Day +80

This morning, Joe woke up with a start and realized that we forgot to set the alarm. Joe called the office to tell them we would be a little late for our 9:00am appointment. Actually, we could have been right on time, but Joe needed to get his blood drawn from the outpatient office first. Now that Joe doesn't have his line, he needs to get his blood drawn from the outpatient office if he's not going to short stay.

When we finally arrived at the BMT office around 9:30am, we discovered that the doctor who set up our appointment had given us the wrong time! We weren't supposed to be there until 3:30pm! Fortunately, the office didn't make us wait until 3:30 to be seen.

Joe's counts are still not so high. But we refuse to allow numbers on a piece of paper to determine what kind of day we have. We just have to accept that Joe's counts will be a bit wild for awhile, and that's okay. The good news. There is always some type of good news! On Monday, Joe had a blood draw for a chimerism test. The test showed that Joe's peripheral blood is 98-99% donor. This means that the Vidaza did what it needed to do. Let's just keep praying that those donor cells stay in control.

Joe's rash didn't look much better after the slight increase in steroids from Wednesday. Today, Joe was given a more significant increase. The doctor is hoping to taper the dosage again by Monday. The plan is that the kick up in steroids will cool down the GVHD so it doesn't get out of control. It is another balancing game. The risk with increasing the steroids is that there is a greater chance that the CMV will become positive again. Still the dosage of steroids given to Joe is still considered a relatively low dose. So we'll just keep praying and trusting that all will work as it should.

And finally, Joe's Miss Piggy feet. The edema seems to have gotten worse. Today Joe had a bit of pain in his right calf. Joe was given an ultrasound to rule out the possibility of a blood clot. Surprisingly, even people with very low platelet counts have been found to have blood clots. Then they are given medication to treat the clot, and lots of platelet transfusions. Sounds crazy, doesn't it? Fortunately, just as suspected, Joe's ultrasound showed no sign of clots.

We have another weekend off, and then back to the hospital on Monday. Monday marks our two year wedding anniversary, so I anticipate we'll receive all kinds of wonderful news regarding Joe's condition. I don't think that is asking too much!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
~Romans 15:13

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

Birthday, birthday, birthday!

Joe now has three birthdays. The day he entered the world. The day of his transplant. And the day he was baptized. Today marks two years since Joe was baptized on a beautiful Easter morning! It is evident that God has used Joe in a very remarkable way to touch the hearts and lives of so many, and I know that the Lord will continue to do so.

After a relaxing weekend, we returned to the hospital yesterday. The major highlight of the day was that Joe had his line pulled. It had been in for 11 weeks, and Joe was all too happy to have it pulled. This does mean that he'll have to go back to being a human pin cushion. We are hoping he won't need much more than blood draws though, and Joe can handle that - easy. Joe is currently enjoying the absolute bliss of taking a shower without having a ziplock bag or 'Press and Seal' and tons of tape protecting his line and making it difficult to move his neck. Now he gets to wear fun little bandages over the spot where his line was. I never buy regular bandages, so Joe always has to put up with various super heroes and cartoon characters. The nurses get a kick out of Joe's different bandages, which makes me happy!

We had today off, and we'll have Thursday off too. Hurray! Any day away from the hospital is a happy day. We were able to get a lot of things done today, so that was nice. Back to the hospital tomorrow. We'll find out then whether Joe's Monday draw was CMV negative or not. Let's pray for continued negative results and higher blood counts. Come on, get to it! :)

As you know, we consider blessed those who have perservered. You have heard of Job's perserverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.
~James 5:11

Vacation!

On Friday afternoon, we received wonderful news! Joe got the whole weekend away from the hospital. YAY!!!!!! Overall, everything is getting better and better. Now the symptoms and side affects are more of a nuisance than anything else. Tomorrow we return to the hospital. Hopefully, Joe's counts will start to rise this week (they have been dropping - most likely due to the Vidaza.) and everything else will contine to be better.

