Wednesday, February 28, 2007
Well it is official, MD Anderson has exhausted Ann's list of Adult Unrelated Donors. After meeting with the transplant Doctor* today she confirmed that MDA has closed the door on finding any additional adult donors. Why? Because of the following reasons: Ann's cancer has a very high chance of relapsing in a more damaging and harder to control form sometime between now and when Ann finishes the Hyper CVAD chemotherapy, and the chance of finding a match in that brief amount of time is so small as to be practically impossible.
MDA is going to use Umbilical Cord Blood (UCB) instead. In fact they are going to use two cord blood units that they have already located (in the New York Blood Center I believe) and are just waiting for the insurance company to release the funds for them to be purchased. They want to use two cords because the issue with cord blood is the number of cells per body mass of the patient. Two cords that are genetically similar can be used to over come this problem and provide the same (or near same) number of stem cells for transplant as an adult donor would.
It also looks like Ann will be pulled off the Hyper CVAD chemo protocol soon. The Doctor expected that Ann would do one more round of Hyper CVAD starting in mid March and then after finishing it would be moved to the transplant protocol. That protocol would be two heavy duty does of chemo, much, much stronger than anything she has done before. I'm not sure if this would be followed by Radiation, but it looks likely. Only after all of this when all of Ann's natural bone marrow is dead will they introduce the new stem cells. No one has given us a time frame yet but the time frame for all this might be sometime as soon as early April.
So we have reached the turning point. Ann's odds are slightly less than the original 50% that the Doctor gave us the first time we met. But considering that with out cord blood Ann would have to depend on only chemo and that has only a 10% for a long term cure with her form of cancer, I think the choice to use a UCB transplant is the best we can do. There are some drawbacks to UCB transplants, mainly a longer time to engraft, and it's a relatively new procedure, but at least we have a little hope for the future.
It is disappointing having all of Ann's original 26 possible adult matches disappear. But thank God we live in a day and age in which we have at least the option of a cord transplant. If this had happened only 5 years ago then I might be saying "good bye" to my beautiful wife and best friend in the world.
Still Asians are underrepresented in the Nation marrow Donor Registry. Mixed Race Asians even more so, and if you are one then please know that there is someone out there that needs your help.
Approximately 10 people die of Acute Leukemia in the United States each day. Many of them for lack of having a viable marrow donor. You can help them. You can be someone's once in a life time miracle. Contact one of the organizations linked on the right side of the page, or the Red Cross and ask them how you can become a marrow donor.
* I forgot to get her permission to use her name in this blog. Got to remember to ask next time.
Today did not start out well. I woke up with massive amounts of bone pain. Normally, I have bone pain in one or two spots and it is manageable with my pain medications. This morning I had it in my femurs, knees, spine, hips, and ankles all at once. I generally only take one pain pill and maybe twice a day at it's worst. I had to max out on them this morning. I'm feeling better now, but I'm worried since I've resumed my neupogen shots. The neupogen stimulates my marrow, hence, bone pain.
I've been nauseated all day and didn't manage to keep down a banana. In addition to that, I can't keep my temperature up. Chris made me bundle up in bed, which was fine by me, since I feel so rotten. Top it all off with a stomach ache, and it's no school for me.
We have an appointment with the transplant doctor today. I'm pretty sure that we know that I didn't have any BMT matches. I've been reading articles on transplants and cord blood options to get ready. It's hard to decipher the trash from the fact. If you have minority friends, urge them to get HLA typed. It only takes a minute and they only have to do a cheek swab. There are too many people in need and not enough minorities registered. I had no idea that my ethnic background would have such a huge impact on my chances of getting a BMT. It's not one of the things you consider on a day to day basis.
I'll post the results of our visit when we get back this afternoon. Cross your fingers.
Tuesday, February 27, 2007
Sometimes I think the Doctors are getting off easy when we see them. For example we meet with our clinic Doctor today and the long and short of it was "Ann your doing good, and there are no problems and we will see you next time". You have to pinch yourself sometimes to remember that we are here because Ann is being treated for a cancer that could kill her in a matter of weeks.
It seems that Ann is something of a model patient. Apart from some stomach problems, a few aches and pains and the one major side effect to her eyes from the last round, she looks pretty good compared to some of the other patients. Still no infections, fevers or other complications. I guess it's a case of the squeaky wheel getting the grease.
Ann's blood work today looked pretty good. Her platelet count was the most impressive at 434 K/uL (Normal Range 300 - 450). That's the highest it has been since she was diagnosed in Baton Rouge. Her RBC count was 3.50 K/uL (a little low) and the WBC count was 3.6 K/uL (a little low too). Her hemoglobin was a little low as well, but anemia is natural in people with leukemia that have been through some chemo. So in short Ann's blood work looked good today, although the Doctor assures us that the positive numbers will start to disappear as the chemo from round three begin to take affect.
In the picture above Ann is trying to read a three year old magazine while we wait to go in for her 6th Lumbar puncture. Sorry we are running out of "action" shots to take pictures of at MDA.
I'm nervous about tomorrow however. We are scheduled to meet with Ann's transplant Doctor and I'm 100% certain that the main topic of discussion will be the problems finding an adult marrow donor. Based on the speed that MDA is moving through the preliminary donor list I'm sure that they have exhausted the last 4 potential donors that where on the list last week.
Which means tomorrow we will be discussing what other adult donors they might search for, and how long they continue to do it before deciding to use cord blood. For those of you who do not know Ann's cancer is classified as "High Risk" and is expected to relapse anywhere from 2 to 11 months from now. When the cancer relapses it may be drug resistant, which means chemo will be more difficult and less effective than it is being right now. If MDA is going to perform a Bone Marrow Transplant then they have to have an adult donor or donor material in hand sometime in this 2-11 month window of time before relapse.
Cord Blood is also by no means a "slam dunk". The material still has to be genetically matched (although less stringently than an adult donor) to Ann for it to work. And as the people at the stem cell clinic keep reminding me, Ann has a very unique genetic make up due to her Asian and Caucasian parents. Here is to hoping that the Transplant Doctor has something positive to tell us at least.
A nexus is the center or focus of something, the central action or decision that effects everything else that follows. It is the main link that attaches or associates all other actions. The BMT is the critical path or nexus that Ann's sucessful treatment turns on.
