Friday, June 29, 2007

Some Pretty Good News!

Day +30 (D 168)



Fantastic news today! It seems that Ann is doing so good that her Doctor decided it was not only same for her to get the weekend off from the SCT clinic visits, but also for her to stop coming to the clinic every day of the week. Until future notice we will be going to clinic three times a week. She will still need to get her IV fluids on the days that we are not there, but they have made arrangements to give them to her in the intermate pumps ( "baby bottles" ) or by a portable Gemstar Pump.

They doctor and nurses again reinforced how well they think Ann is doing to allow her the extra slack in the tether that connects her to MDA. Most patients don't get this opportunity until much, much later on. Some as late as past their 100 day mark. Needless to say this has raised my cautiously optimistic meter another notch.

In other news today Ann had her BMA (Bone Marrow Aspiration) that will form the basis of her first chimerism study. Part of the marrow collected will be flown out to a lab in California for the chimerism test, which is to see exactly "who" makes up the marrow sample: Ann, Cord A or Cord B. The other part of the sample will remain at MDA for molecular testing to try to detect any residual leukemia. We have been through that before before the transplant and they have all come back negative. Also the doctor isn't worried about it because Ann was transplanted in remission with less than 3% blasts and no molecular evidence of leukemia. So the chances that any will turn up now seems to be extremely remote.

Her counts look pretty good: WBC 4.9 K/uL and ANC 3.87 K/uL. Because the ANC is still above 2.5 we will also get to skip neupogene over the weekend. It turns out that the new cord cells are very, very responsive to neupogene. Any hint of the stuff and Ann's counts jump up a point or two. File that under good news as well. I guess Ann's virtual "cookies and juice boxes" are working on the baby stem cells after all.

Tomorrow we get to sleep in for the first time in many, many weeks and we are both really looking forward to it.

Thursday, June 28, 2007

Prime Time Part Deux

Day +29 (Day 167)

Today has been yet another really long day. I started out at the diagnostic clinic at 7am for a blood draw and it was a zoo. We were filing into the rooms 6 at a time and as soon as a few people were processed, several more were called in to take their places. The phlebotomists didn't miss a beat. Between patients they teased each other in a friendly manner.

Chris and I were surprised at the results of my blood work. My white blood cell count was 5.9 and my absolute neutrophil count was 4.7. This is yet again in the normal range. Go figure. I did get one neupogen shot yesterday, but we didn't think that it would spur my new cells into action so quickly. The APN didn't seem to be phased by this. She reminded us that the numbers would continue to fluctuate. I know it's still too early for me to be able to manage this amount of growth without the help of neupogen. Since my ANC was over 2.5, I get to skip the neupogen tonight. I'm guessing that my numbers will start to decline tomorrow or the next day. My hemoglobin was 7.4, so I had to get red blood cells. I've been getting really tired very easily over the past two days, so this was no surprise. We were in clinic until after 4pm.

I continue to retain fluids, but my medical team doesn't seem too worried. I got a small dose of lasiks two days ago, but this didn't help. They monitor my weight daily to gauge my fluid retention. Because Chris and I are both science nerds, we figured out that I'm retaining a little over a gallon of fluid. This makes my fat pants very uncomfortable and my face is very round. My doctor once let me go until I had retained over 10 pounds of fluid, before giving me lasiks. I sincerely hope that this won't be the case this time. I am pretty close to 10 pounds over weight, though.

Laren left for New York this morning. I really loved having her here. It was nice to have another girl to chat with and it doesn't hurt that she has a wicked sense of humor. She also kept me on the straight and narrow with exercise and hydration. Chris has his work cut out for him now that Laren has raised the bar. :) (In defense of my wonderful husband, he has been amazing during this entire ordeal and I couldn't be luckier to have him to love.)

I have another really long day tomorrow including a bone marrow biopsy. You'll hear all about it.

Wednesday, June 27, 2007

Not Ready For Prime Time

Day +28 (Day 166)

Ann counts today and yesterday have been dropping from the high points they achieved two days ago. Today's WBC count was 2.5 K/uL and the ANC was 1.85 K/uL. Whats the reason? Neupogene...aka G-CSF (Growth - Colony Stimulating Factor). We had been taking neupogene every day since before she was discharged from the hospital back on day +12. We where ordered to stop taking it on day +25 when her ANC advanced above 2.5 K/uL.

