Show Me the Money - $10K for Your Life

More bad news – my brother is not a half match either. There’s a 1:2 chance that he would be a half match and apparently one of us was switched at birth because he doesn’t match. Mom is completely dumbfounded because we looked so much alike at birth and as little kids (we really did) so how can he not match me at all?

The doctors gave me a very small glimmer of hope by asking to type my cousins as there’s a 1:8 chance one of them could be a donor match. I have four cousins so let’s see what happens. My insurance will not pay to type my cousins so that cost will be an out of pocket expense to me at $435 per cousin. Next, my insurance will also not pay to do a search in the National bone marrow registry and that expense will cost me $10,000. You read that right - $10K. At first I was floored by the cost to do a search in a database – how can it be that expensive? After thinking about it and talking to a few people, I’ve come to realize that cost must include searching for a donor match, carefully screening the person (full health workup), and then prepping them for the donor process (which includes Neupogen shots to maximize their stem cells to help me on the other end). That makes me feel better, but $10K is a lot of money. We’ll find the money somehow (now up to $12K if you included the cost to type my cousins), but how do people do it and why doesn’t insurance cover the cost? They’ll cover the transplant, but not the search process and the search is part of the transplant. Without the search, there is no transplant. It boggles my mind.

On top of all this, NIH did a preliminary search (which is free) and found no 10/10, or “perfect” match for me but did find 50 9/10 matches. I’m trying to be positive that 50 9/10 matches are better than no match at all, but I’m floored that there aren’t more out of the hundred thousand people in the database. I really don’t need to be that special and I want to find that perfect match who will help me live.

I’m having a really tough time this week dealing with this news plus the doctor in Texas started rattling off mortality rates and statistics with a half match versus a 9/10 match. I know the prognosis for MDS is not that great, but I didn’t need to hear it on the phone at work. I’ve decided I need another doctor with better bedside manners and one who will tell me that I have a tough road ahead and it’s not going to be easy, but he or she will help me FIGHT. I don’t need some research doctor to give me the stats and make me feel like I’m up against the impossible before I even start this journey. I've asked my doctor here for recommendations and then I'll call the advocacy center to see if they can give me someone else. I just can't deal with a bad doctor too.

I'm also trying to figure out whether I need to fly back to Texas to meet with their lymphoma doctor. I am scheduled to go back on Monday, but I'm trying to determine if I really need to go or can we work it over the phone with my local doctors. If the lymphoma is back, then maybe we can work the treatment locally? I just pray that the lymphoma is not back - one problem at a time.

Back from Texas

I went to MD Anderson last week to meet with their transplant specialists. I was also scheduled to have another bone marrow biopsy (super!), an echocardiogram, and some kind of test where I breathe into a tube to test my lung capacity to make sure my body can handle the rigors of the stem cell transplant. They changed my schedule around and added a PET and CT scan on Thursday and Friday. Not only that, but they moved the biopsy from Wednesday to Tuesday and since I hadn't planned on that, I left my Ativan back at Mike's Aunt's house. I started to panic at lunch when I realized it and worked quickly to get their nurse to prescribe me one pill so I could take it before the biopsy. Then I had to rush the pharmacy to get it in time. I managed to pick up the medication and take it 30 minutes before, but it was probably a little too late for it to take full effect. Mike wasn't allowed into the room with me (even though he didn't pass out during my last two procedures) so I grabbed my iPad for a music distraction, but I couldn't remember how to turn the dang volume up and had to give up so they could get started.

The procedure didn't go so well. I've either had a biopsy or an aspiration, but they combined both into one procedure - double ouch. The aspiration part is a funky kind of painful feeling and hard to describe. I think they pull the fluid out, so it's just a weird sensation. After the aspiration, they did the biopsy and that's when the tech ran into trouble. She couldn't get the need out of my bone. It was stuck, no matter how hard she pulled. I know this because she was telling me. She tried several times and while I thought about passing out, I also had visions of walking down the hall with the dang needle in my hip. She finally got it out, but the piece of bone she needed for the biopsy wouldn't come with it so she had to stick me again. Luckily it went better the second time - no stuck needle. It was not fun. That's why I hate bone marrow biopsies. Next time, I'm taking TWO Ativans.

I met with the doctor. He was/is concerned that my lymphoma is returning (and freaked out on me). I told him to talk to Dr. Wilson at NIH but he seemed to blow me off and said he'd talk to their lymphoma expert. Their lymphoma guy reviewed my records and agreed with Dr. Wilson that he doesn't think the lymphoma has returned or I would be sick by now and in the hospital versus walking around. They went ahead and scheduled the PET and CT anyway just to be sure. I get that and I know they need to be sure because that would certainly change my treatment plan.

Now I'm waiting for all the test results and trying to figure where I should go for treatment: MD Anderson or Hopkins. MD Anderson also thought that a haplo-identical (half match) would be the best option. They're going to re-test my brother just to be sure and I heard yesterday that they want to look at my four cousins too as there's a 1:8 chance that they could be a haplo-identical match. Once the insurance clears it, test kits will be mailed to everyone. I just have to think about which conditioning regiment is the best as both hospitals have different approaches for the pre-conditioning for the transplant. I need to determine which has the best success rate and which is the best for me (that's of course if I have a half-match in my family). If I don't have a half-match, then I need to keep looking for the 10/10 or 9/10. Too many things to consider, and the clock is ticking away on when to start the process.

Dr. Wallmart is My Homeboy

Dr. Wallmart (name has been changed) is a godsend. In 2007, Mom wanted me to see him for my lymphoma treatment but since I had already been admitted into NIH, I decided it was easier to just keep going there (and easier on my wallet since the treatments were free and no messy co-pays involved). Mom loves Dr. Wallmart and raves about him all the time. Now that I'm in limbo bouncing around between doctors and hospitals, I've been really stressed with all this thinking, planning, and information gathering. It's a lot of work and I've been going crazy. I've been looking for a hematologist or someone to track my weekly blood draws and it's been just stressful trying to get it all worked out. I had tried on my own to get an appointment with Dr. Wallmart's office, but his scheduling and new patient coordinators hadn't called me back. Mom went to see Dr. Wallmart on my behalf and told him about my new situation and asked if he would see me. He told her that he would work me in his schedule, just tell the scheduling people. When the scheduling person finally called me back, the first appointment available was September 27. I tossed down the gauntlet and told her Dr. Wallmart had said to work me in. Magically, I was able to secure an appointment yesterday (9/7).

I've decided Dr. Wallmart is my homeboy. He is awesome. He's going to help me decide where to go once I get back from MD Anderson and help me map out my game plan. He also said he would track my blood work and help me gather the information I need to make this ominous decision. He knows the Hopkins doctor and will chat with him about his findings. I was really impressed when he called Dr. Wilson at NIH while I was finalizing my next appointment. Dr. Wallmart is ON TOP OF THINGS!! I already feel some of the load lifting from my shoulders. I have a homeboy. A teammate. A cheerleader. He's exactly what I need. Thanks, Mom.