Wednesday, December 31, 2008

I just wanted to wish everyone a very safe and very Happy New Year!

If you make just one resolution this year, please register with the NMDP if you haven't already. Order a kit and potentially save a life. Registering only takes a few minutes and it only involves swabbing the inside of your cheek. No needles, no pain. There are so many people waiting for a bone marrow transplant and you could potentially be the one to save a life. Imagine getting to be someone's superhero and all you had to do was exist.

Susan wrote a really great article and blog post about the need. You should check it out.

I'll probably be asleep before 11pm, so raise a glass for me! :)

Tuesday, December 30, 2008

Yesterday, I had the house to myself for the better part of the day. Dixie was at work and Chris was running errands. The cats were milling around pretending not to be interested in anything outside their little spheres of being.

I managed to sit still for all of an hour before testing my knees and venturing out into the rest of the house. There are days when I've had a bad night with the knees that it feels like bone grinding on bone while walking. There have been a few occasions when I've had to prop myself up on counters just to do something so mundane as brushing my teeth.

I installed myself on the couch with some knitting and stayed put until everyone got home. It drove me crazy to have to sit still with my legs stretched out in front of me. Since we've returned to Dixie's I've been more active. I'm relearning the limits of my ability and learning when I need to rest and when I need to push myself. The learning curve isn't steep, but it can be frustrating.

Last night I managed to sleep through the night with no knee/ankle problems. Today, I feel like a whole person. I'm sure I'll over do it and pay for it tomorrow, but right now it just feels nice to be doing something.

Monday, December 29, 2008

Sorry for the lack in posting, but the internet connection has been very intermittent. Chris joked that it was like living in the 80's again. Sad to say, but I discovered that I'm addicted to the connection.

Things have remained relatively quiet save for one recurring problem. I haven't mentioned it before, but after my last visit with the GvHD specialist, I developed some serious pain in my knees. I awoke the night after the visit in agony with a throbbing ache in my right knee. It felt like I had hyper-extended it, then whacked it with a mallet for good measure. The knee was swollen with a small bruise on it. Chris applied ice to it and after a few hours I was able to sleep again in relative comfort.

Each night after, I would wake up around the same time to the same pain, except now it had hold of both knees. It resolved a few days after we got back to Baton Rouge and my doctor is aware of it. I've been able to sleep through the night with no problems for the last three nights. Last night, not so much. My knees are currently still bothering me, so Chris has ordered that I stay in bed and not move around. Easier said than done.

My doctor told me to head to the ER if the pain becomes unbearable. If I can live with it, she'll take a look at it on the fifth when I go in for a check up. I'll just wait. Until then, I'm trying not to think of what it could be or might be. It is what it is and no amount of fretting on my part is going to change anything.

Sunday, December 21, 2008

Back Home

This is a very short update as we are both dog tired and have lots of unpacking to do. We made it back to Baton Rouge last night and couldn’t be happier to be here. No doctor's appointments until the first part of January, when we will be returning to MDA for a check-up. No thinking about that for the moment.

Right now we are figuring out where to put all our stuff and planning a Christmas dinner.

Friday, December 19, 2008

I forgot to say a very big heartfelt thank you to everyone who follows our blog. Thank you for the comments and encouragement. We'll never be able to express how much it means to us and how reassuring it is to know we're not alone in all of this.

Dr. Kebriaei's nurse, Cathy, is an absolute gem and got us a copy of my labs early so we didn't have to wait in agonizing suspense. I must have scanned the pages a hundred times looking for the dreaded words "blasts present". Nothing. Thank you, God.

My WBC count and ANC is still high, but it's down from Wednesday. My lymphocytes have doubled from the last time, which is also a relief. The other counts are holding steady and my liver enzymes are mostly normal. As an added bonus, my magnesium is normal.

We don't have a definitive reason for Wednesday's numbers. Dr. Kebriaei is leaning toward the theory that it has something to do with the steroids that I'm on. She also looked back at my records and noted that my WBC count has been as high as 20 for no explicable reason. I'm just a freak of nature.

I've dodged the proverbial bullet today and can guarantee that I'll be walking around in a fog for the next month or so. I'm so relieved that I can't function which is bad news for me, since Dr. Kebriaei told us to leave Houston. She told us to get out of town and go home. This definitely caught us by surprise and since I was resigned to staying here through the new year, I made Chris go grocery shopping. There's enough food for the next two weeks. One day I'll learn the rhythm of this game and arrange my juju accordingly.
Two years ago today the first outward symptom of my cancer to make me sit up and take notice appeared. It was a small swollen lymph node on my neck just behind my right ear. Why this one little "thing" was what made me call the doctor, I'll never know. For weeks leading up to this event I was suffering from severe fatigue, migraines, a swollen stomach, poor appetite, and diarrhea. I managed to explain all of these things away with excuses like working forty plus hours a week in addition to carrying a full time load at school. I had projects galore to finish and was in the midst of finals. I worked in the retail world and we were ensconced in the holidays. It meant for a lot of pressure. Add to all of this that Chris and I were caring for a pet with terminal cancer who we were not ready to let go.

Wednesday, when I got my CBC results I was speechless. What Chris didn't mention in the last post is that my doctor put forward the possibility that I was relapsing. She was very somber and said that she was sorry. Me too.

I'm having a hard time believing that I managed to survive two very difficult transplants only to have my original cancer come back. Let me be very clear that as of this moment we don't know for a fact that the ALL is back, but as my doctor said, my subtype is very aggressive and comes back very quickly. We may know today, or we may not.

I've been feeling very angry over the last two days. I have absolutely no control over this situation and having to stand by and watch people that I love suffer through this with me is tearing my heart out. To add insult to injury, I feel really well. I'm not manifesting any outward symptoms of illness. My appetite is good and my energy levels are normal. Inside, I know something's brewing in my chemistry. My white blood cell count is rocketing, as is my absolute neutrophil count. Then there's the mystery of the blasts circulating in my blood. I want off of this ride, but that's not possible.

I took a moment the other day to think about all of the treatment that I've had in the last two years and realized that there have only been four months that I haven't had active chemo. That's a lot of chemicals saturating my organs, which makes me wonder if I'm a candidate for any more. If I have relapsed, I don't know what my options are. I'm only 105 days out from my last transplant which leads me to believe that there isn't a lot left open to me. There is only so much the body can take before it starts to shut down and to be frank, if my cancer is back after only 100 days who's to say it won't come back again more vicious a week after the next treatment.

I have labs at 11:30am today and then a follow up with Dr. Kebriaei at 1:30pm. I know anything can happen and that it's only been two days since my last labs. My numbers will either be close to what they were on Wednesday, or significantly higher. If the past is any indicator and I am relapsing, then the blasts will have increased ten fold. I have a microscopic granule of hope that I'm just being dramatic and this is all really nothing, but I'm faced with the reality that there's a reason that I don't know a lot of ALL, t(4;11) survivors who were diagnosed as adults. Truth be known, I'm the only one that I'm aware of right now.

