Thursday, November 27, 2008

Arghhhhh!!!!

My magnesium levels fell again, today. I went in for my weekly infusion of IVIG in addition to my daily IV anti-fungal and was pleasantly surprised when I was told that I wouldn't be getting magnesium. That held true for all of an hour when my lab results came back and I was woefully short of normal. What would have been a three hour day turned into a six hour day. We had to wait for the pharmacy to make the IV up, then we had to wait while it infused.

I know I can take more oral magnesium. I know I'm capable of swallowing the pills, but do you know what 10,000mg of magnesium does to your digestive system? I'm going to sit tight and plow ahead and hope that my system just hasn't managed to accrue the magnesium. If I'm still deficient when I go back on Monday, I'll woman up and take more magnesium. Until then, the three year old in me is sticking her tongue out and sulking in the corner.

Wednesday, November 26, 2008

On Monday I had to be re-evaluated during physical therapy. Sadly, my leg muscles have atrophied a little. I was told that this would probably happen when I started steroids. My therapist went through a series of tests where I would have to resist her pushing on my feet, knees, and thighs. By no means was she exerting herself, but I couldn't manage to push back. On the flip side, I managed to improve all of my other stats significantly.

I also found out that I need to bump up my magnesium intake on the same day. As you all know, I get a daily IV infusion of magnesium in addition to what I take orally. I was taking 4000mg, so I bumped up to 6000mg. I was actually feeling a little smug about it. That's twelve 500mg pills all in one sitting. Today, I was informed that my magnesium levels had dropped. I couldn't believe it! My APN let me know that they reduced the amount of magnesium in my IV infusions to see if I could get my levels up by myself. Apparently not.

As far as I know, this is the only thing tethering me to the ATC. If I can get my levels up to normal levels, then I won't need infusions and won't have to go in for treatment. I've decided to bump myself up to 10,000mg of magnesium today. I just took twenty 250mg magnesium pills and plan on taking another twenty in a few hours. There's one side effect to taking all of this magnesium. Think Milk of Magnesia. Good times.

On that note: Happy Thanksgiving, everyone!

Monday, November 24, 2008

I've been bored this weekend--more so than normal, and whenever this happens my brain starts to turn strange things over. I could have occupied my time with any number of activities like knitting that baby gift for my friend Heather. (I keep promising myself it will be started and finished before the baby gets here.) I have a book that I picked up to read during transplant on the recommendation of another patient's blog. The spine isn't even creased from being opened. I expressed an interest in learning Vietnamese right before transplant number 2 and fabulous husband that he is, Chris surprised me with a computer program promising fluency in a matter of weeks. Slacker that I am, I've only done 2 lessons and can fluently say cat, dog, and airplane. I'm fluent in a few other phrases involving food, drink, and profanity, but I learned those growing up in a bi-cultural household.

So what did I do all weekend? I honestly couldn't tell you that I did anything physically taxing, but I did do a lot of thinking. Nothing terribly deep, I promise.

I've been obsessing over something for weeks and I can't keep it to myself any longer. Three days a week, I go into ambulatory treatment to get an IV infusion of magnesium and an anti-fungal medicine. A few weeks ago I was in one of the restrooms and noticed something strange in the trashcan. I know it's a bathroom, so one's definition of strange waste could be anything. It was an oatmeal raisin cookie wrapper. You've seen them in vending machines in all of their purple and white glory with a small illustration of a rosy cheeked grandmother offering a tray of sweets. My first thought was, "Who eats in the bathroom?" Then I dismissed myself for being silly. Of course someone just tossed the wrapper in as they were walking by.

Now I'm convinced that someone is eating cookies in the bathrooms. I've found wrappers in every bathroom over the course of a few weeks. No, I am not rooting through trash for evidence or making excuses to go potty. SOMEONE IS EATING COOKIES IN THE BATHROOM! Who goes into a public restroom and cannot wait to rip into a snack? How low must your blood sugar be that you can't wait to step into the hall to have a bite? What is this person thinking? It's driving me insane. Is someone a closet eater? Are they hiding a dirty little secret? Could they find a better hiding place for their habit? Am I just being weird in that I object to consuming food in any bathroom?

Told you I was bored.

In other news, my liver biopsy results are back. The preliminary findings point toward injury related to medication I was taking. The unofficial official word is that it's not GvHD of the liver. It's unofficial because a panel of pathologists has to review the evidence and sign off on it, but my doctor is pleased. So am I. My liver enzymes continue to fall closer to normal levels, so I'm headed in the right direction.