Albert was in town for a few days. He came and hung out with us on Thursday evening. Then from Friday until today, we all vacationed at Hotel Mom & Dad. It was really nice. Plus, Victor came into town yesterday, so we were able to spend some time with him as well.

Yesterday, Joe took full advantage of not having to go to the hospital. He slept until close to 11am. Then after a late breakfast, he went back to sleep for a few more hours! I'm so glad that he was able to enjoy some true rest!

That's all for today. Thank you for all of your love and prayers!

Thank you A.M & A.D for the cards!!!!! You are too sweet.

A very Happy Birthday to my 2nd uncle who is now able to ride the speed train in Taiwan for half price!!!!!!

Also, a very Happy Birthday to Pastor Jim, Eric W., Bryan, and Bethie!!!!!!!!!!

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. :)

-----
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?

---
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 Grandma.

One of the most difficult things about this past week, was that I found out that my paternal grandma passed away. I didn’t really have to deal with the death of someone near and dear to my heart until I reached my 20s. Since then, it seems to happen all too often. Still, there is comfort in knowing that my grandma is having a blast up in heaven.

As I’ve reflected on my grandma’s passing, I feel I’ve only just begun to get a better idea of what an absolutely amazing woman she was. My grandma was a respected gynecologist. She was a devoted Christian - one of the first members of her church. My grandmother could knit, she could sew, she created beautiful flower arrangements, and she had a flair for Chinese calligraphy. She was a loving and faithful wife for more than sixty years. She raised four successful and genius children (sure, one of them with the initials VSL is a bit of a weirdo…but a very lovable weirdo!). She raised chickens. She walked to the market each day to buy fresh produce. My grandma passed away very suddenly, two days before her ninetieth birthday. One big comfort is that it doesn’t seem she suffered at all. My grandma was healthy and strong to the very end.


So let me share some of my fondest memories of my grandma. One of my favorites, is that my grandma was the queen of giving piggyback rides. I think my grandma probably carried me on her back every chance she got until I was at least four or five. I loved it. It made me feel so close to my grandma. I was so spoiled when my grandma was around, I never had to walk anywhere! Looking back, I’m amazed at my grandma’s strength! She was such a strong woman in so many ways, it is easy to overlook the fact that physically, she was quite tiny. When my brother was born, nine and a half years after me, my grandparents came to visit us for an extended period. My grandma immediately sewed a special wrap so she could tote my brother around everywhere we went.


My grandma created beautiful flower arrangements. She created arrangements monthly for her church. I remember her telling me with a certain pride, that managed to not sound boastful, that while the other ladies who created arrangements for church were dependent on using Oasis foam, she didn’t need it. Not only that, but my grandma lugged her own water to church when it was her turn to do the flower arrangements. The summer my brother was born, my father made sure that the flower gardens around our home were gorgeous. While my grandma was visiting, she would clip flowers each day and our home was filled with beautiful arrangements.

One story often shared in my family is how my grandma had a gift for Chinese calligraphy. In fact, several of my family members claim to have this gift. But the event that proved my grandma was the best, involved a burglary. Turns out when thieves broke into my grandma’s home, items she had calligraphed were stolen, yet items calligraphed by other family members were left behind!

I think the one thing that I most respect about my grandma is that she was a completely selfless woman. My grandma provided for her family, she gave to the church, and she gave to the community. My grandma never seemed to want for anything in this materialistic world. She lived simply, she ate simply, and she gave, and gave, and gave. As a whole, I don’t think Taiwanese people express love as openly as Americans, but there is no doubt that my grandma’s love was pure and genuine. She didn’t express love by buying tons of expensive things for her loved ones. She expressed love by putting food on the table that consisted of the freshest produce she could find, by giving piggyback rides, and by looking at you with a twinkle in her eye. I love my grandma so much, and I will miss her greatly. We lived on two different continents, and didn't see each other nearly enough...but I always felt her love. I regret that she never had a chance to meet Joe while here on earth. But one day, we shall all meet again up in heaven. It’ll be a party up there!

Please pray for my family. I know my grandpa, aunts, uncles, and cousins could really use some prayer right now. And please pray for my parents as they are currently on route to Taiwan for the services.

