The evil temptress is back...

Today we learned that the evil temptress Ms. CMV is back. We were prepared to see her again, but we were really hoping she would stay away. Oh well, as the doctor said, "don't be discouraged. This is treatable." Since Mr. Ganciclovir proved ineffective last time, and Mr. Foscarnet made Joe pay heftily to get rid of Ms. CMV, Mr. Cidofovir is intervening this time. I like to call him Mr. Sudokuvir...but anyway...

We will go to the hospital tomorrow. Joe will receive fluids for three hours. Cidofovir will be infused over 2 hours. Then there will be an additional two hours of something, but we're not so clear on what yet. :) I will have to report back! Cidofovir only needs to be given once a week, and apparently the very first treatment is much longer than the ones that follow. So tomorrow is a long day, but next Thursday should be a bit better. So far the plan is two Thursdays of Cidofovir, then a week off, and another Thursday of Cidofovir. Hopefully by then Joe will test negative for CMV. If not, he'll continue to get Cidofovir every other week.

Today Joe tried something new. It's called Mepron. It looks like bright yellow paint, or maybe French's classic yellow mustard. Apparently it tastes like fruity plastic. It is used to prevent pneumonia. Originally Joe was given Bactrim when his counts started to rise post-transplant. When Joe's counts started to drop, he was taken off the Bactrim and given a Pentamidine, which is inhaled. The Pentamidine is a monthly treatment. Unfortunately, it was discovered that those in the hospital responsible for administering Pentamidine weren't exactly doing it correctly. This understandably made Joe's doctor nervous. So Joe was given a prescription for Mepron. You have to take it once daily, and it is much worse than swallowing pills. Joe is convinced the doctors enjoy coming up with new ways to torture him! However, the upside is that the drug comes with these directions: TAKE THIS MEDICINE WITH MEALS. If possible, include foods with a high fat content (whole milk, cheese, ice cream, eggs, fried foods). Joe is especially happy to have a proper excuse to eat ice cream!

Some more good news. Joe's rash looks significantly better today, and he isn't shedding as much skin either. I'm praying he is able to get a good night sleep, since tomorrow will be along day. Joe's parents kindly brought over an oven-ready meal for us so that we don't have to worry about dinner tomorrow.

He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.
~Revelation 21:4

Day +79

Yesterday's visit to the hospital was relatively quick and painless. Our friend Marcus is doing a rotation at the hospital, so he provided some entertainment while we were there. Joe tested negative for CMV again. Yay! This is really wonderful news. With Joe's counts and the drugs he is on, the doctors would have preferred to keep Joe on Foscarnet, at least a few times a week until Day 100. Since Joe developed a side effect, the doctors are keeping him off everything used to treat CMV for now. If Joe were to test positive again (and we know that he will NOT), there is a third drug (after Ganciclovir and Foscarnet) that would be used as treatment.

The not so fun parts of this week are that Joe's GVHD rash seems to be getting worse again. As you might recall, his skin was peeling like crazy, but the rash seemed to be healing. The peeling continued in waves, and the rash continued to look better. As the rash got better, the steroids were tapered more and more. Over the weekend, the rash started to look more pink again. Now, it seems that the rash is back with a vengeance, and Joe is itching like crazy. He calls it alligator skin. Yesterday, the steroids were increased slightly. Hopefully that helps. To make things even more fun Joe is experiencing some edema. It is not too much of a concern right now, but Joe's usually slender and sleek ankles and feet now look like they belong to Miss Piggy. Joe is not really feeling like himself right now. And finally, because the rash and edema are not enough to procur sympathy from others, the Hemorrhagic Cystitis which Joe so eloquently described in a previous post has returned.

Joe isn't exactly enjoying all of this. How could he? But he is being tougher than can be expected under the circumstances. Tomorrow we'll be returning to the hospital. We'll keep our faithful readers updated!

The Lord will sustain him on his sickbed and restore him from his bed of illness.
~Psalm 41:3

Spring is Here!

The good news, is that Joe's GVHD rash continues to heal. His skin is still peeling from head to toe, but the skin underneath looks much better. Also, Joe has gotten three consecutive negative CMV results. Wonderful!

The bad news is, that Joe seems to have developed a rare and not very widely known side effect from the Foscarnet. The connection was not made until yesterday. It is not something dangerous, and Joe has been completely taken off Foscarnet, so the symptoms should diminish in a few days. But in the meantime, please say a prayer for Joe because he is in a lot of pain. It hurts my heart to see him in so much pain.

Thank you so much for all of your prayers and words of encouragement!

New Day, New Week

The last few weeks have been rough. So many things seemed to happen at once. Just one unhappy event would have been managable. But it felt like we were being flooded with unhappy events. Add to that the fact that Joe was rightfully feeling sick of being sick. I was feeling helpless and useless. And even more, I was being haunted with the belief (which I'm sure was mostly imagined) that people just weren't understanding how tough things have been for Joe. I felt that his extreme positivity was masking the fact that it is not easy going through what he is going through. Not easy to feel less than 100% for months on end. Not easy to get a piece of hopeful news and then 3 pieces of not so hopeful news. Not easy to feel isolated from your friends and tell them that no...this week isn't a good week to visit, and neither is next week. I had these visions of people wondering why we are being so anti-social and overprotective, thinking that we're probably sitting at home day by day enjoying an extended vacation from life. Joe really does do a grand job of creating the illusion that getting diagnosed with high-grade MDS and going through a PBSC transplant is easy peasy. But while this has always made me so extremely proud of him, these past couple of weeks it made me sad. I felt this desire to shout and scream and say, "do you really, really, really, understand all that Joe is going through? Can you truly fathom the idea that he is only making it look easy?" I think it is natural to have emotional periods like this when experiencing tough times. Or maybe, I'm just crazy!

