Thursday, July 31, 2008

As scheduled, I saw Dr. Thomas today and overall, my numbers look good. My liver enzymes are still elevated, which means that I'm blogging from the comfort of the apartment. I still couldn't be admitted to receive chemo. Rather, I can't get another dose of l-asparaginase until my liver enzymes are sufficiently close to normal. I have another appointment on Tuesday. By then, I'm hopeful that all is well.

Chris is concerned with how this delay will impact my transplant time line. I have to be free and clear of chemo for a minimum of two weeks before I can receive conditioning chemo for the transplant. Since I'm a late bloomer where l-asparaginase is concerned, he's worried that my reaction to this little cocktail will compromise my ability to receive the really heavy stuff. I'm not going to sweat it until I really have to. My take on the whole thing is: what if I get to skip the second chemo altogether in favor of sliding past GO and on to free parking? No harm in hoping.

We just got back after a twelve hour day in the clinics. My 4pm transfusion didn't start until 7pm and since I was receiving two units of whole blood, I was at the mercy of the blood bank. Kids, if you haven't already, go donate. Every one is in short supply and I know of patients who have had to put off transfusions because the blood just wasn't available. You can make more and think of what you could be doing while you're donating. Reading, studying, napping, what have you. Even more of a bonus, you usually get juice and cookies. Just think about it.

I'm really tired, so I'm blathering. Off to make pillow imprints.

Tuesday, July 29, 2008

Something Ann forgot to add to her post...

Her platelets climbed to over 100 K/uL, specifically 139 today, which fulfills the final requirement for Ann to be in remission. So big Hurray! Now that we have that (and hope to hang on to it), plus the insurance approval all we need is the donor to test out healthy.
I have to admit that I was feeling a little lazy yesterday, so this morning I had to get up a little early to pack my bags for my upcoming hospital stay. We dutifully showed up for labs this morning and got a few happy surprises when we ran into old friends from the first time around.

We had a few hours to kill before our appointment with Dr. Thomas, so we ran errands within the giant compound that is MD Anderson, then settled down in the leukemia center for a bit of a wait.

I had assumed based on prior experiences that I'd be admitted sometime around 9 pm to start my next round of chemo. It would appear that I won't be admitted today, after all. My blood work came back a little wonky. Wonky, you ask? Yes, it's an antiquated medical term that's fallen out of fashion.

My liver enzymes are seven times as high as they should be. Dr. Thomas explained that it's probably drug related--more specifically, l-asparaginase related. I potentially could be one of those people who has a delayed reaction to it. The crux of the situation is that because I'm having this reaction, I can't have another dose of l-asparaginase until my liver numbers subside. Dr. Thomas gave me two options: 1) Go into the hospital today and start chemo, but skip a dose of l-asparaginase; 2) Wait until Thursday, and do some more blood work. Since I'm not a doctor and I have absolute confidence in Dr. Thomas, I threw the ball back into her court. She opted to keep me out of the hospital and wait until Thursday.

If my numbers are still elevated, she'll do a full workup to try and divine what's going on. I've promised not to snort Tylenol between now and then. If things start to subside, I'll be back in Thursday night to do round 2. It's not such a bad deal.

I'm off to finish knitting a baby gift for Caroline...because I have to start thinking of something for Heather. Congrats you guys!

Monday, July 28, 2008

In the prophetic words of Dr. Nick from the Simpsons, "Great news everybody..."

My insurance company just called to let me know that the transplant has been approved!

Sunday, July 27, 2008

That strange disconnect that happens when you get chemotherapy has finally emerged. There's a stutter between my brain and my body. I can't taste salt or pepper and everything has an unbearable sweetness. You already know about the digestive shut down.

Since I received vincristine with my first round of chemo, the neuropathy is back in my fingers. There's a light numbness that starts at my first knuckle. Dr. Thomas wants to hold off on the Lyrica for it, though. She feels that if it really isn't interfering with my day to day life, then I should try to avoid having to take one more medication. Fine by me.

I'm feeling just a little under the weather today. I'm sure it has something to do with the Enulose I'm taking. I'm also getting a little nauseated day by day. I think it's more psychological than anything. I know I'll be getting some crazy chemicals next week and I think it's affecting my disposition--not my attitude. I just don't like vomiting--who does--and it's making me a little cranky.

Friday, July 25, 2008

So, the inevitable happened. My digestive system shut down just like clock work. This happens every time I do chemo and it drives me absolutely crazy.

If it's not one extreme, it's the other. When I talked to Dr. Thomas about it yesterday, she got a little smile on her face and advised me to pull out the big guns. The Enulose was dutifully taken and I'm getting back on track. That's all you need to know about that. Aren't you glad you stopped in to look?

