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.

---

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!

---

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.

---

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!

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

Happy Super Bowl Sunday!!!!!

Go COLTS!!!!!! I'm so happy for the team. And I'm so happy I wasn't out in that rain. :) Joe and I had a nice quiet Super Bowl Sunday, perched on our big red couch, in front of our big television. Next year, we should be back to partying!

Joe is still doing well, despite still being itchy. The steroids definitely do help. But the steroids also make Joe loopy! Before the steroids, Joe was sleeping at least 16 hours a day. The transplant, drugs, and aftermath of the chemo really made him tired. But now that Joe is taking some steroids, he is finding himself awake until four in the morning! He does sleep well once he is able to fall asleep. His schedule is just a little out of whack. Hopefully, he won't need to be on the steroids for very long. We shall see.

Tomorrow we'll be going back to see the doctor. Thursday will make Day 30 of the transplant process. Joe should be getting a bone marrow biopsy then to see where he is in terms of engrafting. Speaking of bone marrow biopsy, I gained newfound respect for Joe's strength and pain tolerance. While at the doctor's on Friday, we were apparently next door to a young gentleman getting a bone marrow biopsy. He was screaming in pain, and it just broke my heart. This week will be Joe's 5th bone marrow biopsy. I can not even imagine. Joe did admit that in his experience as a doctor, women are the strongest. (I know you women aren't surprised!) Young, big, burly men apparently turn into big babies when encountering the least bit of pain. All I know is that I'm really glad that Joe doesn't scream in agony during his biopsies, I wouldn't be able to handle it! He's tough.

Friday was a very special day! Our dear friends Van & Rune are now the proud parents of their second child - a baby boy!!!!!!!! Congratulations!

Monday is a very special day. My beautiful and sweet 3rd Auntie will be celebrating the anniversary of her birth! She has been so amazing in loving us and supporting us, even though she has yet to meet Joe.
Our dear friend Jomei is also celebrating her birthday on Monday!!!!! Yay!
Happy Birthday ladies. :)

Happy Groundhog's Day!

We had a long day at the hospital. But as Joe says, having two blissful days off made it all worth it. Joe seems to be developing some early signs of GVHD. Some of it is natural and necessary. We just need to keep a close watch on everything to make sure it doesn't get too serious. Joe's symptoms started with a rash that looked like dry skin. He also had itchiness around his eyes. This morning the rash appeared more pronounced, mostly on his upper body, and the area around his eyes was very red. The itchiness became unbearable. At the hospital, we waited an eternity. Then Joe had his blood drawn. Then we waited another eternity. We saw the doctor. Joe was prescribed some steroids for the itchiness. The doctor also requested a skin biopsy to confirm the nature of the rash. Yup, we waited another eternity for the skin biopsy to be done. It went smoothly. Hopefully it heals more quickly than Joe's last skin biopsy. The last time, it was on a pressure spot, so the area took a very long time to heal.

The good news is that Joe's WBC is now at 4300! His Hemoglobin is 11.0. Lookin' good, lookin' good! Since we were already at the hospital and Joe's magnesium was bordering on low, we went up to Short Stay so Joe could get an IV. We were at the hospital for a good 7 hours today. But provided that Joe's rash behaves, we have the weekend off. :)

Besides being frustrated by the itchiness and more drugs, Joe is in good spirits. He is quick to say this is no fun at all. But he is also quick to mention that he knows he has been blessed - from finding a donor within 6 months to doing as well as can be expected pre and post-transplant. Joe is amazing!

Discovered an article on Erica's website, and I thought it was worth sharing.
Too Young for This: Facing Cancer Under 40
New York Times, January 30, 2007

Thank you Pei-chen for the sweet gift. You are always so considerate. Hope we can see you again soon!

happy happy joy joy

What a crazy trip this has all been. And yet, at every turn we keep getting greeted by blessing after blessing. Today we received the best news yet. Joe has been discharged from Short Stay for good behavior. :) What does this mean? This means that even though we haven't yet reached Day 30, we no longer have to go to the hospital every single morning. What does that mean? It means that tomorrow, we get to SLEEP IN! Joe's WBC is up to 3300. Today he was officially taken off all of his antibiotics, which significantly decreases his pill intake. Now he just needs to take two anti-rejection meds and one anti-viral med. Also, for the first time in weeks, Joe's magnesium level was in normal range. Because of the drugs he's on, the level will probably dip again. But Joe will take tablets instead of getting an IV. The truly amazing part is that for now, Joe only needs to go to the hospital twice a week. Seven days down to two is a HUGE blessing. It was supposed to be a gradual taper, but Joe has been doing so well. Praise the Lord!