Wednesday, December 17, 2008

Not So Fast

Here we are at Day +103, and after getting Ann's CVC pulled yesterday we were ready to get our last appointment with our transplant doc out of the way and then hit the road for home. Things don't look like they are going to be that simple his time around. After getting her blood tested this morning the results were definitely not what we were hoping for. Her white count is up to 16.5 K/uL (up from 10.5 a couple of days ago), and there are 2% metamyleocytes and 1% blasts showing.

Anytime the "b" word gets used it's gravely concerning. No less so today.

Dr. Kebriaei asked us to come in Friday and Monday to check Ann's blood. The hope is that this is some sort of reaction. Just to be on the safe side I called the people we rent our apartment from and let them know we would be staying longer. Thankfully they agreed.

I hope we don't have to spend the holidays in Houston. I'm really tried of this place and Ann is getting frustrated. We both just want a normal life again.

Monday, December 15, 2008


I am currently free of my CVC. Yippee!!! No more wiggly little bit of plastic tubing dangling in my heart. No more lumens. No more clamps to dig into my chest. Best of all, tomorrow I'll finally be able to wash that patch of skin. You have no idea how excited I am about that. Please bear in mind I was the child that had to be bathed three or four times a day because I couldn't stand to be dirty.

I'm back on oral anti-fungals today, so my fingers are crossed that my liver enzymes remain stable. I'd hate to be celebrating today only to have to have another catheter put in later this week.

I'm going to lay low for the next two days in anticipation of finally, officially being released to leave Houston Wednesday. Chris and I have started packing and are just waiting for Dr. Kebriaei to sign off on the entire affair.

Friday, December 12, 2008

I awoke sometime after midnight to a severely throbbing knee. Chris was still awake, so he took a look and found that my right knee was swollen. There was also a small bruise that I don't remember getting. I took two pain killers which didn't help. Chris put an ice pack on it and after a few hours the pain was gone.

This morning I had a little stiffness in the joint and there's still a small amount of swelling. Chris called my APN to report the incident and see what we should do. I didn't feel like it was an emergency room situation, but it was a strange enough occurrence that we both thought we should report it. My regular APN was out, but the nurse subbing for her offered to have a look at it if we wanted to come in. Since it no longer hurt I elected to sit tight.

I honestly don't remember bumping into anything, but the bruise had to come from somewhere. We'll keep an eye on it, but I'm hoping it doesn't merit anything more than a footnote.

Thursday, December 11, 2008

Chris and I were the only people who showed up for the discharge class on Tuesday. The APN in charge of teaching the class was very nice, and I'm sure she tailored the class to suit the fact that I'd already been through this once before. I only learned one new thing. You shouldn't smoke marijuana because it's not processed in such a way as to eliminate molds and fungi. You're not supposed to be around anyone who does when you're post transplant for the same reasons. Color me crazy, but I couldn't imagine wanting to jeopardize my transplant that badly. I know there are patients who live a certain lifestyle before being diagnosed and they refuse to give up certain things just because they're being treated for cancer. There isn't a day that goes by that I don't see someone pulling an IV pole behind them while smoking in the designated area in front of MDA. These are all adults who are going to make their own decisions. I'd rather do everything in my control to ensure that I'm around for another half century.

I had labs early this morning, followed by an appointment in the ATC. My liver function tests showed that my enzymes are trending back down toward normal. They're still a little high, but Dr. Kebriaei was very positive about the numbers. The bad news is that we have to stay in Houston for another week. I have to continue IV cancidas through Monday. I'll have labs drawn that morning to see what's going on. The good news is that I'll have my catheter removed the same day. I have the orders for it in hand.

I'll restart an oral anti-fungal on Monday in addition to reducing the amount of tacrolimus I take. The v-fend affects tacro absorption, which is why the team is trying to balance the two. Wednesday, I'll go into clinic to see Dr. Kebriaei to get the lay of the land and possibly finally be discharged. I don't mind being in Houston, but our funds are dwindling and maintaining an apartment in Houston tends to get a little expensive.

With everything going on today, we ended up being an hour late for my appointment with Dr. Alousi. The visit was a follow up to see what was going on with my GvHD. The rash on my face and leg have completely resolved. I have developed a small spot of skin GvH on my lower back which is slowly going away. My joints have responded to the steroids and they're no longer tight or uncomfortable. I know this could all change since I've been tapering steroids for the last month. I'll be on steroids through April of next year according to my taper schedule.

I think that covers just about everything that's happened in the last two days. I don't have anything on the books through the weekend so things should be quiet.

Tuesday, December 9, 2008

Oh Bother...

Short update this morning. I got a call from my employer this morning and I've been laid off. The projects that were on the books prior to Ann's relapse have all been shelved with the deterioration in oil prices. Not sure what this will mean to our future yet, but I've already started looking on

I think we are done with the south for good. Time to look to the west or east coast.

Sorry this had to be bad news.

Monday, December 8, 2008


I have to continue on IV cancidas through Thursday. Dr. Kebriaei will re-evaluate me then pending my liver function tests. If I'm not able to safely tolerate voriconazole orally, then I'll have to be on IV cancidas for as long as I take Prograf (immunosuppressive). Since I'm taking 7mg of Prograf daily--the most I've ever been on, then the catheter in my chest will remain indefinitely. I'm starting to suspect that I'm either supposed to be learning a lesson in patience or trust.


I had a CBC this morning and I will admit that I thought the results would be a forgone conclusion. I'd resigned myself to thinking that my magnesium levels would be low, yet again. They weren't. Well, technically, they were lower than they should be, but my level had gone up over last Thursday's results. My doctor told me if I could maintain 1.5, she'd be happy. It was 1.6 and I have to believe that the vitamin C that I've been taking had something to do with it.

Now the bad news. My liver enzymes have started going up again. One of the three that gets checked tripled over the weekend. That's bad news for me, since my team was hoping to take me off of the IV anti-fungal in order to restart the oral anti-fungal that started the whole shebang. Chris let my APN know that I'd started taking vitamin C and she said to stop. I did a google search involving vitamin C and liver enzymes. There are actually studies available on the subject and it would appear that vitamin C does impact liver enzyme levels. Who knew?

I'm in a holding pattern until my transplant doctor makes a decision on the matter. I should know something later today. I know that I can still be released to go home even if Dr. Kebriaei decides to continue me on IV cancidas. I'd get it delivered to the house in Denham and just do what we've been doing for the last month. My frustration stems from having to keep my catheter if that happens to be the case.

By no means is the catheter a hardship. It makes having blood drawn and getting infusions really easy. Unfortunately, catheters tend to be very susceptible to infections. I've been very lucky in the last two years and haven't had a problem. My frustration comes from the little daily rituals associated with having a catheter. All the lumens have to be flushed with blood thinners on a daily basis and if I have to have an infusion, they have to be flushed with saline in addition to heparin.

When I want to take a shower, I have to make a patch to cover the catheter. It's like wrapping meat. I have to tape cling wrap over my chest and hope that I've created a good enough seal to keep water out. You never know how well you did until after you take the patch off and check for moisture. I have permanent red marks on my chest from the tape that's used to hold the plastic to my skin.

There are weekly bandage changes to contend with. Chris has to clean and sterilize the catheter once a week. It usually takes half an hour and there's a small amount of discomfort associated with swabbing the stitches and insertion site. The catheter site also tends to get itchy and I can't scratch it.

