We could really use some prayer right about now...

This past week, we really felt like we had rounded a corner in our journey. Joe was feeling better, the rash was fading to nothingness, the sun was shining. All we needed was for Joe's counts to start moving in the proper direction. Well, today we learned that if we did round a corner - it is a detour, and we've hit a major pothole. Fortunately, we are from the 'Burgh. And if there is anything that people from the 'Burgh can handle, it is detours and potholes (and a weird new mascot...). Nothing can stop us from reaching our intended destination.

Joe started off the day with a blood draw and a dose of Pentamidine. The results from the blood draw showed that his WBC is still low and his platelets are creeping down. His hemoglobin is still holding steady. Later in the morning we had an appointment with the doctor. We were just doing our thing, grumbling about the long wait, talkin' about the weather, remarking on Joe's peach fuzz five o'clock shadow, and doing some reading. Then we received some results from the bone marrow biopsy Joe had on Tuesday. It showed that 30% of Joe's cells display chromosome abnormalities - those abnormalities that put us in this predicament in the first place. The FISH for donor cells has not come back yet. But if we assume that the cells with abnormalities are Joe's, and the cells without are any combination of Joe and the donor, then Joe's marrow is now no more than 70% donor. This was not the news that we wanted to hear today. It just seems impossible that such a drastic change could occur in two weeks. The doctor is concerned, as one should be in this situation, but NOT worried. Remember, Pittsburghers know how to navigate detours and potholes. Joe was started on another round of Vidaza today. It worked really well the first time his graft dropped, so there are high hopes that it will do the trick again this time. To further discourage Joe's cells from getting out of control and to encourage the donor cells to fight harder since they are still in the majority, Joe's steroids have been tapered even more, and he has been completely taken off of one of his immunosuppresants. Please pray that the donor cells take over once and for all, and that Joe's GVHD doesn't flare uncontrollably.

Amazingly enough, even after receiving this news Joe and I seem to be handling it very well (if I do say so myself). We're a little more quiet today, but far from mopey and not quite discouraged. I can't speak for Joe (although from our conversations and our day, I can say that I continue to be amazed by his strength), but as for me I feel this strange peace about everything. My mind and my heart seem unable to waver from being completely positive that everything will be fine and that God will provide Joe with complete healing. Some might say that I'm in denial, or it hasn't hit me yet, or I'm being a bit naive. I don't think so. I can't think so. This whole MDS thing has been horrible. Yet, so many positive and wonderful things have blossomed from the muck and mire that is MDS. Joe and I have grown in so many ways. Joe in particular has developed unbelievable strength and grace in dealing with the ups and downs of his treatment. Then there is the support from family and friends, the stories of people inspired by Joe's story, and the people who have stepped up and registered to be donors, or donated cord blood. I think that there are a lot more wonderful things in store for us...not the least of which is complete healing for Joe. Currently, I refuse to believe anything else.

Here's my theme song for the day.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way
He will make a way

By a roadway in the wilderness
He'll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His word will still remain
He will do something new today.

Thoughts...

Recently, I've been reading the blogs of others who are battling leukemia. Links to those blogs are in the sidebar. As Joe and I have read through various entries and prayed for others who have been shocked by unexpected news we've had various discussions and have just been amazed. It is all at once sad and beautiful, thought-provoking and eye-opening. I want to feel sorry for these people that I may or may not know...my heart aches as I read words that have come from my own mouth, or that I've heard from Joe. But then...always as weaknesses are revealed, strength is seen shortly after. That is a beautiful thing. Also beautiful is the faith I see that everything is under control. The willingness to accept this life that has been dealt and live it the fullest! And finally, seeing friends and family band together to help the people they love is beautiful.
It has all been very thought-provoking for us though, and very eye-opening. I mean, it is incredible when you realize how many people out there are affected by leukemia or MDS or cancer. And it is positively mind-numbing when you stop to realize how many people are affected by other things that are just as scary. It's just interesting how Joe's diagnosis has caused me to notice things I might have ignored in the past. I don't know. There is so much running through my mind right now, but no way that I can put any of it down in a remotely eloquent manner! It's late, and the drive is in the morning! Maybe tomorrow I can unjumble my thoughts more.

