Day 2 & 3 (and the start of Day 4!)

Often our blog entries are watered down versions of our day. Not everything needs to be on public display. But try to imagine all the different challenges that are generally associated with men who are 93. At 33, Joe is experiencing so many of those challenges, and it's not easy. It is already difficult to watch someone who has lived a full life suffer all of those indignities...to witness Joe experiencing those challenges at a time when he should be on top of the world is just so hard. There is comfort in knowing that all of this is temporary and Joe has the strength and will-power to get past all of this "stuff." Oh, but it is still so hard. Joe is an amazing guy though. On Day 2 of chemo he was feeling so drained. The chemo seemed to really hit him, and Joe had little energy, little appetite, and everything just felt so frustrating. Yet at the end of the day when we were winding down, I just casually asked, "Do you have any closing thoughts for the day?" Joe responded by telling me all of the things that he was grateful for and everything that made the day a blessing to him. I couldn't believe that after such a difficult day, Joe was still able to be so genuine in counting his blessings. Such an incredible man he is.

Yesterday was a much better day. Joe was able to eat a bit more. His breathing was better. His mood was better. And, he finished his final dose of daunorubicin (the cherry kool-aid!) Today begins day four of the Ara-C. Overall, Joe is tolerating the chemo very well. He is more tired, and has less of an appetite, but there has been no nausea. Most of the things that make each day difficult are the things that Joe was experiencing before the chemo started. The doctors are trying to address each of those issues the best they can. The fact of the matter is, Joe is really good at challenging everyone!

That's it for now. Thank you for your continued prayers!
~~~~~
Louis - thank you so much for the card!!!!! It was a really nice surprise. You are in our thoughts and prayers.

Day 1 of Induction Chemo.

So far so good. Joe did really well today. Yesterday, we were all a bit concerned because Joe's breathing was really labored for much of the day. This morning, the chemotherapy was started. The cytarabine comes in a huge bag and runs for 24 hours. The daunorubicin runs over 15 minutes and looks like cherry Kool-Aid! Joe's breathing was actually much better today. After turning up his oxygen to 4L yesterday, we were able to bring it back down to 2L today. Big praise. Another big praise is that Joe had relatively few interruptions in the afternoon, so he was able to catch up on a lot of much needed sleep.

On a sadder note, this afternoon a dear man who was on the floor passed away. We had befriended his family, and are heartbroken for them. The wife was such a sweetheart. With all that she was going through she took our family under her wing and would surprise us with chocolates or fresh grown zucchini. The children were all wonderful as well, and always took the time to ask about Joe. Please keep the family in your prayers. The couple was married for 53 years. Such a beautiful family.

Slight change of plans.

There has been a slight change of plans. This morning, we learned that two out of four cultures drawn from Joe's PICC line yesterday were positive for gram-positive cocci. Joe was getting that line pulled today anyway, so that part was okay. Joe was sent down to Interventional Radiology and got his fancy new triple lumen. The folks in IR took really good care of Joe. How could they not, right? As far as the chemo, that is being put on hold until Saturday so that everyone can be sure that there is no more bacteria.

That is the super quick summary. If you know anything about hospitals...particularly teaching hospitals, you know that the day didn't go that smoothly. But I figured I'd be nice and spare everyone the boring details! The important thing is that IR rocks. :)

To be honest, last night when we learned that Joe would be getting induction chemo today, it seemed sudden - and yet we felt a sense of relief. After all, these past few months we've been doing so much waiting and seeing. We knew that the induction chemo was coming sooner or later. It was almost like a burden was lifted to know that something was finally happening. I think we're all at least a little nervous - mostly because of Joe's lungs - but we do feel that the right decision has been made for right now.

Now it seems we have to do just a little bit more waiting. Just when we were all geared up and prepared. Just a little bit though.

p.s. miraculously, i've discovered that we can view all blogger blogs again. i don't know if this is temporary or permanent. but while we can, we'll play some catch up. :)

~~~~~
Thank you A.M. & A.D. and my Mommy for the cards!

And I totally forgot the other day. Thank you, thank you, thank you to Alice, Crystal, Jomei, Lei, & Sha for stopping by and bringing us all the yummy goodies. It was great to see your smiling faces, and great to enjoy the yummy goodies!

Update.

We talked to the doctors this afternoon. The preliminary results of the biopsy showed 8% blasts, which didn't end up being as good as it sounds. Joe's marrow appeared to have a lot of abnormalities, and so another special test was done that is more specific and accurate. The doctors were able to get these results by the end of the work day. The computer (?) showed that Joe's marrow had 10-20% blasts. A manual count gave a result of 27% blasts. Either way, the doctors thought that there were enough cells that were dysplastic/abnormal to warrant starting induction chemo right away. The other issue is that while Joe's neutrophils appeared to be climbing gradually, a closer inspection showed that the neutrophils aren't normal. Therefore, the neutrophils likely aren't doing what they are supposed to be doing, which is help fight infection.

Tomorrow morning, Joe will be trading in his PICC line (in his arm), and going back to the ever-so-lovely triple lumens (neck area.) Oh how we loved the PICC line. It was good to Joe.

At some point tomorrow, after getting his new line, Joe will be started on a "7+3" regimen. Joe will be receiving cytarabine (Ara-C) for seven days. Apparently, it is given continuously throughout the seven days. During the first three days, Joe will also be getting daunorubicin. Recovery takes a month. During this month, Joe's doctors will be working hard to pave the road to Minnesota. We are hoping and praying that this induction chemo brings Joe to remission. We are also praying that somehow, some way, Joe's lungs get better. With God all things are possible & nothing is impossible. So, that seems to be a reasonable request.