I'm finding that being a relapse patient is very different from doing this the first time around. When you're first diagnosed, you find yourself swirling in a welter of too much information, just trying to keep afloat. There's a hard edge of caution that taints everything that comes into contact with you. There are so many things that you can't do, and so few that you want to that it starts to grate.

The second time around, I'm finding things a little easier. My doctor has placed fewer restrictions on me. I'm not jumping in fear of children or plants. I'm allowed to eat more foods. Today, I managed to help Chris make gumbo, which I wouldn't have even tried the first time around. Chris is ensuring that I'm doing more for myself. Tomorrow, I plan on folding all of the laundry.

We don't have any appointments until Tuesday. How strange is that? A year ago, I was going into clinic every day. My numbers are holding and Dr. Thomas is pleased. I'll be re-admitted on Tuesday for my next round of chemo. Maybe, by then we'll have more news about my possible donor. God willing, it all works out.

Thursday, July 24, 2008

Practically Almost...

Long day today, and I'm drained so I'll try to be brief. Ann had two groups of tests today, one to determine if she was in remission and the other set to see if she was strong enough to undergo another transplant.

The transplant testing went like clock work. Her heart function is particularly strong. However, her lung function is only about 67% of what it should be. That's probably a combination of low hemoglobin from the previous weeks chemo and the cumulative effect of those same cytotoxic drugs. Bottom line is that she is strong enough to exceed the minimum standards that MDA has set for a transplant. So everything is good there....well almost. It is troubling to hear that the love of your life is operating with diminished lung capacity. That's a momentary concern though, because I know it will reverse itself once Ann begins to recover more.

Ann also had a BMB this morning to determine it the leukemia has been thoroughly thrashed. Later this afternoon when we meet with Dr. Thomas, she told us that the pathologist found 4% blasts in the specimen smear. That's good news, as its within the normal range of 0% - 5% blast cells that should be in healthy marrow. PCR and FISH tests are still pending on the biopsy sample, but considering those same results from last weeks BMB, Dr. Thomas doesn't anticipate any surprises there.

So is Ann in remission? Simple answer is "practically almost". MDA defines remission as a normal population of blasts in the marrow, an absolute neutrophil count over 1.5 K/uL and platelets over 100 K/uL. Ann got the first one, and the second, but her platelets were only 49 K/uL today. Dr. Thomas seemed extremely pleased with Ann's progress non-the-less. One of the antibiotics Ann is on right now is known to suppress platelets and she takes her last dose of that drug tonight. So Dr. Thomas thinks that Ann's platelets will have fully recovered by tomorrow or the next day. She did tell us that Monday or Tuesday Ann will be headed back to the hospital for round two of the enhanced H-CVAD protocol.

Hopefully after that it will be time for transplant.

Wednesday, July 23, 2008

Just signing in to report that there isn't anything going on. We have a big day of appointments tomorrow, so I'm sure Chris will be posting throughout the day.

Tuesday, July 22, 2008

MRD Negative

OK so we are back from our meeting with Dr. Thomas. I'm glad to say that we have some good news, that points to a good outlook on us being able to move forward. First a little back ground about bone marrow biopsies.

Each time Ann has a BMB done the marrow extracted is subjected to several tests. The first and "crudest" test is a direct examination of the cells in the marrow by a pathologist. This is called a smear, and it is in effect a simple count and categorization of the cells present under a microscope. I call it crude because it is impossible for a human to count or examine every cell taken in the sample.

Next is polymerase chain reaction (PCR) which seeks to amplify a single small piece of DNA from a large sample to the point that it can be easily spotted. In Ann's case a PCR test is trying to amplify the genetic signature that defines the leukemia. This is test has a better resolution than can be achieved by the human eye, but obviously can't be completed as quickly as looking at a slide on a microscope.

Finally there is fluorescent in situ hybridization (FISH) sometimes referred to as "fishing" by the medical staff. FISH takes fluorescent markers that are made from fragments of diseased DNA and then combined with fluorescent molecules, into a fluorescent probe. The BMB sample is dyed and combined with the fluorescent probe. If any of the cells in the sample are positive for the DNA being probed for they will turn up as glowing spots. The resolution of FISH falls somewhere between human eye examination and PCR, but it still takes a couple of days to prepare and finish.

Collectively theses tests are used to define the level of Minimal Residual Disease (MRD). Which means that over the 10,000 - 50,000 cells sampled collectively through the course of the tests performed, that they detect some number of leukemia cells. Its a ratio of disease present to health cells, which is why sometimes you see MRD expressed as a percentage (0.001% or 1% for example).

So we got the PCR and FISH tests back on Ann's BMB from last week and the results are 0% MRD or MRD Negative. Which means that the leukemia was susceptible to the chemo and we are headed to a probable remission on Thursday. I say "probable" because it will still have to be confirmed by a BMB Thursday. But this is a positive development and even our normally stoic leukemia doctor was smiling about it.

Thursday is gonna be a long, very stressful day.


