Thursday, May 31, 2007
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
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.
Tuesday, May 29, 2007
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
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
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
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.
Friday, May 25, 2007
Two weeks leading up to hospitalization, I started calling other BMT survivors. The overwhelming coincidence among their experiences was that during the week of preparatory chemo, they felt fine. It was the week after that they began to suffer. I was prepared for the same when I started my regimen. I started to feel hideous on the second day. Chris is hopeful that this is a good sign. Perhaps my bone marrow is effectively dying off in the numbers that my doctors want. I'm constantly nauseated and my appetite has vanished. To combat the nausea, I get a zofran drip. Most instances, the zofran isn't enough and I have to ask for something else. The other drugs that are available make you sleepy, which is fine by me. I'd rather be asleep than nauseated.
I'm having a problem keeping warm right now. It's interfering with my oxygen saturation level. My nurse has informed me that if the numbers don't come up, I'll have to have a chest x-ray. This is ominous and I'm worried.
On the lighter side, my hair is coming back with a vengeance. It's a very light brown and looks like baby's down. It's supposed to fall out once more, and then should come back permanently. It will be interesting to see what color it ends up. My eyebrows have come in black, which is normal for me. They look like they belong to a child because of the way that they've grown in. They should also fall out again.
Chris continues to stand vigil over me. He's worried about my appetite and my lack of energy. I compare this experience to my first round of chemo. I remember being listless and vomiting constantly. This round feels a little similar. I managed to put weight on going into this and this met with my doctor's approval. Now I know why. Food feels like paste in your mouth and you're very sensitive to smells. There are only a few more days of the chemo drugs, then I can get my stem cells. I can't wait.
Thursday, May 24, 2007
Wednesday, May 23, 2007
Each morning at about 6am a technician comes to Ann's room to collect blood specimens for the lab work done each day. Typically these specimens are collected through Ann's CVC. However, this morning there was a problem getting a blood to flow out of the chatheter, or "blood return", so they had to call in the IV team who placed the CVC to diagnose the problem. This happened yesterday as well, but the event was pretty anti-climatic so we didn't include it in the blog post.
Yesterday the problem was treated with clot buster drugs. However, after this morning the IV team nurse decided that the real problem is the placement of the CVC line. It is probably laying against the wall of the artery it is installed in and every now and then it gets blocked. I'm really hoping that this does not mean that the CVC needs to be replaced. The less invasive procedures we have to do at this point in time the better. The IV Team Nurse tended to agree and thinks that the problem may resolve itself.
Prior to mobilization Ann talked to a few transplant patients to get an idea as to what to expect. They had various bits of advice to offer, but one thing that they all agreed on was that the effects of the mobilization chemo really didn't kick in until a week or so after Day 0. Ann it seems is the exception the the rule. The Melphalan she got yesterday has really started to do a number on her. On top off that she was introduced to Thiotepa for the first time today.
The Melphalan is killing her appetite and making her nauseous. To boot her energy level is dropping really quickly. Yesterday we managed to go for a mile walk with little prodding on my part, where as now I'm going to have to harass her to just get out of bed.
The Thiotepa is leaching out of her skin and causing uncomfortable burring sensations on her skin. She has taken three showers today to clean it off, and will probably take two or three more before the day is over. If she doesn't there is a chance the effected sections of skin, mainly around the joints, could get a chemical burn and become infected.
I think that its too early to say if the quick onset of what I call "chemo fatigue" is a a bad sign or not. It could be that Ann has been free of the Hyper-CVAD chemo regiment she started treatment with for leukemia, for over a month now and she could just need to get over this rough patch. On the other hand on thing I have learned is that it is inherently difficult to read anything quantitative from vague symptoms like fatigue or being overly sleepy. After all considering what the chemo is doing to her on the inside she should be feeling tired, awful or both.
In other news I think Ann's bank finally got straightened out today. It will be nice to be able to fully concentrate on Ann and getting her better, rather than get distracted by that mess.
Tuesday, May 22, 2007
Today we found out that Ann has tested positive for CMV or cytomegalovirus. This means that at some point in Ann's life she came into contact with the virus, probably at a early age, and her blood is positive for the antibodies that are needed to fight it. It doesn't mean that she currently is infected with CMV. Although the virus can be latent and dwell for long periods of time in the host body.
CMV presents a problem to transplant patents of all types just because of this latency. It can be active or dormant inside the host body for long periods of time, being safely controlled by a healthy immune system. The problem for transplant patients as you might have guessed is that after mobilization they no longer have healthy immune systems, and won't have one for quite some time. In that type of environment CMV can attack the kidneys, stomach, lungs and even the brain. In extreme circumstances like that the virus can become life threatening.
However, just because Ann is positive for the CMV antibodies doesn't mean that she will develop a CMV infection. It is more of a case that the possibility exists. What is frustrating (to me in particular) is that the Doctor's and Nurses seem to lack an effective method of quantifying the exact chances that this will become a problem later on (if at all).
They did offer Ann the chance to become part of a study involving a drug call Maribavir which is supposed to suppress the cytomegalovirus. Sort of the same way that Valtrex suppresses Herpes I suppose. However, after reading over the study it left me and Ann with a load more questions than answers. The side effects of Maribavir are not really well defined, and the study has a whole lot of ECGs (echo cardiographs) being taken of Ann's heart. If heart trouble during transplant (or even after) is a side effect then Ann's not real eager to participate. That her heart is healthy and by all accounts "normal" in MDA's findings, is one of her saving graces.