Tomorrow is a big day! Thank you for all of the continued love and support.
~~~~~
Congratulations to Pastor Jim & Kathy on being brand new grandparents!!!!!!
~~~~~
So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
~Luke 11:9-10

#10

On Monday, Joe had bone marrow biopsy #10. (Amy W., we hear that you're getting #10 pretty soon too. And so the competition continues!) Since Joe had the biopsy as an in-patient, he had the privileges of getting all morphined up. The plan is that if the marrow shows less than 20% blasts, Joe will likely get another round of Dacogen/Decitabine. If the marrow shows greater than 20% blasts then Joe will be started on induction chemo. The induction chemo is a 7-10 regimen that has the intent of bringing Joe back to remission. There are several chemo "cocktails" that can be given - some more aggressive than others. All of them are pretty powerful though, and the recovery period is generally one month.

By this morning at 8am the doctors were supposed to have some preliminary results. They were also planning on taking thoses results and having a meeting about what's next. We haven't heard anything yet.

Joe's breathing has been pretty stable for the past few days. He is still on 2L of oxygen, but episodes of being really short of breath seem to be decreasing in number and duration. Joe is still experiencing fevers as well. None of them are too high, and they are all manageable.

The toughie these past few days is that Joe has been experiencing a lot of pain from things that aren't necessarily directly related to his disease. When Joe isn't feeling physical pain it is not so hard to stay positive and look at the greater picture. But when Joe is feeling physical pain. That's really difficult to deal with. It just seems so unfair that with everything Joe is already experiencing that extra torture has to be thrown in there to make things even more difficult. Well, there is no denying that Joe is a tough guy. He will get past this hurdle, just as he's passed so may others.

~~~~~~
I wait for the Lord, my soul waits, and in his word I put my hope.
~Psalm 130:5

The adventures of J.L.

Tuesday evening, I went home for the night. I was confident that Joe was doing really well and happy to give him some alone time. I love spending time with Joe so that I can help him with various little things and so that we can encourage each other in this journey of ours. But I do make sure to disappear for at least a little bit each day so that Joe can have some time to himself - without someone breathing down his neck. :) Every few days I will either go home for the greater part of the day, or go home for the night. I always joke around with Joe that these are the days that he decides to cause trouble. Tuesday night, Joe did not disappoint. When I left, he was smiling and content. Turns out he had a miserable evening of fevers. The fevers were not quite as bad as in the past, but it was enough to ensure that Joe got very little sleep. Such a trouble maker.

By Wednesday morning, Joe's temps were much better. He was experiencing bone pain from getting Neupogen though. The doctors suspected that the fevers were probably from the Neupogen as well. After all, Joe hadn't spiked a fever for a week. Joe had been getting Neupogen approximately every three days, but this week he had two in a row. That seemed to be a good explanation for the fevers.

Another event on Wednesday was that Ms. Joanne decided to check up on Joe via the blog from a West Penn computer, only to discover that the hospital system had blocked it. More specifically, all blog sites were blocked because they are considered "personal & social." Ms. Joanne contacted Ms. Lilly about this woeful event. Ms. Lilly promptly contacted Mr. Mike the computer dude. By Friday, Mr. Mike the computer dude with a big heart made sure that the folks at West Penn could once again keep up with Joe's blog. (Thank you, thank you, and thank you!!!!!) Joe's blog is the single exception though, so we can no longer keep up with our other blog buddies from this hospital. But we do know that Ann and Christine both had super duper amazing praise God kinda weeks in their journey. Yay!

Early Thursday morning Joe had a Chest CT scan. The results showed that Joe's lungs looked pretty much the same. Perhaps there was *slight* improvement on one side and *slight* worsening on the other, but overall things looked the same.

All week, Joe continued to experience shortness of breath and intermittent fevers. Sometimes Joe could go hours without oxygen, sometimes not. Joe averaged about 1-2L with the nasal cannula.

This morning was pretty scary. Joe started feeling some pain on the right side of his chest. It was near the site of his CT guided biopsy, so Joe assumed it was some lingering pain. Unfortunately, as the morning progressed Joe began to feel pain on both sides of his chest. After being given some meds for the pain, Joe decided to try and "sleep it off." After a bit Joe seemed to feel better. He went to the bathroom and then decided to try sitting up, rather than returning to bed. Suddenly, Joe had a really difficult time catching his breath and the pain seemed to be unbearable. Joe's oxygen was turned up to 6L., he was given a breathing treatment, and a portable chest x-ray and chest CT were ordered. Soon after all the craziness, Joe started to feel much better. By afternoon, Joe's oxygen was gradually decreased back down to 2L. Right now, Joe is feeling pretty well. We're still not sure what happened? The doctors were worried about a pulmonary embolism which is actually possible even with low platelet counts. There was no sign of that. Praise the Lord. The odd thing is that the CT scan seemed to be much uglier that it was just two days ago. It is hard to figure out what could cause such a change in just two days. Everyone is hoping that it is just more fluid overload, because that is a relatively easy fix. In the meantime, everyone continues to keep a close watch on all things related to Joe's lungs.

And so we continue to pray for healing in Joe's lungs even as we continue to pray for complete healing for Joe.

If you haven't already, go read Jim & Jesse's most recent blog. It is their last on-trail entry. These guys are so incredible. We couldn't be more thankful for their energy, determination, heart...and even insanity. You can even watch videos from their trek. Follow the link or search for "marrowtrek" on youtube.com. Jim & Jesse's craziness in the name of charity is really mind-boggling. Keep them in your prayers!

Speaking of which...thank you everyone for being so faithful in your prayers, good vibes, and thoughts for Joe. Hugs for everyone!
~~~~~
Thank you Michael, December, & Ian for the card!!!!! It was a sweet surprise.
~~~~~
Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him
~Psalm 126:5-6

hello!

It feels like it's been a long time since I've posted photos. So here are a few...

This was Joe, heading off for his CT guided biopsy this past Thursday.

Joe has been on and off of oxygen. Each new day, he's on it a little less and off of it a little more. Because of Joe's low WBC, he has been wary about walking out in the hallways too much - even with a mask. Joe's current room is quite big though. So for exercise, Joe paces the room, and maneuvers an extra long oxygen tube. Kinda like a puppy leashed to a tree!

Joe posin' with a bottle of Red Ribbon Cherry Supreme!

Things are going relatively smoothly. It seems that the Decitabine that Joe was given is working better than expected. Joe has had a couple low-grade fevers recently - but they have been low enough to be considered non-fevers. Another exciting thing is that the amount of blasts (immature white blood cells) in Joe's peripheral blood is decreasing. Something is definitely working! Joe will be getting yet another bone marrow biopsy soon (#10, if you're counting!). The results may influence the next step in Joe's treatment. If a large decrease in blasts is found in the marrow, then the doctors just might give Joe another round of Decitabine to give the lungs some extra time to get better. If the blast count remains unaffected, then induction chemo will likely begin soon.

As for Joe's lung biopsy, we were supposed to get the final FINAL results today. We didn't get the official final results yet though. What we were told is what we've been told...everything has come back negative. The only sign of anything has been some hemorrhaging (quite possibly from the biopsy itself) and some chronic inflammation. This doesn't explain why Joe still experiences episodes of shortness of breath or why he still experiences fluid buildup in his lungs. We'll just keep on praying.

Here's a fun story about Red Ribbon Cherry Supreme. On Friday, Pastor Jim stopped by to visit us in the hospital. You can always count on talking about everything under the sun when you're with Pastor Jim. Somehow, we started talking about stuff on TV, and how one of the local stations, WQED will often have these specials about Pittsburgh. During Joe's last admission, we watched one of these specials and learned about a local bottling company that makes this famous cherry soda (er...pop) the old-fashioned way. We found it weird that we had never heard of this drink that was supposed to be local. When we asked Pastor Jim about it, he had never heard of it either. Well, wouldn't you know...Monday morning we heard a knock on the door. In the mornings, between the doctors, nurses, dietary, and pharmacy, someone is coming in or out every five minutes. We were so shocked to see Pastor Jim appear! He looked like he was smuggling in bottles of beer. Turns out, Pastor Jim looked up Red Ribbon Cherry, and his lovely wife called the company (which is in Natrona) to find out where they sell their products. It seems they sell a lot of cases through beer distributers? But Pastor Jim & Kathy were able to find a local place that sold individual bottles. FUN!!!!!! Joe and I have had the privilege of trying the famous cherry soda and the root beer (We prefer the root beer!). Joe will also be trying the "Mint Julep." According to a lady at the bottling company, their mint julep has calmed the tummies of people on chemotherapy! Who knows?