Thank you David for stopping by before studying for your boards! It was so great to see you. Thank you to Cammy for flying down from New York for the drive! And thank you to Louis for picking Cammy up from the airport. It was fun sitting around with the two of you and eating pizza, spaghetti and jello! Thanks for the puzzle too Louis!!!! It was so sweet of you to get it for us...especially since I'm always stealing yours when we visit! Thanks to Ray too for stopping by and bringing the gifts from Hawaii. I'm so impressed that you picked them out yourself. You have great style!

I hope to see a big turn out for the drive tomorrow!!!!!! Big hugs to everyone.

The beginning.

I am sitting in front of my computer knowing that I need to put down my thoughts, but I'm unsure of where to start. This must be something many bloggers go through, right? Well, the main purpose of this blog is to keep those we love updated on my dear Joseph. Keep in mind, when I post it will be the "Laywife's version" of what's going on. We have received a lot of scary news lately, but the one thing that has kept us positive is knowing that we are SO VERY blessed with THE BEST network of friends and family ever. We truly feel God's love through each one of our friends and family members. So together we will be strong and we will fight and we will overcome.

From the beginning. Joe has had the kind of crazy life that radiology residents have (yeah yeah, we hear you residents in other fields snickering.) For a six week period beginning the end of February and ending in April Joe attended AFIP in Maryland. On April 2, we celebrated our one year anniversary! At the end of April we went on a cruise and attended a wedding on the Cayman Islands. In May, Joe spent a month at CHOP in Philadelphia. When he returned we attended another wedding in town then went off to San Diego for a Nuclear Medicine Conference.

It was no surprise that Joe felt tired. Doctors seem to get used to being tired, and plus he was traveling so much. In San Diego, Joe developed a gum infection. It was unusual and uncomfortable, but still didn't clue us in to what was to come. This led to his appetite decreasing, and Joe ended up losing about 10 pounds. One evening Joe's mom remarked that he was looking pale. Again, it seemed to be possibly related to being tired from traveling. But then, Joe started to feel his heart beating faster when he was just sitting still...and he had a bit of a fever one night. So just to be safe, he decided to get his blood drawn on Friday, June 23. He was supposed to come home and say that his results showed he was a hypochondriac. Or maybe even a thyroid problem. Instead, Friday morning, Joe discovered that all of his cell lines were low. He was immediately sent to get a bone marrow biopsy. Meanwhile, I was on a school bus with a client traveling far from my car. Joe managed to reach me before his biopsy, and we were both a ball of nerves.

I rushed home right after work and Joe updated me on his crazy day. We had both been helping out with Vacation Bible School (VBS) at our church but I called Vince and he kindly took over my station. Then it was a waiting game. By Friday evening we got the results...Joe had Acute Myeloid Leukemia. We went through every emotion. Our quote for the evening was, "Dear Leukemia, We're gonna beat ya sucka!" Our families got together that evening. It was nice to feel the love and support.

Saturday morning, Joe went to the hospital for a blood transfusion. We went to talk to Dr. T. beforehand. She was such a comfort. We also ran into Myra, Steve, and Shalin. We were now armed with some much needed hugs! The transfusion was a long process, but all seemed to go well. David so kindly brought over some barley, potatoes, and chicken. Yum! Joe's parents also had a bag of goodies, and went out to bring us more. Saturday evening we hoped to see some friends. But Joe developed a slight fever, so we decided to keep him home. Joe's parents ended up spending the night. They even stocked our fridge, cleaned our basement and did yoga with us. Today's quote was "Dear Leukemia. GO AWAY!" Our song was, "God is bigger than Leukemia. He's bigger than Godzilla or the monsters on T.V..." (adapted from the VeggieTales. :) )