In other news today Ann's chemo started. She had a bag of Melphalan at around lunch. So far we have no adverse effects to report. I'm sure that those will begin to manifest themselves several days from now, as the impact of chemo is always delayed by several days after receiving it. At any rate Ann is active and feeling well. She has been practicing on her Spirometer (see picture) and even managed to walk a cumulative mile around the transplant wing (5 laps = 1 mile).
We found out that there is a physical therapy class that meets 4 times a week where the patients do light stretching and some resistance exercises with large rubber straps. In addition there is some exercise equipment, but it has to be reserved. I went ahead and ordered Ann a foot bike anyway so she can do something when she doesn't feel like getting out of the room. That way she dosen't have to wait for the equipment to become availiable. What did people do in the dark days before the internet, broadband aircards and amazon.com?
Finally we are still waiting for our bank (CapitalOne) to straighten out the problems with the check from the sale of our house. I am about 2 degrees away from booking a plane trip back to Baton Rouge and reading someone the riot act in person.
Monday, May 21, 2007
Today has been an absolutely horrible day on several fronts.
On May 11, we closed on our house. That was over ten days ago. The check from the sale was deposited the same day. The issuing bank recalled the check on Friday. Long story short, I can't access the money because the money has been removed from my account, and my bank put a hold on my account. This was supposed to be corrected today. No chance. The person with whom we've been dealing with at my bank has been giving us the run-around. Literally. I know people usually say things like this when they're upset, but this person has had us running in circles. So, this is supposed to be fixed tomorrow. Seriously.
Chris's computer broke today. Awesome.
The one nice thing that did happen today was that I was pre-admitted to the hospital. This eliminates waiting around admissions for hours. Chris and I got to go back to the apartment after my morning appointments and just hang out together. Admissions called us around 4:30 to let us know that my room was ready. We got to the hospital thirty minutes later only to discover that my room was still dirty because the former patient had only just been discharged. The room next door was clean, so they let me have it. The really good news is that it didn't smell like urine.
My chemo starts tomorrow. Tonight, we're waiting for the IV team because there are clots in my line. The nurses can't start any fluids or hook anything up to my lumens until the clots have been dissolved. Chris and I aren't getting warm fuzzies about anything.
To compensate, I've ordered more desserts than I can eat by myself.
Sunday, May 20, 2007
Tomorrow Ann goes into the hospital to begin mobilization chemotherapy in advance of the transplant. For the next 7 days (D -9 through D -2) she will be confined to the 11th floor of M. D. Anderson (The Stem Cell Transplant Floor), while the immune system she was born with is destroyed. Then she will be allowed to rest for two days (D -2 and D -1), to recover from the effects of the chemo. Then on the 30th (D -0) she will receive her new stem cells in three sequential intravenous transfusion. Each transfusion should take between 15 minutes to half an hour. So the transplant will take a total of about one and a half hours.
Afterwords we are waiting for engraftment and any emergence of GvHD or infections.
I'm scared out of my mind...
After having fought so long and hard to get Ann to this point I definitely have that sinking feeling. Kind of a "be careful what you wish for, because you just might get it". I'm stabilizing my panic by remembering that Ann's chances without the CBT are below 10% and between 30 to 50% with it. Ann has been cool as a cucumber, until two days ago when the reality of it began setting it. She is taking her mind off of it by planning her packing list and knitting. In fact she has manufactured three scarves in the last two days.
I have been advised by the Doctor's and Nurses at MDA in the strongest possible way to bring in a second caregiver in to help take care of Ann. So we will be welcoming a newcomer to the blog soon. I called one of Ann's best friends in the world, Laren. After I explained to her what we needed she agreed and will be arriving around the beginning of June. Laren is bright, sunny and most importantly funny. Ann describes her a "vibrant". I really think that those qualities will really help carry Ann through this.
I'm signing off until tomorrow. We are going to finish packing and try to spend sometime together.
Saturday, May 19, 2007
Our friend Liz let us know that NMDP is offering free marrow typing kits. If you aren't registered, you should take advantage of this because the kits/typing normally cost quite a bit. It's only a swab and a minute of your time. Please, please, please take a moment and do this because there are so many people in need. There is a link to the NMDP site off to the side. It's so easy, you don't even have to think about it. :)
No appointments today. Hooray! I've had blood drawn from me everyday for the past week and I officially have track marks. On my left arm is a long bruise leading up to my shoulder as a result of all of the blood draws. I'm happy to do all of this because it means that I get my transplant.
I'm starting to get nervous about the transplant since it's only a few days away. During apheresis, we met a woman who had undergone a cord blood transplant six months earlier. She advised me that during chemotherapy, that I would probably feel fine. It's the week after the transplant that I'll probably be incapacitated. It's hard to think back to how I felt five months ago after my first round of chemotherapy. Today I feel strong, almost like my old self. I hate to think that I'll be starting over again and that is selfish of me.
Dixie's here for the weekend. She has been absolutely amazing during this entire time and I couldn't be more grateful to have her in my life. From finalizing the house sale to selling my car, she has been a dynamo. To top that, she's been caring for two of our cats in addition to the two that she already has.
I'm sure I'll be a basket case tomorrow, so I'm not sure if a post will happen. I'll do my best, though.
Friday, May 18, 2007
A fried of ours suggested that we explain the actual process of a stem cell/bone marrow transplant. So today's entry is for everyone who may still not quite understand whats about to happen in two days.