I had physical therapy today and my PT is trying something new. I'm doing progressive sets of exercises rather than repetitive sets. This means that the difficulty of the exercise increases with each subsequent set. Let's just say she handed me my flat heinie. It kicked my butt, but in a good way. I look forward to being sore tomorrow.

Saturday, November 22, 2008

I had to wait 24 hours before laying eyes on the incision left over from my biopsy, and to be perfectly honest I had a bit of trepidation. The bandage was a piece of tegaderm stretched over a piece of gauze which caused me to hold my neck at a strange angle due to placement. I wasn't sure if it was the bandage or the incision causing so much discomfort, hence part of my anxiety.

When Chris peeled the bandage off I had instant relief from the pressure in my neck and shoulder. When he didn't recoil in horror, I suspected that I didn't have anything to really worry about. The incision is a little over a centimeter long and placed just above my shoulder blade on my neck. It really only looks like a flesh wound and shouldn't leave a scar.

Thursday, November 20, 2008

I had the liver biopsy this morning and all is well. My neck is sore and I'm sure it will be for a few days. I only have one appointment tomorrow and that's just for a CBC.

Wednesday, November 19, 2008

I had my biopsy evaluation today and got a detailed description of what's going to happen. Look away if you're squeamish.

About an hour before the actual procedure, I'll be sedated (hooray!), then a small incision will be made in my neck, accessing my jugular. A guide wire will be threaded into the jugular, then a needle will be threaded over that. The wire will be removed and a catheter will be inserted over the needle in my neck.

Here comes the good part. The needle/catheter will be threaded down my neck, through and down my heart until it accesses a small vessel adjacent to my liver. The needle makes a small punch and the whole contraption is fished back up and out of my neck.

I've been assured that this is much safer than going through the abdomen and taking a punch of the liver. Since I've had so many catheters placed in my chest/heart, I suppose I can be a bit blase about this.

My transplant team has taken pity on me and cancelled my ATC appointment tomorrow. The original plan was that I would have the biopsy, then go and get my IV meds. The actual biopsy should only take an hour to perform, but the recovery time is something like four hours. I have to have my head and neck held at a 30 degree angle during recovery. I'm sure I'll just sleep through that bit. I've been warned that there will be some discomfort. Really?

Imagine having to go from that to hanging out for another four or six hours while you get an IV infusion. I still have to have the infusions, but I can do that using intermates at the apartment.

I did have to pay the price for having the day off tomorrow by having an extra long day today. Normally, I get IVIG on Thursdays. I had to have it today, instead. This meant an extra three hours tacked on to my day. This made for a thirteen hour day. On the plus side, or not depending on how you feel about it, I got to skip physical therapy today. Who doesn't like a little break from working out?

Now I have a little bit of irony for everyone. My liver enzymes have steadily been climbing for the last two weeks. This is what has led to a tentative diagnosis of GvHD of the liver or Venno- Occlusive Disease. Take your pick. A third option is trauma caused by medication. This last one was ruled out because I stopped taking the likely culprits and my numbers continued to climb.

Today, my transplant doctor made a special trip up to the ATC just to see me because I won't be around to see her during rounds tomorrow. Have to love a doctor who will take time out to do something like that just for you. She started out by telling me that we definitely want to do the biopsy tomorrow and she reassured me that it wouldn't be a big deal. My words, not hers. Here comes the irony: my liver enzymes have come down. One of them significantly. Liver toxicity from medication is once again the front runner for what's going on. I have to have the biopsy just to rule everything out. Ha ha. Believe it or not, I really do find this funny.

I can never do things the easy way. At least I get to look forward to a really excellent drug induced nap tomorrow.

Tuesday, November 18, 2008

Just a quick update to let everyone know what's going on.

My transplant APN called today to let us know that I have an appointment to be evaluated tomorrow for a liver biopsy. If that goes well, then I'll have the actual biopsy on Thursday. I've been warned that it will be a long two days.

I'll post more about what the procedure involves after I learn more tomorrow. It's been roughly described to me, but until I know more, I don't want to freak anyone out.

The steroids continue to do their job for my other GvHD symptoms. My joints feel less stiff and the spotty patch of skin on my calf continues to improve. My only complaint is that the steroids fuel my appetite and I'm eating like crazy. It's also still keeping me up. I have a prescription for ativan to help me sleep and I'm using it judiciously. It manages to put me to sleep, but I always pop awake a few hours later, unable to go back to sleep.

