I got up early yesterday morning to call my local oncologist to see what he wanted to do about my illness. Of course I only got to speak to a nurse who assured me that she'd pass my query along. Four hours later I still hadn't heard anything, so Chris called and asked what was going on. It turns out that the nurse didn't bother to ask my doctor since he was in with patients. Are you kidding? Chris let her know what he thought of that which might have prompted her to finally ask the doctor what to do. She called a few hours later to let us know that the doctor didn't have anything further to add and that I should finish out my prescriptions. Okay.

At 4PM we got a call from the same nurse and she was in something of a tizzy. It would seem that my transplant doctor called them to light a fire under their collective behinds. My transplant doctor was asking them for copies of my blood work from the hospital. The nurse was scrambling because she claimed that they didn't have it. After having given her the whole story, she still asked me when I went to the ER and which ER I had gone to. I'm pretty certain that they had the numbers since the ER doctor said he was sending them forward. I know my transplant doctor had them because Chris emailed them over. To be honest, I think my transplant doctor was trying to get my local oncologist to leap into action instead of just sitting back and taking things easy.

My absolute neutrophil count is pretty low so my transplant doctor suggested that my local oncologist give me neupogen shots. It just astounds me that my local office is so laissez faire about what's going on. It would be one thing if I had a competent immune system, but I don't. I don't really want to be the victim of a dithering medical practice. Do something or tell my transplant doctor that you don't feel comfortable calling the shots. I've already been instructed that when I'm in Baton Rouge, I should defer to my local oncologist, but I'm starting to find that hard to do because of a seeming lack of interest. A friend of Dixie's was diagnosed with CLL five years ago and just recently relapsed. The stories that I've heard about her oncologist aren't very encouraging, either.

I'm not some hot house flower who needs constant care. I honestly hate the attention. I just need a local doctor who isn't afraid of stepping on toes. Assess the numbers and go from there.

Needless to say we were at the doctor's office bright and early for my shot. I just thought I'd be going in to get it and that would be that. Not so lucky. I had to get looked over by another nurse and I really have to be sympathetic to her since I got the impression that she didn't know what was going on. It was fairly apparent that there had been a break down in communications somewhere. An hour and a half later I got the shot. I now have to go back tomorrow and the next day to get subsequent shots of neupogen. Bring on the bone pain. I was told that if I took claritin in the AM and PM, I would avoid this. I already take claritin-D for my allergies, so this is just a bonus. I'll let you know if it really works.

So I'm aggravated at all of the rigamarole here in town and I'm cranky because I'm sick. My temperature this morning was 101.0 and 99.5 at the doctor's office. I'm feeling a little better and can't wait to be over this.

Fish sandwich

Chris and I have a little joke about fast food restaraunts and fish sandwiches. The theory is that there's only one fish sandwich at any given time and should you be so unfortunate as to order one everything stops. There's a mad scramble as workers try to locate the sandwich and have it transported in. So the joke goes: if you want to gum up the works, order a fish sandwich.

Last night, I was the fish sandwich. My temperature spiked to 101.6 so Chris packed a bag and loaded me up in the truck intent upon driving to Houston. He had me take my temperature again just before we left and it had fallen to 99.1. He decided to take me to a local ER instead, just to be on the safe side. It was roughly 10PM and my experience with hospitals is that the later it is, the busier they are. As it turns out, if you're a stem cell transplant patient, you get bumped to the head of the line just behind serious trauma victims. Who knew? The admitting nurse was kind enough to find a private room for us to wait in away from the general population. I had to wait while a private suite was readied for my admission. White glove service and all.

I was interviewed multiple times before the doctor came in and it turns out that he spent his residency at Baylor and Texas medical center, so he was very familiar with MDA. He also specialized in liver transplants so he had a rough grasp of what he was dealing with as far as my treatment was concerned. I got a full workup including blood and strep and flu swabs in addition to being tested for mono. They just wanted to be sure that my PTLD wasn't flaring up. Imagine my horror when I was fitted with an IV line. I had a friend who also underwent transplant who passed away at the same facility last year. She went in with a chronic cough and ended up with pneumonia.

