Thursday, May 31, 2007

Brand New Day

Day +1 (D 139)

Ann's first new day began with a nice start. Her blood work came back with the predictable results. Her blood counts are still in the basement (WBC 0.1 K/uL, Plts 17 K/uL, RBC 3.2 K/uL). The RBC count had moved upwards, but that had more to do with the lasix infusion from the previous day which had dehydrated her a bit, but no transfusions were needed.

Yesterday her blood pressure and heart rate had gone up and down respectively after a drip of Prograf was started. Prograf is an immune suppressant that is supposed to limit the ability of any of her original marrow, whatever of it is left, to react. Thats so the new stem cells don't get attacked before they can find their new home in the newly hollowed spaces in her bones. Her blood pressure and heart rate had returned to normal today after the dose and rate of infusion of Prograf had been adjusted.

Eating is a frustrating enterprise at best for Ann and at worst it is a trip on the vomit comet. For the last 5 days Ann has had very little of any substance to eat. She has sampled just about everything on MDA's menu. Which by the way is getting really, really old considering we have been looking at the same one for six months now. Anyway, about the only thing that she has found which will not instantly trigger her stomach to turn is plain white rice. However, you can only eat so much of that. Over the last week has lost 3 Kg, which the Doctors and staff here consider "normal". I have taken to eating cold sandwiches or out of her room all together because just the smell of food can sometimes set her stomach off.

In addition to walking the floor and staying out of bed as much as possible, MDA has a physical fitness class that meets Tuesdays and Thursdays for transplant patients. I had tried to get Ann to go to the class last week, but her stomach vetoed the idea pretty effectively. This week she didn't have an excuse and got to meet some of her neighbors.

The exercises are pretty basic and focus on small basic movements of arms and legs. A lot of them use rubber bands to provide mechanical resistance to arms and legs. Others involve using the legs to either move through their range of motion or help lift your body. Ann had the most trouble with these as she still has not regained the muscle mass that she lost during the first month of treatment here.

The physical fitness staff is still pretty impressed with Ann, as are the transplant nursing staff. They have commented that they expected her to be feeling much worse than she is and to have much less strength than she does for being just transplanted. On the other hand Ann is by far the youngest patient here on the floor. Most seem to be in there late fifties or early sixties with one or two minor exceptions.

I ran into a man whose wife is on day +9 of her allogeneic transplant for mantle cell lymphoma. He told me that a day or two after the transplant his wife's experience was absolutely terrible. So bad in fact that he was not convinced that she was going to make it until yesterday night. He went on to caution me that Ann's experience would most likely be the same. After thinking it over for some time I have determined that he might be right, the current high we are on might evaporate into the lowest of lows. That being said, I think we can both live with it because today marks the very first positive step we have taken towards living normal lives together again.

Today was a great brand new day.

Wednesday, May 30, 2007

Reborn

Day 0 (D 138)

Today I laid out millions of virtual juice boxes and cookies to entice the new baby stemcells to want to stay. Chris imagines the new cells to be kindergartners on their first day of school. He joked about one of the left over rabbit ATG cells being the class pet.

I received my transplant in three stages. Before each dose, I was given steroids and benadryl. I spent the entire day fighting sleep because of the pre medication. With the first bag of stem cells, I lost the ability to regulate my body temperature. I've been wrapped in blankets ever since.

With the second bag of stem cells, I developed a strange taste in my mouth. The transplant team provided me with mints in case this happened. I don't know if Chris or I have ever talked about it, but the preservative that stabilizes the stem cells smells like creamed corn or olive brine. Well, this odor transfers to the transplant patient. The inside of my mouth tastes like stale creamed corn. It's really disgusting. I ordered applesauce for dinner and for some reason, it tasted like canned meat. Eating was already an ordeal to begin with. Now I smell like creamed corn and the only thing that I can keep down is canned pears. I feel like a really bad movie plot.

I can honestly say that I couldn't be happier. It's been an amazing ordeal and I know the days ahead are going to be rough. I still have to engraft and we have to be sure that none of my old cells rear their ugly heads. There is CMV to be worried about. I have to stay infection free and start making healthy marrow. I can't wait.

Happy Birthday Ann - Transplant Day

Day 0 (Day 138)


Dr. Alousi introduces Ann to the 1st bag of cord blood

Birthday IV pole

1st bag almost finished


2nd bag of cord blood (3rd one on the way)

"I'm sleepier than I look"

Tuesday, May 29, 2007

One Day left

Day 137 (D -1)

It's the night before the transplant and Chris and I are exhausted. I woke up feeling pretty badly. I couldn't take a full breath and sounded like an accordion every time I tried. My doctor gave me lasix and ordered a set of chest x-rays. The lasix did the trick.

On the bright side, my Uncle Loi flew in to be with us during the transplant. It's really nice to see him. I only wish that I could be a little more entertaining. I feel like I should be a good host, then I remember that I'm trailing an IV pole with eight pumps attached to it.

Chris got me a foot bike to help me keep in condition while I'm in the hospital. It's really neat, but it's kicking my butt.

It's past my bed time and I'm starting to ramble. I'll wish everyone a good night.

Monday, May 28, 2007

Delayed Reactions

Day 136 (D -2)

Two more days until Ann gets her new bags of "baby jelly" as she calls it. She is excited at the prospect of getting a second chance at living. I have to confess I oscillate between stark terror and willful glee. Luckily on days like today it is easier to be more of the later than the former.