It's only been 11 days since I started taking steroids, but my glucose levels remain manageable and I've only had to give myself an average of one insulin shot a day. It's not so bad, but I have to remember to space my meals out so I don't spike my numbers. It means that I have to snack on a schedule. Such is life.

Saturday, November 15, 2008

I've started to develop that delicious moonpie face that is a result of taking steroids. The chipmunk has landed.

My skin and joint GvH seem to be getting under control. I find my joints are more flexible and less painful.

The team continues to be concerned about my liver numbers. The trend continues to go up. As a precaution, I've been taken off of one of my antifungals to see if this might be the culprit versus GvHD of the liver. If it does turn out to be the medication, this would be the first time that it's given me problems since I started taking it almost 2 years ago. The team is going to check my numbers on Monday to see if there has been any improvement.

If my numbers continue to trend upward, then I'll have a liver biopsy to confirm GvHD. The next step would be photopheresis to get it under control. It would involve being hooked up to a machine for hours at a time while my cells are circulated out of my body and treated with light therapy, then replaced. That's just a rough description. There's a lot more to it than that.

I'm still getting used to checking my glucose and all of the new meds. The steroids keep me up at night, so sleep has become something of a fantasy. I can manage 2 or 3 hours before I'm wide awake waiting for morning. If I'm really lucky, I can manage a 30 minute nap during the day. I've got a prescription to help me sleep, but it doesn't do much and I don't want to be on anything stronger.

I plan on vegging for the next two days, so things will probably be quiet around here.

Tuesday, November 11, 2008

I forgot to mention a few things yesterday, so I'll do my best to fill in the blanks today.

Three of my liver enzymes continue to be elevated and since this is happening in conjunction with my other GvHD, there may be a chance that I have GvH of the liver. I've started taking a medication to protect my liver for the time being.

There is a strange brown scaly spot on my left leg which Dr. Hymes thinks is definitely GvHD of the skin. I have to keep moisturized to help keep things under control.

I've been testing my glucose levels all day and just befor dinner I went above acceptable levels. I ended up giving myself an insulin shot and it wasn't so bad. I'm going to have to remember to stay on an eating schedule to avoid crazy fluctuations in my blood sugar. Chris has stocked the house up on healthy, portable snacks that I can carry with me while in clinic. I still need to do a bit more research on how to handle the situation. I'll save that for tomorrow.

I know that there's a dictionary's worth of information that I'm forgetting, but my brain is still getting adjusted to all of the new chemicals, so you'll have to bear with me.

Monday, November 10, 2008

It's been a long day and I'm really tired, so this is going to be a short one.

I had my regular appointments today and those all went well. I also had an appointment with the GvHD clinic. The long and the short of it is that I am definitely presenting with signs of chronic GvHD of the joints. I've been taking steroids since last Friday and will continue to do so for the next few months. The diagnosis on my facial rash was a bit more ambiguous. It might be, it might not be. That's how it happened last time.

I also had a meeting with a nurse about diabetes education. The steroids might make me temporarily diabetic, so I'll have to test my insulin levels multiple times throughout the day. I've been prescribed an insulin pen just in case I need to start injecting myself. It's only been the first day, so I can't really say what will happen. My pharmD suspects that I will become diabetic based on today's readings. I'm annoyed to say the least as this is just one more ritual I have to remember.

I'll post more in the next few days, but right now, I'm just too worn out.

Thursday, November 6, 2008

While sitting in clinic yesterday, my forehead started to itch. Of course, I didn't think anything of it when I reached up to scratch it. Gasp! Yes, I scratch in public. It turned out to be not so innocent. My forehead was covered in tiny bumps and as the minutes passed, they began to appear down the right side of my face. The long awaited rash had appeared. My new immune system was picking a fight with me.

When I showed Chris, he smiled in relief. He's been anxiously awaiting the appearance of GvHD and what could be better than a little rash. By the time my APN saw me, the rash had wrapped around the left side of my face and it itched like you wouldn't believe. Much to my relief, she refused to take a biopsy because it would have meant a scar on my face. She's a woman after my own heart. I was advised to apply hydrocortisone cream to it to help control the itching.

Today, I had the opportunity to see my transplant doctor and I'm not entirely sure, but I think she was a little excited by the appearance of the rash. She noted that I was presenting the same way I did last time around and that she wanted me to see the resident dermatologist GvH expert.