The 300 mg/day shot has been stimulating her new stem cells into action and from today's blood test results it's clear that they are still too immature to be a head lining act just yet. So today we are starting the neupogene shots again. Ann will proably be on it and off it periodically with diminishing frequency, until Ann's counts reach equilibrium.

I spotted a small, for lack of a better word, "blotch" on Ann's stomach and thought it might be early onset of GvH. After we altered the PA to it, she was pretty skeptical that it was, but cautioned us to keep an eye on it. GvH is like wildfire and it can spring up suddenly and disappear just as fast. Despite this MDA has reduced Ann's level of the anti-rejection meds prograf and cell-cept.

The nurses are still very positive about Ann's progress. I guess they have all gotten used to how good she looks and how much energy she has, despite their expectations for the performance of a CBT. It's still no surprise to me. I have spent the last 13 years deeply in love with her and I know how tough she is.

Monday, June 25, 2007

Making Progress

Day +26 (D 164)





Hello everyone, I have some good news. Ann's counts have jumped up to normal levels as you can tell from the above embedded charts. Her WBC and ANC count reached the normal range for an adult human being for the first time today, and she has been taken off of neupogene until further notice. Hurray!

Most of the doctors, PA and nurses we ask about our relative progress continue to express skepticism about cord blood engrafting so quickly. Patients are normally at day +40 or +50 at the point we are at now. I'm not going to jump to conclusions as Ann might be an outlying data point. But it would be really great if the expanding technique that was used for Ann transplant really help give lots of people chances they wouldn't have had before. A doctor acquaintance (not from MDA) is expecting SCT to be an exciting feild to be in based on our experience.

Tomorrow Ann will be starting the CMV study and there is no word on weather we will be getting mabavivar(sp) or a placebo. However, MDA is going to be drawing extra blood each week and doing a high resolution molecular study to look for any occurrence of CMV. The benefit of which should be that we get a very early warning of the virus if it shows up. Which means we will have a chance to treat it early before it reaches the point that it might endanger Ann's new cell graft.

Tomorrow is more of the same, clinic visits, IV Fluids and more magnesium, but we are making progress.

Sunday, June 24, 2007

Lazy Sunday

Day +25 (D 163)

People keep asking me how it feels to be out of the hospital. I'm grateful not to be trapped on the 11th floor in the BMT ward anymore, but it's hard to let go of some of the habits that I developed there. I wake up every two to four hours expecting my nurse to come in and change my IV fluids or a CNA to come in to take my vital signs. Then I realize that I'm not in the hospital and try to go back to sleep. I also have to resist the urge to report how often I go to the bathroom. I actually had to keep a record of how often I went and how much there was for the nurses.

We have clinic visits every day. This means that for between four and six hours, I'm hooked up to an IV pump, receiving fluids and medicines. It's like being in the hospital all over again.

Today my appointment was for 7am. I had a blood draw, then I got hooked up to receive some magnesium and electrolytes. It's important that I stay hydrated to keep my kidneys healthy. I'm retaining about four pounds of fluid. I'm hoping that I can have something done about that tomorrow. It's making finding pants that fit hard. In addition to receiving magnesium at the clinic, I also have to take a large supplement, and when I'm at home, I have to get hooked up to a magnesium intermate. The immuno-suppresive drugs that I'm on leach magnesium out of the body. It makes it very difficult for me to maintain regular levels.

My white blood cell count is 3.6. My WBC count dropped yesterday, which scared me a bit. I've been reassured that this was expected. My counts will flip flop for quite some time. Today's numbers were a significant increase. My absolute neutrophil count is above 2, which is great. When it reaches 2.5 and stays there, I can stop getting the neupogen shots. My red blood cell count continues to drop, but at a slow rate. I'm encouraged by this. I know I'll have to get a blood transfusion this week.

All things considered, I feel well. I still get tired very easily and have to have a nap. I usually sneak it in while I'm at clinic. I'm staying positive and know that we're looking at the home stretch. I've been warned that it could be a few years before my immune system is able to cope with the outside world. I'll have to continue to wear a mask around crowds and wash my hands compulsively.