The lumens hang down really low thanks to the new caps MDA is using. The tube clamps are also a bit on the large side and dig into my chest when I sleep, since I'm a side/stomach sleeper. It's just a lot of small things that are starting to add up. I have a catheter scar on each upper arm and on the left side of my chest. When my current catheter comes out, I'll have a fourth scar. At least I'll be somewhat symmetrical.

When I step back and look at the big picture, I know I'm very lucky. I've had minimal problems, PTLD and relapse aside. I'll post more as soon as I know what the game plan will be going forward.

Saturday, December 6, 2008

I only had one appointment yesterday and it was late in the afternoon, so it was hard to get motivated and moving. It was for complete pulmonary testing and if you've never done it, you don't know what you're missing. You get to sit in a sealed booth and run through a series of breathing exercises. My favorite is the one where you have to pant into a tube then expel all of the air in your lungs. I find it to be a very unnatural action, but I've had so many CPT's that I can do it like a pro. I finished the complete series in under fifteen minutes. The tech told me I was a pro. This may be my new calling in life. If only I could find someone to pay me to breathe.

I passed with flying colors, so that's one more positive tick on the discharge checklist.

I have to go in for a blood draw on Monday. The plan is for my transplant APN to call me as soon as the test results are in to let me know what the plan for the rest of the week will be. Not surprisingly, my magnesium levels will dictate what happens. I haven't had a magnesium infusion since Thursday, so I'm a little on edge about it. I've done some research and found that vitamin C is supposed to help with magnesium absorption.

Chris picked up some chewable vitamins yesterday and I've been dutifully consuming them. Sadly, they aren't anything like the Flintstone's chewables of my childhood. They taste like sickly sweet orange juice squeezed from evil oranges. Oranges that have gone over to the dark side and are reaping revenge for their citrus bretheren. I can't stop myself from making crazy faces every time I eat one. Chris tried one and pronounced it disgusting. About five minutes later he ate two more. I didn't even have to dare him.

Thursday, December 4, 2008

We had another long day at clinic today, mostly spent waiting to see my doctor. I didn't get cut loose due to...low magnesium. It actually went down a little, again. I've been advised to bump my consumption up to 12,000 milligrams a day. Hello imodium. My doctor also speculated that I might just be one of those people who needs to absorb the mineral through food. I've been eating cashews on a daily basis to help bump up my levels, but now I'll have to plan menus around foods that are high in magnesium. Unfortunately, these are usually foods that bring out the picky eater in Chris. Rather, I should say that the foods that appeal to me definitely do not appeal to Chris. Think dark, leafy greens like spinach and collard greens. I'll just have to eat the lion's share on my own.

The good news is that the list of foods is pretty extensive, so we'll figure it out.

My doctor is anticipating letting me go late next week. She also mentioned taking my catheter out after we get everything in order. I'm all for that. Since we were planning on staying through next week I'm not disheartened about the delay. At least I'm still here planning ways to cause trouble for the world at large. :)

Tuesday, December 2, 2008

The discharge nurse called me today to inform me that Chris and I have to take a discharge/departure class before we can go. I find that ironic considering I've already had one transplant and managed to survive on the outside for a year before relapsing. Apparently it's a new requirement. I imagine it's like having to go to traffic school.

We're scheduled for next Tuesday morning. I'll do my best not to be a problem student.

Monday, December 1, 2008

I had a bone marrow aspiration/biopsy this morning and all went well. The preliminary results just came in and the most important thing is that I'm only showing 2% blasts. Normal is between 0%-5%. Woohoo! There are other tests pending that won't be in for a few weeks. Now we just sit and wait.

My APN let me know that I'm tentatively scheduled to be released from the ATC on Thursday. They surprised me when they cut me loose with the last transplant. I remember tearing out of the ATC to pack up the apartment and escape from MDA. This time around we're going to take a little more time. I have a complete pulmonary function test scheduled for Friday and an appointment in the GvHD clinic the following Thursday. I'm really hoping that an appointment to have my catheter removed magically appears on my schedule between now and then. It's not that I mind getting IV meds and let's face it, if you have to have them, not getting stuck in the arm is the way to go, but I'd really like to take a shower without having to place a cling film patch over my chest.

I started tapering my steroids over a week ago and I'm scheduled for another taper this Friday. So far, so good. I haven't had any GvH flares. I've managed to get my snacking under control and kept the weight gain to a minimum. Just two pounds, so far. I thought it would be much worse. So much so, that I dreaded putting on my "skinny" jeans. With much dread I put them on yesterday. I shouldn't have worried--the muffin top was minimal.

The magnesium situation is still a small problem. It went up a little, but not nearly enough. My APN doesn't want me to increase the amount I take because of that annoying little side effect that involves planning my days around the nearest bathroom. We're going to wait and see what the numbers are on Thursday. My fingers and toes are crossed.

Thursday, November 27, 2008


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.

Friday, October 31, 2008

It's day +56 and I'm doing my best to be patient. I'm ready for day +100 and the removal of my catheter.

As of now, I still go to clinic three days a week and on my off days, I get hooked up to an IV of magnesium at the apartment. I have a little pump that fits into a shoulder bag along with the bolus. I constantly have to remember to pick it up and move it whenever I get up to do something.

I started physical therapy this week and it was pseudo torture. My lower body is stronger than it was with the last transplant, but my back and upper body are weak. My PT from the last go round commented on how much weaker I was. She was honestly surprised. Chemo can do that to you. My first day of therapy included an evaluation and the second day was abbreviated because I got too worn out to complete the full twelve exercise circuit. I'll build up to it. For now, I'm just sore from the workouts.

My BK symptoms continue to improve and I'm able to sleep for longer intervals at night. There's not much more going on in my world right now. I'll post again in a few days, even if nothing is going on.

Tuesday, October 28, 2008

Ever since this entire affair started almost two years ago, I've been passing the time looking forward to small milestones. They can be anything that I thought I might never be able to do again; events that are large or small.

This past Sunday, Chris left me laying on the couch to go do some laundry. I must have fallen asleep, because an hour later he wasn't back and the facility is on site. I was preparing to take another nap when the doorbell rang. I found Chris standing on the other side of the door holding a birthday cake. He'd snuck off and surprised me.

So, I managed to live to 34 and I'm looking forward to 35 plus 30 or 40 more years.

Monday, October 27, 2008

The last specimen I donated to MDA has yet to grow any bacteria. And yet, I still have symptoms. What's a logical girl to do, but assume that its viral? That's not the official word, since those results aren't back, yet.

The culprit may be the BK virus which lurks in everyone's bladder. Why this little critter would want to hang out in a receptacle for the body's waste, I don't know. The symptoms mimic the worst urinary tract infection you've ever had with extra symptoms. There's blood in the urine and you express blood clots through your urethra. Skippy.

There's nothing that you can treat it with. You just have to wait it out. My rounding APN told me I was lucky that I wasn't on steroids, since it would be much worse. Lucky me.

I should know for sure in the next few days, but I'm fairly certain on my own.