My CBC came back relatively quickly and it showed that my red blood cells were 4.37 and my hemoglobin was 13.8. That's spectacularly normal. My white blood cells were 1.7 and my absolute neutrophil count was 1.0. Boo. Not only was I neutropenic, but my white blood cells were depleted due to my being sick. Even more surprising was my diagnosis. I had tested positive for influenza B. That's what I get for taking a chance and going out without a mask. An oncologist at my local doctor's practice was consulted and the general consensus was that I was safer at home and that they didn't want to take a chance on me catching anything else by admitting me. They sent me home with a prescription for zithromycin and tamiflu. I must have been living under a rock, because I had never heard of tamiflu and was under the impression that I'd just have to ride the flu out. The ER nurse told me that they were seeing a spike in the number of influenza B cases over the last two weeks.

I got out around 2AM and the first 24 hour pharmacy we went to was out of tamiflu. They told us that another pharmacy across town had it in stock, so away we went. The beauty of trying to get a prescription filled in the dead of night is that you don't have to wait long. In less than 5 minutes I had my pills and we headed home. By this time I was desperate for sleep and all I wanted to do was put my pjs on and hibernate for the next 10 years. Unfortunately, I had to take the two new pills and as luck would have it, they have some pretty nasty gastro-intestinal side effects. Within 10 minutes of taking them, I felt nauseated and had stomach cramps. Chris informed me that tamiflu has some other pretty nasty side effects including dementia and decreased judgement. There have been cases of people dying from walking out of windows or into traffic. Super.

So far, I haven't experienced any overwhelming need to run naked into the street or eat cat litter and for that I am grateful. I am still experiencing nausea and stomach cramps. My transplant doctor wants us to continue to monitor my temperature and should it climb above 101.5 again, Chris needs to take me to the ER. We'll probably go to Houston should this happen. My temperature has been hovering between 100 and 101 which irritates me to no end. Needless to say I feel like poo and am really hopeful that the baby stem cells don't suffer from a steep learning curve. On the bright side, my new immune system has taken a break from attacking my skin to deal with the flu virus. I haven't had any new rashes in two days, nor have my hands itched. Sweet relief.

I'm off to take my temperature and then burrow under the covers to do my best impression of a statue.

My temperature this morning was 100.6, so Chris immediately had my transplant doctor paged. She advised him to take my temperature every two hours and if it went above 101.5 I was to report to the ER immediately. The idea is to get me on IV antibiotics inorder to give my immune system a little boost. She also said that I could take tylenol, which helped with my headache immensely. Since then my temperature has hovered between 99.1 and 99.6. I also have to get in to see my local oncologist tomorrow just so he can evaluate me and put a name to my illness. It feels like the worst case of the flu that I can remember. Needless to say, I am terrified of this becoming pneumonia. It seems like so many of my transplant friends have succumbed to this horrible illness. Just for my peace of mind, I'm staying super-hydrated in the hopes that I'm giving my little cells a fighting chance. I'm also doing as little as possible, which makes me a sitting target for cat drive by's. Cross your fingers and pray that this is just baby's first cold.

Spoke too soon

I woke up this morning feeling congested and wretched with a cough. I've emailed my doctor and I've been taking my temperature through out the day. It started at 98.4 and has steadily climbed to 99.3. Chris has already warned me that if it continues to go up we'll drive straight into Houston. So much for knowing my limits.

Baby's big day

Where to start? For the first time in over a year I walked into a grocery store without a surgical mask. It was absolutely surreal to be able to look someone in the eye and know without a doubt that they didn't suspect that I'd been ill. We were careful to go early in the morning when foot traffic would most probably be light and therefore I would be less likely to be exposed to anything. It was a bit unnerving to be able to actually handle strange fruit. It should have been a short trip, but I kept wandering away from Chris to look at God knows what and we ended up spending the better part of 2 hours at Whole Foods. I ran into two friends who I haven't seen since before I was diagnosed, which was really surreal in a good way.

I still have to follow the three foot rule just to be safe and kids still make me gun shy. I will admit that I held my breath every time someone coughed or sniffled. Chris ran interference when any children got a little too close. We spent most of the day running errands, so I was ready for a nap when we got home. I had rather fooled myself into thinking that I could take a running leap and land in my old life. Today was just a small illustration of how I'm still learning what I'm capable of. I've already resolved not to push myself too quickly. Call it superstitious, but the last time I did that I ended up back in the hospital with PTLD. No thanks.