We're waiting for signs of GVHD. I get checked daily by the APN at the clinic. She's looking for a rash. I have to be on the look out for GI problems like uncontrollable vomiting. So far so good.

Thursday, June 21, 2007

Wednesday, June 20, 2007

Small Degrees of Freedom

Day +21 (D 159)

This is going to be an uncharacteristically short, but we are both tired and have to get up for labs early in the morning.

Ann got discharged from the hospital today and walked out under her own power. She was so proud, and was smiling from ear to ear behind her mask.

Her labs look good and both her WBC count and ANC continue to rise towards normal levels.

Tonight she gets to engage in some small freedoms like eating something not from the hospital menu, sleeping in a real bed and not being woken up every 4 hours.

Tomorrow we start our new daily routine at MDA with hope for a brighter future.

Tuesday, June 19, 2007

Breaking out

Day +20 (D 158)

It's been 31 days since I was first admitted to the hospital and that's pretty good for a cord blood transplant according to everyone. I've been very lucky in that I haven't presented an infection and only had one fever because of some medication. I did have a few bad days last week, but the nurse said that that was normal, so all in all, I'm normal. The doctor did say that I engrafted early for a SCT, so I hope that bodes well for future recipients of expanded cord blood.

I get to go back to the apartment tomorrow. I can't wait! Laren and Chris spent the day disinfecting the entire apartment. My new immune system is pretty fragile, so I have to be very careful about what and who I'm exposed to. No plants, no pets, no children, no crowds, no sick people. I have to keep wearing my mask out in public, when I can go out, but I don't have to wear gloves anymore. I can't wait to sleep in a bed that doesn't have safety rails attached. The hospital bed also makes a strange growling noise when you shift positions on it.

I'm so excited about getting out, I doubt that I'll sleep tonight. I can't wait!

Monday, June 18, 2007

Engrafted...Hurray!!!

Day +19 (Day 157)

It's official, Ann's new stem cells have engrafted! She has maintained a Absolute Neutrophil Count (ANC) above 0.5 K/uL for the last three days, and her WBC count has continued to climb. Today it's at 1.6 K/uL. Thats not normal yet, but it's continually improving.

On a side note my mathematical model turned out to be wrong. Not by much but still wrong. My prediction had Ann's WBC count reaching 1.0 K.uL on the 20th. Also I estimated the cell doubling time to be around 13 hours. Turns out it is closer to 10 hours. Oh well live and learn.

The Doctor who visited us this morning told us that we should get ready to leave the hospital for our apartment Wednesday. Ann is excited to be leaving, and to be having the transplant going so well. As was pointed out by the doctor again, she is the star of the transplant floor. They where really expecting her to have a much rougher ride than she has.

All I can say is hurray! I hope that this proves that expanded cord blood is a good idea and it opens this treatment up to lots of other patients that need stem cell/bone marrow transplants who can't find a matching donor. Personally I believe that this is something that should be considered as a standard of care for patients who are out of options. I have told this to my representatives in the U.S. House and Senate. I hope they were serious when they said they would act on it, because a lot of Americans just like Ann have died waiting for their second chance.

The question of "where things go from here?" has been raised so I want to take a moment to address it. About 60% of all transplant related mortalities occur in the first 100 days after transplant. These are from infections, GvHD (Graft vs. Host Disease), relapse, or miscellaneous complications. So patients in the first 100 days here at MDA are watched very closely. Each and every day they have to report to the clinic building early int he morning and spend almost the entire day in isolation, getting IV fluids, antibiotics, and other medicines. Then they are allowed to go "home" and sleep in their beds before coming back again in the morning.

We are only on day +19 and have another 81 days to go before we are out of the 100 days. So I'm definitely of two minds when it comes to Ann being released. part of me is excited and happy and the other is terrified that something might happen and I won't be able to get her back to the hospital in time. After speaking with the nurses it turns out that this is actually pretty common. Lots of patients and caregivers (I fecking* hate that word ) suddenly turn up "sick" just before they are due to get out [*Father Ted ref]. Of course this subterfuge is pretty transparent to the people who have access to the results of daily blood tests.