Friday, October 24, 2008

I had to go in to clinic to get another dose of amikacin. I can't lie, this stuff makes me feel funky. Last night I woke from a sound sleep vomiting violently. Luckily, I managed to propel myself over to a receptacle before I did too much damage.

My pharmD let me know that the new specimen hasn't grown anything yet, but they were able to see lots of lovely bacteria on a slide. Good times. She also hinted that we might need to extend the amount of time I'm on cipro. I'll do whatever it takes to knock out this infection, but I seriously wish that it would just resolve itself sooner rather than later.

I have the next two days off and plan on watching scary movies with Chris. Monsterfest, here I come!

Thursday, October 23, 2008

After nearly a week of being on cipro, I still have symptoms of my infection. It's not very comfortable and when I spoke to my transplant doctor and pharmD, they both agreed that it was time for an IV antibiotic. I got a dose of amikacin which I'm really hoping takes care of things. My pharmD will be checking in with me tomorrow morning to see if my symptoms have gotten better. If not, then I'll have to go back in and get another dose of amikacin.

There is another theory making the rounds about why I still have symptoms. My doctor is starting to suspect that there may be a virus lurking underneath it all. It's a virus that everyone has that's not harmful to people with a healthy immune system. It's a new one for me and I'm hopeful that it's not causing me problems. New specimens were drawn and we'll know next week.

Wednesday, October 22, 2008

I forgot to ask about the missing test results today, so I'll have to do it tomorrow. Things are moving along and I've been prescribed another medication to deal with the bacterial infection. I was given the warning that it would turn my urine an electric orange. Let's just say that I was glad for the heads up, because I couldn't imagine my own reaction when faced with pumpkin colored urine. I know the phone call would have been frantic.

I'm scheduled to see Dr. Kebriaei tomorrow and I have a few questions for her about various and sundry things. We'll see what we see.

Monday, October 20, 2008

We had clinic today and the results for one of the tests came back positive for a bacterial infection. I've been prescribed Cipro in addition to the Z-pak I'm already taking and I'm hoping that this will clear it up. I'll have to wait until Wednesday to find out about the other test. My temperature continues to fluctuate, but we're keeping an eye on it.

Sunday, October 19, 2008

I awoke Friday with a low fever and generally feeling run down. I was mildly congested and a little phlegmy. Doing due diligence, I left messages for my clinical APN and transplant doctor. My APN was the first to return my call and after hearing my symptoms, she arranged for us to come into clinic to have a nasal wash and throat swab done.

For those of you who have forgotten what's involved in a nasal swab, let me remind you. While you tilt your head back and hold a nostril closed, a nurse inserts a syringe into your open nostril and injects saline until it starts spilling back out. At this point, while desperately trying not to swallow, you have to blow the saline back into a small container. This is repeated on the unabused nostril and the sample is obtained. Did I mention you have to be wrapped in a towel because it makes a runny mess?

Considering that I had thrown up that morning, I think I handled the throat swab pretty well. The poor nurse looked nervous as she collected the sample. Of course I gagged, but I managed to keep everything down.

A urine sample was also obtained for good measure.

All of the test results should be back by Tuesday. In the mean time, I was prescribed Z-pak and tamiflu which I dutifully started on Friday. Chris was convinced that I'd end up in the hospital because my temperature was hovering around 99.9 F. It's just a short jump to 100.5 F and it happens faster than you know. I've been lucky so far in that my temperature has dropped to between 98.6 F and 99.5. It fluctuates all day long which can be unnerving when you're doing your best to stay out of the hospital.

I'm feeling better than I was on Friday and I'm hopeful that this explains my crazy blood numbers. I'm also looking forward to talking to my APN on Monday to get her take on what's going on. I'll take the flu any day over the worst case scenario.

Thank you to everyone for leaving comments. It's helped me more than you know.

Thursday, October 16, 2008

Cause for Concern

I haven't posted Ann's labs in a while and I wish I had better ones to post.

WBC 13.7 K/uL (4.4 - 11.0)
ANC 11.15 K/uL (1.7 - 7.30)
PLT 203 K/uL (140 - 400)
RBC 3.34 M/uL (3.5 - 4.4)
HBG 10.9 G/dL (13 - 15)

The problem is pretty clear isn't it? Because Ann's neutrophil count is too high, she is now in a state called "neutrophilia". Considering that neutrophils are the potion of the white blood cell population that defends the body against bacteria and fungi, you would expect that Ann would show some symptoms of being infected with either of those. Namely a fever, a cough or something like that. However, her temperature has remained nailed in the 98's (F) with only minor variations, and she has had no real coughs or respiratory problems to speak of.

So whats gong on? Could this be a relapse? After all this is starting to paint a similar picture to what Ann's counts were before we had to come back to MDA. However, Ann's chimerism tests (performed on 10/6) did come back today and the result is that 100% of her T-cells and 100% of her meylod cells are from her donor. Also the bone marrow biopsy results from a week ago reported that the pathology, PCR and FISH tests were all negative for leukemia. However, our doctor will admit when pushed that these results don't necessarily mean that a early relapse is impossible...just that its unlikely.

Rather than focus on the worst I have formed a working theory, which I'm going to hope is right in this case. Since the conditioning regime Ann has had a "inside-out" sunburn. Where the innermost layers of skin suffered damage from the chemo and the dark patches have become more apparent as the upper layers of skin are worn off. This is essentially a chemical burn, and Ann says it itches as it begins to peel. Neutrophils can be stimulated by tissue necrosis, like damaged cells from chemo or burns. In addition Ann just recently stopped taking oral cellcept (immune suppressant) this Saturday.

When Ann relapsed last time it was in the presence of not just an elevated neutrophil count, but a constant and chronic low grade fever as well, which she doesn’t have this time. Her blood work also shows a high percentage of monocytes (the body's clean up crew). So I'm theorizing that the elevated neutrophil count is a response to the chemo burns and dead tissue left behind from the transplant, and is appearing now that some of the immune suppression has been discontinued.

Sounds good...and I hope I'm right. I didn’t get to ask Dr. Kebriaei about this (formulated it after clinic), but when I did ask her what was causing the neutrophilia she basically said she didn’t know. She did however, point out that we have "lots to worry about and we should enjoy our time while we have it". Needless to say that felt like a giant bucket of cold water being dumped on both of us.

Neither of us said much on the walk out of MDA, as we both felt shell shocked and demoralized. When we got in the car I made an obligatory phone cail to family to let them know what was going on. During which my Mom asked Ann what was going on. Then Ann recited what Dr. Kebriaei had told us for the first time out-loud, and tears began to well in her eyes. I stopped the car and held her as tightly as I dared without damaging her central catheter.

"That hurt saying out loud" she choked into my shoulder.
"I know. I'm sorry."
"We've just fought so hard...I don't want to die!"
"We aren't giving up...ever", I said.
Then I kissed her, and tried to let her know how completely I love her.

Monday, October 13, 2008

Today's clinic visit was fairly routine. I needed a unit of blood due to low hemoglobin, so it was a very long day. The only surprise was that my tacro level was elevated yet again. I have to hold tonight's dose and reduce my daily dose to 1mg a day. Crazy, but it's two less pills to take.

