Friday, February 29, 2008

I've diagnosed myself and have decided that I have a cold. If I'm remembering life before treatment correctly, this is what it feels like. Chris suggested that I let my transplant team know just so that they're in the loop, so I emailed them and thought that would be the end of that. I got a call this morning from my new PA (Toby, I will sincerely miss you), with questions about my symptoms. She expressed concern that it might be a flare up of the flu--the fates couldn't be so unkind--and wanted to discuss her concerns with my transplant doctor. They decided to call in a prescription for Z-pack and I'm to start it immediately. I'm sure this weekend's blog will be titled "Tummy trouble" as a result.

I am supremely happy to report that nothing else of consequence appears to be happening in my life, unless you count the minor kitchen accident I had the other day. It involved a slippery pear and a vegetable peeler. I managed to cut off part of my thumb nail above the matrix and it looks gnarly. I'm also experiencing a major flare up of GvHD from head to toe, but that's par for the course

I'm off to pick up my prescriptions. Let's hope the pharmacy has had enough time to fill them.

Wednesday, February 27, 2008

What should I write about? I've been turning this question over in my head all day and still haven't made any decisions.

My dear friend Tina had a death in the family and that's been on my mind all day. During highschool her house was like my second home and her family is absolutely amazing. Her mom is hilarious and the kind of mom you aspire to be. Her dad also has a wicked sense of humor and could keep you rolling in the aisles with his observations. She's got three sisters and they're all beautiful people. My heart goes out to them and I just wish I had the words to offer comfort.

There's been a lot in the way of politics in the news, but I promised myself that I would never blog about it. Locally, there was a meeting in town to decide whether the populace at large would allow an interstate loop to be built. This has been voted down so many times, I'm surprised that they still try. Dixie and I had a very animated conversation about it which was brilliant because it made me feel like a functioning human being.

I don't know if it's this disease or the treatment or some combination of the two that robs a person of the ability to reason. I'll admit, I've made my share of questionable decisions since this all started and I chalk it up to the chemo. I've been lucky in that I've been surrounded by people who love me and are looking out for me. The first time I was able to string together a cohesive argument was a very big day for me. Of course, I still forget the names of common everyday things which sometimes makes conversations peculiar. I took me two days to remember the name for laxatives. No, I didn't need them, but it made telling a funny story rather sad and trying.

I've been thinking a great deal about Dixie's friend who has relapsed with CLL. When I was first in Houston getting treatment, she and Dixie came down for a visit and she was so careful to be sure that I was shielded from any exposure to germs that she might have been carrying. Now I bang my head against the wall in frustration because she's not taking the same care with herself. She's had fevers for two weeks and even when they reached 104 her doctor told her not to worry and that she didn't need to go to the emergency room. Friends persuaded her that she did need to visit the local hospital and when she did, they kept her for a week without being able to discover the cause for her fevers. She was discharged a few days ago and is still spiking temperatures.

She's never had a lumbar puncture and bone marrow biopsies have never been considered. Frightening. She knows relatively little about her disease and trusts that her doctor will be able to give her five more years. I want to stand outside her house and howl in frustration. I'm sure Dixie's at her wit's end. In this day and age there are so many different options and she's still young enough to take advantage of them. I just get so flaming angry that she might be killing herself with ignorance and wish that she'd have an epiphany about her disease and get better treatment. She's been complaining of breathlessness and a few other things that go hand in hand with leukemia, but she doesn't seem to be worried about it. We've all been brainstorming to try and find a way to bring her around and the best idea that I've come up with involves camouflage and duct tape. The second best idea involved laying a trail of candy to a better doctor or treatment facility. Someone will figure it out sooner or later.