Sunday morning, I gave everyone a slight scare. Joe's mom made this really yummy homemade soybean milk...but unfortunately, I developed an allergy to it. I got a rash around my mouth, started sweating, got shortness of breath, and then...my breakfast ended up in the toilet. Fortunately, I was fine after that. :) That evening, Joe's parents decided to come spend the night again. They taught us how to play Mahjong. It was a lot of fun and helped us all to relax. I ended up being the ultimate loser, and Joe caught everyone by surprise at the end and became the winner of the evening!!!!! This evening's song was "My God is so great, so strong and so mighty there's nothing my God can not do...for Joe." Which is funny, because Nancy and Evan sang this very song to us Monday evening!

Monday morning, we met with Joe's doctor at West Penn. He was very confident that Joe had Acute Myeloid Leukemia of the M6 variety. Very scary news to take in. There were still some more results coming in though. So we hung out at the hospital waiting for those results, gathering everything we could for a second opinion in Boston, and talking to people like Lilly and Dr. B to get them up to date and see what we needed to do. We also got to see Connie in the cafe which was a lovely surprise! By the end of the day, there was a little bit of discussion about whether Joe had a high-risk Myelodysplastic Syndrome or AML. But the final diagnosis remained as AML. Before leaving the hospital, Joe had a platelet transfusion to prepare him for the trip to Boston. We talked to Greg who is the best neighbor ever, and well...he's the best neighbor ever.

Tuesday morning we drove to Joe's parents house. They are real troopers. Joe's father drove us all the way to Boston. It was a LONG drive, and not so comfortable for Joe. It was great to see Albert when we got to Boston though. We continued to do our best to stay positive and just enjoy each others company.

Wednesday afternoon was our appointment for a second diagnosis. We saw Channing who helped arrange the appointment for Joe. Joe's family has known Channing forever. He has been so helpful. Joe had his blood drawn again. By the end of this day, the doctor said that he could not look Joe in the eye and give him a final diagnosis because the slides sent from West Penn just were clumpy or thick. So Joe needed to get a second Bone Marrow Biopsy. Poor guy.

Thursday, we flew home so that Joe didn't have to suffer such a long trip. We had handy dandy masks for Joe to wear on the plane. Joe's parents drove back to PGH. *whew* Julie so kindly picked us up from the airport. It was a treat to spend the ride home from the airport home with her - she's so positive and cheery! In the evening we got to hang out with my parents! They have been so encouraging, which is wonderful.

Friday was a waiting game. Joe's parents were so generous and sweet and arranged for our air ducts to be cleaned. They also helped with cleaning around the house and made sure we were fed. Finally Joe got to speak with the doctor in Boston. He said that he was positive that Joe did NOT have AML. It wasn't even a discussion. Everything was consistent with Joe having High-Grade or High-Risk MDS. Initially, it seemed this might be a lesser of two evils. But turns out, it really isn't. PGH doc and Boston doc had a discussion and they did agree that if Joe's brother Albert is a match, they want Joe to go straight to having a bone marrow transplant. Scary stuff. But again. We're STAYING POSITIVE! Sunday Joe goes back to the hospital for another blood draw.

Saturday we took it easy and updated some people over the phone. Joe's friend Jay is a hem-onc dude so he has been nothing but wonderful in helping Joe and the rest of us understand what's going on and what to expect. Joe has been told he can see some people as long as he is careful. So we had some pizza for dinner and then went to see a small group of church friends - Pastor Jim, Kathy, Vince (who was supposed to be partying elsewhere?), TK, and host Eric. We also got to see Patrick on our way out the door. Everyone was so good about washing their hands, and they all sat really far away from Joe and didn't touch him. It was so great for Joe to see some friends though. Everybody made sure he had a huge smile on his face with funny stories...until the end when things got a bit teary. I keep telling people that if they make Joe cry, I'm gonna beat them up! Nobody listens though. :)