I will post more details tomorrow afternoon.
Monday, February 26, 2007
I discovered that I've developed some psychosomatic symptoms this last time in the hospital. I start to gag when I think of sporanox--you would too if you ever had to take it. I convinced Chris to taste some yesterday and he swears that the aftertaste is still there. I can't swallow pills like I used to. They get caught at the back of my throat and make me gag. This has never been a problem before. I really don't want to have to fight to take my medicine. I know that I need these things to give me the best chance possible to stay healthy. I just can't seem to convince my brain, though.
Another weird side effect, or what have you, is that I constantly crave red meat. I can't have a medium rare steak like I would love, but I can have roast beef sandwiches. I constantly want them. I wonder if it has anything to do with my low red blood cell counts. It makes an interesting argument for vampirism. When this is all done and I am well, I am going to eat the biggest steak that I can lay my hands on. No stinking vegetables, just meat, baby and maybe some butter. We'll see.
The tangy feeling is back. Prevention mouthwash helps a lot. I will forever be grateful to Heather for sending that one over. There's nothing like trying to eat when lemonhead warfare is going off in your mouth.
I finally got my Luperon shot. Menopause here I come. That's the funny thing about cancer. Your body goes through so many physical changes. You get the loss of muscle tone and chicken legs topped off by a mostly rounded doughy paunch to punctuate you're skinny butt. Add induced menopause and it's a Victoria's Secret swimsuit layout for the ages. I won't let this stop me from donning a bikini when Chris and I skip the country to avoid paying our medical bills. St. Croix, here we come.
Sunday, February 25, 2007
I'm out and back at the apartment driving Chris crazy. The steroids from this last round of chemo make me feel like I'm vibrating. I can't sleep and I can't sit still even though I'd like nothing more than to crash. Chris said that I had the same problem the last time I came out, but I can't remember.
No appointments tomorrow, but I do have a lumbar puncture on Tuesday, as well as an appointment with Dr. Thomas. We forgot to pick up my blood test results from the hospital today, so Chris has me on frozen dinners until he knows what my counts are. I cannot recommend the pork riblet dinner with potatoes and corn. It might have been pork, it may have been possum. I couldn't say.
I'm too jittery to type anything else, so I'll have to leave the rest up to Chris when he gets back from laundry duty. Sorry this post was so crazy.
Saturday, February 24, 2007
We are almost at the end of round three, Ann is on her last bag of chemo (a 24 hour drip) and we are scheduled to take her home sometime tomorrow afternoon. This round of chemo is the same set of drugs that Ann got on the very first night that she arrived at MDA. However the effect they are having on her is much more pronounced than the first time.
Ann's theory is that when she came into the hospital the 1st time she was already hyper-leukemic, and felt horrible. So any treatment was going to make her feel better. However since she has already had some chemo and was feeling "better" the reintroduction of the chemo drugs have just made her feel bad again which should clear up as the chemo leaves her system.
The main thing that is troubling her with this round of chemo is the nausea. It comes over her like clock work at around 9:00 pm and stays with her until the nursing staff gives her something for it through her IV or she throws up, which ever comes 1st. Usually the IV drugs have to be already hooked up and going into her an hour or two before she feels the first on set or are useless.
The last drug they are giving her today is Doxorubicin and it is used to damage the process of DNA replication when cells divide. It has a strange red color that makes it look exactly like brake fluid. It's side effects can include nausea, vomiting, heart arrhymeas, congestive heart failure and later in life cardiomyopathy. Lovely. Still in the log run it's preferable to cancer. Doxorubicin is currently being used experimentally to treat AIDS patients because it seems to have the same DNA damaging effect on HIV infected cells as it does on leukemia cells.
For those of you who are interested I have included a shot of Ann's IV tree and pumps. The Doxorubicin is the red stuff on the right. The other bags are saline, or anti-nausea, drugs. When she goes in to the hospital this is typically the number of bags that are hooked up to her and she has to be very careful moving around because they are all attached to the small CVC in her chest. That's only held in place by three stitches and could be pulled out pretty easily if she fell or rolled over in her sleep.
We are still waiting to here more news about the transplant. At this point I belive that MDA is most likely going to conclude the Adult Donor search and begin to focus on Cord Blood based on the risk of Ann's leukemia. I asked one of the Doctors and he said he believed that they might do the opposite, and continue the Hyper CVAD treatments until they are finished and then go to a transplant. That way they have 5 more months to search for a donor.
I have also contacted the AADP and A3M organizations in California and given them Ann's Uncle Loi's number so they can coordinate with Ann's family to help register more Asian marrow donors. The chances that they will find a donor for Ann is small but they might help someone else who is just as sick. Ann's friend Tina mentioned that there might be similar organizations in NYC and we might be able to reach out to them too.
Considering the expense of MDA and the Donor search, 5 more months could eat up all of our insurance. So I am starting to take steps now to try to avoid us having to make treatment decisions based on what we can and can't afford. The first is I applied of Louisiana Medicaid (more on this later), the second is I asked out existing insurance company to extend out coverage cap in exchange for a higher premium (no word on that yet, but I'm not holding my breath) and finally I have begun to look into non-profit fund raising.
Dealing with Louisiana Medicaid is infuriating! They actually told me that because we elected to come to MDA that they would not help us, because MDA is Texas not Louisiana. She also suggested that if I was in financial trouble that I could take Ann to Earl K. Long (Charity Hospital in Baton Rouge) and let them do the chemo and BMT! Earl Long has no record of treating leukemia or doing BMTs...incredible. The sad thing was that the woman I was speaking to was dead serious about us going there. I have never been ashamed to be a resident of Louisiana until now, and I can honestly say that me and Ann will have to think long and hard about be going back when this is all over.
I hope to have a web cam for Ann's laptop so that when she goes into the hospital for the next round, in about 2 weeks, then everyone can log in and talk to her on the Internet.
Friday, February 23, 2007
Well, I am definitely sick. We should get the test results of the nasal wash tomorrow, but I can tell you that I am ill. The signs are all there--sneezing, congestion, green mucous.