I continue to have that phantom congested feeling that may all be part of my imagination. I still don't feel like I need to take my temperature, since I don't think paranoia will register. Truth be known, there is still a lingering tightness in my throat and my coughing has picked up a bit. Granted, the weather has changed yet again, so it could just be my allergies flaring up. I'm still taking a wait and see attitude. My local doctor is out of town, so I won't see him until the second week of March. This means that I'll go 3 weeks between visits. I was told to call his office if I started to feel weird, which was reassuring in a strange sort of way. My doctor's appointments in Houston have been set for the third week of March, and I'm hopeful that by then my FISH results will be in.

So let's all wait and see.

Tuesday, February 26, 2008

Public Appearances

Day +272

Chris and Dixie have been encouraging me to try going out in public again, but I have to admit that I've been a bit gun-shy. They've been suggesting outings that they think might entice me to venture out into the big scary world of germs and viruses, including a trip to the yarn store. I had no idea Baton Rouge actually had a store specializing in yarns and notions and have discovered that there are actually two such stores in town. Gotta love the internet. So, this weekend, we made plans to go into town and check one of them out. I know Chris must love me to actually volunteer to walk into a place that just baffles and bewilders him.

I'll admit that I started getting nervous about being out and about on Monday and when Chris gently asked me when I'd like to leave the house, I put him off. I started thinking about the flu and sore throats and how I'm still coughing as a result of my last bout of germy goodness. I lost my nerve and told him that I'd do it Tuesday. Then I started to feel like a weenie, so when he asked if we needed to run any errands, I suggested that we pick up cat food. Not just any cat food, friends. Squeeze is on prescription food, so we'd have to go into town and hit up the vet's inside the Petsmart. I figured that there wouldn't be a ton of people shopping for pet supplies in the middle of the day on a Monday and surprisingly, was right.

We managed to get the food without incident until it was time to pay up. I managed to get in line behind a curious baby being held by his grandmother. He must have smelled baby stem cells and honed in on me like a tiny laser. He kept staring at me and sticking his tongue out, which was hilarious considering he was less than a year old. I tensed up, waiting for him to projectile vomit at me and pass along whatever nefarious germs inhabit babies. Luck was on my side and nothing happened. We paid our bill and returned home none the worse for wear.

Tuesday reared it's ugly head and I really didn't feel like yarn shopping. However, I did believe that life would never return to normal for me if I kept hiding in my room trying to avoid the rest of the world. I put a shopping list together and persuaded Chris to go out for groceries. Chris decided on a store that he thought might not have a lot of traffic and we were off. He was right about his choice, since there were only a handful of people strolling the aisles. The only thing that brought me up short was that everyone seemed to have a baby or toddler in tow.

I know it sounds like I'm fixated on kids and in a strange way, I am. Since day one of being diagnosed, I've been warned to stay away from any kids under the age of 12. Even the clinics and hospital have protocols designed to protect patients from exposure to kids under 12. The only time there are exceptions are when the child happens to be a patient, in which case, we're on even footing immune system wise. It would seem that kids are a favorite haunt of germs and viruses and in so being are dangerous to me.

Seeing all of the kids being pushed around in shopping carts made me think of when I was a child and it occurred to me that I was always sick. My dad used to marvel at how I would get sick at the drop of a hat. It was true. I constantly had a cold or allergies. Runny noses and ear aches were an intimate companion. I'm surprised that I survived my childhood. I'm also bitter about my baby brother never getting sick and to boot he has perfect teeth. No cavities and the worst dental hygiene. I digress.

Chris tried to reassure me with the fact that all of the kids and I were essentially working with the same age immune system. I figured that if I survived it once, I could do it again. I managed not to cringe or hold my breath when a shopping cart containing a tiny human rolled by. I even managed to be in the same aisles with the little ankle biters, relaxing my guard and enjoying being out. Then one little cutie pie sneezed and broke my resolve. That's right, I was exposed to yet another sick person by accident. He was absolutely precious even with the runny nose and I could almost forgive him for being ill, but I'm holding out. I saw the evil glint in his big brown eyes just as he drew in a giant breath and let out a viral bomb in the form of an explosive sneeze. He was taking us all down with him--no prisoners, no mercy.