Joe's mouth sores continue to improve. Nausea is rare and doesn't last too long. Joe's appetite is getting a little better, although his taste seems a bit blunted. His mouth sores have improved greatly. The only new thing is tenderness in his fingertips. His fingertips and the meaty part of his palm are red, and they are sensitive to heat and friction. The doctor said that this is a common side effect of FK5O6 (tacrolimus/Prograf) as well as Busulfan (one of the chemotherapies Joe was on pre-transplant). In time, this too shall pass.

What can I say? God is good, and all of your prayers, love, hugs, and support are apparently working. Thank you, thank you!

Home Sweet Home.

We are HOME! Joe has been enjoying his tv, his couch, his bed, and his shower. There is no doubt that we were extremely well taken care of at Hotel Mom & Dad. Joe's parents were absolute angels and helped us more than we could ever hope or ask. But it sure does feel good to be back home. My family and Joe's parents all stopped by in the afternoon to make sure we were okay, and to make sure that our refrigerator was stocked to maximum capacity. We are very loved.

Our visit to the hospital this morning provided us with very good news, again! Joe's WBC is now 2700. Jumping, jumping, jumping. His platelets rose to 72, and his RBC went up to 10.6. We are quite pleased with those numbers. Twelve more days until Day 30 and the big bone marrow biopsy.

Joe and I wanted to share some photos from these past few weeks. Rest assured that every single one, good and bad (okay, not so bad!), has been pre-approved by Joe. It is really amazing how big his smile is in so many of the photos. He's a beautiful person with beautiful character. You can view the photos by clicking on the following link...

Joe's Transplant Process.










As for the photos of the cute little guy I've posted... Well, that's my little brother Victor. And on the 29th, he is turning TWENTY-ONE!!!!!! Yup, he's all grown up now. He also happens to be an extremely bright goody-two-shoes. So it is highly unlikely that he will be taking advantage of any of the things that are now legal for him. Maybe because in every card that he has ever received from us, Joe has written, "Just Say NO." :)

HAPPY BIRTHDAY VICTOR!!!!!!

Wonderful news!

Going to the hospital every day has become our daily job. But it's a lot worse, because it's not fun or fulfilling. But the good news is that Joe is getting better and better each day thanks to the wonderful doctors and nurses caring for him.

We made it to the hospital today in good time, only to be greeted by a full waiting room that kept getting more and more packed. We've never seen it so busy. Our wait in the waiting room was almost a full hour. Fortunately, somebody was great enough to order Joe's meds in advance, so they were ready when we got to his room. Joe is now getting half the fluids he was previously, he is still on vanco for a few days (which has brought down his temperature, and taken away the tenderness around his port), and of course magnesium. Unfortunately, one of Joe's anti-rejection meds depletes magnesium, so even after he stops getting it IV, Joe will have to start taking it in tablet form.

Now for the wonderful news. The doctor rounding today came into the room and said, "wonderful news!" Joe's WBC (which jumped up to 376 yesterday) is 900 today! This is the real deal. His WBC should just keep jumping up now. Platelets and RBC take a little more time, but we can be patient with those. Joe hasn't seen our house in over 3 weeks now, and he is itching to go back. He's decided that Sunday will probably be the day we head out of Hotel Mom & Dad. Of course, it has been noted that we are welcome back to the "hotel" anytime. We've been really blessed to have the extra help.

Thank you Marcus for visiting Joe while you've been rotating through the hospital. You really helped the days go by faster.

Thank you Albert for the great care package! We know you are super busy, so it means a lot that you took the time and thought that went into it.

Movin' on up!

Today marks two weeks since Joe's transplant. He has been feeling fatigued, but things are slowly getting better and better. Today was a good day for counts. Joe's platelets are now 66. His WBC jumped up from the 60s to 166. And his hemoglobin is 10.2. The doctor said that his platelets should continue to rise, his WBC should start jumping up, and it is pretty definite Joe will be able to avoid getting any blood transfusions! Yippeeeeee!!!!! It is amazing how well Joe has been doing through the whole transplant process. God continues to bless us beyond measure.