I'm back on Lasix today because it seems that I am retaining fluid. The staff is concerned that it will settle in my lungs and that would be very bad. I have to record how much liquid I take in and how much I eliminate every day. I managed to take in three liters of liquid yesterday, but I didn't put out nearly enough to compensate for it, which triggered the alarm bells. The day before that I took in 2 liters and the day before it was one liter. One liter is pretty normal for a healthy adult. I'm just an over achiever all around.
My Luperon shot should be coming today. We're taking bets on where they'll want to inject it. I'm holding out for the fattest part of me. Chris thinks it will be in the arm. Not my favorite place to get a shot. Cross your fingers and say a prayer that this will help in the long run.
I'm still throwing up, so the doctor is changing my nausea medicine. I hope it works. I've been vomiting like clock work at the same time everyday. I've lost the three pounds that I put on last week. I am still making myself eat, and Chris and the nursing staff are making sure that I'm eating most of what I order. The food service team even checks to see how much I've eaten. Like I've said before, everyone here is really great. I've only met two people who should be in a different line of business. Lucky for me, I haven't had to deal with them since the first time.
Sorry this post couldn't be more positive. The doctor says that I should be getting out on Sunday. I can't wait! I hope to have better news to post next time.
Thursday, February 22, 2007
Bad news everybody. I woke up with a bit of a sore throat and I'm completely congested. I'll be doing a nasal saline expression later. Those who have been keeping up with the blog remember that I've done this once before. They spray a shot of saline up a single nostril and make you blow it back out into a cup. Very pleasant. I don't know why people don't request this every time they go to the doctor. The funny thing about the test is that while they're shooting saline up your nose with a syringe they're telling you not to swallow. The first time I went through this test, I thought, "As if I would swallow this cold salty liquid mixing with my own snot." Turns out, your natural instinct is to swallow as soon as the syringe is depressed. Just a word of warning if you ever have to do one.
Although I've been through this round of chemo drugs before, I can honestly say that I'm feeling the effects a bit more strongly. I don't know if it's because I was feeling so well going in this time compared to the first time. I've started throwing up during treatment, which I didn't do the first time. Not fun. Maybe this means I won't throw up after treatment like I did the first time. The nursing and support staff are really nice. I don't get woken up as much during the night which is really nice. I usually get about three hours of sleep at a time before someone comes in to change my IV or draw blood. Early morning blood draws are interesting to say the least.
Chris looks a lot better today. He couldn't come yesterday because of his illness. He's taking precautions so that he doesn't make me worse. I keep telling him that it looks like I already have what he has, but he doesn't want to take a chance. It's hard being apart, but we're dealing with it.
A bit of happy news. I got a surprise care package on Monday. Our friend Dawn sent us a king cake from Gambinos. We ate half of it in a sitting before we realized that we hadn't taken a picture. Big thank you to Dawn--I put on three pounds :). Another big thank you to Susan and Fred, the lotion and lip balm were a godsend. I don't look like an orange crocodile anymore--and we finished the cake the same day--you probably were part of the three pound gain.
Had a call from Laren in New York today. She sounds happy and busy. I still think she, Tina, and Caroline need to hook up.
Really good news. I got the results of my lumbar puncture back and it was good. No sign of spinal or brain involvement. My platelet count jumped to 85 thousand on its own, which means if I'm cut, I can clot reasonably well. Not as well as you guys, but I don't have to worry about bleeding to death from a scratch. As my chemo progresses and even after, my counts will start to drop. This is to be expected since it means that the chemo is doing what it is supposed to.
I still haven't received my Luperon shot, but I'll ask about it later. I'll keep you posted. Chris is off to lunch, since we can't eat in the same room right now. I'm waiting for my lunch--grilled cheese and french fries. My appetite is non-existent, but I know I have to eat if I'm going to get out of here and back to harassing you guys!
Wednesday, February 21, 2007
I hate to do it but I have some bad news to report. Last night as Ann was being admitted into the hospital I started to get what I thought was a killer attack of hay fever. On the off chance that it was something other than allergies, I cut my visit with Ann short as soon as the Nurses had her situated in her new room.
On the way home I stopped and picked up some over the counter allergy meds. But they had as much effect on my symptoms as a mosquito trying to stop a 18 wheeler. Needless to say that by about 11:30 last night I was beginning to suspect that this was something other than allergies. That suspicion was confirmed this morning when I started a periodic and very productive cough. I jokingly call this "the Plague"
That's trouble for us. I mean I am happy it happened while Ann was not neutropenic and was being admitted to the hospital but, it sucks that for her own good I need to isolate myself from her. with any luck I will be able to get enough meds to knock this out by Sunday, which is when Ann is currently scheduled to be discharged.
This means that I will not be able to post any pictures of Ann until I get a "all clear" from the Doctors to be in the same room with her. However I did talk to her this morning. She said she is doing well and the attending physician on her floor was surprised to see her again so soon (he was the same one she had for round 2). Apparently everyone is surprised at how quickly Ann is progressing through the chemo.
If I can keep her infection free then I think we can continue to compress her treatment and leave only the minimum times between treatments. That should have the maximum effect on any remaining cancer cells and give us the best chance we can get for going into a BMT (as soon as a donor is located).
Ann also told me that she is having another LP today. It sucks that I will not be there to hold her hand while they insert the LP needle or inject the chemo. I have been there for all of them so far and being absent for this one feels like cheating.
I would like to take a moment to say a special thank you to Nancy Sakakura who has a blog at Nancysakakura.blogspot.com. Nancy had a similar blood cancer (MDS) that required a BMT, like Ann is going to have and she waited through 2.5 years to find a donor and is alive and well post transplant today. I can't tell you what an inspiration her story is to Ann and me. Nancy has also been kind enough to speak with us directly and is beautifully encouraging. If you have time please stop by her site and read about her experiences they are riveting.
More updates later today...
Today is not the day for good news.
While I was at MDA checking on Ann's schedule I ran into the Stem Cell Transplant Coordinator that is doing Ann's BMT search. I of course asked her how the search was going and she told me "not as well as I would like". It seems that of Ann's original 26 possible adult matches, only about 4 remain to be investigated. Most of the 22 have turned up as "not available" which could mean that they declined to donate, are dead, moved and can't be reach or may have caught a disease that prevents them from donating. Some of the 22 that could be reached are not a close enough genetic match to Ann to be used.
4 chances left is not much at all. It makes me sick to my stomach when I think it might come down to that!