Ann has leukemia which is first and foremost a disease of the blood. Specifically it is a mutation that has occurred n one of her original stem cells as it developed towards becoming a lymphocyte or White Blood Cell. .Each successive generation of leukemia cells is a clone of this original mutation. This mutation continued to divide until it displaced all of her healthy stem cells which were busy developing into things she needed to live like Red Blood Cells, Platelets and White Blood Cells.
So to rectify this you have to remove all of the mutated clone cells. If you leave one then then the problem will start all over again eventually. Of course the problem is how do you separate all of the cancer from Ann. It's almost like having two organisms sharing the same body. The traditional approach to solving this problem has been to use chemotherapy drugs to kill off the mutations and then allow the healthy tissue to recover. In children this almost always works, but in adults it only works in about half of the cases or less.
The situation is complicated even more because leukemia's reaction to chemotherapy is largely defined by it's cytogenetics, which is the genetic defect that caused it to begin with. In Ann's case this is the infamous translocation of the 4th and 11th chromosome on one of the genes in the original mutated stem cell. The t(4;11) defect causes Ann's stem cells to in effect avoid natural aging cell death, called apotheosis. However, those cells retain some limited abilities that are exhibited by the immune system. Namely the ability to adapt to disease and react to foreign objects in the body. It is possible that the leukemia cells will adapt to the chemotherapy drugs and become refractory, or drug resistant. Then the mutation will again begin to spread uncontrollably, one again forcing healthy cells out.
The healthy cells permit this because the clone mutations display the correct marker proteins on their surface that identify them as part of Ann's body. If the markers were different then the healthy cells would attack and kill off the mutations. While it is not possible to change the surface proteins on the cancer cells it is possible to introduce, or transplant a new group of stem cells that will view them as foreign invaders and eliminate them because they have a slightly different group of marker proteins that they view as normal.
In order to transplant the new stem cells into Ann the first thing that needs to be done is kill off as much of her original tissue as possible. This includes both her existing healthy stem cells and the mutated clones. This is called Mobilization or Pre-Conditioning and typically takes place over a period of a week or so. It is accomplished by use of, TBI - Total Body Irradiation or High Dose Chemotherapy. In Ann's case MDA has chosen to use High Dose Chemo.
After the Mobilization then it is time to actually perform the transplant. Which is accomplished by placing the stem cells collected from an adult bone marrow donor or umbilical cords in an IV bag and pumping them into the patient's veins directly. No surgery is necessary apart from the insertion of a IV catheter into the patient. Ann had this done last week.
Then it is a matter of waiting until the new stem cells find the hollow portions of the bones and engraft there. This engraftment is signaled by the production of White Blood Cells that will protect the patient against infection. This period of waiting for engraftment can take upwards of 20 days. All during this time the patient will probably be supported by transfusions of Red Blood Cells and Platelets.
Once the patient has engrafted they will be released from the protective isolation of the hospital and be allowed to live within a 10 minute radius of MDA. From that point on for the next 2 or 3 months the patient has to return to MDA each day for evaluation. Specifically MDA is looking for the onset of fungal, respiratory, or other opportunistic infections. They are also looking for GvHD - Graft vs. host Disease. It is expected that during this period that the patient will be hospitalized for some additional period of time for some type of infection.
After the 100 Days is over then MDA may (or may not) clear us to leave the 10 minute radius and return to Baton Rouge. However, weather we are physiologically prepared to do that is another question entirely.
Now that that is over with there is some news to report from today. Ann had her last ever (hopefully) blood draw from the leukemia lab. It turns out that Ann's WBC's have recovered into the normal range from all the Neogene that was used in the apheresis collection. However, her Magnesium level is low once again and our PA, Lorrie prescribed another baby bottle of the stuff for Ann to take tonight. Lorrie was really sad to see us go, wished us luck and gave Ann a big hug before siding us on our way.
Next we got the results of the Lumbar Puncture that the stem cell clinic performed yesterday. No white cells were detected and her spinal fluid looked very clear with just a few red cells that snuck in through the hole created by the needle. This is good news because it reinforces once more that the leukemia as not managed to get into her central nervous system.
Ann also had a bone density test today, as the final part of the study she was on for the prevention of bone loss. Now that Ann is going on to transplant the protocol for the study says that she has to be removed from the study. Considering that bone loss is a major problem for chemo patients she is really hopeful that someone benefits from it. Unfortunately we won't know the results of the bone density test until a week or so from now.
Thursday, May 17, 2007
I' m sorry that I've been out of the loop for the last few days, but I've been feeling out of sorts and appointments have kept us running. Tuesday night I had a little scare and had to be taken to the emergency room. This one was a real winner. I'd had my catheter replaced that afternoon and for the most part, everything went off well. The nurse that inserted the new catheter had problems with blood return on it and started getting a little agitated. It's important that you're able to draw blood from the line because it shows that the catheter has been place correctly among other reasons. After several trys, she was finally able to draw blood out of my lumens. I was also prescribed a magnesium intermate the same day and it was the largest amount of magnesium that I've been prescribed in one sitting. Well, Chris hooked me up when we got back to the apartment and as the night progressed, I kept feeling pressure building up on my chest. It was an unusual feeling. I could feel the tube inside my chest pressing against my skin while simultaneously, I could feel this intense pressure under my bandage. It was close to midnight when I finally looked at my bandage and I could see that there was an area all around the gauze under the bandage that looked like it had stretched away from my chest and when I poked it, it felt liquid. My natural conclusion was that the magnesium had backed out of the incision in my chest and was trapped by the tegaderm bandage.