I keep forgetting to mention that my friend Caroline shared a strange little factoid with me. She was lunching with a friend who happens to be a pediatric transplant nurse and asked about my strange cravings for all things peanut butter. Apparently it's fairly common for children post transplant to develop interests in things that they didn't care for previously, like hobbies and foods. It turns out that I come by my love of peanut butter honestly. I've recently discovered that I've developed a tolerance for garbanzo beans. Who knew?

Toby, my PA, called with really good news today. There were no atypical cells in my lumbar puncture this time around so I won't have to have an extra one next month. My chimerism test was also back which is really strange since it normally takes a week to get results on that front. I'm still one hundred percent donor cells. Hooray! Snakes and snails and puppy dog tails. The EBv test was also back early and my viral load is still less than 200. That makes me almost as normal as you. The cytogenetics test is still pending and I've been warned that they could take more than three weeks. No worries.

Children's Parade

Day +252

As promised here are the blood counts from our latest trip to MDA:

WBC 3.4 K/uL

RBC 3.79 M/uL

PLT 402 K/uL

HGB 12.4 G/dL

ANC 1.96 K/uL

As for the other tests the preliminary results from the BMA were 3% blasts and it looks like Ann's new marrow is starting to kick out an increasing number of lymphocytes. That's good news because after treating the PTLD/EBV with Rituxan the number of circulating lymphocytes in her blood dropped to about half of what it should have been. Since then the number of circulating lymphs have been on a slow and steady increase. In a sense looking at the results from the BMA is like peeking at the factory floor and it looks like the baby immune system is tooled up to make up for lost time and resume normal operations. Of course these results are preliminary and the next chimerism test (PCR) and flow cytometery are still due. However, Dr. Kebriaei is very confident that we are moving in the right direction, but more on that later.

Speaking of PTLD/EBV it looks like it is toast. The high contrast CT scans have revealed that all the tumor masses and enlarged lymph nodes have dwindled down to the "sub-centimeter" range and are classified as remnants. Ditto for the abdominal lymph nodes. Our information about the amount of Epstein Barr Virus in Ann's blood lags a month because of the testing required. Last month it was below the detection threshold (200 copies/uL) and that is not expected to rise with this months sample either. Considering how scary was during the PTLD/EBV scare in October I could not be more pleased. Hurray!

Lastly we are still waiting to see what Ann's last lumbar puncture shows. This was the last one of a series she was getting with chemotherapy to prevent a CNS relapse of leukemia. For those who don't know the central nervous system is almost like a micro-environment, isolated from the rest of the body, in which cancer cells can grow, very rapidly sometimes. There they can avoid being harassed by the new immune cells, which don't normally enter the CNS in large numbers. Thankfully MDA has not identified any malignancies in her spinal fluid to date, and they don't really expect that this one will be any different.

So with the tests and medical stuff out of the way I can fill in some of the gaps that Ann didn't get to share with you loyal readers yesterday. First was the the Mardi Gras parade that MDA threw for the children getting treatment. The parade spiraled from the top of the Clark Clinic to the lobby and then back to the children's ward on the 9th floor of the hospital. The parade started with the UT Police, then a Jazz band playing as load as they could and then a procession of all the kids, their brother's and sisters and parents. The boys all had on festive masks and the girls had their faces painted. All the Doctors, Nurses and MDA Employees lined the hall ways and handed out candy, beads and doubloons to the kids. Both of us had a hard time not tearing up. Especially, when the little girl in the blue hat, riding in a little wagon smiled at us and held up her treasure for us to inspect.

I'll refrain from expressing how unfair and random I have come to believe life is and simply say that I hope she gets to live the long and happy life that all of us take for granted. I hope all of those kids do.

Next up is a favorite of mine. When we drive to MDA we normally park on the upper levels of the clinic parking garage for two reasons. First MDA is so busy that you can't hardly ever find a spot on the lower more convenient levels. Second because everything is bigger in Texas...except for the parking spots. I have seen some very determined people on the road to a trip to the body shop, because they where absolutely sure that a 6 ft wide spot spot was plenty of room to try and jam a full sized Ford F-150 pickup into.