Joe's temperature started to creep up last night. It went up to 99.9. This morning it was 99.6. Also, the area around Joe's port has been a bit tender. There has been no swelling or pus. Just to be on the safe side and to avoid any surprise admissions due to fever, which is a sign of infection, which means several days and nights in the hospital - Joe was given Vancomycin today. If you recall, this is the stuff that causes red man syndrome. Joe didn't have as strong of a reaction today as he did back in August. But this time, with no hair he did look a bit like the red version of a Blue Man from the Blue Man Group. All is well now. Joe is just more tired than ever because he got some Benadryl to help with the itching from the Vanco.

Once I get back to my normal computer, I'll start sharing photos from these past couple weeks. :) As always thanks for all of the love.

New Man

My husband is a new man! Yesterday, he went from looking like this, to looking like this, to looking like this. Just as Gretchen says, "bald is beautiful." Joe looks as handsome as ever. My mother said, "so now you have a sexy, bald, husband?" Joe's mom likes to joke that I'm caring for a baby...with a 21 year old mom. Joe says he now knows what it is like to be an old old man. He has no hair. He shuffles from the bed, to the restroom, to the hospital, and back again. Reading is his main source of entertainment. His diet consists of Ensure, popsicles, Jell-o, and millions of pills. Although, Joe's mouth sores started getting better today. Yay! Joe's platelets continue to rise little by little. His WBC look like they are creeping up as well. So things are going as well as they could be. Tomorrow will make 2 weeks since the transplant.

I must share the story of Joe's hair. He started off the day with a full head of hair. During his visit to the hospital, Joe was really fascinated by how easy it was to pull out his hair. Joe jumps in the shower after every hospital visit. Yesterday afternoon when he started washing his hair, it all started falling out. When Joe stepped out he had big bald patches on the front of his head.

In the evening, Joe's dad had requested that I make some chili. Joe LOVES chili, but unfortunately he couldn't eat any with his mouth sores. So while I had chili with my in-loves, Joe found a way to entertain himself. He went to the bathroom and started yanking out all of his hair. He figured this was better than leaving trails of hair everywhere and waiting for it to all fall out on its own. After dinner, I went to help. It was actually really funny in a weird kind of way. So by the end of the evening, Joe was officially bald!

That is about it. We are really encouraged by his progress, and just keep praying that all continues to go smoothly. Praise the Lord!

Uh-oh...:)

It may be starting. Joe just might be losing his hair. Maybe. Yesterday, before and after his post-hospital-visit shower, I noticed all of these loose hairs on Joe. We then discovered that of all places, Joe was starting to lose hair from his armpits! It was just sliding right out. Joe then decided to test the hair on his head. That stuff is much more stubborn, and yet Joe was still able to pull out tiny little tufts of hair. We buzzed Joe's hair yesterday afternoon since it was getting really shaggy. Joe is really fascinated by the prospect of becoming completely bald. He seems to be encouraging it by randomly yanking at the little hairs on his head. Still, it looks pretty thick up there. Today, there were fewer loose hairs. We thought maybe he would wake up to a pillow covered with hair, but that hasn't happened yet. There was just one lonely hair, possibly two! We shall wait and see.

Joe's nausea and belly pain has pretty much vanished. To replace those ailments, Joe now has a very stubborn headache that appears throughout the day. Also, he is starting to develop sores in his mouth that are irritating. The one positive thing that has resulted from the mouth sores is that Joe has an excuse to eat popsicles. His nurse suggested it this afternoon, and Joe was very excited about it! Another praise worthy thing is that even though Joe's last platelet transfusion was a bit of a nightmare, his counts went up! Yesterday it was 40, today it was 45. Joe's hemoglobin level is steadil decreasing, and we're anticipating a blood transfusion within the next week.

Some happy news about one of the girls we've been praying for. Amy is more than sixty days out from her transplant, and her thirty day bone marrow biopsy showed that she is 100% engrafted. Woohoo, and Praise the Lord! Also, pray for Alivia and her family as she will be undergoing a splenectomy in a few days, and a transplant a few weeks after that.

A very Happy Birthday to John of John & Carole, TK, and Kelly from small group who celebrated birthdays recently. And a very Happy Birthday to SuAnn who should be celebrating today!

Thank you so much Janet & Frank, and Aunt Vivian, Zim, & Yim for your generous gifts. You are all so very thoughtful and sweet.

Thank you to all the wonderful people who have been flooding our mailbox with cards! We really appreciate your support.

