Day +91

Photos make blogs more fun. Today, I didn't have a good photo to post, so I dug up a silly and random photo from the past especially for your entertainment.

We went to the hospital today, and aren't due to go back until Friday. Joe's rash - the main issue we've been focusing on for quite some time now - seriously seems to be getting better now. Although, it is still pretty severe. Joe is being kept on the same amount of steroids for now. The doctor fears that tapering too soon will cause the GVHD to flare up again. If that were to happen, the doctors would look to other drugs for treatment. In fact, even if Joe's rash continues as is for too long, other treatment options may be implemented - and they don't sound like fun. So please, let's pray that the rash stays in control, and in fact, continues to get better. We are indeed grateful for some GVHD, and we are very thankful that the GVHD has limited itself to the skin, but I think that it has worn out its welcome. I'm sure Joe would be quick to agree.

Other than that, and the fact that Joe constantly looks like he has an atrocious case of dandruff (despite having very few hairs) Joe is doing well. All of that hemorrhagic cystitis business has gone away, Joe's feet and ankles are back to looking svelte, and I'm seeing more of his smile!

Oh yes, Joe's blood draw. His WBC was a whopping 0.8 k/mcL (normal range= [4.4-11.0] k/mcL.) So Joe had another Neupogen (filgrastim) injection today. The lowness of the count may be connected to GVHD. It also could be due to a relapse - although everyone is pretty confident that is not the case. Just two weeks ago, Joe's chimerism test showed 99% donor. He did get another chimerism draw today, so we'll find out later this week how female Joe is now. Think 100%! On the positive side, Joe's hemoglobin continues to be good, and his platelets keep creeping up ve-ry sl-ow-ly.

One more thing. Over the weekend, Joe did a lot of sleeping. The thing is, most of his sleep happened during the day. The steroids seemed to work their magic at night when most people are sleeping peacefully and dreaming of vacationing in Fiji. Yeah, when he should have been sleeping, Joe was unable to. Not having to go to the hospital made it that much easier for Joe to sleep straight through the morning. I kept joking that I needed to ship him to Taiwan where the time difference would make his sleeping pattern normal! Thankfully, Joe fell asleep at a regular hour last night, so I think I might be able to keep him in the States for a bit longer.
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Happy happy belated birthday to Shelley!!!!!!! Hope you had fun celebrating your Easter birthday.

I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord.
~Psalm 40:1-3

Lovely Easter weekend.

Joe and I had a lovely Easter weekend. We were granted permission to stay away from the hospital from Friday through Monday. So, a nice four day weekend! Actually, it wasn't all nice for Joe. For much of the weekend, his rash continued to be pretty unbearable. Imagine going to Fiji...and returning with a sunburn...and then having your sunburn peel. Well, for Joe it has been no Fiji (except in his head), and just constant sunburn and peeling. Day in and day out. I realize I'm starting to sound like a broken record, describing Joe's rash. However, for now, each day revolves around Joe's rash. For the greater part of the day, Joe is applying lotion to every inch of his body. Thankfully, the rash did appear to get better minutely each day. We are hopeful that it is getting better anyway, and Joe seems to be tolerating it better. The good news, is that his CMV test from Thursday was negative once again!!!!!! We'll see what Tuesday's test shows. We're aiming for another negative!

On Saturday, we got to see my parents and brother in the early afternoon. My parents had borrowed my camera for awhile, and returned it with lots of family photos from their recent trip to Taiwan. My dad also shared photos that my aunt and uncle compiled of my grandmother. I'm sharing some of my favorite photos from the whole bunch! The first makes me laugh, and laugh, and laugh. It is my grandpa striking a pose, and my dad holding my grandpa's collection of sunglasses. Perhaps my dad gets his silliness from his dad? The next is my grandpa posing with most of my sweet cousins on my dad's side of the family. They are so grown up from the last time I saw most of them. The last two photos are from the "Archives." One, of my grandparents having fun and not looking like they were in their 80s. The last photo is of my grandma with one of her famous flower arrangements. I am so thankful for the blessing of photos, and the blessing of memories.