From what they are telling me it looks like Ann may have to use umbilical cord blood (UCB) for her transplant. I only know the general details on how using a UCB would differ from an adult source. There is less chance of GvHD, but also less chance that the graft will take. However Ann is small so that may not be an issue. It's complex, lots of "ifs" and "maybes".
Is this horrible news? The answer is I don't know. It is disappointing, especially considering everything else that has gone on today. It would be nice for once, to have a simple problem, that does not require special procedures or searching for trade-offs. But I suppose that is the nature of cancer, everyone's is unique.
We have a meeting with the stem cell transplant Doctor sometime next week. I will post the details about what we hear about the transplant afterwards.
As a special plea to anyone reading this who is of Vietnamese/Chinese and Caucasian heritage. Please, Please, Please go and get marrow typed my Wife's life and many others depend on it!
All it takes is a swab of your cheek and 15 minutes of your time.
Please follow the links to one of the organizations and ask them what you need to do to be tested.
Asians for Miracle Marrow Matches
Asian American Donor Program
Tuesday, February 20, 2007
Here we are the at the start of the third round of chemo and I have some good news to report. Ann is feeling much better all the time and her abilities are improving incrementally, the best sign I have seen so far happened today when we left the clinic for lunch. If you have not been to MDA then you don't know how big the place really is. It's huge. Most of Ann's day is consumed at the Clark Clinic Building (the leukemia center is there) but there is another clinic, the Mays Building is a quarter of a mile away that is connected by a impressive sky bridge. Both clinics have independent cafeterias and as it happens Ann just happens to prefer the food at the Mays Building.
Monday, February 19, 2007
We have the day off from MDA and much of our time is going to be consumed by getting ready for Ann to go back into the hospital tomorrow or generally cleaning up. Not very exciting. So I have decided to make today's blog entry a bit more on the technical side. The Doctor's and Nurses at MDA all tease me for being an Engineer, but at least people don't hire Engineer's for "opinions" on wheather a building will stand up or a machine will work. Like Jackie Mason "I kid! I kid! You sumtz!"
WBC counts from the start of this event to her last blood test. So what we are really looking at is the rate of growth of the WBCs. Up until the 1st round of chemo all of the WBCs are cancerous so that portion of the curve represents the uncontrolled rate of growth of the leukemic cells. Everything after the 1st round of chemo is for the most part healthy WBCs.
What is interesting is the time period between the end of each round of chemo and the start of the recovery of Ann's WBC count. The time period between the 1st round the the start of recovery of healthy cells was 9 days. After the second round that number dropped to 5 days. This combined with our Doctor wanting to get Ann in early by a couple of day for round 3 indicates to me that Ann is presumptively doing well. At least as far as her recover from each round of chemo.
As I mentioned in another post we have meet people in the leukemia clinic who have had to have their treatments delayed because they got infections. Precisely because they couldn't get their WBC count to recover quickly enough. The added time between chemotherapy rounds allows more chance for secondary infection and gives the cancer breathing room.
The next graph is of Ann's cumulative RBC count from the point at which she entered MDA. As you can see from the graph the day she entered MDA she had no detectable RBCs (zero). The rate of growth of her RBCs from the start of round 1 is linear and it mainly due to the constant infusions she was receiving at the time. This generates a steep trend that is marked on the graph.
After round 1 was over the constant infusions of RBC units ended and the linear trend of RBC production dropped to the second linear trend line on the graph. Ann has had one or two RBC units transfused over this period but nothing as drastic as the first few nights in the hospital. Further the trend suggests that Ann is producing RBCs at a more or less steady pace, even factoring the effect of the chemo from round 2. Her overall RBC counts are still under what a adult female of her age should be by as much as approximately 15% but the growth curve trend is steady and positive.
The last graph is Ann cumulative Platelet count. When Ann entered MDA she had a Platelet count of 38 K/uL and they immediately began transfusions (along with RBC units). In fact the amount of Platelets in Ann's blood has been a on going concern by the the staff here because it dictates when she can have LPs. If Ann's Platelet count drops below 14 k/uL then she automatically goes to the transfusion unit.
Overall this graph is less clear, it indicates that Ann is making Platelets in the absence of chemo and transfusions. But they are also being consumed just as quickly. I would hypothesize that the effect of the chemo and damage to the body (bruising, ect) consumes large numbers of Platelets at a rate faster than Ann's body is able to produce them at this moment. And Platelets may just be particularly suspetable to chemo drugs.
So there you have it, probably a prime reason people don't go to Mechanical Engineer's for medical analysis. Still I am pleased that Ann's condition has rebounded quickly after each of the rounds of chemo she has had so far (apart from the Cytarabine side effect) and I dearly hope it continues to be that way. If that is any measure of success then Ann looks like she is doing better that some people we met who started treatment at the same time she did.
Sunday, February 18, 2007
Something exciting did happen last night. Around 10pm I heard water running in the apartment. I thought that I had forgotten to turn a faucet off and went off to investigate. I started in the bathroom and couldn't see any running water, so I naturally assumed that the toilet was running. As I walked over to investigate, I felt water falling onto my head. There was water streaming from the vent in the ceiling. Our upstairs neighbors left something running and weren't at home to do something about it. We were freaked out because we didn't know what the source of the water was--could have been the toilet, could have been the tub. The place we're staying at actually has maintenance on call 24/7. They contacted us immediately. The water stopped and we heard them stomping around upstairs. They wanted to come in to tear out the sheetrock in the ceiling, but they'll have to wait until I'm admitted into the hospital before they start any construction. It was a fun night.
Saturday, February 17, 2007
I had lab today and got some good news. Martha Stewart that I am, I made a platelet. A whole platelet! My platelet count on Thursday was 27 and today I was at 28. The reason that I'm excited about it is because my body is doing it on its own, not because of a transfusion. Chris, engineer that he is, has made graphs and rate curves of my progress. According to the graphs, it looks like I'm recovering from this round of chemo faster. We are nerds. You all knew that.
All of my other counts looked good, so I didn't need a transfusion. This was a relief, because some friends from Baton Rouge were coming for a visit. Susan and Fred got here around noon and it was wonderful to see them. I didn't get a chance to tell Susan before I went into the hospital and she's been on my mind a lot. They both looked great and it was a treat to get to visit. I got to see pictures of the grandbaby and I have to say, she is so beautiful it's hypnotic. We forgot to take pictures, so we had a professional sketch artist come up with something.