And a super giant THANK YOU to Greg who is absolutely the best neighbor in the world. If there is such thing as a best neighbor award, he should get it. Greg, you have been so incredibly helpful, we appreciate it more than you'll ever know.

Long day.

Sometimes it seems that Joe's body wants to create a little excitement just to make things more interesting. On Tuesday, Joe's platelet count was 10. He had a platelet transfusion. Yesterday, his platelet count went all the way up to 11! Today it was 9. Joe had another platelet transfusion. His body, after pondering a bit decided that things have been a bit boring. So Joe's body decided to break out into a rash after receiving the transfusion. It started out as a bit of itchiness in the neck area. Then some little bumps near the belly. Soon enough, Joe's whole front and back was bright red. Joe was in agony with the itchiness and burning. Then came some tightness in his chest, and nausea. Fortunately, some benadryl, solumedrol, and ativan fixed Joe up in no time...it also knocked him out. Joe thought he was asleep for about 30 minutes, but it was actually a few hours. There is absolutely no sign of the rash anymore, which is great. Joe got an EKG just in case. It was normal. A whole bunch of cute nurses were popping into the room to make sure that Joe was okay. He was being given the royal treatment. All is well now. Hopefully, Joe's body decides to behave better now. We were only at the hospital for eight and a half hours today.

His WBC is still low, low, low - just 51. Yet, Joe continues to avoid getting any fevers. Praise the Lord! He eats a bit here and there. Just enough to keep him going. And in case you're curious, Joe still has a full head of hair. It is stuck to his head like superglue. We're taking bets as to whether he'll end up losing it or not. Okay, maybe not. I don't want to be accused of encouraging gambling.

Just a friendly reminder, although we are thankful for the gesture, Joe is not able to receive fresh flowers and plants right now. Just knowing that people are loving and praying for Joe is the best gift ever.

Also, a certain day of a certain week, of this month is special. And although I like to acknowledge such things when I'm aware, this time I've been given strict orders not to say anything. So for those readers who know what I'm talking about - I'm not being bad and forgetful. I'm just obeying orders. And for those who haven't the faintest idea what I'm babbling about...that is good, because you're not supposed to. :)

Sixty-six!

The normal range for WBC (white blood cells) is 4500-11000 cells/MCL. According to Joe's blood draw this morning, he has 66 cells/MCL. They have to be counted manually. It just amazes me how low they are. This week Joe's WBC are expected to be at their lowest. Sixty-six is pretty much lowest. In a few days they should start inching their way up to a more acceptable range. For now, Joe wears a mask while outside of the house. And we've all become pretty obsessive about washing our hands and being clean. Joe even gets his own personal blood pressure cuff and thermometer at the hospital. Pretty special, eh?

Remarkably, Joe is currently feeling better than he has been in awhile. Yesterday and this morning he had a throbbing headache. Today it was discovered that one of his drug (FK5O6/Prograf) dosages may need to be tweaked. Patients on Prograf are tested twice a week. Joe was tested yesterday, and the results today show that his levels are too high. This is a possible reason for his headaches. So hopefully, the headaches will be better once the dosage is changed.

Joe did have a platelet transfusion today, and more magnesium. His appetite is increasing little by little, and Joe can tolerate more than just rice and broth now. When we left the hospital, Joe said that his headache was gone. Everything else felt good too. Hooray for every victory!

Thank you to Akiko and Joe for the balloons! They are so fun and cheery.

Happy Martin Luther King Jr. Day

We went back to the hospital this morning. Joe received some magnesium in addition to his usual bag of saline. His platelets are down to 14, so it is almost definite that Joe will be getting a platelet transfusion tomorrow. Joe is extremely neutropenic now. The doctor who has been rounding keeps stressing that this is a critical period. During this point of the transplant process, most patients end up being admitted to the hospital with fever/infection. It is almost like a rite of passage. But you still never know. A lucky few manage to sneak past this little detour. Let's hope and pray Joe is one of the lucky few!

The good news is that Joe has been eating a bit more since yesterday. Not only that, but most of the food he has been eating has been staying in his body for a normal-ish amount of time. Joe had been experiencing some diffuse pain in his belly for several days, and that is finally going away. Each day we see a bit of progress. The nurses and doctors like to remind us not to be disappointed or discouraged if there are setbacks along the way, or if Joe feels blah for awhile. Still, it makes the days easier to stay positive and celebrate the tiny victories. If we encounter setbacks we'll deal with them. Before that, it doesn't make sense to worry, does it?