Ann doesn't have any of these reservations and is more than ready to get out of here. I really hope that the next 81 days go as well as the last 19.

Friday, June 15, 2007

Thursday, June 14, 2007

x(t) = x0*exp(k*t)

Day +15 (D 153)

I'd like to start off today's blog with a bit of a rant about Google. I know that blogger is technically a "open beta", which means that the software is continuously evolving...but come on! They had a perfectly simple way of uploading photos and integrating them with text. Apparently it was just too easy so they decided to change it, I guess just to see who can keep up. My Father has often uttered the vilest insults at Microsoft whenever they introduced a new version of Windows or Excel, and I always found it a bit on the amusing side. I guess today is my day for payback, or perhaps my level of patience with software is just not what it used to be...

...Picasa sucks.

Anyway, you are probably wondering what the heck the title of today's blog post is right? It's a mathematical expression of exponential growth as a function of time. It basically means that over a period of time a population will expand according to its growth constant (k), initial population (x0) and the amount of time (t) it grows.

I spent some time working out a very simple growth model for Ann's new white cells with a few basic assumptions. x0 = 0.1 K/uL, r=14 hours, k=ln(1+r/100) and t ranging from 0 to 500 hours. I was going to publish the really neat chart from Excel and compare it to Ann's actual counts but no such luck (thanks Google). Everyone will just have to use their imaginations.

The model is not perfect because it doesn't accurately predict the lifespan of a white blood cell. However, I think it's good enough to give me an educated guess as to how long it will take to get Ann's WBC count up to 1.0 K/uL. The magic date for which will be on or around 6/20/07 according to my calcs.

Now that I have bored almost everyone but the engineers and scientists in our audience to tears I'll recap the events of today.

Without either of us knowing it Ann has gathered quite a following here. According to the visiting physician, Ann is the "star of the floor". Meaning that Ann's counts are recovering much faster than they expected after a cord blood transplant. The general thinking is that this is because she is part of the expanded arm of the transplant study. The quick response is most likely the cells that where nucleated prior to transplant.

These nucleated cells should be more mature than the ones harvested directly from the cords. So they will have be able to colonize Ann's bones more quickly and provide immune coverage while the two plain cords take hold and grow to maturity. Ann based on today's blood results I would have to say it appears to be working. Ann's WBC count was at 0.5 K/uL and her RBC count didn't fall for the first time in a week.

In non medical news we got word today that we will have to move out of the apartment we have been staying at. The church charity we have been renting from has been absolutely great, but our lease was limited to 6 months total and it runs out in July. Luckily I managed to find a newly renovated place that is a comparable price and actually closer to MDA. On the down side we will have to furnish it, but I think we can do that with a trip or two to target and maybe the salvation army.

Hopefully I will get Google's Picasa working and we will be able to post pictures again.

Wednesday, June 13, 2007

Double Trouble

Day +14 (D 152)

I know we usually post late in the day, but I couldn't resist. Hehe, my white blood cell count was 0.4 today. Hooray! I'm still cranky from lack of sleep, but otherwise, I feel great for a transplant patient. Chris and I were wondering in the white blood cells multiply linearly, or exponentially. We'll know for certain tomorrow when my next set of numbers come in. Or, Caroline, you could get Stuart on the case and put us out of our misery. :) Wanda Thibodeaux, you too. More to come later.

Tuesday, June 12, 2007

Monday, June 11, 2007

0.2

Day +12 (D 150)

I'm twelve days out from my transplant and everyone assures me that I'm doing well. The doctors continue to caution me that it will be a little while before my counts start coming up. I've been walking and using my foot bike inorder to keep my heart healthy and to avoid pneumonia. One of my nurses told me that I'll spike a fever before I get out of here. I already took care of that with the rabbit ATG.

We got my blood results late this morning and there were a few interesting anomalies. My WBC is 0.2. This means that I made a white blood cell. My doctor cautioned me that this could be a misread, but if it isn't, then I made a 100% improvement. My hemoglobin also came up, as did my red blood cell count. Chris wondered if I was dehydrated when the blood was drawn. We learned that being dehydrated is the same as reducing a sauce. The more dry you are, the higher your numbers will appear. I'm being cautiously optimistic. I understand that the results could be an anomaly and that tomorrow I'll be back to a WBC count of 0.1. I'll try not to be disappointed if that's the case.