Unfortunately Me and Ann's life-style (if you can call it that) has become intensely mobile so we are going to start taking full advantage of social networking software. So I'm happy to
announce that our blog is now a launch pad for Twitter!

For those of you who do not know Twitter is a web based program that allows people to enter a simple sentence explaining what they are doing. Then you can add Twitter feeds to you mobile phone, or iPhone (look for Twitterific through the iTunes app store). You can pass on these feeds to your friends and they can do the same for you.

Ann and I have taken the plunge so that friends and family can see what we are doing through the day. In fact if you notice the two new badges that I've added just under Ann's photo...those are Twitter feeds that you can check in on and we will update when we can't stop to do a full blog post.

If any of our readers are interested we would love to add you to our Twitter list of Twitter friends. If you want to head over to create a account (it's free and spamless), add us if you want to follow our us, then drop us a line and let us know what your Twitter name is and we will do the same.


Monday, July 21, 2008

The Way Ahead

Hello Everyone. We had our meeting with our transplant doctor this afternoon and now have a pretty detailed idea of what is being planned for Ann's second transplant. Not everything is set in stone yet, so a few of the details may change, hopefully not much though.

The plan is for Ann to have a second transplant, and this time they want to be much more aggressive than before, so Ann's next transplant will differ from her first in a couple of ways. First the source of stem cells will be a 9 out of 10 match (9/10) with a mismatch on the A antigen. Next they are planning a new preparatory chemo regime than the first one she had, and it will include additional chemo after the transplant. Finally the use of immune suppressants like cellcept and tacrolimus will be kept to a minimum this time around.

So what is this all going to accomplish? The 9/10 HLA-A mismatched marrow will be a fully formed adult immune system with a distinct memory. The mismatch should theoretically lead to more GvHD than she had in the first transplant. Unfortunately this can be a good and bad thing. More GvHD means (in theory) more anti-tumor effect, but it can also means that the transplant will be more dangerous. The new chemo regime is supposed to address this. Specifically the chemo (Cytoxan) that will be given a couple of days after the transplant is supposed to kill off some of the T-cells that could direct an immune response to Ann's organs and leave the ones in the bone marrow in place where they can still react to any lingering leukemia. Finally the reduction in initial immune suppressants means that the new immune system will "come out swinging". I'm sure that if if there is too much GvH then they will start to add immune suppressants to try to get things under control.

If this sounds rough and maybe dangerous, it is. To put things in perspective the relative danger of a run-away immune response is about a million times more dangerous than leukemia. GvH can be fatal in hours or days and leukemia in months. However, MDA really feels like they NEED to stomp on Ann's leukemia as hard as they can this time because it might be our last chance.

By the way, I did check and the 9/10 donor is the same one that turned up just a short time (days) before the last transplant a year ago. MDA did "activate" the donor then and they "demonstrated a willingness to donate", but because of the selection of the cords they where never called in for testing. So the donor will have to be contacted again and then go in for testing. I really, really hope with all of my heart that the donor is still willing and nothing turns up in the donor's work up that disqualifies them.

No problems with insurance yet. Ann is scheduled to start pre-transplant testing Thursday, so hopefully that is a sign that there will be none this time around. MDA wants to be able to do this transplant in roughly 6 weeks, and I'm not sure we can afford any delays this time.

Tomorrow we have our follow up with Dr. Thomas and she will have the gene studies back from Ann's BMB from last week. Hopefully we are still on track for remission and Ann's counts will have recovered sufficiently by Thursday for us to officially be there. Needless to say if Ann misses getting to remission it will jeopardize moving forward.

Thursday is going to be a very, very long day.

Sunday, July 20, 2008

I've been taking steroids since Thursday to protect my heart from all of the outpatient chemo that I've been receiving. I know that I have to have it, but taking 20 pills in one sitting everyday is starting to grind on me. These are in addition to all of the other pills that I have to take. The steroids are making me extremely high strung and jittery. The other morning I was zooming around the apartment and slipped on a patch of carpet, scraping my knee in the process.

Not good. With my platelets being so low and my immune system existing as a mere rumor, I could get into all sorts of trouble. Chris was a little upset to say the least. I've managed to make myself move more slowly in an effort not to kill myself in some horrendous household mishap, like stabbing myself with a stick of butter in a moment of inattention.

Another side effect to the whole steroid thing is that I'm absolutely exhausted from all of the activity, but I can not sleep. Over the course of 3 days, I managed a total of 7 hours cumulatively. I know this happens to most everyone taking this drug. Given my stubborn constitution, I thought I could tough it out, but I reached my breaking point yesterday.

While in lab reviews, I asked the nurse if he could give me something to sleep. He couldn't, but he did page my doctor to ask her to call something in. She was doing in patient rounds, but promised to email in an order. Four hours later, the pharmacy still didn't have anything. I think it had more to do with the weekend than anything else. By the time we left clinic, there was still no prescription. I was so sick of waiting around that I just decided to tough it out for another night.