All of our days are running together...

For most of the morning I kept thinking it was Tuesday, only to realize it is only Sunday. Each day is so similar, it is becoming difficult to keep track!

Just like the sun peeping through the clouds, Joe's silliness will reveal itself throughout the gloom of each day. He will say something completely ridiculous or cute that will make me laugh and reassure me that everything is going to be okay. To be perfectly honest though, the past few days have been pretty miserable for Joe. After he was discharged, he had little appetite (with the exception of Friday evening when he would sneak bits of food with a gleam in his eye.) Unfortunately, virtually everything that entered Joe would quickly exit in a most unpleasant manner. These past two nights have been rough as he has been waking up several times to dash to the restroom. Joe almost constantly feels nauseated. The drugs help, but they aren't perfect. It has been rough. It is so difficult to see Joe go through this, and I can only imagine how awful it is to live through it.

According to the doctors and the nurses though, Joe is just an average Joe. Everything he is going through is perfectly normal and expected for a post-transplant patient. It would be much more remarkable and interesting if Joe were to not experience any nausea or loss of appetite. So he pretty much just needs to bear with the blahs for a little while longer, then things should start to get better. Besides that, the doctors and nurses feel that Joe looks great considering he is five days out from a PBSC transplant. I must agree. (Not that I'm biased or anything.)

Thus far, Joe has managed to avoid any transfusions. This shouldn't last long, but we're happy to avoid them for as long as possible. Each morning we go to the hospital, Joe has his blood drawn and is given IV fluids. Yesterday, Joe didn't eat anything which was more or less suggested by the doctor. Today, he is feeling every so slightly better, and so Joe started to eat again. So far his lunch (congee/jook/rice porridge/mue/okayu/lugao/pick your favorite name...) has not made a reappearance in any form, and it's been a couple hours. This is a very good thing.

Now, Joe is happily perched on the couch, in front of the television, watching football.

___
Just to go back to transplant day briefly (or not so briefly!). As I mentioned before, everything went very smoothly. The donor had her cells harvested on Monday. Joe's transplant was on Tuesday. It is really interesting, because many years ago, Joe did a summer internship in a Lab at Allegheny General Hospital. There he met a gentleman named Don. After Joe started his residency at West Penn, he had the opportunity to go back to AGH several times for rotations or conferences.

One time, Joe decided to go back to the lab where he worked and see if he still knew anyone there. Don was still there!!!! Now here is the fascinating part. This year, Don started working at West Penn in a lab where they do all things bone marrow related. Turns out, he had seen Joe's name several times but never made the connection. That is until Joe returned for his transplant. Someone referred to Joe as Dr. Lin. Then it all clicked. Don went up to visit Joe before the transplant. Then on Day 0, Don personally delivered the cells to the room, and wrote Happy Birthday on the dry erase board. Don apparently knows a bit more about Joe's donor. But being the good worker that he is, and wanting to keep his current job, he hasn't revealed anything to us. Oh well.

For transplants, doctors aim to get 4-6million cells/kilo. (I hope I'm writing this correctly!) Joe's donor provided 10 million cells/kilo. The doctor gave the go ahead to give them all to Joe. So now we hope and pray that the donor cells thrive and set up camp in Joe, and the bad cells get booted. This is all creating a temporary mess in the Land of Joseph, but temporary is the key word. None of us can wait (Joe most of all) until he engrafts (that is, when the stem cells begin to grow and make cells) and then starts to feel better.

For now, it is all about taking it easy, and taking everything one step at a time. Fortunately, we have tons of help. We are now living in Hotel Mom & Dad. It has been great since we are all together. My parents have been visiting as well to provide added support.

As usual, we are feeling the love from everywhere. I can not stress how encouraging it is for Joe to know that so many people are keeping up with his status. I know that he is lovable and one can't help but want him to hurry up and get better. Joe doesn't always realize this though. So thank you everyone for making this just a little more clear for him!

___
A very Happy Birthday (a little early) to my dear pseudo-cousin Van. Have a wonderful time celebrating. Hope you find some time to relax and get pampered!

Freedom!

Just wanted to let everyone know that Joe is out of the hospital!!!!! We still have to go back every single day for a month. But Joe is so happy to be out of the room he called his jail cell. According to his doctor, Joe's only on parole...but Joe will take what he can get!