For the moment, I choose to believe that the stem cells are settling into my bones and doing what they're supposed to. The bone pain continues, but it's not so bad. The bone pain means that I'm making cells, so I'll tolerate as much pain as I have to. I have more energy than I've had in a while and my appetite is getting better.

If I really did make one white blood cell, then I can make more. This doesn't mean that I've engrafted, but I'm on my way.

Sunday, June 10, 2007

Just another day

Day +11 (D 149)

It literally has been just another day. More tests, and more walks, and more medicines. I have the routine memorized. My counts remain low, but I did not need any transfusions today. I feel like a broken record.

The head of transplants is now my doctor for the next few days. He's the first doctor to tell me that my type of transplant takes the longest to engraft. Everyone else has been dancing around the subject. I can help speed things along by exercising, but this might only shave a few days off. The doctor always sounds optimistic about my case, which I suppose is reassuring.

I'm chomping at the bit to get out of here. I can also say that mauve and teal are definitely my least favorite colors. I'm tempted to get someone to smuggle paint into my room so that I can obliterate the despicable colors. You have to be a complete sadist to be a commercial decorator. How can someone put such horrible combinations together and then throw florals on top of it? Hospital rooms are supposed to be restful. At least you can turn the lights off. :)

As Chris pointed out in an earlier blog, I just need to be patient. We had an interesting conversation about Kung Fu today. Chris tried to draw a correlation between himself and Caine. Nothing doing. When we broke it all down, it turned out that I was more suited to being Caine than Caine was. I'll just spend the next few days learning to snatch the pebble out of Master Khan's hand.

Saturday, June 9, 2007

"Patience Grasshopper..."

Day +10 (D 148)

Sometimes its really difficult finding a theme for a blog post when we have days like today, when almost nothing happened. I don't mean that literally. I mean me and Ann where not frozen in carbonite throughout the duration of the day, just nothing of substantial note actually occurred.

I have written over the last several days about Ann's WBC count being 0.1 K/uL, having bone pain and her needing occasional transfusions. Check, for all of those today. How often can you write what seems like the same thing over and over? I know we have to wait for the stem cells to do their job and work their way all the way to the end of the homeopathic cascade before they get to be white blood cells, but it's frustrating for both of us.

Ahh...I appear to have unwittingly uncovered the theme of today's blog post with out realizing it. Oh curse you creative writing!

My lovely wife has pointed out that I am something of a cultural drift net so all this talk of waiting and being frustrated has apparently sparked a memory from my childhood of watching David Carradine on Kung Fu. I can still see Caine standing in front of the venerable Master Khan asking when he can leave the temple. To which the response was "When you can take the pebble from my hand, it will be time for you to leave".

The lesson is of course that patience is required for anything worth accomplishing. Of course what Masters Khan and Po forgot to tell Caine was that you also need love. The more the better because it helps fill the dark, scary and lonely places and gives you hope while you learn to wait patiently.

Funny, I was never a big fan of Kung Fu and alway considered it more than slightly stereotypical. I suppose I just never appreciated it's philosophical elements...go figure.

Friday, June 8, 2007

Too much medication

D +9 (D 147)

I have a special request of everyone. Since my first diagnosis, Chris and I have made several friends through our blog. Joe and Karen are two of those friends. Joe was diagnosed with MDS(precursor to leukemia) last year and had a transplant in January. As of this week, his transplant is failing, meaning that he'll probably have to have another one. He's been fighting infections throughout this and I can't help thinking that he's been through so much already. Joe and Karen are a great couple and they have so much ahead of them. Please say a prayer for them.

I continue to have odd flashes of bone pain all over my body. The pain usually occurs in a joint or a long bone and lasts for about a minute. Imagine someone tapping you on the bone with a hammer. That's almost what it feels like. My knuckles are also starting to ache again. It makes it hard to handle things. The occupational therapist thinks that I should try doing exercises that will test my dexterity. I told her that I knit and she thought that that should do it. My stomach is covered in bruises from all of the neupogen shots that I have been receiving. The bruising is because of my low platelets. The doctor said that I should get used to it, since they'd pretty much be permanent until I can start making my own platelets.