Of course, it didn't hurt that I knew that Dixie and Chris's uncle Wayne were coming in with a lot of the things that we needed, including the rest of my medicines. One of these is an antiemetic that I'm allowed to have which has a side benefit of putting me to sleep.

Wayne and Dixie could only be here for a few hours, but it was so nice to see them. They brought extra clothes and all of the other things that we'll probably need for the next little bit. So here we are, settling in and hoping for the best.

I managed to get 7 hours of sleep last night and a nap today. I still feel like I could sleep for another 24 hours.

Tomorrow we have an appointment with my transplant doctor. I'm hoping for some good news, or at least an action plan that keeps up moving forward.

Saturday, July 19, 2008

Sorry We've Been Away

Sorry we've been out of pocket everyone. It's not that we don't enjoy the virtual company or that we have anything better to do, just that our internet connection was much more problematic than it was last time we were in Houston. Tonight I think I got the Comcast modem to behave so we should be able to post more frequently from now on.

Enough of that though, you have surfed over to check on us and see how things are going. So without further ado, I'm can say things haven't gotten worse and may have gotten better. I know that's not exactly ringing news. I guess the best way to characterize what is going on is that there seems to have been some progress, but it's hard to quantify it. You'll understand after I explain.

Thursday was a big day at clinic for us, as Ann was to get her 1st bone marrow biopsy post re-induction. The nature of the findings from the BMB are pretty critical to figuring out if the new chemo is working or not. So we set off early in the morning for blood work, labs, the BMB, more labs, lab reviews, a meeting with the Stem Cell Business Office, and finally a meeting with Dr. Thomas.

The results of the first labs and blood work are pretty pointless to go over right now. Not because I don't want to share with you, but because they are all mostly zero, zip, nada. This new chemo has pretty much destroyed all of Ann's cell counts, and her chemistry is also starting to get messed up too. So the minutia of the exact cell counts are beside the point at this moment.

What is of much more importance is the results of the BMB. We sort of found those out during our meeting with Dr. Thomas. I say sort of because I didn't get a copy of the actual counts from Ann's marrow and Deborah wasn't offering them to me anyway. However, she did describe Ann's marrow as "empty" which she noted was exactly what she wanted to see at this point.

"OK. So no blasts, no worries?" I asked.

"No Blasts. No Worries." She replied back to me with a snarky grin (I can't wait until her centrifugal pump or turbine breaks and needs an Engineer to fix it). She went on to point out that the gene studies are still pending from Ann's marrow. But because there wasn't anything in it but fat cells she really didn't think anything would turn up.

Does that mean Ann is in remission yet? No. Probable maybe. The soonest that be determined is apparently late next week, after the results of one more BMB is done. I can't wait. Each time Ann has one of those I feel like I'm gonna have a heart attack while waiting for the results.

As an aside Ann asked Dr. Thomas about some of the new chemo drugs she is getting this time around as we had done some research and found out a few are front-line therapy in France. We thought it was "interesting" and demonstrated we were engaged in understanding our treatment, but didn't expect the response we got. First Ann's mention actually left her Doc speechless, and for a moment you could see gears turning as she considered how to respond. Finally gave us a more detailed run down on the uses other centers are using for things like l-asparaginase (Ann's current favorite), then she outlined its role at MDA. Turns out that the protocol Ann is enduring right now is part of a brad new treatment for relapsed blood cancer that MDA has just started putting together. There seems to be a problem with keeping adult patients on it because it is very rough. I guess I would theorize that it is probably as intense as the pediatric chemo protocols are judging from our observations and Ann's first hand experience.

Dr. Thomas went on to say that she is very impressed with how well Ann is taking the chemo. The implication was that I think she was expecting to ave to slow down at this point, and was pleased at the results and that she didn't have to delay upcoming treatment for Ann to recover. I think Ann has a stamp on her somewhere that says "Actung Panzer"! I'm constantly amazed at the punishment she endures and how fast she bounces back or shrugs it off.

Next week is a big week. Ann is getting fast tracked back to BMT and I think MDA has already informed the inusrance company that they want to start a new donor search. In addition to the BMB late next week, we are meeting with Dr. Kebrieai again and starting pre-transplant testing (echo, spirometry, etc). That's a good sign because those tests are done to assure the insurance company that Ann is a good risk for a second transplant and to let the doctors know if her major organs are strong enough to make it through. More over it is a strong indicator that the invisible conveyor belt we are on is moving in the right direction.

I'm really hoping that next week brings really good news because I have come to hate this beard I'm growing. It's itchy, scratchy and driving me crazy. I'm really looking forward to shaving this thing off.

BTW I meet a real honest to goodness Astronaut today from the Atlantis STS- 122 mission. One hell of a nice guy. I'd share the details with you but I'm wiped out and need to try to sleep.