I have tomorrow off and as of right now, nothing else to report.

Sunday, October 12, 2008

So, all was going well until last night when I started developing a headache. It was joined by the slow onset of nausea which made me doubly miserable. After a few hours of debating whether or not I should just give in and let myself throw up, my body made the decision for me. As soon as I stood up, I vomited. Of course this made my stomach feel better, but worsened my headache.

I'm not sure how I should view this little incident since it's been a week and a day since I last vomited. Could it have been something I ate? Maybe. Unfortunately, even after giving in, I was still nauseated and every move I made was a threat to my equilibrium. Chris persuaded me to try an ABH to help the zofran do its job. I was worried that the introduction of a pill would start things up again. I managed to keep it down and an hour later was able to take the rest of my medication. The rest of the night was touch and go.

On the brighter side, yesterday was the last dose of cellcept for now. Bye-bye nasty horse pills. I will not miss them. Of course, they may be reintroduced one day, especially if I get GvHD badly enough. I'll worry about that some other time.

The chemical burn has begun to peel which makes me want to scratch my hide off. It's desperately uncomfortable when it starts to itch and its one perversion is that it itches most in public. It would look like visiting day at the zoo if I started to scratch it. Think the primate display.

I'm a bit tired after yesterday's shenanigans, so I may slip an extra nap in. My next clinic appointment is tomorrow, bright and early. We'll post as soon as we know anything.

Thursday, October 9, 2008

I had my weekly doctor's visit today and was told that things were going well. Dr. Kebriaei is a little concerned about my constant nausea. She wants to keep an eye on it in case of GvHD of the upper GI. Wouldn't that be something?

I was also told that I could stop taking cellcept Saturday night. Woo-hoo! That would mean 12 fewer pills a day. Of course, I keep having to increase the number of magnesium pills that I take daily. Net-net, I still feel good about it.

The other news I received today was that I'll have the next three days off. That's right, three days out of the ATC. My appointments fall on three days a week, now. I'm really looking forward to getting some consistent rest. We're a little worried about my hemoglobin this weekend, since I'm still trending down. The only thing we can do is be alert and head into the EC if I start to have trouble breathing or heart palpitations. I'm sure if all goes well I'll be getting an infusion in clinic on Monday. Who knows? Maybe I'll start making red blood cells on my own this weekend.

Wednesday, October 8, 2008

Recent Blood Counts and Trends

Sorry I didn’t get a chance to post these last night. They cover the story of Ann's transplant from the beginning, all the way up to today, so you can see how her graft is reacting. Blue is the day-to-day value and red is the cellular production trend.

Tuesday, October 7, 2008

I had my very first day off from clinic today and I am happy to report that as of this minute, nothing happened. A home health company delivered a pump and magnesium last night for me to use today. I got plenty of hydration thanks to that bolus and am hopeful that my magnesium levels start to improve. The best part about today was that I got to sleep in until 8:30am. It was bliss.

I've had a little ongoing issue that I haven't mentioned before, but felt that I finally should. It would seem that one of the chemo drugs that I received--busulfan, has a nasty little side effect that manifests days or weeks after it's administered. It starts to burn your skin from the inside out and it shows up on the most sensitive skin on your body. Mine started a few days before I was released from the hospital as small clusters of dark brown dots under my arms, breasts, on my abdomen, around my groin, and on the backs of my hands. The dots quickly grew into each other and now I have large patches of irritable dark brown skin. It itches and has started peeling in places. The doctors have all assured me that this is normal and that I should be on the look out for the burned skin turning really red. This would mean a topical yeast infection. Skippy.

Right now, we're just watching it. If it progresses, then I'll be prescribed some magical creams and unguents. I'm just hoping it peels away and becomes a memory in a relatively short period of time. I've been told that it may take months.

On a more positive note, I was able to eat more today. I think it had something to do with not being held captive at the whim of food service or a lackluster cafeteria. Being able to get up and have what I wanted when I wanted it helped immensely. I also managed to keep the nausea at bay today. All in all, not bad for only being out of the hospital for a week.

Monday, October 6, 2008

Day +30

It's been a month since Ann underwent her second transplant and although things are certainly not as easy as they were the first time around, they do seem to be generally improving. Ann managed to walk from the MDA parking garage to the clinic and back, while carrying on light conversation, without too much exertion. I know that doesn’t sound like much to most of you, but its an improvement.

Ann had her first post-transplant a bone marrow biopsy along with a couple of extra vials of blood drawn for chimerism testing. Each test generates results, some of which come back quickly, other not so much, but all are delivered hot out of the laser printer, on white sheets of plain paper. I used to get the shakes and a feel the yawning pit open up under my feet every time someone handed me one of those ubiquitous cheap 8.5x11 sheets of copy paper. Things are better now with the meds, but only so at the cost of me feeling slightly disconnected. Still I can't help still wondering if the next one is going to reduce our compact little world to an even smaller dimension. Unlike loving my Wife, living in the moment is just not something I'm very good at.

The results from a Bone Marrow Biopsy are the gold-standard, big kahuna, grand unified theory of blood cancer treatment. If the marrow
is normal, which is to say has the right number of cells and they are
all healthy, then you pass. If not then you don't pass go or collect

We won't know about the chimerism test for a couple of weeks or the PCR or FISH for the marrow anytime soon. However, MDA's pathologists did manage to get the differential counts on Ann's new marrow done before we left clinic and the results are good. 1% blasts showing, with all other counts in the range for healthy adult marrow. I guess that shouldn’t have come as a surprise because I can see it in the charts I track Ann's blood work on. Which I'll post later for anyone who is interested.

Everything is nice and normal. I can live with that for the moment.

Saturday, October 4, 2008

Yesterday was a bit on the horrible side and it all started with the day before that.

I wrote that I'd started taking magnesium and on the advice of my PharmD, I took an imodium to go with it. Just the one to help with the side effects of the magnesium pills. It did what it should have, only it went one step further. Yesterday, I found myself with that horrible feeling that's so familiar. My digestive system had stopped, again. Nothing was happening.

Keep this in mind as I tell you that I got 1000 mL of fluid, plus a small bolus of extra magnesium and a bag of blood. This is all in addition to the fluid I took orally and any food I managed to eat. I'm sure that you can understand that as the day wore on, I took in less and less on my own as I found my clothes starting to get tight and my hands swelling. I also started to feel worse as the day wore on due to all of the fluids and the constipation.

We were in the clinic for 13 hours and by the time we got back to the apartment, I was a limp heap of misery. Having high hopes, I took some senokot and magnesium. I started to feel queasy and within minutes was vomiting violently. According to a nurse I once spoke with, if you're constipated and carrying too much fluid, you will vomit. She was right.

I vomited again about two hours later. Although I was physically more comfortable thanks to shedding some extra fluid, I was still miserable. Chris kept suggesting that I take some enulose, so I finally stopped being stubborn and took a dose.

I'll spare you any further details, but felt any transplant patients reading this might want to know what they could be in store for.

Today was a much better day, but I'm still feeling worn out from yesterday. It's amazing how hard it is to bounce back from the smallest things. I'm being patient with myself. I know it's just a matter of time. It's just so hard to watch the people I love watching me struggle. I'll get there, it's just a waiting game.