I have typed and erased, and typed and erased some more. My words don’t come close to describing my grandma’s amazing character.. But, I leave you with the end of Proverbs 31. I really believe that my grandmother lived the life of a Proverbs 31 woman, something that I aspire to be…

Epilogue: The Wife of Noble Character
A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still dark, she provides food for her family and portions for her servant girls. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she hold the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. When it snows, she has no fear for her household; for all of them are clothed in scarlet. She makes coverings for her bed, she is clothed in fine linen and purple. Her husband is respected at the city gate, where he takes his seat among the elders of the land. She makes linen garments and sells them. She is clothed with strength and dignity; she can laugh at the days to come. She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed; her husband also, and he praises her: “Many women do noble things, but you surpass them all.” Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised. Give her the reward she has earned, and let her works bring her praise at the city gate.
~Proverbs 31:10-31

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.

This past week has been long and challenging for many different reasons. I will explain more in detail another day. For now I just wanted to thank everyone for continued prayers, lest you feel abandoned.
Also, wanted to let everyone know that Joe was admitted to the hospital again yesterday and received bone marrow biopsy #6 today. Both were more precautionary than anything. Joe was experiencing cold/flu like symptoms and very low WBC, so the doctors wanted to make sure that he didn't develop pneumonia. Despite everything, Joe is still staying strong. Thanks again for your prayers.

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

Hallelujah! Generous contribution!

I have recently been informed that marrowtrek.org has received its first generous contribution from an Anonymous donor I will refer to only as W.H. Gates (HIPAA regulations prohibit me from revealing full names) in the amount of one hundred million dollars! This unexpected windfall dwarfs our measly goal. Since we at marrowtrek.org are now unbelievably rich beyond our wildest dreams, we are immediately closing the website. So everything I posted previously, disregard.

Haha! Of course, that whole preceding paragraph was completely fabricated (e.g. LIES). Just wanted to show you what we might achieve collectively with a little elbow grease / ga you / chutzpah. If only life were as easy as above. Do you think Pittsburgh's David L. Lawrence Convention Center was built in a day?! (Apparently the answer to that is "yes"). marrowtrek.org operators (i.e. internet trolls) are eagerly standing by for your generous donations. You say that you don't have one hundred million dollars to spare? Well, we'll gladly take one hundred million pennies.

Now, I went to Stanford and have a medical degree from another prestigious university, so math isn't exactly my strong suit. But let's just suppose that you decide to make a sorta generous donation of $3 per mile of trek. Assuming Jim and Jesse accomplish their trek, your total pledge is less than $10,000! If you think about it, that's mere pennies a day for the next 50 years or so: you can share this gift of giving with your grandchildren and probably your grandchildren's grandchildren. I know that it's quite difficult to part with hard earned moulah. Take me for instance. Do you think it's easy sitting around all day collecting disability checks?! Heck no! (I'll let you in on a little secret to being rich like me- I am easily a thousand-aire. All you have to do is contract a life-threatening bone marrow cancer and undergo intense chemo treatments followed by a bone marrow transplant and the inherent 6-12 months of follow up and lifetime check-ups. Piece of cake!) Getting back to the topic at hand, enter the beauty of second mortgages and home equity lines of credit! Free money! No really, I'm not saying you have to or even should bankrupt yourself to contribute to this cause but maybe the kids could go without that 10th Wii-Box-PS5 gaming console brought to you by the MicroSonyTendo conglomerate. I say, let's you and I bring back a wooden toys movement. Better yet, homemade wooden toys.

Incidentally, if W.H. Gates or perhaps M. Jordan or O. Winfrey happen upon this blog and are really bored cleaning the trophy case with $1000 bills or lining their rare Sumatran white-tailed endangered hamster cages with Benjamins, please pinch us off a little sump'n sump'n. I'm sure y'all have a couple mil stuck in the lint trap of your dryers.