Today was a really rough day. Laren and Chris were here all day worried about me. I got extremely nauseated this morning right before breakfast. I had the emetic bucket in my lap, primed to throw up. This is the worst feeling, because you know that you will throw up bile and that's bad enough when you are on your own, but when you have two witnesses, it somehow makes it worse. Long story short, I hate to vomit in front of people. Lucky me, I managed to keep it together, but I felt so nauseous, I had to lay my head down. My doctor came in just after this and was concerned. He got my nurse to bring me a cocktail to hang on my IV to treat the nausea. This particular one knocks me out. The doctor came back two hours later and found that I was still slightly nauseated, so he ordered another medication to treat me. This was an IV bag of Ativan which completely takes me out.

The doctor said that I should take the day off today and that it would be fine if I slept for most of it. That's pretty much what happened. I remember falling asleep at 1pm and waking up at 4pm to drink the smoothie that Chris and Laren had picked up for me. As soon as I finished it, I fell asleep again and woke up a 7pm.

I feel a little bit better. The nausea comes and goes and I still feel like someone stepped on me. This is better than being passed out in my hospital bed. I'm sure tomorrow will be a better day. This means that I'll have to catch up on my walking and pedalling. I'm so ready to get out of here and the nurses assure me that the more active I am the faster I'll get out. You'd think I'd be exercising 24/7.

My counts have fairly remained the same. My white blood cell count is 0.1. I'm desperately trying to bring it up to .02. If I could only make one WBC it would be a party. My other counts are slightly higher due to the blood transfusion I had yesterday.

Chris and Laren have been donating blood and platelets for me. Laren spent all day donating platelets for me. This takes $600 off my medical bills. I can't thank her enough for being so thoughtful. Chris donated whole blood and is going back to donate again tomorrow. I couldn't have asked for better people in my life. I am truly blessed with my friends and family and especially Chris. I don't know what I did to be so lucky, but I hope I keep doing it.

Thursday, June 7, 2007

"You'll feel a little stick..."

Day +8 (D 146)

Still no indication in Ann's daily blood tests that her new marrow is doing its job, despite the bone pain she is feeling. Which has spread to her arms and lower back, in addition to her legs where it started. The Doctors and Nurses have agreed with my theory that this due to crowding in the hollows of her bones due to cell growth. However they are gun shy of saying that this is a sign pointing towards engraftment.

Ann's morning blood test did show that her hemoglobin was low and she had to have a transfusion of 1 unit of red blood cells. After which we temperature jumped a bit from 98.4 F to 99.1 F. I hope thats a very, very temporary development.

To pass some time while Ann was taking a nap me and Laren decided to go and donate blood. I have a healthier respect for what Ann has been going through...that freaking needle hurt! I got queasy doing it one day and my brave wife has been doing it almost every day for the past 6 months.

Wednesday, June 6, 2007

Bone Pain!

Update

They have been giving Ann neupogene shots to help prime her system with the need to make white blood cells as quickly as possible. Well today around 4PM Ann reported some pain in her leg bones. On other occasions where Ann felt bone pain after chemo it signaled the regrowth of bone marrow. Her blood results are still zero, but I hope that this is a signal that the little stem cells are mobilizing and not original cells that might have survived chemo.

Nothing Budging

Day +7 (Day 145)

Sorry we missed updating yesterday, but we are literally just waiting for some sort of result to appear in Ann's daily blood tests. Today's results are exactly what we have seen for the last couple of days, zero, nada, zip, nothing. Her WBC count is about as low as it gets. At 0.1 K/uL, they are not expecting it to pick up for at least another week or two.

Ann did need platelets today because her levels dropped below 14 K/uL, which is the threshold for platelet transfusions. There is a gradual decline of hemoglobin and platelets after a each transfusion because Ann can't replace either naturally yet. I guess I'm grateful that the decline in each after a transfusion is slow enough that Ann doesn't need to be constantly hooked up and can have some very slight measure of Independence.

Ann is keeping busy by watching dvds on her laptop, walking around floor 11 and doing her foot bike. The exercise portion occurs for the most part with out prompting. Well, for the most part anyway. The good news is that her pace and distance are steadily improving to the point that she can walk almost half a mile at a faster than normal pace. In another week or so she will be able to do the entire mile (5 times around the floor) without much trouble.