Thanks for keeping up with us.

Wednesday, July 16, 2008

I had a really nice surprise waiting for me yesterday when we came back to the apartment for a short break between appointments.

My friend Nancy had sent a package! I am a total package freak, it's true. I get excited about getting checks that I've ordered. It's so easy to keep me happy.

Inside I found a very sassy shirt that proclaims, "CANCER SUCKS". That's right, Cancer, you already know how I feel about you, but now the world can know that I have an attitude about it!

Thanks, Nancy!

I'll take a picture of it and hopefully will post it tomorrow.

Tuesday, July 15, 2008


We've been without a solid internet connection for some time now, so I have to apologize for the infrequency of posts.

Last week was patently horrible and I really didn't want to blog about it, but I feel honor bound to in the hopes that someone else going through something similar will benefit.

I ended my hospital stay last week with the worst lumbar puncture that I have ever experienced. It actually hurt so much that I started tearing up. That has never happened before. The APN performing the procedure refused to elevate the bed to a better height and ended up hunched over trying to get it right. She kept scraping my vertebrae which caused all of the pain. It was unbelievable and I let her know it hurt. That will be the last time she ever gets near me.

I've received the first round of modified Hyper-CVAD with the addition of l-asparaginase. The l-asparaginase is brutal. I got an extra dose of it as an outpatient on Thursday and will receive it again this Thursday. I vomited constantly from the moment I received it and couldn't stop for two more days. I ended up losing 5 pounds and getting dehydrated. The nausea has mostly abated, but I know it will be back with a vengeance with the next dose.

I've spent most of my time immobile or sleeping since the chemo has hit me a little harder this time around. I'm drinking 2-3 liters of fluid in order to stay as hydrated as possible. This has helped cut down on the number of infusions I have to receive.

The emergency room doctor elected not to keep me since my fever didn't qualify as a neutropenic fever. This means a sustained temperature of 100.5 for two hours. I was given multiple IV antibiotics and an oral antibiotic to take on the outside.

Dr. Thomas informed me that one of my cultures came back positive for a urinary tract infection. The same thing happened last year. She prescribed a new antibiotic today to take care of it. At least we now know why my temperature has been fluctuating so much.

I'm in good spirits overall, so don't think that just because I'm not blogging I'm down. I just can't get an internet connection on a reliable basis. We're hoping to have that resolved this Thursday. Fingers crossed.

Thank you for all the positive thoughts and prayers. I hope I'm putting them to good use. :)

Sunday, July 13, 2008

Tuesday, July 8, 2008

Settling In

I think I'm going to ditch the "Day X" start for each post. My brain is so scatter-shot worrying about other things that I'm having a fair amount of trouble remembering what day of the week it is much less how long we have been here. When Ann gets to her next transplant I'll pick it up again, but for now it's getting a rest.

On to today's news:

Ann is out of the hospital and we spent the majority of the day checking her out and moving to the charity apartment. That included buying groceries for an on-the-fly-easy-to-make-minimal-clean-up menu, picking up the essentials like thermometers and personal stuff we didn't leave Baton Rouge with cause who knew we would end up here again. However, I did find time to stop in at the Stem Cell Transplant office and talk to the business reps.

I made sure that they had a copy of our new insurance and let them know that our doctor expressed and interest in moving as fast as possible. The reps are going to get something called an EOC (Estimate of Charges) from the doctor and then send it straight to the insurance company so that they can release funds for a new donor search. I got the impression that these inital steps would not take long to do, but I don't have a specific time line for them.

The rest of our day was uppacking our few possessions, collecting receipts and trying to make ourselves comfortable (more or less) in foriegn surroundings. I have been managing to "borrow" a WiFi connection from someone in the apartment complex who doesn't know what a WEP key is. I feel a little bad about it as he/she is proably wondering why their internet connecton is so slow. But based on how WiFi works and the amount of transcievers packed into modern computers, I can't be the only one doing it either.

I have been getting a bunch of emails about the NTAF Fund. Let me take a moment to address them as well as the comments left here on the blog:

Yes, the NTAF account is still open. If you want to make a donation to help with medical expenses (prescription copays, over the counter meds MDA's pharmacy doesn't stock, insurance payments, etc) then you can follow the link on the blog (right sidebar near the big infinity, heart and gear symbol) and make a donation and it will be much appreciated. However, I'm grateful that you, loyal reader, found us interesting enough to merit the time out of your busy day it takes to read about, the hopes, love, fear and lives of people you have never met. I can't ask for anything more.

Thank you for letting us know we are not alone, that's more than generous.

Monday, July 7, 2008

Rough Outlines of a Plan

Day 7

We met with Dr. Kebriaei today and now have the rough outlines of a plan together. It's a six part plan with a few challenges along the way. We will have to get through each successfully get to the next step.