They are much more attractive in real life and don't have blue hair and skin. :) That's what you get when you pay an artist with candy.
On another note, I have a side effect from the chemo that I haven't really talked about. It started after the first round of chemo and it's not that noticeable unless you want me to fill out a form. Both of my hands have a fine tremor. When I'm tired, or when I've been pushing myself, the shakes get worse. I dread being presented with clinical forms because I have such a hard time holding a pen and writing. Combine the tremble with the fact that my fingertips are all numb. I can't really feel myself holding the pen and when I go to write it looks like a three year old got into the crayons. I had to develop a certain style of print for my college major in order to be able to letter plans and blueprints. Now I can barely sign my name. Chris had a hard time depositing a check for me because the signature didn't look like the one on file. This is one of the most frustrating parts of having to deal with my treatment. I've pretty much given up on writing. Chris, my sweet love, is nice enough to do the writing for me--because I make him! :)
A note for Chari: I heard that you are horribly ill and got sent home from work. Get better soon--because I said so. I hope you're feeling better. I'll give you a few more days to recoup before I pester you with phone calls. ;)~
I got a care package from my brother yesterday. It was filled with dvds and I can't wait to watch them. It will give me something to do in the hospital next week.
I have Sunday and Monday off, so I should be able to finish season one of Heroes. How did I miss this show? It's brilliant! I'm talking total mind candy. Chris keeps urging me to make a reference to an inside joke involving Arrested Development. I don't think most everyone would get it, so I'm reserving judgement for now. If anything comes up, I'll post it. Chris will probably be doing most of the updating for the next week since I'll be in lock up. Maybe I'll get my mind right and the man will let me out. Cool hand Luke ref. But seriously, maybe I'll get a real toilet for good behavior. There are only so many times you can pretend to be camping.
Friday, February 16, 2007
Today was a bit of a unusual day for us, MDA had no appointments and their were only a minimum number of housekeeping chores (laundry, cooking & dishes) for me to take care. Ann's vision continues to get better though she still needs the steroid drops. She spent most of the day watching TV shows she downloaded from iTunes. Normally I despise Apple/iPods/iTunes by default and would use other means to get TV shows online but, we have enough bad karma right now. So being legal can't possibly hurt in that department.
Two shows have caught her eye so far: Ugly Betty and Heroes. She is enjoying Heroes particularly. This is a good thing considering that both shows have compete seasons available on iTunes, it means that she will have lots of entertainment. Which is actually pretty important for her right now. So much so that I may need to look into getting a larger drive for her laptop to store more shows on.
However sitting and watching TV with her is just a reminder that Ann can't leave the apartment because of the effect of the chemo. Even with her WBC count up it can be risky for her to be around people who may be harboring some bug that will take her weeks to fight off. That in turn could delay her next scheduled round of chemo, while the infection is brought under control and in turn give the cancer a chance to reassert itself.
Ultimately it means that Ann's world has telescoped down from being able to walk out of the front door of our 2 bedroom house and go anywhere at all, to being able to safely exist only in a one bedroom apartment or in the MDA clinic and hospital complex. This disease has cost her freedom and independence. Even with a BMT that may never change.
Tomorrow we have blood and lab work int he morning. If Ann's counts are down then we will most likely spend the rest of the day in the transfusion clinic getting blood or platelets. I'm betting on platelets as they seem to be the portion of Ann;s blood that is slowest to recover after chemo. After which we'll begin getting ready for the start of round 3 on Tuesday.
Thursday, February 15, 2007
Ann was right today was another long day. Principally because of the unreasonable wait at the Opthamologist's office. I think we waited over 4 hours just to be seen for a cumulative total of 15 minutes or so. I could rant but that particular office seems to be overwhelmed at MDA and until Ann experienced it 1st hand we were ignorant of the possible side effects of chemo on the eyes. God news is that Ann's eyes continue to recover.
The highlight of the day was the meeting with our leukemia clinic Doctor. Up until now I have been hesitant to identify any MDA employee by name to protect their privacy. However today we asked our Doctor if she would mind and she said it would be ok.
So here is a picture of the woman who I have placed all my faith in saving my Wife's life. Her name is Dr. Thomas and she is, from what I understand the primary authority on ALL at MDA. She is a very straight forward and no nonsense professional. Although our conversations do not often run very long or drift to subjects other than cancer, she does display a good sense of humor. Ann likes her a lot.
Dr. Thomas did tell Ann today that she is doing well and could stop taking Neupogen again and another of her favorite meds named Sporanox. We have talked about the Neupogen injections already and the bone pain that results from them, so Ann is happy about that. What we have not talked about is the anti-fungal med Sporanox. Ann says it tastes like concentrated evil and it messes with her liver chemistry. She is estatic that she can take a break from it. At least until she goes in for round 3 of the chemo.
That's all I can think of for tonight that Ann didn't already cover in her update. It looks like we don't have any appointments tomorrow so Ann can rest up before going in for round 3.
I was told today that I would be going back into the hospital on 2/20 for another round of chemo. The same drugs that were used in my first round will be used this time. The doctor said that patients usually tolerate it better the second time around. This isn't the one that did a number on my eyes and I am thankful.
We did see the opthamalogist today. The appointment was at 10am and I was really worried about missing it. Turns out that we rushed down there for no reason at all. We waited for 4 hours before being seen. Poor Chris was working on 2 hours of sleep and I thought he was going to keel over before we got out of there. I'm happy to report that he's having a nap right now. The doctor was pleased with my progress and reduced the number of times that I have to have the steroid drops. It's down to 4 times a day in both eyes and I don't have to have the antibiotic drops in my left eye anymore. My eyesight continues to improve, but I was told of an interesting phenomena today. The oral steroids that I had to take for the last round of chemo could have affected the shape of the lens in my eyes. My left eye is 20/20, but my right eye is pooh. I have a hard time single the single enormous E on the eye chart. I know what it is because I've done the chart before, but it's a crazy feeling not to be able to see it clearly.
The nurse told me that my eyesight would fluctuate as the steroid leaves my system and that I shouldn't worry for now. The doctor confirmed this. I still can't make out things that are more than 6 feet away. I can see shapes, but I can't read print. Lucky for everyone that I'm not driving right now. I could also be nearsighted after all is said and done. I have a follow up appointment in March, so I should know something.