~~~~~
Thank you Pastor Jim & Kathy for hunting down the Natrona bottling company!!!!! It was such a fun surprise. Pastor Jim - thank you for scaring my socks off. I had no idea the bottle opener would start spewing out Steelers stuff! I thought that the television was haunted. :) Joe thinks the opener is so cool.

Thank you to our parents for always taking such good care of us. We love you!!!!!!

Still smilin'!

Joe is still in the hospital and he's still smiling! His biopsy site caused him some pain at times last night (yay for pain killers!), but today it was much better. The preliminary results so far show some inflammatory cells (not surprising) and no sign of fungus. Not sure at this point if that is a good thing or a bad thing. (Do we want them to find something so they know how to treat it? Or do we want them to find nothing...and still be confused?) Before the biopsy, several doctors were pretty sure that what Joe had was some kind of weird fungal infection. We'll see what the rest of the results show when they come back. In any case, the doctors feel that several good samples were taken during the biopsy. It seems pretty certain right now that even if everything comes back negative, Joe will not be getting a VATS. The surgeons aren't fond of the idea because they feel the risks may outweight the benefits. None of the family is fond of the idea of a VATS, so we're definitely siding with the surgeons. Heal, lungs! Heal!

Joe's breathing varies. Parts of the day he'll feel fine, even without oxygen. At other times Joe definitely requires oxygen. The doctors definitely don't want to send him home while he's dependent on oxygen, so Joe will be sticking around here through the weekend. It's only been nine days so far...BUT, Joe was only supposed to be admitted for three days. Yeah right. At least he has the "VIP" room!