Early Saturday evening, we were blessed by a visit from Uncle & Auntie Yang, and Joe's parents. Uncle & Auntie Yang are Joe's New Jersey parents. Lucky for me, I've been adopted by them too. Auntie Yang is the kind of angel who is always prepared for guests. Even if you call her two seconds before ringing the doorbell, she will have a table full of food ready for you. Uncle Yang is the kind of guy who always has hilarious stories to tell. He also loves to sing and helped serenade us at our wedding reception! So you see, they were really special guests, and it was wonderful to see them.

The rest of the weekend was spent coloring Easter eggs, relaxing, and singing...

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

1.Good-bye guilt, good-bye fear, good riddance! Hello, Lord, Hello, sun! I am one of the Easter People! My new life has begun!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

2.Daily news is so bad it seems the Good News seldom gets heard. Get it straight from the Easter People! God's in charge spread the word!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone!

3.Yesterday I was bored and lonely; But today look and see! I belong to the Easter People! Life's exciting to me!

Ev'ry morning is Easter morning from now on! Ev'ry day's resurrection day, the past is over and gone! Ev'ry morning is Easter morning, Ev'ry morning is Easter morning, Ev'ry morning is Easter morning, From now on!

Words & Tune: Richard K. Avery and Donald S. Marsh, in the Avery and Marsh
Songbook, ©1967, Hope Publishing Co.