I managed not to crumble into a sniveling heap and finished picking things up with Chris at my side. Now it's several hours later and my throat is scratchy and I'm a bit phlemgy. I promise not to freak out because I'm thoroughly convinced that this could be psychosomatic. I could be willing myself to catch a cold and that won't do. Chris is keeping an eye on me and I'll probably start taking my temperature tomorrow if I start to feel a bit under the weather. Now I'm going to go to bed and try to sleep it off. Sweet dreams.

Friday, February 22, 2008

I had a hard time sleeping last night because I was suffering from a heinous case of "shouldn't have done that." Chris started feeling under the weather yesterday and whenever this happens there's a major dilemna about what's for dinner. I'm happy to graze on whatever, but he feels that it's his sworn duty to be sure that I eat something balanced. He's right, of course, but I'm pretty sure a cheese sandwich and a banana constitutes a balanced meal. He, however, does not.

Since his throat was hurting, I suggested an ice cream run which perked him up considerably. I'm still gun shy about public outings after the whole flu incident, so we agreed on drive thru. He got soft serve and *gasp* I got my first fastfood hamburger in over a year. What was I thinking? I wasn't and that was the whole problem. Here's my rationale: I've been off Prograf for over a month and I've managed to survive the flu. Add to that, Chris wasn't feeling like himself and I was able to sneak it in.

It was horrible! I microwaved it for a full minute just to be sure that most microbes would die and I stripped it of all vegetation. Gag. Why do people feed these things to their children? What are we thinking? I made myself eat half of it since I was feeling guilty about actually ordering it. It sat like a boulder in my stomach for the rest of the night. My little digestive system was definitely not up to the challenge and I suffered for my own stupidity for the rest of the night.

Lesson learned. Fast food is bad. To put this in perspective, I was eating quinoa the night before. Superfoods generally grace my plate and I make an effort to eat a lot of vegetables. It's the whole cancer thing.

So there you have it. I have confessed and feel better for it. Chris is smirking.

Wednesday, February 20, 2008

Day + 265

WBC 2.7 K/uL
RBC 3.98 M/uL
HGB 12.3 G/dL
PLT 321 K/uL
ANC 1.3 K/uL

Ann had her bi-monthly blood check up with our local hematologist yesterday, and he reports that her blood work looks "pretty consistent with someone recovering from the flu". Translation: normal. There have been no fevers in the last week and Ann says that she is back to feeling she like she thinks she should. So it looks like the baby stem cells have earned their first "immunity" the hard way and she is now bouncing back.

I'm pretty sure I was exposed to her flu, because while caring for her even though she tried not to, she coughed on me a couple of times. I'm happy to report that after a week I still have no symptoms. So I am assuming that the stain of Influenza B that Ann picked up must have been a pretty mild variety, i.e. baby flu, that a healthy immune system wouldn't have trouble identifying and crushing on the spot.

Following up the good news we have a little puppy update....

We saw our neighbor with her yesterday as we came back from the doctor. The Puppy's name is now officially "Minnie" and she is now taking supervised trips out on the the front lawn for "business". Minnie currently needs lots of dilaudid just to be comfortable and can only walk for short periods of time. When she is out she has to be wrapped up with plastic wrap to help keep her splint nad dressing clean and dry. As it turns out, the Vet performed all the work on Minnie free of charge.

Friday, February 15, 2008

Chris spotted the neighbor carrying the puppy around the front yard. She was stopping every few minutes to let the puppy sniff everything it could reach and the little guy looked much perkier.

I'm still coughing and a bit tired. Those are my only complaints, though.

