Training for a 5K

My knee is finally better! I've walked 16 laps around the floor today, which is a vast improvement over any day this week when the most laps I did was three total. I've also kicked the walker to the curb and am able to just hang on to my IV pole. I keep joking with the staff that I'm training for a 5k.

My morning was a little trying. Since I had the fevers a couple of times yesterday, I had sweated a lot in my bed and I smelled funky. But to take a shower, the nurse has to unhook me from the IV pole and wrap my PICC in plastic (press-n-seal saran wrap works best from what I hear). Unfortunately, my PICC line had done some funky twist in my chest and they weren't able to use it until it got fixed so I got stuck with an IV yesterday. Because the PICC line was compromised, I spent the morning waiting for the IV team to come by to fix it. After "power flushing" my line with a bunch of heparin, they realized it would just have to come out and be replaced. Not a bad process, but not fun either. I managed to get through it without any sedative. It's not painful (the numbing part hurts more). After they re-did the PICC (from my hospital bed, BTW) I had to wait to be transported for a chest x-ray to make sure they fixed it. After a while, I finally got down to the x-ray area and waited for the actual x-ray. By the time I got back upstairs to my room, it was nearly 11am.

I was still waiting for my shower. I had asked the nurse much earlier that morning if she could get me ready for the shower. A tech came in and wrapped up my PICC, but she wasn't allowed to unhook the IV so we had to wait for the nurse. I had my saran-wrap arm wrapped for two hours by then and was eager to get my shower. I knew the chemo was supposed to start at noon so I had a very small window to get my shower in, but I knew I could do it. Unfortunately, the nurse didn't come into my room until 11:50 so she started the chemo and I waited another hour. The good news was that my PICC was fixed so they could use it again (which means tomorrow morning's blood draw should be a LOT easier). I finished that chemo and they had to flush the line and do some other things, but I finally got unhooked from the IV and into the SHOWER!! Hallelujah! The angels sang and the stench lifted! Since I still have my hair for now it felt great to wash it.

I just did the math on my baldness (typically +16 days after chemo), I should be bald by Halloween. Paint me orange and put a tiny green "stem" hat on me and call me the Great Pumpkin! I could have some fun with this. :)

Houston, We Have Arrived

I saw Dr. Wallmark on October 8th and based on the results of my blood work, he called the doctor at MD Anderson to express his concern that things were "heating up". After they talked, Dr Wallmark said I had an appointment with MD Anderson on the 12th and he suggested I take it. We spent the weekend packing up our stuff, dealing with what to do with our tenants, and figuring out who would take care of Shelby and Riley. It was a rough weekend and so hard to say goodbye to the boys. We left on Monday and arrived late at Mike's Aunt Valerie and Uncle Steven's house. I had another bone marrow biopsy on Tuesday and the news was worse than I thought - my blasts, which had previously been at 5%, had jumped to 20% and I was diagnosed with leukemia. I met with the leukemia team on Thursday and they admitted me on Friday. I started the first 5-day treatment on Saturday as an inpatient. If things go well, I may not need another round so we'll see.

It's been rough since I arrived. My knee started aching the weekend before I left and it got worse with the plane ride on the way down to the point where I had a hard time walking. Mike pushed me out of the airport in a wheelchair. When we finally got admitted late Friday night, Mike had to push me again in a wheelchair through the long, winding halls of the hospital with a small suitcase in tow. The first night, we didn't get any sleep between the PICC installation at 1am, the chest x-ray at 2am, and the usual rounds of vital signs at all hours. They wanted to start the chemo at 4am, but Mike begged them to reconsider and they relented. Despite that, we still barely got any sleep but at least we got more than we would have. They were then supposed to start chemo at 6am but then changed it to 9am.

Since then, I've had a few rough spots here and there. Because my knee was hurting so bad, they gave me morphine in my IV line and I threw up my smoothie about 30 minutes later. No more morphine for me! I took a pill form of morphine with no problems. I had someone from physical therapy come in and give me stretches and a walker to I could walk. My knee finally started to feel better yesterday and I've had a couple of setbacks but it's a vast improvement from where I was. I've run a couple of fevers today and felt crappy from it, but I'm doing better right now. This morning was also rough - my mom asked if I wanted toast for breakfast and I threw up in the trash can. I finally nibbled on crackers and felt better. Oh, and one of the chemo drugs gave me a HUGE headache yesterday which caused me to throw up too. Today they gave me some meds before the chemo to prevent the headache and it worked.