Okay... as you can see steroids is good stuff! Seriously, please check out marrowtrek.org. There's not much to the website right now, but since it's early, we are trying to get the word out about this. My people are in contact with people who might know Katie Couric and Stone Phillips as of this writing. In my last blog entry, I so casually slipped in that Jim and Jesse are trekking 3,100 miles over four months. If you really stop to think about this, that's 3,100 freakin' miles over four months! They did this sorta thing once, which makes them manly men. But to do it again takes some degree of brain damage. So if my urgings don't make you feel compelled to contribute, do it for these two poor souls... Man, if I can just get every one of my friends and acquaintances to contribute a grand total of just a single dollar, our project wouldn't even get off the ground since I've counted about 5 friends, and that's including Karen. But you, you can really make a difference.

Alright, I promise not to bombard you too much about the Marrow Trek (at least, not until it gets closer to "go" time). A little update on me... the hemorrhagic cystitis issue is improving, meaning I run around the house pantsless only about once an hour instead of two or three. The skin rash I've had from graft-versus-host disease has gotten a little worse as they have been decreasing my immunosuppression in the name of more effectively treating the CMV. Bloodwork for CMV was drawn again today and I should know the results by tomorrow. We're all praying really hard that it's finally going to be negative. Otherwise, I'll have to switch to a different IV drug which has to be monitored even more carefully.

That's it.

Joe

Marrow Trek

Hello again,

I'm blogging this time to implore you to support a good (no, dare I say great) cause. One of my best friends from college, Jim Schoettler, called me a few weeks ago to obtain my input on a "project" he was working on. Knowing Jim, I was pretty sure this project involved snots and a dartboard, but I was mildly shocked and quite touched when he revealed his heart and his motivation to raise awareness about bone marrow transplants and the need for bone marrow donors. I enthusiastically jumped on board his project as well. Jim, of his own volition, contacted the Dana Farber Cancer Institute for sponsorship. I also put him in touch with the Cammy Lee Leukemia Foundation (who helped me with several bone marrow drives). This summer, Jim and another close friend of his, Jesse, from our college days (both experienced expert hikers) are planning a 4 month 3,100 mile trek across the Continental Divide Trail spanning the Mexican border to the Canadian border. They are asking for pledges (monetary and otherwise) for their trek with all proceeds going to support the above organizations. We are also currently working on getting more big organizations/corporations for sponsorship. With any luck, Jim and Jesse will be donning jumpsuits a la NASCAR style on their journey! ("Shake and bake") I know you're thinking that mountain goats and lizards and such may not really appreciate Tide or Marlboro or Coors Light logos. In fact, Jim and Jesse may inadvertently be walking targets for horny moose, but that is neither here nor there... All joking aside, Jim has set up a website, marrowtrek.org or marrowtrek.com, where you can find out more details and follow their progress. Incidentally, Jim is a great photographer (check out jdschoettler.com), so you may enjoy some amazing pictures along the way.

If you look carefully at the website, I am on the "executive" committee (aka CEO, aka the Big Kahuna, aka the Face of cancer). Bio available shortly... Actually, I think my official title is "peon". Checks, of course, can be made payable to "The Joseph Lin Personal Fund". Just kidding! (Note: the preceding was a JOKE). The donation process is laid out easily on the website. Within a week or so, a comically gigantic needle will be sent to you. All you have to do is stick it in the meaty part of your thigh... Again, just kidding. Just check out the website.

Recently, besides me, another close friend of Jim's has had an urgent need for a bone marrow transplant and is now still currently looking for a donor. While I have been extremely fortunate to find my donor and be transplanted within six months, many people out there have had to search for years or have died in the search process. There is something like a 1 in 20,000 chance that a patient finds a perfect match and the odds are even worse for minorities and mixed races. I think I've said this before, but only one person has ever found a match through their own bone marrow drive efforts. The numbers of people registered in the National Marrow Donor Program (NMDP) are unacceptably low. So, please please please consider contributing to this cause, if not monetarily to help support organizations like CLLF and Dana Farber to fund drives and research, then to motivate yourself and others to be put on the registry. I obviously have been a beneficiary of such efforts of other people, and I would be remiss, especially as a doctor myself, not to encourage this.

