About Joe.

Last Tuesday, as I was ending a brief and tumultuous affair with Mr. Stomach Flu, Joe was having trouble escaping the grasp of the evil temptress Ms. CMV. Although Mr. Ganciclovir tried time and time again to intervene on our behalf, Ms. CMV refused to let go (who could blame her?) We ended up firing Mr. Ganciclovir and hiring Mr. Foscarnet. It still took some time, but being meaner and tougher , Mr. Foscarnet with his twice a day interventions seems to have scared Ms. CMV into submission. As of this past Monday, Ms. CMV has gone into hiding. Just to be sure that she won’t be bothering Joe anymore, Mr. Foscarnet will continue to intervene twice a day. If Ms. CMV behaves tomorrow and Monday, then Mr. Foscarnet has agreed to only visit once a day for a week or so. As for me, my relationship with Mr. Stomach Flu is completely over. Affairs are bad. Falling under the spell of an evil temptress is also bad.

Meanwhile, Joe started to develop cold/flu symptoms. Last week, it was mostly some coughing and sniffling in the mornings and evenings. The coughing and sniffling steadily increased until Saturday evening when Joe started to feel chills. On Sunday, he felt a bit better, but his WBC had fallen to only 0.7k/mcL. The doctor wanted to be sure that Joe wasn’t developing pneumonia. He also wanted to confirm that Joe ‘s counts were dropping due to the CMV, and not something else. So on Sunday, Joe was admitted to the hospital. Joe was given all kinds of antibiotics to ensure he was armed against all kinds of infections. A chest x-ray showed no signs of pneumonia.

By Monday, Joe was feeling a bit better. A bone marrow biopsy was scheduled for the afternoon. Joe was introduced to the wonders of morphine for the very first time. It is a amazing that it was never offered before. It made the biopsy so much more pleasant. It still wasn’t fun of course. But it was far better than the extreme torture Joe has endured in the past. Tuesday was better yet, although the cough was worse. What made Tuesday even better was that the CMV results came back negative. By evening, the doctors decided that there was no reason for Joe to be in the hospital anymore. We left the hospital sometime after 9pm last night. Of course we still have to return every single day.

That brings us to today. It was a long day. Joe’s rash from GVHD now covers about 90% of his body. Many areas are starting to peel. Joe’s eyes have become puffy and dry. This is either due to the GVHD, or water retention from the steroids. The coughing continues. And since Joe has had his line in for nine weeks now, the area under and around his dressing has become very sensitive. It peels and bleeds, and the dressings start to look ratty before his weekly dressing changes. Still, Joe remains strong and says he doesn’t feel too bad. The first thing today was that one of Joe’s lumens was clogged. This is an easy fix with Retavase. Today however, it took longer than usual. More of a nuisance than anything else. Then Joe’s magnesium results took an unusually long time to return. Of course that was the one thing that Joe ended up needing more of, which further extended our day. Finally, Joe received a call from one of the doctors. The results from his bone marrow biopsy showed that the graft went from 98% to 89%. Still, there is no room for worrying around here. The doctors said that it is not uncommon to see fluctuations this early. Also, they are encouraged that this was caught early. Joe is at day 64, and his next biopsy originally was not going to be until day 100. The plan is that Joe will be getting five days of Vidaza starting tomorrow. Hopefully, this will scare Joe’s cells into going away, and his donor's cells will be able to fight harder. This time, the dosage of Vidaza will be lower, and it will be administered IV rather than with injections. No worries. Only prayers, hugs, and positive thoughts are welcome.

That concludes this update on Joe.

Pressin' On.

Hello, hello! It's Karen. I've temporarily regained control of the blog. It has been an interesting couple of days in our household. On Sunday evening, I developed some pains in my stomach. From then until now, I have experienced something quite similar to what Joe was experiencing post-transplant. As you may recall, he had little appetite, and pretty much everything that entered his body would proceed to exit in a most unpleasant matter. Yes, it is my turn...although I managed to skip the life-threatening diagnosis, chemotherapy, and transplant. Okay, I guess it is totally different. Apparently, I'm just one of those lucky people who managed to contract that Stomach Flu that seems to be everywhere. I was so frustrated, because I've been able to avoid getting sick for so long. The timing was awful too, because both of Joe's parents are also very sick. Joe started joking around that even though he is rightfully the "sickest" one of us all, he feels the greatest.

Joe traveled to and from the hospital by himself yesterday and today, which worked out okay. I've been wearing a mask, walking around with Purell in my pocket, and wiping down everything I touch with alcohol. Joe and I spend little time in the same room. It feels very weird, because we have been together almost 24/7 for months now, and I've gotten used to being the caretaker...or at least doing a decent job pretending to be a caretaker. And yet, this evening Joe made me congee/jook/rice porridge/mue/okayu/lugao/pick your favorite name... Seems a little backwards! I think I might finally be feeling better. I hope so anyway. What this short two days of a common stomach flu has taught me though is how incredibly tough Joe and others like him are. Two days and I feel like a miserable, useless, whining blob of blahness. Joe has been through so much more for so much longer, and yet he is still able to be the king of silliness and find humor in every step of his journey. Do I have the coolest most amazing husband, or what? I think the answer is that I have the coolest most amazing husband!

Enough about me, more about Joe. Unfortunately, the results of Joe's CMV test from yesterday were still positive. Today, they switched him to Foscarnet. It is not as well-tolerated as Ganciclovir, and can cause un-fun things like kidney problems and a decrease in Calcium. But Joe will be closely monitored, and this should definitely take care of the CMV. The problem with the Ganciclovir is that it doesn't work so well against steroids and FK5O6. While the doctors attempted to lower Joe's steroid dosage, it apparently wasn't enough. Joe can't be taken off the steroids completely yet because they are what make his blog entries so funny. I mean, because of the rash caused by the GVH. Even as the dosage was tapered, we could see that the rash was spreading. So far this hasn't bothered Joe too much though. His head has been spared, so Joe is still able to admire his reflection in the mirror. :) And of course Joe needs to take FK5O6, so little could be done with that. Today was Joe's first dose of the Foscarnet. He did notice that it makes him feel a bit nauseated, and very tired. Also, his taste buds seem to be acting funny again. We are confident though that Joe will be CMV negative by Thursday...and then he'll just need to take the Foscarnet for another week or so...and then we'll be done with it!

Well, we're still pressin' on.

Thank you so much to the Jou's for bringing us so much food last night! It was so appreciated. And thank you to Gordon and Julie for the sweet gift!

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure.
~Psalm 71:14-15