The social worker that works in the gynecological department had some info and articles for me today. I haven't gotten a chance to look at it yet, but she said that it was a good source for people going through treatment who are worried about fertility.
I'm sorry to say that the nausea returned today. I didn't manage to keep lunch down, but that could be because of the crazy cab driver. Houston is a viscious city for traffic.
I cannot believe, I almost forgot! My leukemia doctor said that I'm not neutropenic anymore, so I can start eating fresh food again. I'll have to make the most of this because I'll revert after the chemo. It's amazing how much you want a food you never liked at all until someone says you absolutely cannot have it.
That's all for now. I hope everyone is doing well and had a nice Valentine's day.
Wednesday, February 14, 2007
Happy Valentine's Day to everyone out there. We're sending out hugs to everyone.
This means there are fewer days until Mardi Gras and that means another year without king cake. I know they celebrate Mardi Gras in Galveston, but I still haven't seen a king cake. Since the nutritionist told me that I should eat whatever I feel like I can within reason, I don't worry about the carbs. Enough of my love affair with king cakes.
Yesterday, when we arrived home from the hospital, it was close to 9PM. When we walked through the door, we found a Valentine's gift basket on our kitchen table along with a fedex package from the group Asians For Mircle Marrow Matches who may be able to help find a marrow donor. Our first thought was, "Who would break in to leave a present?" Nothing was missing, but our apartment complex doesn't just let themselves in without prior notice. We checked with them today just to be sure and they told us that it was probably the church group that owns the apartment. If it was, that was very nice and we owe them a "Thank you."
Today we saw the gynecologist. This was a first for Chris. He handled it very well, but as an engineer he was fascinated by the equipment in the room. I guess girls are just used to seeing it. The whole point of the visit was to discuss the future possibility of having children. Chemotherapy renders 50% of patients infertile after treatment. Recipients of a bone marrow transplant are almost guaranteed that they will be infertile. The chemo for a bone marrow transplant is so much more intense than a regular regimen. It's just one of those things that you have to live with.
The doctor was very nice and very forthcoming. Normally, people go in before starting treatment to have eggs harvested or to have invitro in order to freeze an embryo. Because of the nature of my cancer, I had to start treatment immediately. We did ask my leukemia doctor about preserving eggs during our first visit and she told us that we didn't have time and that treatment would start that day.
The gynecologist told me that I was a puzzle since I was in the middle of treatment. She's setting us up with a fertility specialist at Baylor to discuss options. There is one treatment that she mentioned that involves me getting an injection monthly to make my body think that it is in menopause. The idea is that metabolic functions of the ovaries would be slowed to the point that they wouldn't be as affected by the chemotherapy. It's not a guarantee, but it is an option.
Another option that was mentioned was a bit different. They remove one of your ovaries and freeze it for after you complete treatment. The thought is that they'll be able to preserve follicles. After treatment the ovary is implanted back into your body, but not in it's original position. It seems that they put it in your arm. I would feel like I had to wear arm guards and PPE to be sure it didn't get damaged. It's a strange idea for me to wrap my head around. Whatever it takes.
My eyesight continues to improve. One thing that does worry me is that I was farsighted and have a prescription for reading glasses. Since my eyes opened on Tuesday I've noticed that I can read print just fine without my glasses, but I can't read print from a distance like I used to be able to. I'm hoping that my eyes just got lazy during their little vacation. I'll talk to the opthamalogist tomorrow (or will I?). My leukemia appointment is at 9:40 and my eye appointment is at 10. I don't feel like I can miss another eye appointment.
I did promise a post on the chicken legs. All of my life I have had chubby legs. I'm not just saying it. People who have seen my baby pictures know it's true. To get pants that fit my thighs meant that the waist was too big. It was just a fact of life. Since my diagnosis, my weight has been fluctuating. Overall, I've lost 15 pounds. Some weeks I lose a few more pounds, some weeks I put on a few. Anyhow, leukemia is the worst diet ever. I've lost muscle mass everywhere. When viewed from behind, my butt looks like two saltines attached to pretzels. My thighs no longer overlap--girls, you know what I'm talking about, and my calves are much smaller. They are truly chicken legs. The upside is that I can finally wear track suits without worrying that my thighs look big. The downside is carrying two 20 ounce sodas gives me the shakes. I'll be seeing a physical therapist before all of this is done.
The good news in all of this is that after receiving multiple bags of blood and platelets, I feel much better. I was able to walk all day without a wheelchair. I find that the more I walk, the better I feel about everything. It gives me something closer to normal. My hair has started to fall out again which is a relief. It's weird being partially bald. My appetite is closer to normal. I'm sure that there are other good things that I am forgetting.
Big hugs and kisses to everyone. We miss you all very much. 35 days behind us. We're that much closer to coming home. :)
Tuesday, February 13, 2007
A) I can't believe the insurance company and that's all I can say without using expletives.
B) The walks with the IV pole are because of the Lasik. It makes you have to go potty, alot--really alot. It's surreal.
C) We have been at MDA for twelve hours and counting. Still waiting for my transfusions to finish.
Big thank you to Tina for the link on magnesium rich foods. Chris seriously made me sit and eat cashews.
There is a new side effect to report. The backs of my hands have started to bruise (my fingernails too) and the skin between my fingers and under my nails is starting to peel off. It's like when you have a sunburn. The PA said it was normal, so we're not supposed to be worried. I will never be able to live out my dream of becoming a hand model like my hero George Costanza.
My vision continues to improve. I have gotten more stares for wearing the sunglasses than the bald head. Go figure. The light still bothers me, but not as much. I had to miss my appointment with the opthamalogist because of the surprise transfusion. I've been hooked up to the IV since 11AM and am still hooked up as of 7PM. We've rescheduled for Thursday. I'm not sure that we'll make that one either because of the way things are going so far.
If anything else happens, we'll post it. ;)
We started off with an early day today at MDA, 7:00 am blood work followed by 8:00 am lab review of the results. For some reason MDA is unusually busy today. Really really busy. There were so many people a the clinic this morning that they failed to give Ann all the orders for all of her blood work. Although we didn't find that out until later.