Step 1 (33% - 2 weeks remaining)
Get Ann into a stable remission. This basically re-induction chemo for a week, followed by a second round of steroids and chemo on the second week. Finally the last week is for observation and a bone marrow biopsy to check for leukemia in the marrow.

If remission is achieved then we move on to Step 2, if not then we will repeat Step 1 again.

Step 1a (2 Weeks)
On the assumption that Ann will attain remission, MDA will begin a new donor search. We are limited to either another Double CBT, or a 9/10 MUD. The doctors will conference and determine the best choice to emphasize the GvH/GvL effect.

Ann and I have both told Dr. Kebriaei that we would like to be as "rough" as possible, in the hopes that it leads to much better disease control than we got with the first two cords (e.g. lots more GvH).

Step 2 (2 Weeks for CBT or 6 weeks for 9/10 MUD)
Ann's chemo will continue through this step regardless of weather she is in remission. Stopping chemo could invite a relapse at this stage.

At this stage we should have a donor identified and once everyone (including us) are on board, then the donor will be activated. For a cord that means basically it gets thawed out. For a 9/10 MUD it means the donor gets a called and goes in for testing. Then if they don't have any problems (HIV, Hep C etc) that would prevent them from donating, they will either donate marrow or PBSC(s). Either will then be transported to MDA.

I think at this point me and Ann are leaning towards 9/10 MUD matches just for the added chance at a DLI (we had to fore go that this time because of the CBT - you can't get donor leukocytes from a umbilical cord), but we'll see how the recommendations come out.

Step 3 (2 weeks to 4 weeks)
Ann enters preconditioning for the BMT. Here once again we have asked that Dr. Kebriaei be as intense as possible. This is based on our belief that the harder we hit the disease when it's down the better our chances and the fact that Ann sailed through the pre-BMT conditioning last time. If we do have a 9/10 MUD the preconditioning will be different than the double CBT we did last year.

Then we are waiting for engraftement, which could take anything from 3 to 4 weeks.

Step 4 (10 weeks give or take)
During this period Ann will be monitored for GvH, and infections at the ATC clinic same as last time. The end of this time is the 100 day mark. After which we will be cleared to leave Houston and MDA behind.

Step 5 (Top Secret)
This step is under development...

Step 6 (the next 40 or 50 years)
Live the rest of our lives together and try to raise our adopted children to be smarter, better, and happier people than we are.

We have a big day tomorrow. Ann is scheduled to get out of the hospital and I have to go and meet with the charity apartment people. As last time we seem to have lucked out and an apartment has become available at the very last minute on the day Ann is due to get out of chemo. After that I need to go shopping and pick up supplies (food, toiletries, etc). We will also be picking up a ton of prescriptions, and that kills me. Ann has gone from taking 1 pill a day + supplement, back to what will probably be 20 or 30 a day.

Before I forget Dr. Kebriaei also gave us the official prognosis for another BMT...20% give or take about 9% (based on the NMDP data). At least it's not zero.

Sunday, July 6, 2008

Day 5

Some news to report today. Ann's peripheral blast count has fallen to 0% on her CBC from this morning. Still no word on what the spots are, everything from a bruise to sweet's syndrome to leukemia cutis is in the differential right now. Doctor Thomas doesn't seem too concerned with it, but she is more focused on reducing the leukemia burden than on a "skin condition".

Still no word back from the charity apartments, so we will be moving into a hotel probably for the next two or three weeks until the next round of chemo starts. Hopefully after that we will have more "permanent" living arrangements.

Tomorrow is the much anticipated meeting with our transplant doctor. I expect/require a fairly definitive explanation as to how this situation occurred and a comprehensive plan to both address it and prevent a recurrence in the future, or we'll fire her and move onto another doctor.

Friday, July 4, 2008

Strange Spots

Day 3

Here are the strange spots I was talking about at the end of the video...They scare the shit out of me.

A lovely surprise

Yesterday, the phone in my room rang and generally when this occurs, it's a wrong number. Not so on this day. A long time blog reader whom I've never met decided to take a chance and contact me. She lives about an hour outside of Houston and was headed this way and wanted to know if it would be okay to stop in and meet. Of course I said yes!

Linda and her husband just left a short while ago and they were such a treat. We talked about her niece who had gone through a similar situation with AML. Sadly, she passed away a few years ago due to complications from GvHD. We also talked about life in general and what our experiences have been so far. Linda is an absolute gem full of positive energy. Not to be outdone, Richard is a dear and a perfect foil for his spitfire wife.

I'm so glad she took a chance and reached out to us.

Chemo is going well and my white blood cell count has fallen from yesterday. I'll leave it to Chris to post numbers, etc. My platelets are also crashing, which we did expect. Strangely, though, my red blood cell count and hemoglobin are up above normal. I'm sure that this won't last, and quite frankly, I'd be really worried if it did.

