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.

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.

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.

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.

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.

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.

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.