Joe still has a healthy appetite. He is still CMV negative. And he is still an A+ wonderful husband!
~~~~~
Thank you Pastor Jim for stopping by for a visit! We always love chatting with you.
Thank you LihJen for the yummy squash!!!!!
Thank you Brian & Talmage for stopping by!

Biopsy.

Joe is such an enigma. As you know, I recently wrote about Joe feeling better than ever. Wouldn't you know, a CT scan yesterday morning showed that Joe's lungs were looking a bit worse! So the doctors finally said, "no more waiting. We're getting a biopsy." There is a CT guided biopsy and a Video assisted thoracic surgery (VATS.) The CT guided is definitely the lesser of the two evils. The VATS is really invasive and recovery can be rough. It was decided to go for the CT guided.

Joe just came out from his biopsy about an hour and a half ago. He felt pretty well. Joe wasn't allowed to eat until the procedure. The procedure was pushed back from this morning to the afternoon. The doctors wanted to make sure Joe's platelet count was high enough before moving forward. Joe had two transfusions in the morning, and one during the procedure. After Joe got back he was STARVING. He ate a big sandwich (with meat!), a banana, and a cookie...and enjoyed it. This is huge because Joe's appetite hasn't been quite normal, and anything with meat or seafood has been very unappetizing. So yay for a returning appetite.

Pray that Joe continues to do well. And pray that the doctors are able to learn something from the results of the biopsy. The yield for the CT guided isn't always high...and so the possibility of a VATS still looms there in the shadows. Obviously, we'd like to avoid that.

Thanks for the continued prayers! And thank you to the lovely person who sent Joe a card.
~~~~~
WEST PENN BLOOD DRIVE
Typing for National Marrow Donor Registry also available.
(Open to all employees and hospital guests)
Allegheny and Liberty Rooms (off the cafeteria)

Friday, July 13, 2007, 7:00am-3:00pm

Update.

Joe looked and felt so much better today than yesterday. One big perk was that he hasn't experienced any fevers since yesterday afternoon. The funny thing is that since Joe had a normal temperature the whole day, he was much more attuned to the temperature of the room. The thermostat in the room is super sensitive...and I'm pretty sure it lies about the temperature. I generally just leave it alone and keep a jacket handy. But of course I wanted Joe to be as comfortable as possible. Unfortunately, the thermostat only does "tropical" and "arctic." Honestly. There is this little turny thing on the bottom. Half a millimeter in one direction made the room super toasty (better to imagine Fiji, perhaps?). Half a millimenter in the other direction made the room quite cold. Joe did acknowledge that he should probably be thankful for the cold considering it was in the 90s outside.

Just to bore you even more with the details of the thermostat...the "turny thing" claimed that the temperature of the room would be 70. (half a millimeter in either direction is pretty much all seventy.) The thingy on top (yes, I realize I'm very technical) that shows what the actual temperature is kept reading between 78 and 80. Lying thermostat. :P

Joe's breathing was significantly better today. There was less coughing, and Joe only required one liter of oxygen. (Yesterday, he needed four.) Late in the evening, Joe felt a little bit more shortness of breath. He'll be getting some Lasix since it worked so well yesterday.

So overall it was a great day. Joe was even CMV negative. THANK YOU for all the prayers. Keep them up, because they are working!

About Joe's hospital stay.

Joe's hospital stay has been a lot of ups and downs and rehashing the same old debate over his lungs. Our biggest prayer right now is that Joe's lungs miraculously clear up, because they continue to create mass confusion amongst the doctors. Nobody really knows what it going on in there. The debate continues. Is it a fungal infection? Is it a type of pneumonia? Is it disease related? Over the weekend, Joe's breathing started to get worse. Just standing would cause shortness of breath. Joe started getting oxygen again for sleeping. Then yesterday he started using it a bit more during the day. A dose of Lasix last night (for fluid overload) made Joe's breathing feel better...but his oxygen levels remained low.

This morning Joe felt completely miserable. He woke up with a fever, which ended up going up to 103.3. Breathing was difficult, so Joe's oxygen was bumped up a bit. And this nagging cough that Joe has had seemed to be even worse. Needless to say, we were all pretty anxious this morning. Each doctor that came in pretty much said, "yeah, you look & sound worse. We have no idea what it is. We're hesitant to biopsy...but it still might need to happen." Joe's meds have been shuffled a bit, and Joe was given another dose of Lasix.

As of right now, it seems that Joe's setback this weekend may just be from a fluid overload. Because this afternoon Joe looks and feels so much better. He looks like a different person from the dude I saw this morning! We just keep praying for healing in his lungs. A chest x-ray was taken this morning. So far we just know it showed some excess fluid.

Joe finished his last dose of decitabine this morning. Despite all that I've just mentioned, Joe was able to tolerate the chemo quite well. There were a couple instances of mild nausea, and that's about it. Now we sit and wait for at least a week to see how things are going. Joe's doctors would love to start Joe on heavy dose chemo to get him into remission (the decitabine is mostly to keep things under control) - but they keep hesitating because of the whole lung issue.

As far as the CMV. The past few results have been...postive...negative...postive...negative. That CMV is just teasing us now. I don't like it.

Let's pray for Joe's lungs!!!!!! :)
Thanks everybody for caring so much. We can be quite silly & dorky. But when you're facing something so serious, silly & dorky is the way to be.
~~~~~
Happy wedding day to Melanie & Scott. Yay for 777!
Happy birthday to Lauren. Glad I was able to talk to you. :)
~~~~~
Thank you Nancy for serenading me!
Hey there Lilly P.!!!!! Thanks for letting me bother you all the time, listening to me whine and grump and vent, and sharing juicy stories! :)

About Joe's birthday.