Thursday, February 14, 2008

Puppy Update

I just wanted everyone to know that the little puppy returned home and she is in stable condition. The Vet is reasonably sure that she will make it. I'll try to get a picture of her when she is feeling a little better.
10 minutes. That's all it took today to get my injection. What a relief! I've been getting a little bone pain in the usual places--femur, hip, and my knuckles have been aching on and off. I'm also experiencing some really crazy foot cramps. I don't think that has anything to do with the neupogen. I've gotten cramps on and off since I first started chemo and I know of several other transplant patients who have the same problem. I've been told that it can sometimes mean a deficiency in magnesium. I suppose that's pretty likely since once you've received chemo, your body develops difficulties maintaining certain minerals and vitamins. So, take your magnesium and folic acid. It's essential for your bones and cognitive ability.

I've been waking myself up at night coughing my brains out, so I'm not getting the kind of rest that I could wish for. My temperature was 99.1 this morning, and I'm feeling a lot more like myself. I still feel like I could benefit from a nap, but that's par for the course for me whenever I'm recovering from a bug. That's if I'm remembering life before leukemia correctly.

No appointments tomorrow as far as I know. Chris has a job interview later and that's all that's on the agenda for the rest of the day. I'm off to have a nap and benefit from the recuperative power of doing absolutely nothing. ;)

Wednesday, February 13, 2008

Don't stick angry

I hate to have to say it, but today's doctor's visit wasn't any better than yesterday's. The waiting room was packed and it more closely resembled an airport terminal than a place full of cancer patients, crying baby and all. We waited for a little over an hour just to get the injection. Chris finally asked one of the receptionists how much longer it would take and as it would turn out they had forgotten to tell the injection nurse that I was there. The same thing happened yesterday. They sent me straight back and I got the impression that the nurse that was going to give me the shot wasn't in the best mood.

She confirmed this for me when she jabbed the needle into my stomach. Ouch! When I was previously getting neupogen, I was always instructed to very slowly dispense the drug to lessen the burning sensation. It actually works. I'm not sure if this nurse was familiar with this fact or if she just didn't care, because she just pressed straight down on the plunger. It definitely burned going in and 8 hours later the site of the injection still stings. When it was time to remove the needle, she just yanked it straight out which caused some bleeding.

After we left the office Chris observed that she had the kind of demeanor associated with health-care workers who have essentially given up. I shudder to think of the other geriatric patients being stuck by this woman. After a life time of accumulating wisdom and taking care of friends and family, the last thing they deserve during cancer treatment is the callousness of this nurse.

Tomorrow, I have to return for yet another shot. If it appears that the same nurse will be injecting me, I'm going to offer to do it to her first, just so she can see what a horrible job she does. I'm betting she refuses. Sincerely, if it is her, I'm going to refuse the shot. I won't cause a scene, I just won't ge manhandled again. My doctor can fire me as a patient, I don't really care. He's got plenty of clients willing to put up with the practice's mismanagement. Don't get me wrong, not everyone is incompetent. I can think of at least three employees who are absolute stand-outs. Unfortunately, they tend to get canceled out by some truly awful individuals. Sigh.

The highest my temperature got up to today was 99.1, so yippee for that. We haven't heard anymore about the little puppy, but I'm really hoping that no news is good news. Cross your fingers and say a little prayer for her because it was a really big truck and she's a very small dog.

Tuesday, February 12, 2008

Small Victory

Day +257

Ann and I had just gotten back from the hematologists office and had just finished lunch when I heard a sharp howl of pain from outside. I opened the door and our neighbor's little doberman puppy was dragging itself from the street into the neighbor's front yard. A pickup was a few yards down the street, slowing down with it's break lights on. I had momentary eye contact with the driver, and we both knew what he had done. Then as I crossed to the puppy he hit the gas and accelerated for the thoroughfare at the end of our street. He escaped all responsibility for his crime a few seconds and a right turn later.

What an unprincipled and conniving coward.

The puppy was in a very bad state. There was profuse bleeding from the mouth and anus. The truck had actually run over the puppy because feces had been forced out of it and was smeared on the road at the point of impact. None of her ribs felt broken and she didn't cry when I examined her as gently as I could. Nor did she complain when I felt her head and neck for loose bone under the skin. However, her right front leg layed at an odd angel and I assumed it to be broken so I didn't touch it.