Jim and I were roommates for three years at Stanford. He's a straight up good guy so I can vouch for him. His mother, our treasurer on this endeavor, was the former Lieutenant Governor and Treasurer of Colorado for goodness sake, so you can be sure the money is going to the right place. Jim's a free spirit and one of the brightest people I know. When he commits himself to hiking over 3000 miles and helping good causes along the way, you can be sure he'll do it. And Jesse, even though I don't know him quite as well, I know he is cut from the same mold. In fact, these guys have done similar hikes before. If you look up "Colorado mountain man" in the dictionary, well, you'd find a definition of a male who hails from the Western region of the Unites States where there are many areas comprised of impressive natural elevations above the earth's surface. No, of course, you would see a picture of Jim as the definition. He's ruggedly handsome, physically fit, and maybe even available. I tell you, if I were a woman (wait a sec...), I'd probably marry him on the spot.

Whoa, I'm totally getting sidetracked here... In all seriousness, please check out marrowtrek.org. And don't just check it out, make it your home.
It would rock my world.

Joe

Ganciclovir

As of Thursday, Joe still tested positive for CMV. We're going to pray and pray and pray that the results from Monday's draw will be negative! If Joe was not still taking steroids for his GVHD and FK5O6, the Ganciclovir would have worked its magic by now. Unfortunately, he can't be taken off those meds completely, but the dosages have been lowered. Let's just keep praying!

I posted a photo of Joe getting his evening dose of Ganciclovir. It looks like a little baby bottle. It is as cute as anything medical related could possibly be. You know we'll find entertainment any way we can!

That's it from me today. I'm hoping Joe will post again soon, because his posts are so entertaining!

A very Happy Birthday to my 1st Auntie! She hasn't been exempted from getting older each year, but somehow she has managed to get exempt from looking older each year. It is truly amazing.

And Congratulations to Nancy and Bill who are the proud parents of a second baby boy!!!!

Hemorrhagic cystitis?!

Hey everybody!

Tomorrow will be Day 50 post-transplant! Unfortunately, as you probably know by now, I got my first semi-serious complication last week with a CMV infection. The good news is I still feel good overall and I've been getting to come home in the afternoon/evenings the past few days. The bad news is that the CMV has not been completely eradicated and the virus was still detected in my bloodstream as of yesterday's blood draw. So for now, I have to continue with the twice a day IV ganciclovir and my next blood test for CMV will be Thursday. So please pray that this will be negative on Thursday. Ganciclovir is supposed to be very effective in treating CMV but has the bad side effect of decreasing my white blood cell counts, so ideally, I don't want to be on the medication for too long.

Now, we'll play scenario games again. Imagine this time that as a reward for a long, hard week at the office, you and your lovely wife enjoy Belgian chocolate dipped strawberries and mimosas on late Saturday morning after which you hop in your fire red Lamborghini and motor to the day spa. There you enjoy couples total body massage/facial/wax/manicure/pedicure/body wrap treatments given by Angelina Jolie and Brad Pitt (in my case, either one would suffice... you know, Brad and I would talk politics and sports). Then, you take your private jet to partake of a late lunch at, let's say, Spago, prepared by your personal chef, Iron Chef. You do some shopping on Rodeo Drive and buy a couple Rolexes or Pateks and consider buying a poodle to go with those fabulous Manolos. Now it's time to enjoy a romantic dinner at your favorite restaurant on Mars with an incredible view of Earth. You make it back just in time for courtside seats at the Super Bowl/World Series/Stanley Cup finals topped off with a private performance by the "All-Stars" of the world's greatest symphonies including a world premiere of a ballad written and performed in your honor by Luciano Pavarotti.