*grin* So all in all, it really was a lovely weekend. Now if we can just rid Joe of his rash!
~~~
Thank you so much to Uncle & Auntie Yang for coming to visit! Wish we could have spent more time together. Thank you also for the very generous gift.

Thank you to...
My Monroeville parents,
Ben & Eleanor Chan
Sherry, Tim, Tyler, & Noah
My Auntie & Uncle Wu
Dr. & Mrs. Drozdiak
Auntie S.B. & Uncle R.C.
Taiwanese Bible Class
Auntie and Uncle Chang
John & Donna Smith (A.M. & A.D.!)
Sue-Mei Wu
TC and Yuen Ching Chan
Tian-min and Hsueh-man Lin
Gretchen Allen
Paula Good...
for all of the love you sent my parent's way after my Grandma passed away. Your love and support was extremely appreciated.

Your attitude should be the same as that of Christ Jesus:
Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself and became obedient to death - even death on a cross! Therefore God exalted him to the highest place and gave him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.
~Philippians 2:5-11

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

Happy Valentine's Day!!!

Traveling is really exausting. Especially when you are going from Fiji to Narnia to Outer Space in a matter of days. Fortunately, I have a very wonderful and loving husband who is on steroids. So while he has been merrily blogging away extremely silly things, I've been granted the opportunity to bask in the sun, get pampered at the spa, and gorge myself on turkish delight and astronaut ice cream. (Hey, Joe isn't the only one with a vivid imagination! Or to be more clear, all of the above, with the exception of the wonderful and loving husband on steroids part, is just in my head.)

Joe has been making me laugh and making me crazy all at once. He has really been loopy this week, as you can see from his blogs. It has been so entertaining, I'd allow him to completely take over the blog if he wanted! Then there is the behind the scenes stuff. He hinted at it in his last entry. Joe has gotten major re-organization fever. We knew it would happen once the steroids started. We didn't know it would take a few days for the craziness to begin! As soon as I leave a room, to shovel massive amounts of snow (bundle up, stay warm, and drive safely everyone!), or get groceries, or brush my teeth, Joe gets busy. And he doesn't stop. Nothing is safe. Just when I tell him that something looks great, I turn around to find that it has moved again. It is a good thing that Joe has a good eye, or I'd really have a headache!

Right after Joe's transplant, he would sleep at least 16 hours a day. Now he is like Mr. Busy Beaver meets the Energizer Bunny. He keeps going, and going, and going... Before, even before the transplant business, when Joe would go to bed, he would fall asleep instantly. Now, he gets all chatty and tells me long epic stories until I fall asleep. I am not sure what will happen when the steroids are tapered to nothing and the effects wear off. I imagine the house will be more peaceful. :)

Well, I am extremely grateful this Happy Hearts Day to have such an amazing husband. It is truly incredible that after all he has been through and continues to experience he is still able to remain positive and make others laugh! He is quite a guy. And let it be known that he is all MINE! Woohoooo!

Happy Valentine's Day everyone! Even if you believe that today is an overhyped, sappy, squishy day used by Hallmark and flower companies to earn massive amounts of money - at the very least make it an excuse to let your family and friends know you love them. I mean, even if you let them know every single day, it doesn't hurt to tell them one more time. It's more fun than boycotting a day to celebrate love, right?

And speaking of Valentine's Day. A very happy birthday to two Valentine's Day babies!!!!!!!
Happy Birthday Albert! You are a super little brother!

Happy Birthday, beautiful cousin Pei-chen!!!! You have been so sweet and wonderful.

Very encouraging news

Hey there,

I think I'm breaking my own record here with the blogging. Now with this weather we're having, nobody can go out! Ha! Welcome to my world! Might as well enjoy my ramblings, right?!

I feel like I have to make a MAJOR DISCLAIMER here. It appears that there is mass confusion about Karen and I actually being in Fiji at the moment. I guess I had a lot of people going on that one. If only life were that simple. To make things clear, we are NOT vacationing on an island. On the contrary, I am firmly planted in Allison Park, so much so that roots are actually sprouting forth from my feet. If it were not for my bi-weekly visits with my parole officers (aka BMT doctors and nurses), I am going nowhere any time soon. But, this of course does not prohibit me from traveling anywhere I want (in my HEAD), like say the surface of the Sun or Narnia.

Today marks another BMT office visit and more encouraging news. My prednisone is getting further tapered since I am not having very much skin symptoms anymore. And results so far from the bone marrow biopsy have been quite promising... there are no detectable blast cells in the flow cytometry and the actual biopsy info so far looks "normal". There are still more tests to be completed on those samples, so I should have more information later in the week.

I have felt better these last few days than I have in a while. I now have very little physical pain (of course, this is not inclusive of the psychological and moral anguish... I've got Edgar Snyder on speed dial... the touch of a button I tell you...) Just kidding, please do not leak any info to Monsieur Snyder as he would probably be knocking on my door even through sub-zero blizzard conditions. In all seriousness, I am getting great care and TLC by all. The steroids have been making me a little wired, so God bless Karen, who has been putting up with me "re-organizing" the house. It's really more like relocating bunches of junk from upstairs to downstairs and vice versa.

Well, that's it for now. I'll keep you posted on what life is like from outer space.

God's love,
Joe

Bone marrow biospy: a cautionary tale