Well nevermind, because this is a new day, a new week, and we are both feeling renewed and ready to exude extreme positivity once again! Today was Joe's last dose of Vidaza. He received a quarter dose of what he was receiving pre-transplant. It was administered across five days through a 20 minute IV. Despite getting Zofran prior to the chemo, Joe has experienced bouts of nausea and decreased appetite these past few days. Hopefully the Vidaza will suppress Joe's cells, and the donor cells will be able to more effectively take over. Joe will be getting bone marrow biopsy #7 in about 25 days to see what is happening. We are also praying that Joe's appetite returns, and the nausea goes away now that his Vidaza treatment has ended.

So far Joe has gotten two negative CMV results. Hurray! Tomorrow we'll have the results from today's draw, and we just know it will be negative as well. Then Joe will receive Foscarnet once a day until he gets three more negative CMV results. We are hoping and praying and hoping and praying that after the next three negatives, his hospital visits will be tapered.

Joe's skin continues to peel. This just means that the rash from the GVHD is healing. It is a sight to behold. Combined with his swollen and also peeling eyes, Joe looks a little bit like a snake. Joe humors me by hissing. Joe also likes to remark that his skin is simply peeling from the sunburn he got while we were in Fiji (remember, the trip to Fiji was in Joe's head!) Then there is the nurse who said, "You're simply a-peeling (appealing)! I'm sure your wife tells you that all the time." You gotta laugh, you gotta groan.

Things are definitely looking up. :)

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Now for prayer requests.

* Please continue to pray for Baby Livi. She is 9 days out from her transplant, and she is just amazing. This week she turns two. Hospitals are not a fun place to celebrate a birthday. Fortunately, she has an extremely wonderful family.

*Continued prayers for Amy W. She just finished another round of chemo, more than 100 days post-transplant. At the end of the month, she'll be receiving a booster of stem cells from her brother.

* Also pray for Amy Katz. She has an army of people behind her raising money and holding bone marrow drives. They've added over 7000 people to the registry, and found donors for 13 people. Yet after 4 years, Amy is still searching for her perfect match.

Which brings us to the next announcement...(come on, stay with me here. i'm on a roll!)
Amy's Army is holding another bone marrow drive on

March 27th, 2007
7am - 7pm
Wintergarden in PPG Place
Downtown Pittsburgh
(You can download the forms necessary and fill them out in advance to make registration faster. Amy's Army)

All fees are covered by Amy's Army and the HLA registry. Please, please, please (yes, I realize I'm begging) if you are in the Pittsburgh area and you have not yet registered to be a donor, consider signing up on March 27. So many people approached us about signing up for the registry when Joe was diagnosed. I know many were discouraged when they discovered that the drives we held were minority-based. Well, NOW IS YOUR CHANCE TO REGISTER! It is an absolute miracle that Joe was able to find a donor within 6 months, especially since he is Asian. We are so blessed that a girl of 21 was brave enough to give Joe a chance at a longer life. Amy Katz has been waiting for years! Imagine that it is your child, parent, spouse, or sibling who needs a transplant. This is the opportunity to give the gift of life. Most people register and will never get called. If you do get called, don't think of the needles and other fears, think, "Wow! I've won the lottery! I've been given the privilege of being able to help another person - another family."

If you are in the area and have already registered, are not between 18-60, or are unable to register due to health reasons, consider helping another way. SPREAD THE WORD!!!! On the Amy's Army site you can download fliers or send emails with all of the information necessary. Amy's site also has information for those interested in volunteering for the day.

Finally, there is an Amy's Army Benefit Concert

Sunday, March 25, 2007
4pm-11pm
Hard Rock Cafe
Station Square, Pgh, PA

Cost: $10.00 donation.

Events like these are what make it possible for Amy's Army to hold bone marrow drives and defer costs. Many people aren't keen on spending $52+ to register, but $10.00 for a concert that will help defer costs for others sounds fair, right?

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Last but not least, thank you, thank you, thank you to
A.M. & A.D.
April & Paul
Auntie KT
Auntie SB & Uncle RC
Beth and Dave
Brian
Caryn
Cousin Van
GLA
Greg
Joanna
Lauren
Lih Jen
Lilly P.
Lou Ann
Neysa
Pastor Jim
PCC "head honchos"
PM
Sheena
Shelley
Sara and
Tina

for the encouragement you provided for us this past couple of weeks. It meant so much to us, and we really appreciate it! Thank you to everyone for continued prayers through all of our ups and downs. This would all be so much more difficult if we didn't have the support that we do. God bless!

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings because we know that suffering produces perserverance; perserverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
~Romans 5:1-5

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