Today started off like it was going to hardcore suck. Ann woke up swollen, puffy and with bright red eyes. Those of you who have been with us for a while will remember Ann's reaction to Cytarabine and how it temporarily blinded her because of her unusually strong reaction to it. Dr. Alousi, Ann's transplant Doctor, started doing rounds this week and got to examine her in person. He pronounced the puffiness fluid retention (1.5 L extra) and the eyes were a delayed reaction to the Rabbit ATG. He assured Ann that it will not get any worse and should wear off in a day or two.

If the fluid retention continues then Ann will get lasix to kick her bladder into overdrive. However her blood counts have fully bottomed out today (WBC 0.1 K/uL, PLTS 10 K/uL RBC 2.4 K/uL) signifying the death of her "factory installed" bone marrow. That makes her transfusion dependent, meaning that every day from now until after the transplant and her new bone marrow starts functioning as required, she will need to get transfusions of red blood cells and platelets.

That may sound a bit depressing, but things are looking up. Ann's appetite is staging a come back. She almost ate a whole piece of pizza, which is also a continuing theme from her first few rounds of chemo. I think the it's the breadiness of the crust that makes it easy for her to get it down.

I know that there are rough times ahead, but here is to hoping that tomorrow continues to be uneventful.

Sunday, May 27, 2007

Kill the Wabbit

Day 135 (D-3)

In keeping with the bugs bunny theme there was a series of shorts involving Bugs and Elmer performing Wagner. After the day I had yesterday, I can now sympathize with Elmer Fudd.

I was lucid for the better part of 30 minutes and not all at once. The ATG caused a high fever which compounded my nausea. In addition to all of this, I wasn't able to eat.

Today was the first day that I managed to keep something down. Chris brought me a power bar which seemed to be ok. The floor's nutritionist paid me a visit today. I'm grateful, since I haven't really eaten in three days. I'd order food, thinking that I was hungry, only to be nauseated at the sight of it. Poor Chris had to eat in a corner to keep me from throwing up from the scent of his food. The nutritionist advised that I only eat cold foods, since they are generally low in odor. She also told me to focus on one food at a time, so as not to get overwhelmed. Tonight's dinner consisted of every jello flavor on the menu, yogurt, a milkshake, and a boost breeze. The jello tasted really strange, and it smelled like room freshener, so I passed after a few bites. The yogurt brought on a touch of nausea, and the milkshake was something that Chris ordered for me. It was just nice to have a little something in my stomach after so many days.

Today's dose of ATG was tolerated much better. The nurse elected to give it to me over a longer period of time in case I needed more steroids to tolerate it. Not a problem. I was able to go on three walks today, at the prodding of my loving husband. I also worked with my spirometer. The doctor said it sounded like my right lung was collapsing. This was just a result of me being trapped in bed yesterday due to high fever, etc. It's frightening how fast something like that could happen. You had better believe that I was only too happy to get out of bed and start moving. I couldn't imaging having a collapsed lung.

Today was the last day of chemo. I hope it's permanent. I get two days off, and then I get my stem cells. Yippee!!

Saturday, May 26, 2007

Hare Tonic

Day 134 (D -4)

Fans of the early Chuck Jones Bugs Bunny cartoons will remember the 1945 short "Hare Tonic". In which Bugs convinces the ever dim-witted Elmer Fudd that he is infected with "Rabititus" after Elmer brings him home from the market to cook for a stew. Elmer soon after begins to display the symptoms of "Rabititus": seeing spots, coated tongue (coat and pair of pants), and finally seeing himself in the mirror as a rabbit. Of course Bugs soon arrives in the guise of Dr. Killpatient to set everything right...

Well today Ann got a real dose of "Rabititus". Specifically today she got another bag of Fludarabine followed by Antithymocyte Globulin (Rabbit) or Rabbit ATG for short. Rabbit ATG is not really a drug, but anti-bodies collected from rabbits that have been engineered to attack human T-cells. T-cells are the part of the immune system that destroy tumor or virally infected cells, they are in effect the middle-management of the immune system world. However, they also tend to attack transplanted tissue, so in this case they gotta go. Downsized out of existence as it were...

I can almost imagine a picturesque day where the sun shines down out of a baby blue sky on a busy metropolis populated by thousands and thousands of middle-management business types (Ann's T-cells). They are all dressed alike in oxford suits and bowler hats and greet each other with utterances of "harrumph" and "pardon me old chap". Gradually the sky darkens and a vast and terrible shadow is cast over this little scene. Eyes are cast up wards, and shocked exclamations of "I say!" and "My Word!" are heard as an endless wave of cute and adorable, but oh so blood thirsty rabbits with sharp pointy teeth descend from heaven !

A bit Pythonesque but still...

After the infusion of the "Hair Tonic" Ann is feeling like crap. She is officially neutropenic today as her ANC (Absolute Neutrophil Count) and WBC counts dropped below 1 K/uL today. She has not been able to eat anything besides about 2/3rd of a croissant, and a few tablespoons of apple sauce. About 4 hours after getting the Rabbit ATG, Ann started to complain of chills then developed a fever. Which has gotten as high as 39 C or 102.2 F so far.

The staff here doesn't seem to be too concerned about the fever as it is a common side effect of the Rabbit ATG. They have Ann on observation and are anticipating the fever breaking once Ann's immune system is overwhelmed by the attack of the rabbits. If it doesn't it could mean that the fever is not from the ATG, but from a invading bug instead. Thats the very, very last thing we need as it would postpone her transplant indefinitely until they could control it with antibiotics.