Each and every time we park on the upper level (regardless of day or time) there sits a very lonely red Ferrari Testerossa. It's always in the same spot, but doesn't look like its collecting dust so it obviously has an owner. I can only marvel at his or her tenacity at driving a $200K super car each and every day to MDA through the obstacle course of road construction, parking bumps, crazy taxi drivers and Houston pot holes. Although I suppose it is equally possible that the initial drive to MDA was so nerve wracking that the owner has given up leaving and now elects to just garage it there rather than risk damaging it on a return trip home. In my younger days I would have thought that seeing one of these cars in the "wild" was impossibly cool. Now I think about the all interest that the owner could be earning if he/she had settled for a more practical alternative (like a Lexus or BMW) instead. I must be getting old...sigh.

One last thing. We got approval from MDA to travel. Dr. Kebriaei is now confident that Ann's immune system is strong enough to be exposed to the public in limited circumstances and with precautions in more crowed surroundings. Translation: It's OK to go out to a restaurant when it's not busy and it's OK to fly, if she wears a mask. This means we can finally get to visit our friends in New England without whom we never would have made it this far.

See you soon!

Monkey News

Day +251

It was another 7 hour return trip from Houston and the traffic jams remain a total mystery. The upside to being trapped in the car for so long was being able to catch up on podcasts. Chris has introduced me to the Ricky Gervaise show podcast and the walking enigma that is Karl Pilkington. The man is nearly indescribable and yet I will try. He is the mouth breather standing too close to you in the elevator, the creepy stranger giving you dirty looks from across a crowded room, the bathroom philosopher who ensnares you in his prat logic. I find myself gripping the steering wheel too tight in frustration at something ridiculous that he has just said, or howling out loud at an anecdote involving his poor beleagured girlfriend. The man is an absolute savant. He does a segment called monkey news where he relates an allegedly legitimate story in which a monkey does something fantastic. One of my favorites involves a monkey spa staffed and owned by chimpanzees whose clientele is exclusively made up of monkeys. Did I mention that it's in Ohio? I think I actually stopped breathing when I heard him trying to convince the cohosts that he wasn't making it up.

If you've never heard of Karl Pilkington, you'll have to google him when you have some spare time and a few brain cells to kill. It's a paradox wrapped in an enigma.

Now that that's out of my system I can talk about Houston. Tuesday kicked off at 7AM and didn't finish until after 6. First up was a blood draw and let's be honest, I've become spoiled by these longer intervals between visits. The needle stick made me want to whine and that never happens. I'm becoming a diva in my recovery. We ran into our friends, Aubry and Kelly which was a very pleasant surprise. Aubry is doing well and just getting used to life in the ATC clinic. We traded war stories and caught up on our doctor gossip.

I had a CT scan with contrast, which means you get injected with iodine via an IV. I can't remember if I've ever described the feeling and feel that I'd be remiss if I didn't. Imagine laying on a cold, narrow table covered in white paper. You're in your underwear swathed in scrubs that are either too big, too small, or a combination of the two. There's a short coil of plastic tubing connected to your IV and it mysteriously disappears off to the side of the machine. The table slowly slides back into a giant metal doughnut, exerting steady pressure on the coil. The coil that is attached to the IV which is just a hollow needle in your arm. You hear a pre-recorded voice telling you to breathe or hold your breath. Slowly, you start to realize that there's a strange metallic tang in your mouth, and your nostrils have begun to burn. You start to feel flushed and worst of all, you have the overwhelming need to urinate. It's the iodine. The nurses always advise you to stop by the restroom, even if you don't feel the need. I'll be honest, the first time I had the procedure I actually thought that I had wet myself. Thankfully, I hadn't but the experience never changes and I've lost count of how many times I've had the procedure. I suppose you can guess the iodine damages your kidneys, so you're supposed to drink plenty of water over the next few days. Always a treat.

I had a bone marrow biopsy immediately after this and for once, I remembered to bring Darvon. It's a pain killer that I'm allowed to take instead of tylenol. On the rare occassions that I've been allowed to take tylenol it's been my experience that it's superior to Darvon. Long story short, tylenol masks fevers so I haven't been able to take it. I took two darvon to mitigate the forthcoming pain and I must say it helped. The nurse was able to collect several samples of bone marrow and a nice bone fragment from my hip. Good stuff. The whole procedure tends to be uncomfortable, but not unbearable. Rosie, who performed the procedure thanked me for not wiggling around. Apparently people tend to squirm and fidget during the event. I tend to believe that the act of punching a long hollow needle into bone requires utter stillness. It's a courtesy thing.