Joe still doesn't feel like himself. I guess in many ways he is a new person now. Mostly he has no appetite (although he did try to tell me he wanted french fries...). This morning it was even tough for him to keep down liquids. According to the doctors an Ativan 30 minutes before meals might help Joe get some food down...although it will make dinner conversation virtually impossible. Also, each morning for as long as necessary Joe will get some IV fluids while in short stay. This way, we know he's not dehydrated.

Joe received even more cards today. He now has a stash of more than 90 cards, courtesy of West Penn and all of the amazing people who sent them. Thank you so very much for all of your love and support!

Happy belated Birthday to Joe!

Just a quick little update. I'll write more later...

Joe had his transplant yesterday. It was really incredbile. They hooked him up to a bunch of monitors. Out came a little bag with 251 mL of cells. The bag was hung. Fourteen...FOURTEEN MINUTES later, Joe had new cells floating around his body knowing exactly where to go. Joe was closely monitored for an hour after the fourteen minute transplant. All was well. He then had to continue to receive IV fluids for an additional 3 hours. After all was said and done, it was getting late. Joe could have been discharged, but since we have to be at the hospital every morning at 8am for thirty days anyway, he decided to stay another night.

Well, this morning, Joe's stomach was bothering him a bit more than usual. He was sent to get a CT scan. Apparently, he has some inflammation in his colon. Things like this are to be expected as his counts continue to go down. They were still going to let him go home. But then after the bigwigs discussed some more, they decided that they would like Joe to stay a little longer just to be safe. So, my dear Joe is still in the hospital. He's not too thrilled about being here yet another day. Who would be? But Joe is staying strong.

One more note, Joe received over 70 cards as of the time of his transplant yesterday. It came in two waves. Each delivery, the lady would go, "I can't believe it!" So much love for Joe!!!!

Thank you to Susan N. for telling everybody about the West Penn card site!
Thanks to Sheena for hanging out with me the other night.

Day -1

Wow, wow, wow! All of you did an amazing job making Joe's day today. The hospital delivered 28 cards to his room today! This makes a total of 30 cards that he has received from the WPAH site, not to mention the ones he's received by snail mail. The lady who delivered the cards said that if he received a dozen more, he may break a record! Joe was so thrilled to read all of the sweet and thoughtful messages. He received cards from three different countries. After every few cards, Joe would look down and exclaim, "Wow! There are still so many cards left!" Thank you so much for the outpouring of love. The smiles on Joe's face were priceless. If you haven't already, you can still join in the fun! Just click here. Follow the directions and choose "West Penn Hospital." The best part is that it is free. :)

Last night Joe finished all of his chemotherapy. He was SO happy! Joe took it like a man, and that part is finally over.

Joe started his second dose of Thymoglobulin today. The wonderful part is that so far he is tolerating it extremely well. He has had no major side effects from it. Let's pray this continues to hold true! Apparently two other patients on the floor are receiving Thymoglobulin, and unfortunately they are not tolerating it so well. We don't know who they are, but we can surely say a prayer for them as well. It isn't easy for them, and it surely isn't easy for their families either.

Today, Joe also started taking two different anti-rejection drugs in pill form: FK5O6 and Cellcept. He will have to continue taking them for a year. Among other things he is also taking acylclovir, which he'll be on for at least 180 days. Also, avelox and diflucan which Joe will take until his neutrophil count rises again.

Tomorrow is the day! Day 0 (Zero) - Joe's new birthday. There will be no fireworks or fanfare. Just a bag of stem cells that he'll receive the same way he has received blood transfusions. That means today is Joe's last day being 100% Joe, 100% of the xy species, and 100%O+ blood type (His donor has A-type blood). This also means we need to be praying for his donor right now!!!!! This is her crazy day. After getting filgrastim injections for several days, she likely started the harvesting process this morning. The place where she is having her stem cells harvested is having her do a double donation. So she was hooked up for four or five hours this morning. She had, or will have a short break. Then this afternoon she'll be hooked up for another four or five hours. We are so incredibly thankful to this stranger for giving so much of herself so that Joe has a chance to be cured. How amazing is it that a girl of only 21 has been chosen to do something so noble, and has accepted the challenge. I imagine she has gone through so many emotions herself. She doesn't even know Joe! She is a very brave young lady. Hopefully one day, we will have the opportunity to meet her and thank her in person.