As she was leaving the room, Chris blurted out that I couldn't press my hands together like a regular person. This is something that we discovered when I first started physical therapy. My joints are stiff and my range of motion is a little limited. I really didn't think anything of it, but Chris suspected that it might be another form of GvH. He was right. My doctor put me through a range of motion tests and concluded that I'm presenting with classic symptoms. She's scheduling an appointment with the resident chronic GvHD expert to have some statistics and photos taken. As it happens, the resident expert is also the doctor that performed my first transplant. It'll be nice to see him again.

It's not official, but it looks like it's heading that way. Just as a caution, I'll be starting oral steroids and another anti-viral medication since I'll be really susceptible to CMV. I also have to start taking an antibiotic regularly, since the steroids suppress your immune system. Another little gift is that the steroids might make me diabetic. I'll be tested regularly and if need be, I'll start insulin. I'm hoping not.

In a nutshell, I'm an itchy, stiff little mess.

Tuesday, November 4, 2008

Special Election Update

Day +59

Posted below are Ann's current counts and trends (counts in blue and trends in red). As you can see the UTI/BK Virus that has been bothering her seems to be letting up. Her WBC count and ANC have (I think) started to trend downward. What's more is that she is symptom free and hasn’t had any low grade fevers for over a week now.

OK, OK, I know normal people look at graphs and your eyes go all-crossed, but for me there is a certain serenity in seeing the world in a nice organized and easy to understand chart. I guess I could dissect each of these for you and give my conclusions for them, but it really all boils down to the same thing. Ann's graft is healthy and doing what it is supposed to do...which is make blood cells, and lots of them but not faster than a healthy human should be able to.

I would like to say I'm particularly interested in the ALC (Absolute Lymphocyte Count ) Chart, because it shows that this graft is doing something the "Jet Li" Umbilical Cord never did very well, which is make lymphocytes. Those are important, because unlike neutrophils, which primarilly respond to bacterial and inflammatory processes, lymphocytes are the portion of the immune system that tell good cells from bad. If anything is going to waste any remaining leukemic cells in Ann's marrow then these are the guys that are going to do it. Still, time is going to have to tell if they will recognize the monster for what it is.

In other news, Ann has been doing physical therapy and I took some pics of her rocking out on her ipod while sweating her butt off. She's a little shakier than the first transplant, but just as determined to get out of here. Enjoy :)




So today is a historic occasion and I hope everyone out there went out and did, or is going to do their civic duty. Take a moment to reconsider the candidates....
I don't think anyone could argue with Conan's position on the war on terror, which he aptly summed up when he accepted his nomination,
"crush my enemies, see them driven before me, and to hear the lamentation of their women"
However he shocked his base by choosing the "folksy" and less seasoned Swap Thing as his running mate. Who can forget the horrible interview Swamp Thing gave to Katie Couric, when he was asked about foreign policy which turned into a stumbling diatribe on Putin flying over the swamp, then osmosis and finally the importance of photosynthesis. Then there are the Tina Fey skits on SNL...less said about them the better. I think it's fair to say that many are not yet convinced that Swamp Thing is ready to assume to role of commander in chief should Conan be killed by Thulsa Doom and his snake cult.

On the other hand we have Admiral Ackbar and Jar Jar Binks. Ackbar has had to weather something of a scandal for the last couple of months because he continues to use the formal title "Admiral" even though he resigned the New Republic Navy shortly after the destruction of the second Death Star. Several have commented that Ackbar's curriculum vitae is paper-thin and he has not offered a concrete way to "change" course. He also appears to be slighlty jumpy, more than once he has blurted out, "IT'S A TRAP!" when surpised by a question from the press.

However, Ackbar's shortcomings pale in compareison to his running mate, whom he allegedly chose because of his years as an incumbant in the Galactic Senate in the gerrymandered seat from Naboo. Senator Binks is described in a vairiety of ways, " the gift that keeps on giving" by the opposition, "mildly amusing ... quickly annoying" by the press, and finally "the guy that almost killed the franchise" by the voting public. There is wide spread speculation that he has suffered a serious and non-operable brain injury as a child.

But despite your candidate and party...get out there and vote.

Sunday, November 2, 2008

I'm posting from Chris's computer, so it's going to look like it's from him. It's Ann, I promise.

My symptoms seem to have resolved and I'm feeling much more comfortable. I'm hoping to be able to get off the medications that I was prescribed to help with the symptoms. It's just one more pill.

Things are quiet and I don't have much more to report. I have clinic tomorrow and last week's test results should be in.