Thursday, October 2, 2008

Today was another hard day. I think it was mostly due to the fact that I only managed about 4 hours of sleep last night. It was my own fault, since I stayed up to watch some shows that Chris had downloaded. I'd intended to take a nap while at the ATC, but found that I couldn't sleep there, either. By the time we left at around 2:30, I was seriously failing. I had to have a break walking out to the car, which was very upsetting to Chris. He's afraid that I might be heading in the wrong direction. I started falling asleep in the car and by the time we got back to the apartment, I was too tired to pour myself a glass of water. Chris took care of me and tucked me in for a nap. I managed to sleep in one hour fits for a total of two hours.

I saw Dr. Kebriaei while in clinic today and there were no surprises. She's going to check on the whole cellcept thing and thinks that I might be able to stop at day +50. I can live with that. I started taking magnesium yesterday, but it didn't make a difference in my labs. It did cause diarrhea, though. Right now, it's just 500mg. It will steadily go up, eventually.

I'm exhausted, but I still have to take a few pills, so I'll sign off for now.

Wednesday, October 1, 2008

Chris said it was my turn to blog and I do have some catching up to do.

Last weekend, my dear friend Tina flew in from New York and I loved every minute of her visit. Sure, I hated that I was trapped in the hospital, but Tina is the kind of friend that will hold your hand and make you forget why you're upset. I've known her for twenty years and she still continues to amaze me.

She brought me trashy magazines and pored over them with me while I caught up on what was happening in the artificial world outside. She's the kind of friend who will sit quietly with you and just knows what you need, sometimes before you do. I'll just say that it was the best weekend I've had in a while and her visit was just what I needed to help me get over the hospital blues. I love you Tina, and am just so happy you're one of my friends.

I had my third clinic visit today and it was fairly routine. I needed another bolus of magnesium since all of the chemo and meds continue to deplete my body of this vital resource. The PharmD wants me to start taking oral magnesium. These are 500mg pills and she's starting me out on one a day. If I can tolerate this, ie, the resultant diarrhea isn't debilitating, they'll gradually increase my dosage. Last year, I was taking 16 magnesiums a day at one point. This wouldn't be so bad if I already weren't taking so many pills everyday. I take 16 immunosuppressants in addition to heart medication, folic acid, antivirals, anti-fungals, antacids, anti-emetics, and what ever else I'm forgetting at the moment.

I keep asking when I can stop the cellcept. This is an immunosuppressant that makes me vomit unless I can keep a high enough level of zofran in my system. I'm so serious about this that I get up in the middle of the night to take a zofran tablet. I know I have to have the cellcept to help against GvHD, but I'm also on tacrolimus for the same thing. With the last transplant, I was off cell-cept at day +30. Today, I learned that cord transplant patients now have to continue on cell-cept until day +100. Since my latest transplant was a 9 out of 10 mismatch, I suspect I'll be on this little gem of a pill for quite some time. 12 a day. Yum-yum.

I'm still having a hard time with food, but with every day, I'm able to eat a little more. The last few nights I've been waking up between 2 and 3 am, starving. It's so bad that I can't sleep and end up stumbling out of bed to eat a small container of apple sauce just to get something into my system. This is so strange since I have such a hard time eating during the waking day. I'm still having a hard time interpreting the fact that I'm hungry when I'm awake. This happened last time and I know that it will get better with time, but I never got up in the middle of the night to eat.

I put dinner off until after 7 tonight to see if I might be able to sleep the night through. My fingers are crossed. I still get up about 4 times a night for various reasons, mostly related to the loo.

I'll see Dr. Kebriaei tomorrow and I'm hopeful that I'm on track to get out at 100 days. I know any number of things can happen between now and then, but I have to take things one day at a time. I'm determined to get stronger every day and hope to start physical therapy the week after next. I'll take things a little easier this time since I'm not feeling as well as I did last time. Don't worry, I'll push myself, but within reason. Today was hard, but tomorrow will be better, as will the next day.

Monday, September 29, 2008

Rougher This Time

Ann got released from the Hospital on Sunday just like Dr. Andreef predicted she would. Today was our first day of out-patient therapy/monitoring and apart from Ann needing potassium and magnesium it was pretty un-eventful. Unfortunately today also served to deliver more evidence that this transplant has taken an even larger toll on Ann than the first did.

I remember a year and a half ago when Ann and I used to almost, literally "bounce" on our way out of MDA after our out-patient visits. That’s not the case now. Today Ann had trouble walking at a moderate pace out of MDA, and we had to stop and let her rest for a minute. After catching her breath we proceeded out of the clinic with no other incident.

Ann says that it is just "rougher this time", and its just going to take time for her to build her capacity back up. I believe her and if anyone can do it I know she can. It still hurts to see her struggle with what was once effortless.

Friday, September 26, 2008

I had my triple lumen CVC exchanged for a double lumen CVC this morning and just to make things interesting, they didn't sedate me. Believe me, I feel like I've been stung in the chest by a nest full of hornets on top of being kicked by a mule. Those IV nurses certainly have a sense of humor.

My APN delivered a bit of devastating news to me today and I was not pleased. If I don't start consuming more solid food and liquid, they will not let me out on Sunday. I made the argument that being trapped in a hospital room was wreaking havoc with me psychologically and that if I were released, that they'd see improvement. They weren't having it. You try eating from the same menu for over a month and see how you do. I know my friend Nancy was in the hokey for over 80 days and I don't know how she managed it.

Yesterday, I gave the team another scare when I went for a walk and ended up back in my room with a tight chest and the absolute inability to breathe. In my defense, my hemoglobin was 6.9 and that's critical. I received a unit of blood, but I don't think it was enough. There was talk of putting me on oxygen and holding me for observation. If I have to make a shiv out of my disposable stethoscope to get out of here on Sunday, you better believe I'll figure it out.

Wednesday, September 24, 2008

Argghhh, food tastes funny no matter what I do to it. It's not the metallic taste I remember from days past, but more of a medicine flavor that is identical in everything that I try. I have to be able to eat solid food in order to get out of here and that wouldn't be a problem if it all didn't taste like pooh.

I cornered Dr. Andreeff today on when he'd be willing to let me go. He conferred with his team who all agreed on Sunday. So close, yet so far. On Monday, he was willing to jettison me on Wednesday. Of course he got vetoed because I was still hooked up to the PCA. I keep getting told to take things slowly and that's all fine in theory, but a patient person I am not.

I had a bit of an upset yesterday that I was really worried would hold me back. I couldn't stop vomiting and you don't want to know about the diarrhea. Nothing that I was given via IV helped with the nausea and I only managed a pitiful 3 hours of sleep last night due to side effects from regulan and compazine. I'm considering a nap today, but we'll have to see. I have a few things on the agenda like vital signs and getting my CVC bandage changed.

I'm too tired to ramble anymore so I'll leave everyone with my thanks for all of the prayers and positive thoughts and wishes. I hope I'm doing you all proud.

Tuesday, September 23, 2008


Day +17

A picture says a thousand words...