Now, let's change the scenario a little. Instead of chocolate and alcoholic beverages on a Saturday morning, imagine that you have to urinate; instead of a Lamborghini, you have to urinate; instead of total body treatments, you have to urinate; yep, instead of Angelina and Brad, urinate; instead of private jet, Spago, Iron chef: urinate. I think you're starting to get the picture. Welcome to the world of hemorrhagic cystitis!! Sounds fancy and complicated doesn't it?! It's really about urinating, and on top of that, there's some blood involved. Really I'll be sitting there minding my own business happily picking my nose or something as intellectual as that and suddenly, without appropriate warning, my urinary apparatus and brain will shout "You better find a toilet for me in the next three seconds or I'm going all over your pants buddy! One... two..." This happens every 20-30 minutes. In all seriousness, this hemorrhagic cystitis thing is supposed to be a fairly common complication after a bone marrow transplant. It involves inflammation of the bladder and can lead to urgency (feeling the need to pee all the time), frequency (going all the time), burning and pain (not fun), and hematuria (peeing blood... yikes!). It's rather disconcerting seeing blood come out, but fortunately, this whole thing is supposed to be self-limited. So for now, I'm told to drink lots of fluids and ride it out. Unfortunately, this thing can last up to six months (!) which would be a worse case scenario. Again, let's just hope and pray that my doctors don't have to end up putting instruments up my you know what and do "bladder irrigation."

So my advice to you: try to avoid getting hemorrhagic cystitis. And if you see me whizzing by you (pun intended), it's not because I'm being rude. Just get outta the way, okay?!

Joe

Home!

Joe was supposed to stay at the hospital until at least Monday or Tuesday. However, once again, his good behavior has paid off! Even though Joe is still CMV positive, there is evidence that he is definitely responding to the treatment. Add that to the fact that he is a doctor and an extremely compliant patient, and the outcome is home sweet home! Of course Joe has to go back to the hospital every single day again. But this is far better than spending restless nights at the hospital. The nurses mean well, but they were entering the room every hour or two, and flipping on the super bright lights without warning. Not so fun. So the plan is that Joe returns each morning for his first dose of Ganciclovir. Then a visiting nurse will come to our home in the evenings for the second dose. Hopefully by Monday, Joe will test negative, and then he'll just get one dose a day at the hospital. Thank you everyone for all of your prayers, love, and cards!

Now if you can please send a bunch of prayers to Amy and her family. They can use every prayer they can get right now. No, we do not know Amy or her family personally. Chances are, they don't have any idea who we are. But ever since her blog was shared with us, she has been in our prayers. She is a young lady of amazing strength and faith. We have learned a lot from her, and been inspired by her. Just pray, pray, pray!

Also pray for Baby Livi and family. She'll be starting her transplant procedure next week. That little girl is such a trooper. Not to mention she is too cute for words.

Thank you, thank you, thank you!

Oh dear...

After thinking for a bit, I fear that I may be the reason that Joe is in the hospital. Just last week, I mentioned that I was craving a Pittsburgh Grilled Chicken Salad from the hospital Friendship Cafe. Of course, I didn't know when I'd get one, since Joe and I have been eating lunch at home - even on hospital days. Alas, yesterday, I was able to get my salad. But I didn't want it to be because Joe was admitted back to the hospital! So is this indirectly my fault? Nah.....

Joe continues to be doing well. Tests for CMV are drawn every Monday and Thursday. So tomorrow Joe will be tested again. The doctor said that he anticipates that the results will still be positive - although if it is negative, the doctor will celebrate with Joe! The doctor is also quite confident that by Monday, the test will be negative. Both CMV, and the Ganciclovir used to treat it cause neutropenia, so Joe's counts have been dipping. Treating Joe is really an art blended with science. Everything needs to be balanced. When the doctor was explaining things, it was like reading a "Choose Your Own Adventure" book. If "this" goes down to "this" than we'll need to do "this." But if "this" happens, we do "this." I'm just glad that the doctors are experienced and confident. Not to mention that ultimately, God is in control. *whew*

In other news, the shower in Joe's room was only spraying freezing cold water this afternoon, but it was quickly fixed. Yay! Joe's appetite has been great. So great that the hospital food actually seems appetizing. And, Mint Mojito is a pretty fun flavor of Orbit gum!