I'm beginning to feel the leading edge of the chemo. I'm a little droopy and just feel a little off. This happened the last time around as well. I've begun a 24 hour drip of zofran to help offset the effects of all of the good stuff going in. I also had a lumbar puncture yesterday which went off well. At one point the needle scraped a vertebrae which was supremely unpleasant. I can't recommend it.

I just went for my first walk and managed 7 laps before my stomach started to hurt. This is another result of the chemo. Tomorrow I'll aim for 10 laps. I just don't want to fall as low as I did the first time around. Recouping most of my muscle mass was very difficult, and I never want to be that helpless again.

Last night was spent with a continuous parade of nurses and CNA's coming in and out to check my vitals and be sure that I wasn't having an allergic reaction to a new chemo drug. I think I managed a total of 4 hours of interrupted sleep in all. It'll be an early night tonight.

My appetite has fallen off a bit today. I've decided to go ahead and start supplementing with nutritional drinks just to keep my protein levels up. Last time around my body started cannibalizing my muscles because I wasn't getting enough protein. Hooray for evil tasting cake batter. I don't care what anyone says, the chocolate varieties all taste like sweet dirt. How would I know? I remember mud pies. Oh yes, I do and I bet you do too.

So, an end to my ramblings. I need to go catch up on the news of the day, such that it is. To all of my friends who have sent emails and haven't gotten responses. It's not because I haven't tried, it's because the connection here won't let me open the messages. I'm still trying. Don't give up on me.

Thursday, July 3, 2008

Look out Thunderbucket!

My nurse just started my pre-meds in anticipation of my first bag of chemo. I had just finished a robust dinner of brown meat on a bun--yummy, and taken my pills. Within seconds I was reaching for the everpresent bucket. Dinner reappeared in a new and liquid form.

The pre-meds were ones that I've had dozens of times before. A combination of zofran and a steroid. As soon as they hit my system, it was everyone for themselves.

As soon as I stopped throwing up I began to itch uncontrolaby from the neck down. I literally felt like an army of bugs was staking claim to me.

The nurses have never seen anything like this and we reassured them that this has never happened to me. The help with the sonic itching, I've been given a bag of benadryl. Sweet relief! Now only the big toe on my left foot itches. Of course, this now means that I'm ready for another nap thanks to the benadryl.

Chris suspects that DUC 8676 is fighting back. If he is, great. If he needs a road map to the cancer, just follow the flurescent chemicals to the marrow. You've been there once before, maybe you just lost your way.

Sitting before me in all of its golden splendor is a cup of Sporanox. I thought that I was done with this evil potion. Argh! I have to wait two hours after eating before I can take it. Since I threw everything up, I wonder if it matters. I'm going to take it and live dangerously.

I'll probably pass out in a few minutes. Chris may be tomorrow's blogger since I might feel a little wonky after a splendid cocktail of life prolonging chemo.
Sorry for the lateness of this post. I've been wheeled to every corner of this hospital having tests done to establish a base line for Dr. Thomas to work from. I had an echo cardiogram in which I saw the end of my catheter bouncing around in my heart. It was creepy to say the least and in addition to that, my heart looked like a clapping fetus from one angle. Creepy.

I had a lumbar puncture that finished up around 2:15 and since I'd been given a lovely bag of ativan prior to the procedure, I was inclined to sleep for the rest of the afternoon. That was my first dose of intrathecal chemo. I believe it was methyltrexate flavored.

The rest of the chemo should be coming up any time now. I think we're just waiting on the pharmacy. Since these doses are so much more potent than the first ones, I'm not sure of how I'll be feeling later.

Dinner just arrived. Something in brown sauce with a side of cream gravy, I believe.

Wednesday, July 2, 2008

Starting Over Again

Day 2

Side Note:

Little Wooden Boy M.D.

Call Hula Hula, or the King and get my number. I would like to talk to you again.
We could use another friend right now.

I saw my leukemia doctor a little while ago and she outlined a preliminary plan while test results are still pending. Let me reiterate: a lot of tests are still pending.

As it stands, it looks like this is a relapse. It's just presenting in a different way. A pathologist detected the t(4;11) translocation on my chromosomal test. This means that I will eventually have to have another transplant. We'll cross that road when we get to it.

Dr. Thomas wants to start chemotherapy tomorrow. I'll be doing a more intense version of Hyper-CVAD with the addition of one more carrying agent. I can't remember its name right now. I'm scheduled to get a new picc line put in my arm later today. This time around I was given the choice between a central line or a picc line. Not a hard decision.

I really appreciate all of the comments and the support. Don't count me out. I'll leave you with a funny anecdote my dad used to tell me about when I was a baby.