Ann is now officially engrafted. The new donor code named "0736" has fully taken over the duties of producing white blood cells. The reds and platelets will take a little longer, but should start appearing in a month or so (if all goes according to plan).

Sorry for the tardiness of this entry, but MDA's wifi (or airport if you have a mac) is working in the same sense that a square wheel works. I have tried to place this same post about ten times yesterday before giving up.

Anyway, Ann is feeling better and her mouth and throat sores are starting to heal. The 24 painkiller drip has been removed (after one really rough night and a bad trip) and she only has her PCA now. Thankfully she only needs that occasionally. She has even been able to try some solid food again, and hold it down.

That’s not to say everything has been smooth sailing this time around. Ann has developed a cough that comes on at night. She says it feels like mucus breaking up, but the physical act of coughing hurts some as well. Her lungs sound clear and she doesn’t have any other signs of an infection. So the working hypothesis is that this is a combination of the lesions in her throat healing and the mucosal tissue in her digestive system rebuilding itself and sluffing off the cells killed by the prepatory chemo.

I think that we will be in the hospital at least until they work out exactly what the cough is and Ann's sores heal up completely.

Thursday, September 18, 2008

I forgot to mention yesterday that I've been running fevers, mostly in the evenings and never over 101 degrees fahrenheit. My pulse has also been giving the team issues. It fluctuates between 110-135 beats per minute. My blood pressure is also elevated to the point that I've been placed on medication to regulate it. Now, keeping in mind that I'm constantly being fed a narcotic, I think that's all that I've forgotten to mention. If I remember something else, I'll be sure to confess to it.

Because of my febrile state, blood cultures have been drawn daily at all hours and I've given multiple urine samples. The urine samples have all come back clean, but yesterday's blood draw showed an infection of some sort. The jury is still out on which particular bacteria is causing it, but the doctors should know something by tomorrow. Unfortunately, I started getting that all too familiar feeling that comes with the onset of a urinary tract infection this morning. I let the team know about it and they dutifully ordered another urine sample. Sadly, I couldn't produce enough of a specimen the first time and had to be asked for yet another later in the day.

I think we'll be able to confirm a UTI tomorrow, but if it looks like a duck and quacks like a duck, then it's probably a duck. Considering that I don't have an effective immune system, I probably look like the buffet on a high end cruise to any and all viruses and bacterias. Yum-yum.

The sores in my mouth have grown and the blisters on the roof of my mouth have started to erupt. The PCA really helps to keep everything under control, but I still haven't been able to eat anything. I got courageous this morning and attempted to drink some cranberry/grape juice. The first sip sent me into a spasm that almost made me cry. Knowing that so many other people have survived this gracefully makes me feel like a whiner, so that's the last that I'll say about the stinky mouth sores.

An occupational therapist popped in for a visit today and based on prior experiences, I only expected the visit to last 15 minutes at the most. I was so very wrong. He insisted that we do 10 reps of 13 exercises. Previous OT's put me through my paces to judge my ability and asked me the usual questions to ascertain what level of self care that I was capable of. This guy didn't really do that. I could tell that he was nervous and I'm sure that was part of the problem.

Based on my ability to complete the assigned exercises, he determined that I should see an OT 3 times a week. When I questioned him about why he felt I needed that level of attention, he didn't have a ready answer. I ticked off the list of things that I was able to do on my own on a daily basis, which included everything. I don't use assisted devices. I can bathe myself. I can feed myself. I'm able to communicate my needs with relative ease. The bottom line of my argument was that he'd be wasting my time. In typical "Ann" fashion I told him as much and he retreated. Now I'll get the occasional visit to assure that I'm still doing well.

Physical therapy is going to be stopping in for an assessment Friday morning. I've worked with this physical therapist in the past and have no worries where she's concerned.

Yesterday was Chris's birthday and I'm really sad that he had to celebrate it as a guest of MDA. On the flip side, I'm so grateful that I got to spend another year with my sweet husband. When this is all over I'll have to think of something really special to do for him. I'm wide open for suggestions.

Wednesday, September 17, 2008

Mouth sores and me

To all of my dear friends who have patiently been trying to get in touch with me, I'm sorry. I'm not avoiding you on purpose or ignoring you all together. I've developed a raging case of mucocitis, which means that the inside lining of my mouth and throat are sloughing away. Not to put too fine a point on it, my gums, tongue, and throat are covered in bloody sores. It hurts to talk. It hurts a lot. I promise to call as soon as I'm able to. Heather, you're at the top of the list.

The mucocitis occurred the same day that Ike hit, so I know it was nerve wracking for those trying to check in on me.

There are days that I can manage to have a bite of something, but more often than not, I can't even manage a sip of water. Dr. Andersson put me on a constant dilaudid drip to control the pain. The only problem is that dilaudid makes me sick. I constantly throw up when it's administered. Because I couldn't hold any of my pills down, my meds were all switched to IV.

When Dr. Andersson realized how badly dilaudid made me feel, he switched me over to something else. A new transplant doctor started rounding on Monday and felt that the new drug wasn't helping, so he switched me back to a constant drip of dilaudid. This is supplemented by a 24 hour drip of zofran to help with the nausea. When the zofran doesn't cut it I can ask for a benadryl/phenergan cocktail, or IV Ativan.

I constantly feel off balance and sedated, which Dr. Andreeff finds preferable to seeing me deal with the constant and excruciating pain. During the day I'm either napping or holding as still as I can. The nausea flares up if I move my head even just a little.

As soon as my counts begin to increase, the sores should resolve within the week. At least, that's what the doctor thinks. I try to eat a little something every day to no avail. It hurts so much to swallow that I end up gagging and/or throwing up. The team has assured me that I will get better and I believe them. I just really want a nice cold glass of water.

That's about all that I have to report.

Monday, September 15, 2008


when Ike was closing in on Houston a few days ago MDA cleared out everyone, but the most essential patients and staff. Reluctantly that meant that I needed to leave Ann behind, but we parted in hoping that we would see each other in a day or two. No such luck.

Ike dealt quite a blow to downtown Houston. The power failed and I believe that most of the pumping stations that drain the city failed. As water pressure dropped the sewage system began to back flow. Just about every manhole or street drain that I saw was spewing up a sort of green effluent. This eventually flooded the entire parking of our apartment complex and smelled ghastly. Believe it or not, there where people walking around in flip-flops and crocs through that crap!

The city of Houston issued a boil order for all water then a little while later the radio began advising against bathing. At that point I decided that it wasn’t safe for me to be there anymore. Ann is depending on me to take care of her and if I picked something up then it could easily jump to her and do who knows how much damage. So I grabbed a few thing s and made my way to our SUV.

Getting out of the apartment complex was a challenge as several large trees had collapsed on the front gates and crushed them flat. However another enterprising resident who wanted out of the complex used his F-150 to push open a side gate and allow everyone a path to the street.

The entire city of Houston was (at that point) out of power with the exception of the Texas Medical Center. So I headed for the parking garage which was elevated (away from sewage), dry and quite. Luckily the parking meters still worked and my pass go me in. After driving around for a bit I found a inconspicuous spot and pulled in. I spent the rest of the night there and felt a little like Han Solo (except sweatier) hiding in the asteroid field as the UT police cruised by periodically checking cars. Note to the General Motors Corporation: the Saturn Vue is not a comfortable for more than 3 hours at a on it.