I told Chris and we rushed to the emergency room at MD Anderson. We waited for an hour before we were admitted to a room. Here's my favorite part. I'm worked up about what's going on because the line leads directly into my heart and I'm exhausted because it's late and I haven't been getting more than 5 hours of sleep a night, so I'm more than a little cranky. When the doctor comes in to examine me, I'm ready to snap. He asks me what's going on and when I tell him he immediately puts both hands on my bandage and pulls. I'm freaked out because I'm thinking that there's pressure built up in my chest, not to mention the fluid that's already leaked under the bandage. As soon as the doctor pulled the bandage half off, the pressure released and I felt better immediately. There was no liquid and the catheter was fine. It turns out that the bandage was put on too tight and that was causing the feeling of pressure on my heart. The doctor looked at me like I was crazy and asked me if I was satisfied that that was the cause. I think I get a pass on this one since he's going to charge me a fortune for what literally amounts to ripping off a band-aid.
We didn't get home until after 2am and even then, we didn't get to bed until around 3, since Chris had to change the bandage that the nurse put on. It was pretty slap-dash. Chris did a great job, though.
So, I'm a few days out of being admitted to the hospital. I'm not looking forward to being in lock down for thirty days or more. I know it's something that I have to do and I'm slowly wrapping my head around it. It's strange to think that I'll be a newborn next Wednesday. My new immune system won't be acclimated to the world at large and I'll have to be incredibly careful. As the day gets closer, I get more anxious.
Wednesday, May 16, 2007
Ann has been talking to several BMT and CBT survivors lately and after making a comparison between their stories they have one thing in common...excercise. It seems that the survivors that had the quickest recovery spent a good portion of their time post transplant doing some sort of exercise routine to build their strength up as quickly as possible. It also turns out that while in the hospital transplant patients are "encouraged" quite strongly to walk around as much as possible.
Exercise inside the hospital is no problem. Its a protected environment, with lots of professionals on site if something goes wrong. But what about post transplant? Walking is OK, but doing so at our apartment complex is asking for trouble that we certainly don't need. The solution is the stationary bike that we got. It allows Ann to get a workout, at her own pace, in the relatively safe environment of the apartment.
Today Ann did about 4 miles on her new bike in about 45 minutes. She was really proud of her accomplishment and I was thrilled with her effort. Considering the amount of muscle atrophy that she has suffered over the past 124 days, she really had to set her mind to the achievement.
Tomorrow Ann has her 11th Lumbar Puncture. I think the stem cell clinic is doing it just to be on the safe side considering all of Ann's other LPs have come back clean. However, it means that Ann will get a big'ol bag of Ativan and then it will be nap time. Its hard to believe that Ann has 4 days before the mobilization chemo begins.
Tuesday, May 15, 2007
Sorry we have been out of touch with everyone for the past few days, but MDA has cranked the dial to 11. Just about every day has started before 6 in the morning and ended after 7 at night.
Before I get on to the details of test results and appointments, I do have something pretty cool to share with everyone. Ann's eyebrows are growing back (as you can tell from the photographic evidence). She lost them about two weeks ago, but now they are starting to grow back with the texture of a newborn's hair. Even though facial hair has nothing to do with leukemia, I like to think it is a small improvement that marks the apogee of our time here.
Ok onto medical stuff. Today we had another appointment with Dr. Alousi and he told us that the total number of CD34+ cells harvested during apheresis was 3.8 Million. Thats short of the 5 Million target, but he said that was enough for them to work with. Ann's stem cells will now go through a gene threapy treatment. They will then be mixed with mouse antibodies that have been "trained" to attack cancer cells. The idea is that they will filter out any remaining cancer cells in the harvested cells and, those same cells will form a "life boat" if the cells from the umbilical cords don't engraft correctly.
We had some pretty good news too. The pathology results for Ann's last bone marrow biopsy came back. The number of blast cells in her marrow were 1% out of 400 cells sampled, the normal range is between 1 and 5%. The 1% number is good, because it means that she is still in remission. What is better is that the pathologist didn't detect any traces of leukemia in the sample, or to put it another way the sample showed "no evidence of residual disease".
So this puts Ann in a pretty good position going into the transplant. I t does not speak to how easy her leukemia will be to eradicate with the mobilization chemo. Or necessarily how much trouble her new bone marrow will have in locating and killing off any thing that survives mobilization. Although the thinking is that the less evidence of leukemia there is prior to transplant and if there is some GVHD then there is less of a chance that the cancer will be able survive post transplant.
We also passed the last sign post on the road to the CBT today. Ann got her apheresis double lumen CVC swapped out with a new triple lumen CVC. The triple lumen CVC is used for transplant patients here at MDA so that blood products, cells and medicine can be administered all at the same time. The good news is that is didn't hurt and Ann sailed through the procedure. The bad news is that this CVC is as large as or larger than the double lumen. At least she only has to have it for the next 4 months.
Saturday, May 12, 2007
Thank you Lawrence, Edith, and Josh D. and everyone involved in the jambalaya fundraiser. You guys are amazing! I know it took a lot of time, effort, and hard work. Chris and I really appreciate it and love you guys. Josh, you know it's true love when you let a girl paint your nose red. :)
Today we had an early blood draw and apheresis. I must say that I'm a little disappointed that the number of stem cells they're able to collect from me continues to fall. Since Monday, they've only collected 2.9 million. The goal is 5 million and any extra is bonus. Dr. Alousi increased my neupogen dosage to 1200 mg a day to see if this would help stimulate growth. I haven't really had any bone pain since I started the neupogen again. Every now and again my joints will ache for a few minutes and I'll get a little headache. The only major side effect so far has been that my knuckles are swollen and it hurts to straighten out my fingers.