When we did get into the lab review we found out some good news. Ann's last LP came back negative again for cancer in her central nervous system! That makes all the LPs negative for leukemia and we are both very encouraged by it.
Ann's WBC count was up to 2.6 K/uL today (good). While her platelets were down to 10 K/uL (very bad). RBC count was at a 2.76 K/uL (also bad) and her magnesium was down again. I had resolved to get Ann to snack on cashew nuts (thanks for the link Tina) but they have not kicked in yet. So back to the transfusion unit we went for 2 units of platelets, 2 units of irradiated red blood, magnesium, Benadryl, Lasik and vitamin D.
The up side is that Ann is feeling good enough to actually walk around on her own for the 1st time since we got here. She turned down the wheel chair when we got to MDA this morning and insisted on walking at a nice steady pace with me where ever we had to go. This extended to the transfusion clinic when she took a couple of small walks with her IV tree and pumps.
While Ann is int he infusion clinic the blood/chemo is injected into one of the main arteries going into her heart by way of her CVC. While it creeps me out to look at and I live in constant fear that it will get infected, the staff assures me that it is the simplest and easiest way to infuse liquids into her.
As you can see in the picture left it is made up of two tube or "lumens" with in-line clamps (the red things). Each lumen is capped off with a sort of one way valve that allows medicine it enter and prevents her blood coming out. Trust me it looks even creepier without the dressing on.
The only good things about spending the day in the transfusion clinic is that Ann gets lunch free, we get to watch some cable TV and the nurses all just love Ann to bits.
I have started talking to some marrow donor recruitment programs (see links on the side of the page) and asked them if they would like to use Ann in their drives. The answer has been an enthusiastic "yes". I hope that it will increase the number of potential matches Ann has to draw from when the time to select a donor comes. But even if it doesn't I hope that maybe someone else will benefit from a person reading about Ann's story and being moved enough to become a donor themselves.
The BMT clinic called today and let us know that the insurance company has denied Ann the use of a drug called Rutuxan after her future transplant because they consider its use with ALL to be "experimental". The Insurance company had told me as much yesterday when I spoke to them on the phone but now our BMT Doctor at MDA says differently.
So on one hand the insurance company has released the funds for high resolution matching but has denied a drug that our Doctor feels is necessary to treat the remaining cancer cells after the transplant takes place. For those of you who want to know Rutuxan is a genetically engineered human antibody that is tailored to boost the immune system. For more information go to http://www.rxlist.com/cgi/generic/ritux.htm.
MDA is doing an appeal and I need to claim down and remember that there is months between now and any future transplant. And I know who I need to talk to if MDA's appeal fails.
Monday, February 12, 2007
Ok, there's good news and there's not so good news.
My eyes popped open in the shower today. It was a very big surprise. Chris has just inserted a thermometer into my ear and the temperature is normal. He'll probably take my temperature again just to be sure. He did. He's doing it a third time. Now I have to do the oral thermometer because the second and third reading were a little above normal. Bare with me.
All done and the next three were normal.
Now, back to the eyes...I can't read yet, because it stresses my eyes to focus on small print. I apologize for the extra mistakes in advance. My vision is otherwise clear. I am still light sensitive and this probably has to do with a combination of the chemical damage and the fact that my eyes were closed for so long. Anyhow, I am grateful to be able to see again. Let's all hope that this lasts. I have an appointment with the opthamologist tomorrow. Small world, she's from Baton Rouge.
The not so good news is that as my counts crash, so does my energy level. I woke up feeling run down today. As the day progressed, it got worse. I have a small headache which could have something to do with my eyes and my appetite is gone again. If I push too hard to eat, I get nauseated. My hands have been continuously shaky today and I had to take a nap. I haven't had to do that in a while. I have blood work scheduled tomorrow morning. Chris thinks that I'll have to have a transfusion. I think he might be right.
My eyes are starting to really bother me, so I have to cut this short. I will let everyone know what the doctor says about my eyes.
Before I forget, the ugly part is actually quite funny. My eyebrows have started falling out. Actually, they were falling out the entire time I couldn't see, so I was very surprised to see that the left one has a bald patch and looks like a pencil thin mustache. The right eyebrow is actually falling out rather nicely. It just looks like I had it waxed. Go figure. I'll let them come out naturally, which probably means that I'll have on eyebrow for a while. :)
Sunday, February 11, 2007
Reached summit of Kilimanjaro...had to eat the Sherpas and burned Dr. Hastlingford for warmth...
Just joking :)
Its day four and I still can't see. I did discover yesterday by accident that if someone surprises me my right eye pops open. This only lasts for about 10 seconds but, that seems promising. I'm still having problems opening my left eye. But when I get my steroid drops my vision is clear. That's good news I suppose.
The Doctor keeps telling me that I am magnesium deficient. I take two supplements a day and receive magnesium by IV every time I get a transfusion. I asked a nurse yesterday what foods I could incorporate that were magnesium rich, and she didn't have a clue. Chris looked it up and it turns out that one of the foods that I have been craving is a good source of magnesium. Take that Atkins potatoes are your friends.
I have been passing the time by listening to books on tape that Chris has downloaded onto my MP3 player. They make the day go by. You really take for granted the passing of the day when you can see. I have absolutely no idea what time it is until Chris tells me it's time to eat or take medicine. I'm really hoping that my eyes heal quickly so that I can go back to being normal.
Food is beginning to frustrate me. Because I can't see what I'm eating. I also have a hard time with the proximity of the food to my mouth. I usually end up hitting my face with it. It's hard to find foods that I can comfortably eat in public. I tried to eat waffle fries from Chik-Fil-A yesterday and almost couldn't manage it. The chicken sandwich was a disaster, since the chicken kept sliding out of the bun and I couldn't see it to fix it. At this point the only thing that I can comfortably manage is a slice of pizza or a peanut butter and jelly sandwich.
I would really like to be able to see.
On a positive note I feel like I did before I was diagnosed. Even though my counts are down I have more energy than I have since this has started.
I received a care package from Mrs. Gilbert's 8th Grade Class the other day. They all wrote letters that were very sweet and made me smile. It's nice to know that there are such great kids out there. I need to send them a thank you card unfortunately I can't see to write it. I hope that they don't mind it being a little late. It honestly was one of the best gifts and I am thankful.