Thank you so much to everyone who helped to make Joe's birthday week so enjoyable. Joe was so appreciative and overwhelmed by all the love and encouragement he received. Simply being out of the hospital and not getting a "hideous" rash made this year better than last year. Beyond that, it was all love, love, love. The girls in short stay saw that it was Joe's birthday and had a cute little cake sent up for him. Joe's gift from the his doctors & the radiology department was a CT scan! Far better than a rash, don't you think? We had the lovely family dinner that Joe wrote about. And Joe received so many cards, fun photos, songs to listen to, creative videos...the works. Our church congregation even sent over a video of everyone singing happy birthday to Joe. How awesome is that? So thank you, thank you, thank you for making Joe feel so loved. I have a list of thank yous. I apologize in advance if I miss anyone. Feel free to send me an angry email. :)

HUGS & KISSES for everyone! We love you. :)
~~~~~
Thank you to.....
1st Auntie & Uncle
2nd Auntie & Uncle, Iju & David, Li-Ming, Ocean
3rd Auntie & Uncle
A.M. & A.D.
Albert
Alice
Allison - allie357
Anita Martin
Ariel, Kelly, & Walker
Auntie & Uncle R.C. Lin
Auntie & Uncle Yang
Bekah
Beth & Dave
Carole & Coco
Cathy Liang
Christine - princessbaby
Christine Pechera
Cousin Cathleen
Cousin Lilly
Cousin Pei-Chen
Cousin Sandy & Osamu
Dianna
Eckel77
Emma & Mike
Evonne, Thomas, & Leah
GLA (Praying for you every single day.)
Greg
Jennifer - beaksgirl
Kenny Ung & family (The photo was so funny. Joe thinks he makes a better looking doctor!)
Kevin & Melissa
Lauren & Eric (Points for cuteness & creativity. :) )
Lena
Lily Peng
Louis
Marcus
Melissa - sigkapbride
Nancy S.
Nss
Pastor Jim
Phyllis
Rachel Ung & gang
Rune, Van, Hannah, & Noah
Sara M.
Sara - Labbattsmom
Sha
Shanna
Sheena (thanks for lunching with me & sharing those CDs!!!)
Shelley (the comic was so perfect!)
Steve, Karen, Rachel, & Nathan
Victor J. (just say "no!")
Vince & Joanna (the video was so great!)
...for your cards, emails, encouragement, and/or participation in birthday project 070307!

Thank you Auntie Chuang for the delicious home-baked cake. It was SO delicious! We loved it.
Thank you Auntie Liang for the..."ba-tsang." So tasty.
Thank you Caryn, Eric W., Vivian, & Van for sending songs that touched your hearts. Joe enjoyed listening to each of them.

Thank you Myra for the books! Joe's reading kick continues. :)
Thank you Brian & Val for stopping by to visit.

Thank you Patrick for the visit and all of the photos. They were great.
Thank you Ray (And all of your helpers!) for the photos with a twist. They are so great, and will definitely make for good conversations!

Thank you PCC PE congregation, the 7th & 8th grade Sunday school class, Abbey, Rachel Ung & the rest of the Ung gang for the very awesome surprise!!!!!! The videos were just the sweetest things. So, so, cool. And Joe is loving the other added goodies too!

No more cryin' there.

Sweet Baby Livi went home to be with the Lord on July 6, 2007 at 2:45pm. In her short time here on earth, God used that little girl to touch so many hearts. The impact Baby Livi had will surely continue to reveal itself for a long time to come.
Please continue to lift her family up in prayer.

Back in the slammer.

Before you do anything, please, please take the time to lift sweet Baby Livi and her family up in prayer. They could really use it. Thank you.
~~~~~
As planned, Joe is back in the hospital in room T-713. It is a large spacious room, so everyone was joking that Joe has the VIP room and is being treated like a king. Meanwhile, Joe is doing an incredibly good job breaking in the new residents and fellows. Bless their hearts. They are sweet but such obvious newbies. Everything has taken so much longer than necessary. We arrived yesterday morning, and pretty much nothing was done for over 6 hours. It was really quite silly...and frustrating. But as they say, "never get admitted to a teaching hospital in July." My husband is so sweet that he got admitted two July's in a row.

Joe had a rough night with ongoing fevers. By late morning his fevers were better. Joe started his chemo around 2pm, so he is about halfway through his first dose. Each dose runs for three hours.