I left the dog and banged on the neighbor's door. She answered in a bath robe and looked at me bewildered, and I don't think she fully processed what was going on until she saw the little dog. Then she fell apart and started crying.

"Do you have your car"? I asked. Her husband had taken it to work, he wasn't going to be home until later tonight. The shivering little puppy obviously couldn't wait that long. "Where is your vet?", turns out she didn't have one. If you have pets you really should have a regular vet or at least know where the ones are near you.

About this time Ann had made it from the house and trotted up behind me. I told her to get our Saturn and pull it up into the front yard as close as she could. The neighbor started complaining about the dog not really being theirs, it was a stray that wandered in, and not knowing how she was going to pay for it's treatment. Like leaving it to bleed to death on her front lawn was somehow humane! News flash, if you allow a stray to come into your home and you feed it and give it shelter then you and no one else is responsible for it's well being. If you can't handle that then call the ASPCA or a pet adoption agency and they will place the animal in a good home.

As an aside Ann actually ran today! Maybe it was the adrenaline but she fairly sprinted from the neighbor's yard back to the house to get the SUV. I guess the baby stem cells are getting the upper hand on the flu and she does say that she feels "a little better today". I had to remind her to slow down (I was afraid she would fall when running). So by the time she pulled the SUV up next to me and the puppy the neighbor (Christina) was dressed and we piled in and raced to the nearest vet. Which it turns out was a huge mistake.

You see the nearest vet doesn't actually have a Doctor as part of it's permanent staff. Which was explained to us in a very "pass-the-buck" manner by the receptionist. if you have a pet and live in the Baton Rouge/Denham Springs area I would not recommend using the vet located at the intersection of Range and Florida. You apparently can't depend on anyone with a veterinary degree actually being present when you arrive.

So we headed back into the SUV and got directions to a vet, with a veterinarian on the premises, thanks to OnStar (I really can't say enough nice things about them). Ann drove like she was racing, hazards on and honking at people who must have thought we were nuts. Meanwhile the little dog's breathing had become shallower and shallower. When it turned into short pants I knew she was going into shock. As we got closer to the vet we hit more traffic and the puppy's breathing started to become labored and she lapsed into unconsciousness.

Finally we made it and I carried the little dog directly to the OR, while Ann waited in the car. The vet, a tall curly grey haired man with a very kind face and wire rimmed glasses went to work straight away checking for breaks and other trauma. IV fluids were started and the puppy's leg was wrapped up. The staff kept asking "who's dog it was" and Christina kept looking at me like I was going to jump up and say "Me! It's mine"! However, the vet kept cross examining her and she finally admitted that she had been feeding the puppy and letting it stay in their house at night. She owned up to it being her responsibility and she didn't want it to die so "please do anything you can to save it".

I don't think she is a bad person. Just that she was thinking that her and her husband don't have many resources and she was afraid that the vet bill was going to be outrageous. It's an understandable reaction. I remember thinking "How are we going to pay for all this?" briefly when Ann's problems began. She must have been thinking the same thing when the vet went on to lay out the list of problems the puppy has: probable internal injuries, possible skull fracture, broken leg, loss of blood and so on. The vet explained that they have ways of working things out, payment plans, etc. Once that was out of the way she looked noticeably relieved.

I explained to her that I needed to get Ann home, and if she needed a ride back she could call my mobile. Christina thanked me tearfully and by the time I was leaving the puppy had opened its eyes again. I guess thats a good sign, but I don't know enough about dogs, veterinary medicine or internal injuries to be a good judge.

The vet's official prognosis is "guarded", so the little dog has a chance. At least that's a small victory.
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.

Monday, February 11, 2008

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.

Sunday, February 10, 2008

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.

Saturday, February 9, 2008

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.

Friday, February 8, 2008

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.

Thursday, February 7, 2008

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!

Wednesday, February 6, 2008

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.