Years ago when we were living in Thailand and I was one or two I stopped breathing and started turning purple and blue. My terrified parents rushed me to the army base hospital . The staff doctor examined me and informed my dad that nothing was wrong with me. My dad was a blunt New Englander who wasn't afraid of confrontation. (Now you know where I get it from.) He insisted that the doctor check again. Begrudgingly, he did and returned with the same diagnosis. This time my dad cornered him and said, "Bullshit, check her again." The doctor checked me a third time and by now his hackles were up. He came out and confronted my dad, saying, "The only thing wrong with your kid is that she's an asshole. Now go home."

It turns out that I was holding my breath until I turned purple because I was throwing a tantrum. When I was out of sight of my parents and with the doctor, I breathed normally. Hehe.

Moral of the story is that I'm tenacious and as far as this cancer is concerned, it can kiss my purple bottom.
I have to clear something up from yesterday. Chris and I both misheard the doctor yesterday when he gave us blast percentages. I don't have 7% blasts in my marrow. I have 74%.

I'm waiting to see Dr. Thomas and will post when I know something more.

Tuesday, July 1, 2008

Breaking Dreams at the Point of Departure

Day 0

The clock is reset, and the world rushes backwards, undoing all progress fair and poor. The kingdom of disease is restored and hope for the future is dim. We have arrived at a point not very much unlike where we began our journey in 2007.

Each and every day since Ann first became sick I would routinely pray to Jesus for help, mercy, salvation, or whatever he was willing to provide. As a "good christian" God should look out for me and the ones I love, right? As if to answer that question we were handed a diagnosis for a new type of leukemia today. My faith and belief has collapsed into a unrecognizable heap and I don't feel like picking it up again.

I have had enough of prostrating myself and begging for what little mercy I think Ann and I deserve. I reject the notion of a creator with a grand plan for us. Things like cancer don't "happen for a reason", there is no "Grand Plan". Fame, fortune, sickness and health are not handed out based on virtue, need, suffering, or humility. All you have to do is turn on the news or watch some TV to prove that.

There is no anthropomorphic deity with a flowing gray beard looking down on us from the clouds. Conversely there is no red-guy with horns poking people with pitch forks and challenging them to fiddle contests. Neither of them is counting the number of things we do good or bad to determine what our future address is going to be afterlife. I reject all of it. Most of all I reject the notion of an all powerful and loving being who has decided his plan for us involves nothing but suffering and continuously breaking our dreams.

I know some of you will say "It's OK if you don't belive in God. He loves you anyway". Fine, I say, let him prove it. Sorry if I offended some of you in the audience.

On to more tangible business at hand:

Our house deal has officially collapsed. After the news hit today I called and withdrew from the contract. I hope the sellers do not sue me into completing the sale, or for penalties (about $35K). Ann will not be painting the back bedroom that nice shade of buff she liked so much. I will not be sealing the ceramic tile in the kitchen, or putting up my cast iron pot rack. Our new stainless steel side-by-side fridge has been returned to Home Depot. The movers have been called and they will not be moving all of our possessions out of storage.

Ann had a little garden planned for the side yard with ferns, hostas and coleus. There was going to be a nice gate with a nice shady place to sit and plently of roaming around space for a garden cat or two. Her pots will now remain empty and stored at Dixie's house.

Ann will not be going back to LSU this semester. She will not be able to start looking for a job and getting back to work like she so very much wanted to do.

Our three kitties Jay, Etsuko and Squeeze will have to do without us again. A very big thank you to Dixie for taking such good care of them.

Our plans for adoption and starting a family will now have to be shelved again. It will now be a minimum of 4 years before we can even begin thinking about it.

I have asked for a transfer from the Jacobs Engineering office in Baton Rouge to the one in Houston. I do not know if Houston has an open position or me or even if they have work to do.

Lastly I called and cancled the purchase of our new car. We were going to get a British Racing Green MINI Cooper with a white top named "Oliver", after the 1964 Opel Kadet in Top Gear with the same name. Oliver was due to be delivered in the middle of the month and had almost finished his trip across the Atlantic from the UK. Luckily, with gas prices the way they are now, I doubt the dealership will have trouble selling it.

In Medical News:

Ann is going back under the care of Dr. Deborah Thomas in the Leukemia Department. Stem Cell Transplant has offically dropped us like a hot potato. I guess that says just about everything you need to know about the situation. It looks grim.

We just saw Dr. Anderlini. I have not relapsed, but I have developed a new form of ALL related to my PTLD. I'm showing 7% blasts in my marrow and 31% in my blood. I don't quite know what to say since I didn't even know it was a possibility. I'm scheduled to see my leukemia doctor sometime today to get an idea of what the treatment will involve. There may be Rituxan, and there will definitely be chemotherapy.

That's all I know. I'll post more as I get more info. As for the house; we're going to have to break the contract since it looks like we'll be relocating to Houston once again. I don't know how long we'll have to be here and I don't know whether I'll still be considered a transplant patient. Like I said, I'll post more when I know something.