My platelet count was low today, as was my magnesium. I was able to get a magnesium IV while my stem cells were being collected. Unfortunately, I had to get platelets at the ATC bed unit. It's a hit or miss here. Either you wait forever, or you go right in. We got to go in after waiting for half an hour. I must say, I spent over eight hours in bed today hooked up to IV's. This also means that I got to take multiple naps while Chris tooled around on the computer.
We got back to the apartment after 5pm and other than a touch of food poisoning from lunch, nothing eventful happened. I wish I had more to write, but I'm still fuzzy from all of the pre-meds I get before transfusions. I promise to be more lucid tomorrow.
Friday, May 11, 2007
Here we are one more day closer to being able to get our lives back. We got up at 5 AM to go in for lab draws and blood work and then were back in the Apheresis clinic at 8 AM. Ann's results from yesterday were in, and turned out to be a slightly disappointing 0.49 Million. I say slightly disappointing because our total collected so far is 2.97 M. That leaves us 2 Million short of the 5 Million total CD34+ cell goal.
However, this may not be a problem. I have been assured that other institutions have performed transplants with only 3 Million cells, so maybe the other 2 M are "just in case". Then again I'm hoping that we won't need these cells anyway. After all they or ones closely related to them were the reason Ann got leukemia in the first place. Statistics show that Autologous transplants are roughly three times more likely to relapse than patients treated with from an Allogeneic source. Which is exactly what the cord blood units are.
We nearly got thrown out of the apheresis clinic today for laughing and cutting up. Ann had started surfing the net on her laptop and ended up on a couple of very non-PC websites. The subject matter was for the most part unintentionally hysterical, and we both laughed so hard it left us gasping for air and wiping tears from our eyes. I can't remember the last time we laughed like that, and it felt really good just for that moment to forget about transplants, cancer, and all the other worries that we are carrying around these days. You have to fight really hard to maintain your love and connection to each other, or the treatment will grind it to dust. I had assumed our sense of humor had been demolished already. What a wonderful surprise it was to find out today, that its just been hiding and is otherwise unharmed.
After this round of apheresis I should be able to take Ann home to rest, and I will be able to attack the mound of laundry that has been building up since our schedule got so busy.
Last but not least Happy Birthday Tina! I hope you get more Cowbell!
Thursday, May 10, 2007
Today's transfusion is notable because its the first time Ann has gotten blood from Louisiana while here, but then again she has not needed as many transfusions as some other patients in rougher circumstances. Many thanks to the A Pos donor that decided on 4/25/07 to give blood at the Lifeshare Blood Center in Shreveport. I don't know who you are, but you and everyone else who gives blood and platelets are our heroes.
Wednesday, May 9, 2007
Today we are back in the apheresis lab for Ann's second day of collection. It was actually a bit of a surprise start for the day because MDA called us early this morning and asked us to come in. Normally the apheresis clinic is packed, not because there are lots of patients, but because each collection can take upwards of 4 hours. So getting here early is really a bonus because we won't have to wait until after 6 to get back to the apartment.
Dawn, our apheresis nurse, told us that yesterday's collection looked really good. MDA's labs confirmed the collection of 1.6 million CD34 cells (aka stem cells) out of the target of 5 million. We also found out another very interesting side effect of neupogen...in addition to rotten bone pain it causes fevers! Well low grade fevers anyway, but it still freaked me out when Ann's temp registered at 100.5 F today. I was ready for the apheresis to be aborted and have her check into the hospital for a week of IV antibiotics. However, Dawn put my mind at rest and said Ann is not having any other symptoms (chills, sweats, trouble urinating, etc, etc) and neupogen causes fever spikes sometimes. Especially at the levels she is taking (900 mg per day). Sure enough 30 minutes later her temperature was back down to 98.7 F and then a hour later it was all the way down to 97.4 F.
From a technical POV the collection process is pretty interesting. The apheresis filter is really a collection of peristaltic pumps and a high speed centrifuge. Blood is drawn from the patient (Ann who is currently being impossibly cute) and pumped into the centrifuge. There the angular velocity causes the blood to separate based on relative density. RBCs are the most massive and settle to the bottom. Plasma is the least massive and ends up on the top layer. WBCs and Platelets occupy the layers in between.
In this middle area is a small band where the CD34 Cells fall out. A tube and trail and error are use to siphon them off. The positioning of the different blood layers is controlled by adjusting the speed the centrifuge is rotating at since the collection tube is mounted statically in the incoming blood from the patient. Once gathered the stem cells are mixed with a preservative (DMSO) and pumped into a collection bag. Funny that so much fun is poked at engineering by the Docs over here when this collection of PDPs, motors and feed back controls is relied on so heavily to treat cancer patients.
The apheresis lab is incredibly cold most of the time, probably to keep down the chances of damaging the blood stem cells being collected. So in the 4 hours or more that a patient (and her husband) will be there it is necessary to dress like its January in Main and not May in Texas. In this picture you can see Ann has about 4 blankets piled up on top of her while she passes time watching MPGs on her laptop.
To help keep the patients warm the apheresis lab has blanket warmers. These can hold up to 50 clean blankets and heat them up to about 90 F or so. The effect is just like grabbing clothes just out of the dryer and they seem to do the trick for helping the patients keep warm.
For everyone who ever wondered what blood stem cells/bone marrow looks like, the picture on the left should satisfy your curiosity. This is a picture of the cells that they collected from Ann yesterday.
