a definitive diagnosis and anything could happen between now and then.
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