I'll try to keep everyone updated. I'm sure there is more to share, but I'm not feeling very wordy right now. Imagine that. Thank you to everyone for all of the encouragement and prayers. We appreciate it so much.

~~~~
Christine celebrated her 1 year BMT birthday yesterday. HAPPY BIRTHDAY!!!!!! Nancy, who was Christine's hospital neighbor is about a year and a month out and is at 100% engraftment. Yippeeeeee!

Happy belated birthday to Julie O. and Eric S.!!!!!

And a Happy 1 month birthday to Ocean!

Happy July 4th

Happy fourth of July everyone! I hope you are all out having fun with picnics and spending time with family and friends. Thank you all for helping to make my birthday a million times more enjoyable than my birthday last year. It's good to be reminded how old you are getting. Thank you so much for the well-wishes, cards, e-cards, personal song selections, homemade cakes, and gifts. Yesterday, I had to go to medical short stay to get bloodwork and I needed another platelet transfusion (no real news there). I also got yet another CT scan of my chest since my breathing has not really gotten much better or worse. Fortunately, the scan showed no significant changes. That evening, our families got to enjoy an evening together without talk about cancer (but of course, when our families get together, there's always some talk of cancer). To give Karen a reprieve from cooking, both moms cooked 2-3 Taiwanese dishes each and we had a blast with all the great home cooking. It was nice to just be in each other's company outside of the hospital setting. And to top everything, Karen baked a delicious double layer cake in my favorite Steelers colors.

So here's the lowdown on the 411 on Operation Opening a Can of Whup-Ass on Cancer (OOCW-AC). I was quite appalled to find out that the highly recommended militiamen that I hired to protect the princess donor cells and to decimate the cancer cells ended up just not being up to the task. Initially, these militiamen were vigilant and focused on their jobs. They thought it was a piece of cake. But as time passed, they started kicking up their feet, watching European football nonstop, and getting bloated on corn chips. Part of the reason why was that all the princess donor cells looked like Angelina Jolie (you'll like the reference dad: why again?) in those Tomb Raider costumes. So militia guys figure: "You don't want to mess with these girls! They can take care of themselves. Hey, move your head, I can't see the TV." Well, that was the beginning of the end folks. Cancer cells got wise to all this and employed a series of ambush guerrilla warfare tactics to take control of the entity called Joe. We don't know where Angelina Jolie is and it is assumed she is MIA or KIA. Her whereabouts are unknown.

Now, obviously, I don't really appreciate cancer cells being all up in my bidniz. They have free run of the joint right now, eating all my food, reprogramming my DVR, tipping over my rare Sumatran centerpieces... Hence, the Elite Special Forces have been employed and these guys are good. They're going to be led by a miniaturized Special Agent Jack Bauer who has signed on for the job. Jack tends to be a rogue, but he promises to lead this special task force to victory. As we speak, the ESF are infiltrating the entity call Joe and will be awaiting specific attack orders. These are shoot to kill orders. If necessary, heavy arterilly, fighter jets, and gunships are ready to be deployed, but we are not underestimating the ability of Jack Bauer and his men.

(Side note: ever notice how if Jack Bauer is teamed up with local police or FBI or something that all the police and FBI guys are dressed in full body armor and helmet with eye shield, but Jack not only does not put on a helmet, but often he'll pull off his flak jacket and leave it on the floor. He should at least where goggles or something.)

Okay, for those of you who thought the last 2 1/2 paragraphs were too technical or I am showing signs of mental illness, it is clearly obvious the first bone marrow transplant failed. All of the doctors at West Penn had a big discussion (also taking into consideration Cleveland's suggestions for treatment). Our doctors here are in consensus that treating me with a high dose chemotherapy right now would be too toxic. Since something has to be done to keep the disease in check, I will be receiving "lighter" inpatient chemotherapy with an agent called decitabine. It's given every 8 hours over 3 days (9 doses) and I'm told it's pretty well tolerated. I still will need to have the stronger induction chemotherapy at some point, but this will at least buy more time for my lungs to heal or for the lesions in the lungs to further declare themselves. I'm being admitted again to the hospital tomorrow (Thursday) for a "tune-up" day because I'll need both blood and platelet transfusions. I'll start the chemo on Friday. Please pray that we made the right decision!

God's love,
Joe

Happy Birthday, Joe!!!

Pleas for prayers please!

Hey,

It's me again. I guess I tend to blog in spurts but this one is mostly therapeutic for me. God works in mysterious ways, and He apparently thinks I need more challenge. And this may be the biggest challenge so far. My preliminary bone marrow biopsy results seem to show that my disease is one aggressive bastard mofo (30-40% blasts for those who this means anything) which transforms my disease from MDS to AML. This has me pissed. I am now sending out the Elite Special Forces Marines, you know, the ones that are psychotic and born that way! I am soon to be facing some high dose chemotherapy to get back into remission, but there is concern about the ever present CMV issue (which popped up positive again) and the state of my lungs. It would be great if the findings present on my chest CT scans would just go away because no one can guarantee that there isn't some brewing infection there. Everyone is curious to biopsy the lungs but any invasive procedure can be extremely dangerous for me at this point and may jeopardize my chance for a second transplant. I think I need the chemotherapy pretty soon, so please pray that all my doctors, me, and my family make the right decisions because timing is everything on this one.

On the bright side, the doctor I was hooked up with in Cleveland has turned out to be so wonderful and has been working above and beyond the call of duty, and I now have another experienced BMT doc on my team. Unfortunately for some, when the time comes, it looks like my second transplant will not be in Cleveland (Janet & Frank and Maria, I have to call you sometime. We were so excited to have you guys nearby.) I am being referred to the best of the best in umbilical cord blood transplants, which happens to be the U. of Minnesota, so that's where we plan to go.