Laren is a big fan of Reno 911, and brought all the dvds with her. We started watching last night and I have to confess I pretty much gave it a pass when I saw it on TV. I don't think me or Ann realized exactly how funny the show really was. Two words: "plum smugglers"....hysterical.

Monday, June 4, 2007

Happy Third Anniversary

Day +5 (D 143)

After testing for 48 hours Ann has failed to turn up any sort of bug. So she is out of contact isolation and I can stay with her again. Thats an extra special treat for us because today is our third anniversary. Normally we would spend the night at Fleming's, Ruth's or Sullivan's where we would start the night with a pair of extra dry martinis. Ann would order a medium rare fillet mignon and I would have the new york strip, with a nice ripasso like Tommasi. Then we would order the largest and chocolatiest dessert that Ann could find on the menu. We would share it over coffee and I would stare at her and try to imagine how I got to be such a luck bastard.

However, tonight we celebrated by Ann getting her 1st food from outside of the hospital since the transplant started. After being at MDA for 6 months now the menu here is looking more and more lackluster each day. To the point that Ann would prefer to eat nothing rather than have to eat meat loaf again. To solve this me and Laren (who arrived yesterday) took a side trip to walmart and picked up some food that the hospital staff approved for the transplant floor. So Ann and me celebrated our special day with Chef Boyardee single serving microwavable ravioli. Mmm...mmm...good...yes, quite.

It's a far cry from sizzling sound and mouth watering taste of a well prepared rare steak, but at least we are still together. Ann was also thrilled with the chance to eat something that didn't begin life in the MDA cafeteria kitchen. I'm sure that will wear off eventually, but if it makes her happy it can't be that bad.

On to more medically oriented news...Ann's WBC count continues to be rock bottom zero. This indicates that the new stem cells have not yet engrafted, but thats not really a surprise. They aren't really expect to for minimum of another 15 days or so. Dr. Alousi continues to tell Ann that she is "right where she needs to be..." and is "doing well". The transplant team continues to shift the dose of Prograf that they are giving Ann to find it's optimal level. Which in turn swings Ann's blood pressure around when ever it's altered. Again they expect that so it's no surprise to them and I find that more comforting than anyone can possibly imagine.

Saturday, June 2, 2007

Isolation

D +3 (Day 141)

I'm on isolation protocol again today. This means that anyone who enters the room must don an isolation gown and gloves. This also means that Chris can't spend the night unless he plans on sleeping in the gown and gloves. I'm being monitored for an intestinal virus. This means that I have to produce a specimen to be analyzed for three days. Imagine my joy. I asked what would happen if I couldn't produce a specimen today and the nurse told me that if I hadn't in 24 hours, then I'd go off isolation. This just means that when the whole complaint starts all over again in 48 hours, I'll have to go back on the same protocol. It's a vicious and disgusting circle. Seriously, if I told you guys the things I have to do involving the potty and the need to know of the nursing staff, you'd all stop reading. I'm grossed out, myself.

It's raining in Houston--again. It makes for a pretty depressing view. On the up side, at least I have a view. There are a few rooms on this floor smaller than mine without windows. Being sick is depressing enough with windows. I am happy to report that aside from the little stomach thing, I feel relatively fine. Chris gets mad when I say this, since I'm prone to telling people I'm fine when I'm not. I do actually feel pretty normal today. My appetite is still off and I'm still experimenting with what I can and can't eat. The nutritionist stays on top of me and my doctor assures me that this is normal. I think it's the menu more than my appetite. No fresh fruits or veggies. The hospital menu stays static, so it's gotten very old. The specials are usually fried, so I can't have them. Believe it or not, I would honestly kill for ramen noodles right now. It's always the things that you can't have that you start to miss the most.

I know we've been pretty sporadic with the postings lately. I'm sorry about that. Our schedules have been so strange for the last week that it's sometimes hard to find the energy to write. I promise to be better from here on out.

Before I forget, my numbers are still nothing to write home about. My doctor told me that I'm right on track today. I'd like to think that I'm a little ahead of schedule, but what do doctors know. :)