Hey folks,

Greetings from Fiji! The weather is great. There's nothing like hanging out at the beach soaking in the rays. If you haven't done so, you have to indulge in the suckling pig. I am currently exploring the depths of and finding new meaning to the term "cabin fever". My life right now should be titled a la Dr. Seuss "Oh the Places You'll Go! (in your HEAD)." Actually, it's not quite that bad. Through the miracle of books, TV, and the internet, I am becoming a world traveler at fractions of the cost of actual traveling.

Thanks to the awesome power of steroids, I get to experience mild euphoria, greatly improved appetite, and insomnia. So this gives me loads of time to think. Lest you think that this whole transplant process as been one honky dory moonlit beach walk through a bed of roses (or something like that), I wanted to ponder the bone marrow biopsy, since I still have the residual soreness from a few days ago. I want you to picture lying on a beach in the Caribbean on pristine white sand under the shade of an umbrella overlooking impossibly blue seas and crystal clear skies. You are, of course, sipping on a daiquiri while thumbing through some trashy, inconsequential novel. Now, picture the exact opposite of that. That's what getting a bone marrow biopsy is like. I think at most centers, they sedate children when they do these biopsies. But, oh no, not so for the "adults". I'm saying, where's the love man?! Slip me some of the juice! I'm pretty sure that Hollywood movie producers somehow slipped into the oncology exam rooms and parlayed their knowledge of bone marrow biopsy into mega-blockbuster hits like Saw, Saw II, Saw III, the Texas Chainsaw Massacres. But really... it's not that bad. :) But, like the title, this a cautionary tale, so the next time your doctor mentions in passing "We'll probably need a bone marrow biopsy" in the same tone of voice as if he were saying "Don't forget to get your parking validated on the way out", be aware. Be very aware...

That is my random rambling of the day. I continue to do very well. Of course, I am anxious to find out the biopsy results. We should have some info this coming week. This weekend had been very nice so far. Karen and I were able to spend time with my parents in Monroeville for dinner last night, and my in-laws came and had lunch with us this afternoon. Always good to spend time with family.

As always, thank you all for the support, love, and prayers. And do me a favor, go rent Saw this weekend. (I've actually never seen it).

God's love,
Joe

Day 30!!

Hey y’all,

I’m back on the blog for another one of Joe’s ramblings. Karen has been doing such an amazing job with the blog. She seems to have a knack for summarizing complicated series of events very perfectly.

Well, I did it! I’ve made it to the first major milestone Day 30 without any serious problems. Of course, the occasion was marked with having to get my 5^th bone marrow biopsy (but who’s counting?!) This will be the first direct objective data on how my body is responding, so let’s all pray for excellent results. It’s weird… internally my body is waging a war and I’m actually rooting for my guys to lose.

So to commemorate the occasion, Karen and I have decided to take a two week trip to Fiji, after which we will re-dedicate our efforts to my healing. We leave tomorrow morning. Of course, this scenario only plays in my head. Fortunately, I’ve got quite a few friends who we shall refer to as Bus, Big Ben, Slash, Chin, and Taz (strangely quiet Polynesian fellow) who come around just to say hey. (Sadly, also in my head) On the up side, I’m told I am permitted to have a few visitors to the house as long as they have no visible sores and have been decontaminated, disinfected, deloused, and preferably autoclaved x2. Apparently, even though my white counts are good, I’m still on so many immunosuppressive drugs that I’ve been told to stay away from public areas for a good many more months. Thank goodness for the internet.

Each day, I am feeling stronger and overall better. It’s seems like I’m constantly trading one set of minor problems for other set, but so far, no major complications. Praise God! I will tell you that I have new found appreciation for cancer patients undergoing treatments and anybody else with chronic illness. It’s a true test of strength, courage, perseverance, patience, restraint, faith, and anything else you can think of. There are so many opportunity costs with waiting in the lobby, waiting for results, waiting to see the doctor. The hospital literally becomes your second home.

Curiously, throughout this whole process, I think that my faith has strengthened. When I was admitted in the hospital in June, I was basically terrified and suffered two truly frightening panic attacks in which I thought I was dying. After the second one, I believe that God spoke to me, not in words, but by lifting a great weight off my shoulders. It’s then that I knew it wasn’t my time to go. And I haven’t looked back since. God has a plan. I’m still not sure what my role is, but I’m figuring it out. I know that He watches over me and my family because He has provided me with an excellent team of doctors and nurses and loads of supporters. Like I said before, I believe that most people are truly good. I think I received over 100 e-cards this last visit at the hospital (a new record) and many were from people I know only peripherally. I even got one from a brief acquaintance of ours from the Netherlands! And that’s not including all the countless other cards and gifts we’ve received. Thank you so much!

These days, I continue to do a lot of reading (when I’m not dozing), watching TV / movies, playing Scrabble with Karen, and basically just trying to make the best of the situation. It’s pretty easy staying positive when you’ve got a wife like mine. She’ll instantly cheer up any room. Like one of my colleagues said, this isn’t just positivity, it’s EXTREME positivity. Well, be on the outlook for postcards from Fiji. We’ll talk to you when we get back.

Joe