Update on my bone marrow biopsy #9: I did receive sedation (Ativan and Demerol), and although it was the best biopsy experience I've had so far, it's been one of the sorest (is that a word?) after the biopsy. I guess there's a price for everything. I didn't grovel enough to take home that doggie bag... New environment... Threw me off my game... And Amy, if you are out there reading this, I am now neck and neck with you, but this is one race I'd gladly lose!

It is good to finally be an outpatient again, even if it's probably only for a couple of days. The plan is for me to go to medical short stay to get labwork and platelet transfusions until a decision is made on when to start chemo. I'll tell you... sleeping in your own bed with your wife next to you is like nothing else!

One final thing... I HAD to go to the driver's license center today to get my photo taken and get my license renewed. My license expires on Tuesday and I didn't want the hassle of dealing with an expired one. Fortunately, there is a center very close to our house, so Karen drove me there this afternoon. As we walk in there, a hundred other people apparently had the same idea, but we're thinking I had to get this done even though I'm taking a bit of a risk. Fortunately, the center is pretty spacious and it didn't end up taking too long. The funny thing is... the center looked like the UN. Seeing how Allison Park (where we live) is like 98.7% Caucasian (of course, I am exaggerating), we didn't know where all these people came from! There were all sorts of people in there, but I think I ended up being the most curious UN member. I was dressed normally, but having a surgical mask on gave me alien status. I was sitting in the back, and when they called my number, I walked confidently to the front desk with my mask on and I saw a hundred pair of inquisitive eyes! And this happened twice because I got my picture taken the first time and waited to pick up my card the second. A lot of people must have thought "TB!" because of that guy recently, or if they remembered far enough back, they might have thought "Asian guy! Bird flu!". So I tried to cough as much as possible throughout the whole process. Just kidding! That is no laughing matter kids. Under no circemstances should anyone accept those above mentioned serious diseases as payment for anything.

OK, I'm out. In all seriousness, please pray for Karen and me and our families about these upcoming days. I'd like to stick around to provide you with corny jokes and excruciating long self-deprecating blogs once every 3 months.

God's love,
Joe

What a day...

We are back from Cleveland. Joe was discharged from the hospital last night; a few days later than anticipated. Joe was still spiking fevers several times a day, and each day the spikes seemed to be a bit higher. However, there was no way that Joe was going to miss this trip to Cleveland. So last night, Joe made it back to home sweet home!

This morning, Joe's parents arrived on our doorstep at 6:45am. We were joking around that it felt like Joe just finished five and a half weeks of summer camp, and then we were heading off for a family vacation! Or maybe a field trip.

Traveling to Cleveland went smoothly. We arrived a bit early, and Joe was kept busy filling out pages and pages of forms. When we were called into the office, Joe had a little label slapped on his shoulder. It really made it seem like Joe was a kid on a field trip...except these days, name tags are usually slapped on the back of a kid, i think.

The meeting definitely did not go as planned. But we don't believe that this is a bad thing. After much discussion, it was decided that Cleveland may not be the best place for Joe to receive treatment after all. I'd rather not go into detail here, but by the end of the meeting everyone agreed that it would be in Joe's best interest to go to...Minnesota (anyone have any connections up there?). The University of Minnesota Cancer Center is internationally recognized for its work with umbilical cord transplants. The doctor we met with today and Joe's doctor in Pittsburgh will be working together to ensure Joe is able to get a transplant in Minnesota. It is true, going to Minnesota will take Joe and I way far out of our comfort zone. But hey, we've always wanted to see what Minnesota is like. Now's our big chance. Besides...I hear they have a pretty big mall up there. :) So that is the big news.

Now for some good news. First of all, Joe had lots of blood drawn and bone marrow biopsy #9 today to get the ball rolling on what's to come. Joe would like to appoint the doctor we met today his designated bone marrow biopsy person. Apparently this guy did an AMAZING job. Pretty impressive in light of Joe's recent Q and A! The other even better news is that Joe already has several good options for the cord blood transplant. So we don't need to worry about finding a match.

The not so good news is that Joe's bone marrow biopsy showed that his disease has progressed from MDS to AML M6. We're okay with this though. It isn't shocking news, and actually, it doesn't change Joe's treatment plan. If anything, the treatment plan is confirmed by this news.

As of now, Joe will be going into short stay for blood draws and possible transfusions through the weekend. Sometime very soon, as soon as this coming week, Joe will be started on chemotherapy - in Pittsburgh. Those lovely nurses T-7 will bee seeing us sooner than expected. The chemo will be an intense regimen that will hopefully bring Joe into some form of remission. I believe the regimen will be ten days. Recovery will be about a month. During this time, preparations will be made for Joe to get a transplant in Minnesota. The doctors are thinking that transplant will take place in 2-3 months.

Amazingly enough, after all he's been through, Joe seemed to have the most energy of all of us today. Not only that, but Joe made it through the day fever free! It seems he just needed to get out of the hospital for a bit. Being home has definitely been wonderful for Joe. You can bet he is taking full advantage of all the perks of home while he can.

We had a lot to absorb today, but a lot to be thankful for too. The doctor we met with in Cleveland was so kind and so helpful. We made it home before 5pm, and not long after that the doctor called and already had results for Joe. Yeah, Joe isn't being treated in Cleveland anymore, but we really felt that the doctor had Joe's best interest in mind. We are so grateful for that.

This evening, Joe and I were discussing this past year. Interestingly enough, the deeper we get into this craziness, the more apparent it is to us that God's hand is in all of this. It may not seem like it from the outside. But from where we are, it couldn't be more clear. That is pretty awesome.