I did get some great news today. They found a 9/10 donor match who agreed to do the match. They're going to run some additional tests to make sure we're a good match but I'm relieved to have found someone. We're waiting for the test results of my cousins to see if any of them are also a match. A related half-match is better than an unrelated match - but I have options!

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.

Doctor's Visits

I am unlucky...that's putting it mildly but it's unfortunately true. First, I had NHL and was treated with chemo, which is a natural treatment option for cancer. It turns out that the Adriamycin in the chemo regimen can cause post-treatment MDS and I'm just that unlucky one to have it happen. Adriamycin is a pretty nasty chemo drug (aren't they all?) but this one they really watch to make sure patients don't have a bad reaction. I never liked that Adriamycin stuff anyway, it reminded me of that Adriana character on the Sopranos (Christopher's girlfriend). She was pretty unlucky too. In my case, I have a weird-to-treat "9/11 T chromosome" type of MDS, which is not the "standard" MDS so a little harder to treat. Unlucky me.

My brother is not a match. Today's doctor asked if he was a half-match and I don't know the answer so I've got to contact NIH again to ask for all of my records in the last month so I know exactly how much an "un-match" Michael is. I met with Hopkins today and they do half-match transplants, or haploidentical, and they also do matched unrelated donor, or MUD, transplants. However, their program is geared more towards the haploidentical transplant. Dr. Gore was very personable and I liked him very much. He's going to present my case to the team tomorrow to see what their consensus is for treatment.

I have a couple of options at Hopkins. Their goal would be to get me treated and into remission from the MDS prior to doing any transplant. The first would be taking Vidaza on an outpatient basis at Shipley Hospital, which is closer to home, for six months until remission is achieved. The second is going for the gusto and treating me with hard-core chemo for a month at Hopkins prior to starting the transplant (bye-bye hair). There are pros and cons to both. Obviously, with a six-month treatment on an outpatient level I could continue to work and live "normally". However, is that really going to kick MDS to the curb later when I undergo the transplant? I don't know if going the "soft" route is what I want to do. On the other hand, what if the hard-core chemo makes me really sick prior to transplant and I don't recover enough to do the transplant? I didn't handle chemo really well the last time and was down for the count with low WBCs and RBCs all the time. Then there is the other side where the Vidaza could buy me more time to find that perfect 10/10 match. The doctor's concern is that this "thing" could rear it's ugly head at any time and become leukemia and then it's harder to treat. I don't want that either.

I meet with the doctors at MD Anderson in Houston in September. I'm curious as to what their treatment options will be. After MD Anderson, I will need to make a decision soon before something terrible really does happen. I have so much to think about and every meeting with a different doctor gives me new information that only adds to the general confusion. None of this is easy, that's for sure.

The only lucky thing I have going for me is that I have Mike. We celebrated 12 years yesterday with a nice weekend in Ocean City. I'm extremely lucky and greatly blessed to have found someone like him. This can't be easy for him either and I'm grateful that I have him in my life.

To-Marrow, To-Marrow, I Love Ya To-Marrow

First, I stole the title of today's blog from a friend. It was too awesome not to use again. I have officially been diagnosed with a pesky little sucker called myelodysplastic syndrome (MDS) and I'm going to need a bone marrow transplant (BMT) in the near future. My friends Blair and Julie are either registering with the national marrow registry (http://www.marrow.org/) or signing up everyone they know to help me out in finding a match. In addition to me, my friend Traci's 13 year old nephew desperately needs a minority match to save his life from leukemia.

Most people, including myself, tend to think that donating marrow is painful but I've found out through lots of reading that most marrow donation is taken through an IV, much like donating plasma, rather than the older procedure where they tap your hip bone. In fact, they take the blood through an IV, separate out the stem cells, and give the donor back their own blood - all in one sitting. I think more people might be willing to donate if they knew it wasn't that bad.

Registering is simple - go to www.marrow.org and fill out a simple questionnaire that asks your medical history. Then a couple of weeks later you're receive a packet with some cotton swabs. It takes about 2 minutes to swab your cheeks. Then you send the swabs back to the registry program. It's THAT simple. If you are already registered or regsitered a long time ago, you might want to call the National registry people to make sure your contact information is up-to-date so they can find you if they need it.

I know I would appreciate it and I'm sure Traci's nephew would appreciate it too. He was on tv last week looking for a match. All he wants to do is get better so he can play football next year with his high school team.