One last thing...I discovered today that MDA has installed cellphone scramblers at various points of the building to protect their telemetery from some labs and wireless data systems. So if anyone has been trying to call us while we are at MDA and gets dumped to voice mail then that's the reason. The problem is compounded with some sort of screw up Sprint is currently having, which messed up my aircard and put a big delay on our voice mail notification. Which is also if you haven't guess is the reason this post is so late.
Anyway more tomorrow. Night everyone.
Tuesday, May 8, 2007
Lots of postitive developments today.
Ann's CD34+ cells (stem cells) where at 20 M/uL which is over the target value of 14 M/uL. So she was approved to go through Apheresis. Hopefully the chemo has not damaged her orginal healthy stem cells too much and they will be able to harvest enough of them (target 70 mL or 5 million cells) for a backup just in case the cords don't work out like they should. We are now on the fast track and will spend the next three days in apheresis.
Speaking of the cords, the first one was delivered today. The second will be arriving early tomorrow. With that news we also got firm dates for the first time:
5/16 (Day -16) The cords begin preperation and conditioning for transplant
5/21 (Day -9) Ann goes into the Hospital to begin transplant preconditioning
5/30 (Day 0) Ann's new stem cells are transplanted (Happy Birthday Ann!)
This is starting to feel scary real now.
Monday, May 7, 2007
Today was a bit of a disappointment on a couple of fronts. We started off early this morning by going to MDA for our Apheresis appointment. The plan today started off with a blood draw to see if there were enough CD34+ cells (aka Stem Cells) in Ann's blood that could be harvested. Then we got Ann's CVC replaced with a much larger model that the Apheresis filter could work with without crushing and destroying the blood stem cells. Well that was the plan at least...
What actually happened was a bit different. The blood draw did go off without a hitch early this morning. After which, we scooted over to the Mays Building Infusion Clinic to get Ann's brand new CVC. Initially, Ann wasn't too nervous about this until they started explaining how they were going to get the new line into her. The process involved surgical wire and a vein dilater. After that explanation Ann needed a sedative to get through it.
Pictured to the left is the after effect of the sedative and new CVC. Ann was out like a light and after she recovered she described the sensation of the new CVC line like "being punched [repeatedly] from the inside". The range of motion for her left arm has dropped to almost nothing because she can feel the new CVC line internally if she moves too much.
The good news about this line is that it is supposed to be removed as soon as Apheresis is finished. The bad news is that it will be replaced with a larger one for the transplant.
Unfortunately, we never got into our Apheresis appointment today for two reasons. After getting the new CVC, x-rays had to be taken to confirm the placement of the CVC line. Radiology took longer than they should have getting those results back so we were late for our appointment. Then it turns out that the results from the blood test this morning showed that Ann had not made enough stem cells for the process to even be viable. Of course we would have known that if we had been able to get the x-ray results back on time. Oh bother.
So we will try again tomorrow. Hopefully after another couple of shots of neupogene we will have enough stem cells. The target is 15 m/uL and Ann is currently at 7 M/uL. If not then the whole thing will be called off and MDA will try to do a direct bone marrow tap instead.
We also got told today that they will not be able to give us a definitive date for the transplant until Apheresis is complete. Talk about frustrating.
On a side note I apologize to anyone who has been trying to email us and not getting a timely response, but we have been suffering through some technical difficulties. The OS on my laptop crashed and I was forced to replace it with Windows Vista. I'm not grousing about Vista, far from it, it's actually a pretty cool OS. Just that Gateway has never gotten around to updating some drivers for the M320 series of laptops from XP SP2 to Vista. So I'm gradually getting functionality back, with a few notable and frustrating exceptions.
Saturday, May 5, 2007
Today the movers came and packed up our house. It 's strange to think that total strangers were going through our things and putting them away in boxes. Chris was a little down today because the reality of our house being sold finally sank in. The new owner takes possession next week. I hope he's as happy there as we were.
On the up side, we get to start over in a new house when I'm better. Let's hope that I've learned from all of my do it yourself mistakes. Let's also hope that it doesn't take me forever like the last house.
I got to spend the day knitting, which was very nice. Chris spent the day trying to fix the computer. He finally gave in to the allure of a microsoft upgrade and downloaded vista. It took three days to download and all day to install. In the end, we ended up losing a few programs that are important to what Chris does for a living. I have some of them on my computer, but they can't be transferred. You win some, you lose some.
The toes were a treat today. The offending toe that got me into this was actually pain free today. The other toe hurt off and on all day. Strange how things work. I have to soak them in a foot bath twice a day and change the dressings. Chris is worried about infection. Me too. I don't want this to be the thing that delays the transplant. I have to be healed before the end of two weeks. Dr. Oliver was coy about how long this should take to heal. She vaguely said two weeks, then changed over to several weeks. I just keep telling myself that it's going to resolve itself in time.
On to the one thing that is really worrying me. I started getting the increased doses of neupogen Friday morning in the hope that I would start producing increased numbers of stem cells. I have to produce a certain amount in order for the transplant team to harvest them. I've had a little bone pain, but nothing compared to what I've had in the past. This worries me since I expected to have a large amount of bone pain this weekend. If I can't make enough stem cells, the doctor wants to bring my mom in. I'm worried, because I don't think that we'll be able to convince her to do it. I'm hoping that they have a plan C.
I have a blood draw tomorrow morning. We won't know anything, since there isn't a follow up scheduled after it. We have appointments Monday and we'll have to hit the ground running with everything scheduled for the day. We'll keep everyone posted as we find things out.