All throughout this I tried to stay in touch with Ann. Sometimes txt messages would get through and sometimes I could get a call into her. At first she told me she was starting to feel the onset of mouth sores and they had given her some painkillers for it. Then an hour or two later the situation started to escalate. Pain pills gave way to a morphine drip. That gave way to a dilaudid drip. Then finally the pain got so intense that she could barely talk and they put her on a pain pump to let her control the medicine directly.

In the middle of this my iPhone crapped out on me, and demanded to be synced to iTunes through my pc. Fat chance considering the city was out of power and there was a snow balls chance in hell of finding an internet connection. I managed to use Onstar to contact Apple tech support who kindly offered to set me an appointment up in the Austin Apple store for a replacement phone. I agreed and called Ann and her nurse one more time to check and see when MDA would open up again. Earliest estimate was Wednesday afternoon sometime.

So with nothing else for me do do I got on I-10 and headed West to Austin. The east bound traffic was packed with people trying to return home, power trucks, National Guard HMMWVs, and Texas State Troopers. The traffic jam heading into Houston didn’t really clear up until I stopped for gas outside of a town called Columbus.

I finally got to Austin, which is a pretty city by contrast to Houston, found the Apple store and got my phone swapped out no questions asked. I immediately called Ann and her nurse answered and said that Ann's condition has worsened. She has lesions in her throat in addition to the ones in her mouth, which are preventing her from talking or eating much of anything. Her counts have reached zero and they had to give her a platelet transfusion (thankfully MDA's blood bank is still functioning). She reassured me that this is common and that the sores will begin to heal as the new marrow begins to produce white cells to infiltrate the lesion and platelets to seal them up. I'm worried that they my take Ann off of solid food and put her on TPN if this doesn’t happen soon.

I have bee fortunate enough to find a room for the next two nights here and although the power, tv and showers are more than welcome I feel nothing but guilt because of the agony Ann is suffering through.

Given the traffic I have decided to stay here in Austin at least until tomorrow morning. I theorize that if I hit the roads early enough and try to get back in from the north through Conroe and I-45 (rather than I-10 which was the evacuation route) I may be able get back to Ann's side Wednesday night.

Thursday, September 11, 2008

Shutting Down for Ike

I've just been told that I will probably have to leave the hospital and Ann because of Hurricane Ike.  I'm not crazy about doing it, but if I have to I will.

Ann finished her last dose of Cytoxan yesterday and is now dealing with the after effects.  Stomach cramps and nausea are the principal problems.  Apart from that she appears to be doing well.  Though her WBC count is still refusing to drop to zero, the Dr. Anderson assures me that this will happen shortly.  He has been theorizing that the small increase in WBC and RBC numbers is from the 1500 cc's of bone marrow that Ann got in the transplant.  Sounds reasonable to me.

In other news I have finially otten to see a shrink and they put me on two meds to help with my depression and overwhelming anxiety.  Citalopram and Clonazepam.  They have effectively reduced my stress and painc attacks to zero.  I feel like a wet blanket has been wrapped around by head and my thoughts don't feel as sharp as they once did but I'm closer to 85% functional as apposed to 65%.  I guess that’s progress.

I've just been told that the flood gates around the texas medical center are going to be raised soon.  Before that is done everyone who is not medical staff or patients has to be out.  Unfortunately that includes yours truly.

Wednesday, September 10, 2008

This round of cytoxin is a monster. The last time I received it was with my first transplant and it didn't have such an immediate effect of me. This time, I could feel it almost immediately. I spent the better part of today huddled in my bed struck down with stomach pain. It made eating a chore and forget about wanting to drink anything. Unfortunately, cytoxin is extraordinarily toxic to your bladder, so you have to drink copious amounts of water to eliminate it from your system. You have to suffer to be well.

I sucked it up, literally, and dealt with the discomfort.

I finally confessed to my nurse that I had a stomach ache and she suggested a few things including Maalox and something for gas. I was so miserable, I took her up on everything. Nothing worked on its own, but the discomfort eventually subsided and I was able to eat a small portion of dinner. I blame the cytoxin.

My numbers have yet to bottom out, but my doctor assures me that I shouldn't worry. It should happen any day now. I'm anxious for it to happen because the sooner I reach zero, the sooner I can work on engrafting. Not that hospital living doesn't have it's appeal, but there's something to be said for sleeping through the night without visitors coming and going at all hours.

I'm still feeling a little deflated from all of the chemicals, so that's all for now.

Tuesday, September 9, 2008

The first bag of cytoxin was hung around 9am this morning. An hour later I got a dose of lasix to help flush my system of the chemo. I'll get another dose of lasix around 4pm.

There's not much else to report. I'm still feeling well, all things considered. The mysterious bone pain has abated. My appetite continues to decline, which I expected to happen. Food just tastes strange and I tend to fill up rather quickly. I know that I'll start to feel unwell in the next few days thanks to the cytoxin and I'm not looking forward to it. On the plus side, I might finally catch up on some much needed sleep.

Sunday, September 7, 2008

To say that this transplant experience is vastly different from my first would be quite an understatement. If I'm remembering correctly, I sailed through the cord blood transplant with only a handful of bad days when I felt a little wilted around the edges. Of course there was nausea and neuropathy, but that's par for the course.

This go round things are really different. The conditioning chemo hasn't knocked me on my bottom, yet and I haven't started projectile vomiting. My energy levels seem relatively normal for me. I've been warned that this will change in a handful of days.

Last night, just before going to bed I had a scary moment. My bones started to ache like someone was exerting a lot of pressure from the inside. Of course my mind jumped to the worst. Bone pain can mean a number of things. It could be due to injections meant to stimulate your cells to multiply. It could also be a symptom of relapse. The logical part of my brain should have realized that I'd just come off of a pretty serious chemo regimen and that the likelihood that the leukemia had returned was slim. I must not have been listening.

I complained to Chris and he paged the night nurse to ask for some pain killers. When she arrived we asked her what might be going on. She admitted that she'd seen it before in as a transplant nurse, but wasn't sure of the mechanics behind the cause. She later came back after talking to the charge nurse about it to reassure us that we shouldn't worry. I tried to relax and was finally able to when the darvon kicked in and put a stop to the deep ache in my legs. My arms continued to throb, but I didn't let that stop me from going to sleep.

Today we talked to Dr. Andersson about the phenomena and he asked if it had happened with the first transplant. When I told him that nothing like it had happened his second theory was that I had been infused with such a large quantity of fluid that the pain was my body's way of adjusting to the change. Considering the size of the marrow bag and the amount of saline I get on a daily basis I can believe this.

I haven't had anymore problems today. In fact, I slept for most of it thanks to a large dose of benadryl ahead of an IVIG infusion. I'm still a little puffy and my pajamas are a little snug thanks to the extra fluid I'm carrying. C'est la vie.

On a much happier note, I want to wish my friend Patricia a very happy first birthday. Here's to hoping she has many, many more.