Since it has been requested, here is the link if you'd like to send cards to Joe while he is incarcerated...
WPAHS E-Card
He is back at West Penn Hospital, and for now he is in N-612.

Back in the hospital

My dear Joseph is back in the hospital. This morning, we were preparing to leave for Joe's semi-weekly appointment at the BMT office. Before we left, we received a phone call. It turns out that Joe's blood draw from Friday showed that he tested positive for CMV. Joe would need to be admitted. The frustrating part is that Joe has been feeling great, and looking great. So even though it is very important that he gets treated before the CMV gets out of control, it feels like he is going into the hospital for no reason. The fact that Joe is feeling great is also a blessing. Being positive for CMV post-transplant can become very scary. But thus far, Joe has been asymptomatic. The positive result is most likely caused by reactivation of the virus.

The treatment for Joe will be aggressive. He'll probably be in the hospital for at least a week. Joe will be getting IV Ganciclovir every 12 hours, that will run for an hour. This will happen for at least four days. After this, Joe will get a dose once every 24 hours. Even after Joe tests negative for CMV, he will continue to receive Ganciclovir for another two to three more weeks. By that time, Joe should be discharged to short stay. But this will mean we'll be back to our former routine of going to the hospital every single day. If this is what it takes to make sure that Joe is okay, than so be it!

The wonderful thing is that Joe remains positive and in good spirits. He is a trooper, he is! It's definitely not by choice, but the hospital is now a second home for Joe. Sometimes we call it the slammer, sometimes we call it a hotel. Depends what kind of mood we are in. :) Joe is well prepared for this stay, with his PSP, ipod nano, books, and sudoku.

No worries. Joe is going to be just fine. God has blessed us through every scary bit of this journey, and this will be no different. Thank you for all of your prayers!

Random

It seems that everyone wants to be like Joe. Apparently, even Britney has gotten the "I-wanna-be-like-Joe" bug. Either that or she has decided to become an avid supporter of AAMDS. Then again, maybe she is just being Britney. I think that as long as Joe doesn't try to be like Britney and get "something dainty" like a tattoo of "cute little lips on [his] wrist" everything will be okay.

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We had some more visitors yesterday. Ray is a new friend that we met...yesterday! Ed is the guy who helped to revamp the fliers used for the bone marrow drives held in Philadelphia and Pittsburgh. We actually met him for the first time yesterday as well. Jurica was one of our small group leaders back in Philadelphia. She was totally awesome. Ed spoke at PCC-Oakland this morning, and Ray and Jurica tagged along to be supportive. We had a great time chatting with them yesterday and catching up on things as well as learning new things. Good times!

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Actually, this Friday there will be another CLLF sponsored minority based bone marrow drive at CMU. Once again, the Lambdas will be hosting. There will also be another bone marrow drive coming up in the next month or two at Pitt. APAMSA will be working with CLLF.

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Our dear friend Lisa recently brought a relevant article to my attention.

Tuskegee's ghosts: Fear hinders black marrow donation

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Happy Chinese New Year everyone!
Thank you Julia for making Joe some homemade chicken soup. Yum!

98%!

We were back at the doctor's office today. Joe had his blood drawn, and his dressing change. Such excitement! But the really fun part was the visit with the doctor. After some chatting, he went to check on Joe's biopsy results. When the doctor returned, he announced that Joe is officially 98% female!!!!!! This means that he is 98% engrafted. Wonderful praise God news! Since that announcement, Joe just keeps hearing that he will likely become more feminine now as well as sweeter and more compassionate. Teehee. Joe of course is taking all the jokes like a man...or a woman. I don't know anymore. In any case, Joe's smile is as big as ever, and he continues to exude extreme positivity! Joe's biopsy also noted no more bad stuff, and all good stuff. Joe's celluarity, which is at 20-30% is still lower than the norm, which is around 60%. However, this is normal since he is only 38 days out from transplant. So all continues to go very, very well.

This evening, we had the pleasure of receiving a visit from some guys from our fellowship. It was so nice for Joe to hang out with some people outside of the family, and not over the phone! Thank you Geoff, Mammen, and Ray for stopping by!