Poor Chris is having to type all of this so I am going to give him a break. I'll keep you posted.
(Dictated by Ann to Chris)
Saturday, February 10, 2007
Those of you who are not fans of Star Wars (the one that came out in 1977) will be confused by the title of today's post. Its a line of dialogue between Alec Guinness and a Stromtrooper looking for C-3PO and R2 D2. It's also an inside joke between me and Ann because of all the gear she has to wear to go out in public now. Dark UV shades for her eyes, a face mask to protect against infection, and hat to prevent sunburn while her skin is artificially sensitive to light. In short she looks like a Stormtrooper.
Ok on a more serious note, another day down. Nothing special about day 31 other than it's a prime number.
True to form what started out as a supposedly light day at MDA of a blood draw and review (about 2hrs in duration) turned in to a all day affair. The blood work showed that Ann's platelets were dangerously low (14 K/uL), which we knew was going to happen because of the last round of chemo. Her magnesium was also very low and her WBC count was down from 6.2 K/ul two days ago to 0.2 K/uL today!
As an aside I am glad I went and got checked out yesterday before I saw that number. Basically Ann could catch anything right now and would have zero immune response to it.
So she was whisked off to get a transfusion which ate up pretty much the rest of the day from lunch time to around 5pm. The transfusion doesn't take that long but getting platelets from the blood bank takes time. They need to be match carefully to avoid giving the recipient a bad reaction.
This time Ann had one, not bad, but she complained of itching and felt like she needed to scratch all over. Luckily this passed. I think of it as a preview of GvHD (Graft vs. Host Disease) which Ann is likely to develop in some form or another after a bone marrow transplant.
The worst part about this whole episode with Ann's eyes is that she has finally gotten the energy to walk around and wants to do some exercise. She wants to keep her leg muscles in tone. But now she can't see anything and again has to be pushed around in a wheelchair. It's remarkable that her attitude is still as up-beat as it is.
We have been here long enough to have met some people in the leukemia clinic who have just given up or are very close to it and it is very scary. I think it's all the love of the people who are wishing her well that keeps her focused, positive and motivated to beat this. Please let Ann know you are pulling for her.
Thank you all.
Friday, February 9, 2007
Devotees of this blog will note that I promised more updates yesterday and then failed to post them. The reason is that Ann has officially run afoul of her first major complication to her chemo treatment. The culprit is Cytarabine and was one of the two drugs used in the last round of chemo.
The side affect Ann is going through is called Cytarabine Toxicity and as you can see from the picture it has done a number on her eyes. It started after I finished yesterday's blog post. Ann started complaining of red eyes and trouble with lots and lots of tears. It only got worse from there on.
Ann thought after consultation with her Nurse that the cause of the problem was the steroid drops that she was taking. Wrong! Lesson learned: Ask your Doctor before you stop taking any medications while undergoing chemo. As it turns out the steroids were to prevent the very situation that was now occurring.
When we got in to see her Doctor yesterday it took all of thirty seconds for her Doctor to notice the problem and send Ann directly to the Opthamologist. By the time we actually got in to see the Opthamologist, due to a long wait, Ann's eyes had completely swollen and tears where streaming out of them continuously.
Ann is particularly reactive to Cytarabine, more reactive than the staff at MDA has seen in years. So from yesterday at lunch time Ann has had her eyes swollen shut and is functionally blind. The Opthamologist says that this will last for days or maybe longer than a month.
Of course throughout all this Ann still had to meet her appointments yesterday. One of which included a lumbar puncture...again. She did he a hefty dose of Adavan which helped with the eye pain, but also knocked her out cold. The PAs doing the LP did tell me that the last LP she had in the hospital turned out negative! Hooray!
We did have Sloppy Joe night but the enjoyment of it was somewhat diminished as Sloppy Joes are not the selected food of choice for the blind. However Ann said she really enjoyed the food though and I was really happy to see her eat with something closer to her old appetite.
That wraps up the events of yesterday and brings us to today's events.
This morning Ann woke me up after having trapped herself in the corner. Not being able to see she had missed the door to the bathroom and got stuck in the corner of the bedroom. Her eyes had continued to swell overn night (even with a cold compress on them) and she was incapable of opening her eyes at all.
After seeing this we when back to MDA to have Ann's eyes evaluated again. The new Opthamologist discovered a scratch on Ann's cornea of her left eye(2mm x 1mm) and changed type of drops that we were putting in her eyes again. This time he added a antibacterial drop to the steroid and cream we were prescribed yesterday. I have to pry Ann's eyes apart with both hands to get enough room to put any of these in. To boot I have to do it in a lit room so I don't bump her eye with the applicator and I can't even begin to tell you how much pain this puts Ann in.
The final event of the day involves me and not Ann. Yesterday I noticed a sore spot inside of my neck, like a pulled muscle near my adams apple. In fact I took it for a muscle pain because of having to twist my head to put my back pack (holding Ann's supplies and records) throughout the day. Well today it got on my nerves so much that I decided to have it checked out on the off chance it was a infection.
We hear so many stories from the other leukemia patients here about their problems with small infections that quickly got out of hand that I am completely paranoid. I think I wash my hands 30 or 40 times a day. So I found a clinic near the apartment and after explaining I was taking sole care of a chemo patient, I got in to see a Doctor right away.
She felt my throat and said I have a enlarged lymph node with some post nasal drip in the back of my throat. Of course when she said "enlarged lymph node" I had to suppress a twinge of panic. Ann's first symptom of leukemia was after all enlarged lymph nodes (although hers were not painful and she had more of them and much much larger). Of course I blurted this out to the Doctor...
She told me not to worry and completely understood. It's hard not to walk around all day every day in a place like MDA and see some of the things I have seen here with out being just a little bit paranoid of any symptom of even a simple illness. She diagnosed me with Lymphadenitis , took a swab for strep and gave me some giant antibiotics to take twice a day. I gobbled the pills right out of the bottle as soon as I got them from Wallgreens.
I hope I don't get sick. If I get sick I will not be able to be around Ann or she will get very very sick. Plus she can't see right now and can't even get around the apartment on her own.
Jesus, please don't let me get sick right now.
Ann says "Being blind sucks! One the up side I feel like my old self and I'm not tired. Expect for the blindness I'd feel normal."