Hemorrhagic cystitis?!

Hey everybody!

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

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

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

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

Joe

Home!

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

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

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

Thank you, thank you, thank you!

Oh dear...

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

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

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

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

Back in the hospital

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

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

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

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

Random

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

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

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

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

Tuskegee's ghosts: Fear hinders black marrow donation

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

98%!

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

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

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!