Friday, May 4, 2007
Today was going to be short and sweet with just two appointments ahead of us and nothing else on the horizon. After a long week of appointments stacked on top of each other it would have been nice to have a day to rest and regroup. I was so very wrong. I had to have blood drawn to be sent to one of the cord banks that's holding a cord for me. They need to verify for themselves that the cord does indeed match me. The other cord bank has already verified that the cord that they are holding is suitable for me.
Following the blood draw, I had an appointment with the in house dentist to get a check up. Let me first say that my dentists in Baton Rouge are absolutely amazing and I have been going to Premiere Dental Care for eleven years. I ended up waiting for half an hour before I was shown into a room. I waited one and a half hours in the chair. I am not joking. Chris had to talk me out of walking out. The dental oncologist examined my mouth and teeth and told me exactly what I knew he would. My teeth were fine. He said that the restoration work was exceptional, so kudos to Drs. Toi and Cyndi. He proceeded to tell me what I needed to do during my CBT and then he did something that shocked me. He pulled out a box of junior mints and told me that I should eat these during my confinement to help with my bad breath--After a transplant, you either smell like creamed corn or olives. It oozes out of your skin and manifests in your breath. Fun. This is the first time that a dentist has prescribed candy to me.
We had just enough time to drive across town to make my podiatry appointment. I was just going in to have my big toe looked at with strict orders that the podiatrist was only supposed to do the least invasive procedure to fix the problem. Didn't happen. After consulting with Dr. Alousi, Dr. Oliver decided that I needed to have surgery on both big toes and it was going to happen today. To clarify things, I've had problems with ingrown toenails since I was six. I've had surgery to correct the problem on both toes before. It did fix the problem on one side of each toe. Dr. Oliver performed the same surgery today. It is the most disgusting thing that I can imagine watching. First the doctor uses a scalpel to score the length of the nail, then they use a chisel to sever the nail from the toe. After this, they pull the fragment out and apply phenol to the area where the toe was originally growing. This is to cauterize the area and kill the nail. Yummy. So here I sit with both toes bandaged to within an inch of looking like Flintstone feet.
After all of this, we had to go to the drugstore to pick up supplies. On the way back to the apartment, I was eating a candy bar and just happened to look at it and saw that the nougat was a strange green color. I couldn't decide on whether I should tell Chris and started freaking out because the candy bar was rancid and I'd already eaten part of it. Before I completely lost it, I looked at the label and saw a picture of Shrek. It turns out that the candy bar was part of a special promotion and the nougat was green on purpose. Silly me. Chris was laughing so hard he had trouble breathing when I told him what I did.
Finally, our friend Anand flew in from Los Angeles for a visit. It was really nice to see him and it gave us a chance to catch up on what everyone was up to.
Thursday, May 3, 2007
In 49 BC Julius Caesar lead his legions across the Rubicon river which defined the boarder between Gaul and the Roman Republic. An action which was illegal under Roman law and could have cost Caesar everything and destroyed the Republic along with him. However, his risky course of action would ultimately change the course of history.
The phrase "crossing the Rubicon" has survived to this day and describes just the sort of calculated risk that Caesar undertook more than 2000 years ago. We might understand it better by thinking of it as the "point of no return". Which is exactly what Ann and I passed through today.
Today Ann singed her paper work to begin the Cord Blood Transplant. There is no more time for doubts and second guessing now. The process has started to move forward with a frightening pace and we are committed.
First up today we got the results of some of the tests Ann took the other day. Her latest Bone Marrow Aspiration come back with 1% blast cells. Thats down from the 3% that where in her last BMA. PCR and FISH tests have not been completed on this one, but our leukemia Doctor believes that because the volume of blast cells is so low and well in the normal range, so they are probably not leukemic. We will get those portions of the tests later.
However at this point it hardly matters. The conditioning regime pre-transplant is going to be Fludarabine, Melphaian, Rabbit ATG and Thiotepa. Fludarabine is derived from phosphonic acid, while Melphalan is derived from Phosgene! I worked a couple of jobs at chem plants in BR that processed Phosgene, and have talked to enough people exposed to it for it to be one of those chemicals that just scares me silly. To put it in perspective, Phosgene is closely related to the same infamous Mustard Gas that was used in WWI!
Rabbit ATG is a gene therapy drug composed of rabbit antibodies that have been "trained" to kill off human immune cells. Finally is the one we got the biggest warning about, Thiotepa. Thiotepa is another phosphonic acid derivative, but it will leach out of the skin after infusion and cause burns. So Ann has been advised to take multiple showers during the day after the infusion of it begins. All of these drugs will take all of her existing bone marrow and any remaining cancer cells and wipe them out completely.
The results of the CAT scan she took yesterday shows no sign of sinusitis or tumor cells in her head or neck. Thats just another confirmation that it looks like the leukemia has not been able to move into her central nervous system. Also Ann's Echocardiogram continues to show that her heart is normal and healthy. I'm unbelievably grateful for both of these results going into the transplant.
Last but not least on the lineup of today's test results was the CBC. Ann's WBC count has stabilized at 5.3 K/uL which is right in the middle of the normal range. Her platelets are at 174 K/uL (low end of normal). However her RBC count is still low at 3.05 M/uL (normal 4.00 - 5.50 M/uL), and the Hemoglobin (9.6 G/dL) and Hematocrit (27%) numbers are low along with it. I have been reassured that this is not unusual and it will take a long time for the RBC numbers to recover.
