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.