Shortly after Joe's transplant, either Tuesday or Wednesday and assuming all goes well, Joe will be able to go home. However, he'll have to return to the hospital every day for at least thirty days. Each day he'll have his blood drawn to see if he'll need any transfusions and to monitor his progress. We'll probably stay with his family initially so that we can all be together.

That's it for today's update. Thank you again so very, very much for all of the love you have sent Joe's way. It has really lifted his spirits to know that so many people are rooting for him.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
~Isaiah 43:2

Day -2

Joe is currently bonding with Jay over football! Joe is still in good spirits, although he has decided that being drugged up is not at all fun. Tonight will be his last night of the fludarabine and busulfan. This morning, Joe was started on the first of three rounds of Thymoglobulin, an immunosuppressant that seems to be quite unpleasant. There seems to be a whole host of other drugs Joe has to take along with the Thymoglobulin to ward off its potential evilness! The same goes with the chemotherapies. Poor boy. I'm sure he is taking more than 10 different drugs a day now.

Joe has pretty much lost all desire to eat. His meals now consist of a can of creamy milk chocolate Ensure Plus, and little else. He keeps saying that all of this is still better than his first hospital admission when he had the awful rash and constant fever.

Joe's preparing himself for what's to come, but hoping it won't be too bad. The nurses have warned him that post-transplant is when things get rough. That is when he'll start losing his hair. That is when he might develop rashes or infections. That is when the mouth sores may come back. Of course everyone is different. Everybody gets hit with some unpleasantries, but there is a spectrum. Joe is being a real trooper, he's still smiling and he's still being his sweet self. I'm sure that he'll be able to handle whatever comes his way. In his own words, "This ain't no thang." But I'm still going to pray like crazy that all goes smoother than possible. It warms my heart to see him being so strong, but it breaks my heart to see him go from bouncing around to being bedridden in a matter of days. I love that boy.

Thank you to everyone for your continued prayers and support.
Thank you to Jay for visiting and entertaining us with your stories, and for the collection of books!
Thank you to Julie and Gordon for stopping by and bringing chocolates!
Thank you to first-day-on-call-Paulette for stopping by to bring Joe every flavor of gum on the planet!

Day -3

Joe received the sweetest gift yesterday, and here he is posing with it! It is a baby blanket from Evonne, Thomas and Leah. Four years ago, Leah was born premature and had to stay in the NICU for 97 days. When the family was able to finally leave the hospital, this is one of the blankets they received. It has been a symbol of comfort and love for them as they also had an amazing network of people supporting them and praying for them. Now they've passed this blanket onto Joe. Beautiful, don't you think?

Joe was feeling much more nauseated last night. He finally accepted some Ativan, and was able to get his first good night of sleep since being admitted. This morning he was in much better spirits, although he still has a headache. Joe's definitely looking forward to watching some football today and tomorrow though! Also, his hem-onc friend Jay will be stopping by for a visit.

Still Smiling!

All is still well on the 7th floor. Joe is still smiling. He is experiencing headaches due to the lumbar puncture, but they go away when he is lying down. At times he experiences some nausea. Last night, he discovered that he doesn't have too much tolerance for meat anymore. Then this morning he discovered that bacon is still okay! In Joe's words, "if this is the worst of it, I'm good to go!" So we're praying that all continues to go smoothly. Three more rounds of chemo. Joe is excited for the weekend because he'll have football to distract him!

I'm not sure if I've mentioned this already, but in case I haven't Joe is not allowed to receive any plants or flowers while he is in the hospital. This rule will likely apply for awhile after he is discharged as well. Save your money and send him virtual hugs instead!!!!!!

Thank you so much to Auntie and Uncle Liang for the encouraging books. You are so sweet.

Thank you so much to Thomas, Evonne, and Leah for such a touching and meaningful gift, and sharing a bit of you with us.

Happy belated birthday to Simon!

Little Update

Just a little update. :) First of all, thank you for all the support we've received from all over! The phone calls, emails, comments, prayers...they mean so very much.

Joe was admitted to the hospital yesterday morning. He had a super busy day being a human pin cushion. His blood was drawn, he had an IV put in temporarily, he had a central line put in, he had lumbar puncture, and a bone marrow biopsy. He says the bone marrow biopsy was the most painful. The l.p. was surprisingly not bad at all. Today however, he cannot feel the biopsy and his back is extremely sore from the l.p.