So after covering all those results I would like to introduce everyone to Ann's transplant Doctor. His name is Dr. Alousi and he is a very soft spoken and laid back man. His mannerisms immediately put you at ease, which is high praise considering the anxiety that most patients and caregivers must feel about transplants. He was very animated today and seemed genuinely excited to have all the papers and consents signed so that he could begin treating Ann.
Our next step is Apheresis, and a backup stem cell harvest from Ann in case something goes wrong with the cord stem cells. Although Dr. Alousi did tell us that because of the amount of chemo that Ann has gone through the chances of being able to harvest her stem cells for a backup is 50-50. We may have to call her Mother in Slidell and ask her to donate considering she has half of the 10 HLA proteins that Ann's cells have. Half isn't great, but it is better than nothing if Ann's cells won't cooperate.
I know everyone wants to know exactly when the transplant will be. However, MDA still has to coordinate a few more things before they can tell us. We expect that we will be getting a call this afternoon or tomorrow letting us know exactly when.
More updates later if we need to.
Wednesday, May 2, 2007
I'm so tired that I can't see straight, so please forgive me if I start to ramble. I had a CT scan first thing this morning. Immediately following that I had an echocardiogram and right after that I had a pulmonary test. I was exhausted after that one, but the technician seemed very pleased with my results. That's good enough for me.
My big toe continues to cause problems for everyone. That's a sentence I thought I'd never write. MDA doesn't have a podiatrist on staff, but they do have a partnership with a clinic in Houston. My transplant doctor's PA called me to let me know that I needed to call the clinic and get an appointment by Friday. She'd already called them to let them know what was going on. Now I'm waiting for that doctor's office to call me back to let me know if I have an appointment. Did that make sense?
Our house is getting packed up and put into storage this week. It's odd to think that total strangers will be touching our things and packing them away. If all goes well, the sale of the house will be finalized next week. Chris and I are a bit sad since this was our first house and we hadn't finished renovating it. We'd only just finished furnishing it when I got diagnosed. It's strange how things work.
Tomorrow is going to be another extremely long day. I have to meet with both of my primary doctors in addition to everything else. I'll get the results of my bone marrow aspiration and maybe my biopsy. We're hoping for no blasts.
I'm off to bed to catch up on some sleep. Good night, everyone.
Tuesday, May 1, 2007
Today was tremendously busy. We started the day out meeting with the stem cell clinic's social worker to sign consent forms. I can't even remember the number of times I signed my name or initialed next to something. The one interesting thing I remember is signing a consent so that the NMDP could have a sample of my blood. It's a very elite club to be joining. They're tracking blood cancers. They get left-over marrow from biopsies, too. Ooky.
I got to see my transplant doctor next. I need to make an aside before I talk about the visit. When I woke up this morning, the big toe on my left foot was a little red and hurt when touched or any pressure was put on it. I have a long and varied history with ingrown toenails. It's gross, I know. I've had two surgeries to help correct it and was planning on scheduling another before I was diagnosed. I told Dr. Alousi's physician's assistant about it and she insisted that Dr. Alousi see it. They're worried about an infection, so I now have an appointment with a podiatrist. Chris and I joked that my downfall would be something as silly as an ingrown toenail. We shouldn't have invited trouble. I have to have this cleared up before I can move forward.
Dr. Alousi said that the CBT would probably take place in as short as two weeks.
Two weeks is a scary proposition when you think of it. I was a little shocked when he said it. I'll start mega doses of neupogen on Friday. It will be three times the dosage that I normally get injected with. On Monday, I'll be getting a new port placed in my chest so that they can harvest my white blood cells to use in case I don't engraft properly.
I met my research nurse during this visit, as well. She gave me a time table for the chemo that they'll be using for conditioning. They are using some very scary chemicals. Chris thought that I'd be doing total body irradiation. I'm glad that I'm doing chemo. The radiation wreaks havoc on your brain. No thanks. I'm already suffering from learning disabilities from the chemo regimen. It's funny, but in the beginning when I worried about this side effect possibly affecting me, my friend Joe said, "You're smart enough." It still makes me laugh. I'll do seven days of chemo followed by two days of rest and then I get my new cells. I still can't believe it.
I had an EKG after this. We had to wait one hour and fifteen minutes for this appointment. The EKG took less than five minutes. This put me off for the rest of the day. The next appointment was an interview to discuss my new port placement. When they put in my original port, I was so high from all of the medication that they gave me, I don't even remember it. The description of the new procedure made me a little queasy. They're going to pull out my old port and insert a guide wire to find the big vein leading into my heart in order to place the new port. I was told to let the technician know if this hurt. I can't wait. I'm debating on whether or not to eat before this one, because I sincerely do not want to throw up on myself during this one.
The last appointment was not my favorite. I knew that I was on the board for a bone marrow aspiration. Turns out that I was also down for a bone biopsy too. This involves punching out a piece of my hip bone to analyze. The technician that performed both procedures was a very petite woman. She might have weighed one hundred pounds. When you're having this procedure done, you want a guy who looks like they live at the gym when they aren't at work. I had that guy the first time I had an aspiration and biopsy. No pain. It was wonderful. I almost asked for the procedure to stop three separate times. It was excruciating. I'm not generally a baby when it comes to pain. She had to go in a three different angles because she kept straying out of the area that had been anesthetized. Imagine an enormous punch going into your hip bone below an area that hasn't been hit with lidocaine. My bum hurts. Chris reminded me that I still had darvon and I am grateful.
We got back to the apartment after 6pm. We have a full day tomorrow, as well. I can't even remember what we're doing. It's like riding the tea cup rides. At least we're in the home stretch.