The fun doesn't stop. After the BMB, I had 10 minutes to hustle to a lumbar puncture. It was more of a pained waddle, but hey, at least I was ambulatory. The pharmacy was late with my chemo, as usual, which made me feel bad for Jill, who performs the LP. She's always swamped since she's one of the few nurses trained to do this in the stem cell clinic. She told us that she's in the middle of training other nurses to do it, and in fact was asked if I could be a learning procedure. She cracked me up when she told me that she refused when she saw my schedule, stating that I'd already been through enough. I do love Jill. She's one of the fun aspects of my clinic visits. Believe it or not, I don't mind going to the doctor. I always get to catch up with someone and it's just nice to see that other patients are defying cancer and beating the odds.

After a lumbar puncture I'm required to lie perfectly flat for at least 30 minutes. This made me exactly 30 minutes late for my last appointment. I saw Dr. Kim, my opthomalogist concerning the GvHD in my eyes. I was on a course of steroid drops for a month which I finished about 2 weeks ago. As soon as the drops stopped, my discomfort amped up. Dr. Kim told us that my eyes were significantly better and wants me to try Restasis drops 4 times a day for a week. I already use restasis twice a day. If after a week my eyes are still bothering me, I'll start another steroid drop in addition to the restasis. The steroid this time around would be significantly weaker than the pred forte I was using before.

To recap the day, I was pierced multiple times in multiple locations, donated various bodily fluids and had paper strips stuck in my eyes. I almost forgot to mention that something strange did happen with my eyes. It actually has to do with my sight. Normally I wear reading glasses, which I lost a few months ago, and am deemed farsighted. After my transplant I became nearsighted due to cytaribin toxicity and steroids. My vision is now 20/15. Go baby stemcells. I haven't been able to see this well in forever and I'm going to enjoy every minute of it since I'm sure it's just temporary.

Today was nice and short with just one appointment to keep. Dr. Kebriaei gave me the once over and declared that my throat was red and slightly inflamed. I haven't had a sore throat, but have noticed that my post nasal drip has increased since I started using restasis. It's a drug that stimulates tear production and acts as sort of an anti-imflamatory for the eyes. Dr. Kebriaei wasn't sure if this was the sole reason for the throat issue and wanted to discuss it with my opthomalogist. She's also worried about my skin GvHD, particularly the skin on my legs. I still have huge bald patches and the skin is a bit shiny. She wants to nip it in the bud so to speak and so I'll have another visit with the dermatologist. She's also arranging for the clinical photographers to start documenting it. More fun to come.

My CT scan results were in and it would appear that the Rituxan is doing its job. My tumors are resolving and are all less than a millimeter. The node in my lung was noted as difficult to distinguish. The tumor in my sinus cavity is miniscule as are all of the ones in my digestive tract. Hooray for that! One white blood cell was detected in my spinal fluid sample which guarantees an irregular result. I should know more about this one next week. All of the other tests are still pending. My WBC/ANC counts was a little low, RBCs OK and the platelets cranked to the max. Dr. Kebriaei snickered when we shared our theory about the ublicial cord being from a future stunt man. To put the WBC/ANC numbers it in perspective, they were roughly half the numbers they were 2 weeks ago (Chris will post them tomorrow cause I'm bushed right now). Dr. Kebriaei has assured us that these things happen and are expected and that we shouldn't worry. Who, me? I have an appointment with my local oncologist in 2 weeks, so we'll see what's what.

Drumroll please...I have been given permission to stop wearing my mask in public. I only have to wear it in the hospital and in situations where I'm in confined spaces, like a plane or train. This doesn't mean that I have carte blanche to go crazy. My immune system is still comparable to a newborn's minus the edge gained from colostrum. I'm still very susceptible to infection and could very easily end up in the hospital because of a cold or virus. I'll be responsible with my new found freedom, but I have to admit, it will be nice to forego public speculation for the most part.