Last night at 6pm, Joe started his first bit of chemo. He was given fludarabine over an hour. Tonight he gets some more of the fludarabine and another drug will be added. I believe it is Busulfan. That will be over 3 hours. So he'll be getting chemo for a total of four hours. Joe is also getting all kinds of pills. And, he is getting IV Fluids around the clock to make sure that his kidneys flush properly.

As of this morning, Joe is still smiling. He is definitely feeling a bit drained, but he still has his appetite. To prove his "Joe-ness" and that all is going well so far, Joe has named his IV pole Khemo Van Oelhoffen aka "Bling Bling!"

I'll continue to update when I can. Thanks again for all of your love!!!!!!!

p.s. You can send joe a card for free by going here. (West Penn Hospital). They will print it and deliver it to him. Pretty cool!


Here is Joe posing next to his new buddy, Khemo Von Oelhoffen. They have become inseparable. I'm a little jealous. :)


















And here is the lovely view from Joe's jail cell...er, uhm...hospital room.

Shorty after Joe was diagnosed, he received these photos. They have meant so much to us, so I had to post them. How to express the gratitude for all the love that surrounds Joe?

If you haven't already, please read the two entries Joe posted below. They are beautifully written, and will give you just a glimpse of how amazing of a person Joe is. Tomorrow is the day. Thank you for your love.

To My Donor

Dear Donor,

Boy, how do I go about thanking someone who is about to save your life?! Whoever you are out there, I want to commend you for making it this far. I'm pretty scared of this whole process and I'm pretty sure you are too. Your efforts are nothing short of heroic. I know that when I was your age, doing something like this would have been the furthest thing on my mind. You are literally giving a piece of yourself to me. We virtually share the exact same DNA. Weird, huh? Pretty soon, we are forever going to be linked in more ways than that. I hope to meet you face to face in a year, but even if that doesn't happen, I just want to thank you. You won't get to read this message for quite a while, but right now, there are a lot of people praying for you too. So Godspeed, and don't fret, it's all been worked out!

Joe

Hee Haw!

Remember Sam Wainwright, who was George Bailey's friend in It's a Wonderful Life? Well, Karen and I just watched that movie recently...

Anyway, Happy New Year everyone! We hope you all had a wonderful Holidays. Well folks, in a day and a half, I will be moseying on down to the hospital for a little tune-up, an oil change of sorts. I go into it feeling moderately terrified but cautiously optimistic. Actually, a lot more than cautiously, but quite optimistic. I've got quite an awesome team behind me. I feel like that Verizon cell phone guy who's got that huge network in the background complete with helicoptors and cranes and not the guy with the phoney "network" comprised mostly of paper cutouts. (My cell phone is Sprint by the way).

You've all probably made some New Year's resolutions, but if you haven't done so, I urge you please to consider becoming a bone marrow donor. The chances are infinitessimally small that you will ever need to donate, but that opportunity to save a life is incomparable. Believe me, before all this happened, I would have been the first to stand in the "No Way" section because I was afraid of the pain and/or torture. This is nothing compared to what the patients have to go through. There's no doubt that my donor came about because of someone else's efforts. I saw somewhere that in the US (or maybe anywhere), there has only been one patient in need of a transplant who has ever found a donor through his own efforts.

These last few months have been great and I wanted to thank everyone who have called us, sent us e-mail, letters and cards, given us gifts, prayed for us, hugged us, gone out to dinner with us, visited us, hung out with us, and basically all out supported us. We've had a wonderful time and learned so much along the way. I've spent a great majority of time over the last six months reading voraciously. I recently decided to write down most of the books I can remember reading and came up with about sixty books. There is fiction and nonfiction and everything under the sun in there, so if anyone needs any good book recommendations, just ask!

More than anything, what I've learned these last few months is that life is good. If, in my 32 plus years here, I can dole out any advice, it is to be kind. We all share the same earth, and in the grand scheme of things, most of us have it so good. So go out and hug your loved ones a little tighter and be kind, be generous. Also, if you can think of it, be especially kind to my family, my in-laws' family, and most especially my dear wife, Karen. I can't imagine going through this without them. I can only imagine that the only thing harder than being sick is to see someone you love have to be sick.

Thank you, thank you, thank you for being my Verizon network (even though I use Sprint!) I'll be okay. This ain't no thang! I'll be looking to party with you in a few months.

Joe