~~~~~~~~~~~~
Thank you Auntie & Uncle Hwang for the card. It was so cute!
Thank you Baird family for the gift. Joe is really excited about it.
Thank you Eric W. for bringing us goodies, and for all of the photos! It was nice spending some time with you too.

BMBx, Part 2

From the desk of Dr. Joseph Lin
~~~~~~~~
Hey folks,

It’s me again! Can you believe that I’ve been in the hospital for 5 ½ weeks?! It’s also crazy that it’s been a little over a year since I was diagnosed. Time has both gone by so slow and yet so fast.

I’ve been trying to just keep busy, so I still do lots of reading and watching TV and a lot of conversation with Karen, family, and friends. Recently, I read a fun book called “Why Do Men Have Nipples”, which answers silly medical questions you’d be embarrassed to ask your doctor (thanks Vince!), Blink by Malcolm Gladwell, which was thought provoking but I’m not sure I fully buy into. And of course, I’ve been reading the Bible. I’m almost through the Book of Job. We finished watching the first season box set of 24, which was excellent.

Lately, I’ve been calling myself in Taiwanese what to you guys sounds kinda like “luong bey pie,” which translates into “unbreakable”. I’m telling you, I’m a tank, man. Knock me down and I get back up. It’s really comforting to know that I personally do not have to worry. I leave it to the doctors and ultimately lift all the burdens to God. Of course, I still get disappointed with bad news, but in a strange way, I’ve never been more calm about everything. I’m just watching God’s plan play out. Every day that I wake up in the morning and see Karen curled up in the semi-reclining hospital chair (which she claims is comfortable) and I see her in deep coma-like sleep with mouth wide open and eyes half open, I smile. Means I’m here another day.

Right now, I’m basically in a big holding pattern until my appointment in Cleveland this Friday at my alma mater. It’s quite interesting that two of the institutions where I trained and worked are the two I am now counting on to save my life. Not sure what it means… We are very excited about the prospect that an umbilical cord transplant may finally be the answer.

While I wait, my breathing has returned to almost normal and I take a lot of walks around the unit. I would not recommend getting pulmonary hemorrhage. If you’re that couple and one of you is convinced “But, honey, it really sounds like a good deal.” Politely decline. The same applies to retinal hemorrhage, which I also had. There’s still residual blurriness in my left eye but it is oh so gradually getting better. It’s mind blowing to know that I am more or less being kept alive right now by other people’s blood products, since my bone marrow doesn’t seem to be making much of anything right now. I require platelet transfusions just about every day and red blood cell transfusions about every 1 ½ weeks or so. I also get Neupogen injections about every 3 days to rev up my white blood cells. So anyway, the Cleveland appointment is of utmost importance because we are going to decide on a treatment path from there.

Now, you noticed the title of this blog is BMBx, Part 2. Since it’s been many moons since I’ve talked about this and I face the prospect of bone marrow biopsy #9 in Cleveland, I thought I’d take the opportunity to further educate you about this most useful and most primitive tool of Hematology-Oncology in question and answer format.

Q: What is a bone marrow biopsy?
A: It’s best not to know.

Q: How is it done?
A: Scientifically speaking, they jam a huge needle into your lower back side and extract a little bit of life out of you.

Q: Should I have a bone marrow biopsy?
A: The answer from the society of Hematology-Oncology doc’s is an emphatic yes. My advice: do not engage a Heme-Onc doc in casual conversation because the next response will always be “Hmm… sounds like a bone marrow (in their lingo it’s always “bone marrow” and not “bone marrow biopsy”) is in order here." So if I were you, I’d avoid the “bone marrow” like the plague.

Q: Does this procedure hurt?
A: The word “hurt” is not recognized in the medical community. The more appropriate term is excruciating pain. And in this case, yes. I would beg and plead with your doctor to give you a near overdose of morphine, which not only relieves your pain but also makes you think you are on Mars. If you’re really persistent (but in a nice yet semi-groveling way), he/she may even send you home with a doggie bag of morphine (good stuff…)

Q: Is this a sterile procedure?
A: Of course, but for some reason, the practitioner of the biopsy always dons this outfit that has a striking resemblance to Darth Vader. (Alternatively, this could be the morphine).

Q: Will I be scarred for life physically and/or mentally?
A: Yes and Yes

Q: Is it appropriate to scream or shriek prior to/during/after the procedure?
A: Feel free to do it as much as you want. But you will have to be willing to have a large stamp in your permanent medical record that says “TOTAL WUSS”… on the front of the chart next to your name.

Q: Is it true that movie directors, producers, etc are often seen in the BMT (bone marrow transplant) offices?
A: Yes, good way to get autographs. I now have Ron Howard’s and Martin Scorsese’s. They are venturing into the horror genre and want me to pass along upcoming working titles called Stick the Eye, BMBx, and Patch Adams 2.

Well, I hope that helps you out. I just took a little splash of morphine from my secret stash, so I think I’m going to take a little nap.

Joseph
~~~~~
Thank you Gretchen, Lauren, & Nancy B. for the cards. Joe cherishes each one he receives.

Thank you Vince for stopping by for a visit. It was so wonderful to see you after so long. Thank you also for being so sly and leaving behind the fun gift and super sweet and hearfelt letter.

Thank you to the PCC 5th & 6th graders for the super awesome card. It is at home right now, and will greet Joe once he gets out of the hospital. I know he'll love it.

HAPPY HAPPY BIRTHDAY to Lisa B. :)

1 year

Joe continues to amaze me each and every day. His strength is incredible...Today marks one year since we started this battle with MDS. One year. I still remember the tears, the fear, the shock. Just one day earlier we were enjoying a wonderful and "normal" life. We were so sure that Joe's blood tests would come back normal, we would heave a sigh of relief and move on with our lives. The following week we visited with the doctor, we sought a second opinion, we cried ourselves to sleep.

Now it has been a whole year. In some ways it seems impossible that it has only been a year. In other ways, it seems impossible that it has already been a year. Now we are at a new beginning. Not exactly the new beginning we were hoping for at this point. But it is still a new beginning. Joe and I know that we are stronger, more hopeful, and more optimistic than last year. Joe says his body is a tank (he was actually more specific, but I don't know anything about tanks...i do know that he upgraded himself from a hummer.) Indestructible. Yeah, he has a few dents. Yeah, he seems to keep losing his sense of direction. But those are all things that can be fixed. God is good. Really and truly. To witness how far Joe has come mentally, spiritually, & emotionally in the past year has been a truly beautiful thing. But to quote a saying my dad often says, "You ain't seen nothin' yet!"


We received some hopeful news yesterday. IF the doctors can figure out all of Joe's meds (taking some away, switching some to oral, reducing IVs...) Joe just might be discharged at the beginning of the week. We would still have to come back to Short Stay all the time...but Joe would be able to sleep in his own bed straight through the night. How wonderful would that be?


If you haven't already seen it, Jim and Jesse posted a new blog about their Marrow Trek. Those two are so amazing. Not only that, but they have officially more than doubled their goal of raising $5/mile. I also have to say that Jesse probably has the best fiancee ever. Really. She is an angel.
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