I Feel Like Busting Loose

It's Day 15 and my counts are on the rise even more to 1.3. The doc said it looks like I will be released on schedule next week. Wahoo!! My mood has improved drastically with this news. I'm really excited to see what news will be tomorrow. This is getting exciting.

Today my brother flew back from MD to see me and tomorrow Brian's brother flys in from in FL and Gail is coming from from Austin. We're going to have to manage all these visitors so I don't get exhausted.

Today the evil doctors gave me lasik, which makes me pee like a race horse. It's to make sure I don't retain extra fluid and believe me I don't on this stuff. Evil people! I think it's just about of my system.

Day #14

Things are certainly on the upswing today. The nurse woke me up to tell me that I have officially ENGRAFTED!!! Meaning my WBCs have hit more than 0.5 at 0.6. I exceeded my own expectations and i can hopefully moving up until i hit the perfect which would signal my release. There could still be a couple of bumps, but things are looking up. I've increased my water intake because that's another condition for me to be released by the 19th. Woo hoo!!!! There was a collective happy dance here in Houston this morning.

I've also found a happy medium on medication that doesn't make me loopy or anxious so it's all good now. I also look forward to the neupogen shots that help me generate the WBCs I need. I'd take 2 0r 3 a day if i thought it would help!!

Day #13

Things are finally starting to look up. After having my counts make a minor jump from 0.0 WBC and then falling back to 0 for a few days, I wasn't doing so well. This place makes me stir crazy and I had a panic attack the other night - not pretty. I'm ok falling asleep but if I wake up, then I have to calm myself down all over. ABBA's Mama mia helps but I listened to it for nearly 4 hours the other night. However, I think my team has come up with a solution which involves Ativan every 6 hours through IV and then another sleeping pill only at night. We started it today and I already feel calmer.

The other bothersome thing is that my vision starting blurring the other day so I can't read, watch tv, play games, mess with my iPad or do much of anything which I'm sure didn't help the anxiety. We saw the Ophtamologist yesterday and they thought the vision would improve on its own as the WBC improved - so disappointed. However today, I looked up at the tv guide and could READ!! It's not perfect but I can watch tv and see the computer.

I've also had a good afternoon - took a couple of walks and found the exercise bike and i feel like i have a little more energy. What a good day in the end. Praise God!

Day +3

It's been 3 days since my transplant. Cousin Liz is starting to feel better and I'm so glad. She felt like she'd been kicked by a mule in her lower back from the procedure. She is my hero for all that she's been through.

I'm doing well the doctors say. Today my voice is coming and going because of the chemo but I feel fine and I'm thankful for that. I spent the morning watching a movie on iTunes so I wouldn't have to talk. They're giving me cytoxin today and tomorrow (6am-9am!) to help my body accept the transplanted marrow vs reject it. The downside is that I'm requird to pee a lot to help get rid of the toxins from the cytoxin so I'm getting plenty of exercise going to the bathroom!

Oh yeah, HAPPY NEW YEAR! It doesn't quite feel like New Years, but I did wake up around 11:40 last night to watch Carson ring in the new year. I'm hoping for a healthier 2011 for sure. Several people sent along New Year's party supplies so we wore the hats and took lots of picture (on Facebook). Fun!

Mike is napping since he was up late "partying" in the family room with my brother. They were up until 2am finishing a puzzle! Those crazy guys. I actually called him because I thought they might have left and found a bar somewhere.

Pictures

Mike and Cousin Hunter hanging out at the Rodeo Benefit for me



Here's Me, Mike, and Juicy!

Day -1

After this I'm going to need a brain transplant because I keep forgetting my password to this site. Tomorrow is Day 0 or TRANSPLANT DAY. I'm nervous, anxious, excited, and more to get to this day. My cousin Liz is here today to get ready for her end of the process when she gets knocked out and donates her healthy marrow to me. I guess all of my bad marrow is now gone as I've gone through 4 days of induction chemo before today. I'm super grateful to Liz for stepping up and doing this somewhat painful process for me. She really is giving me a new opportunity for life and hopefully many more years. It's an amazing thing and amazing that science and medicine has gotten many patients through this same process. MD Anderson does 700 transplants a year! Amazing when you think about that - almost 2 every day.

I've been feeling okay. The biggest issues are nausea and the pneumonia everyone's worried about. The nausea sucks and I just tossed my cookies again after I ate lunch. I can eat some days but not others. The pneumonia is freaking everyone out because I started coughing again on Saturday and my Mom came down with something last Thursday but was coming around here until Monday when the Infectious Disease doctor essentially kicked her out until she feels better. Dad is down here too but now he's got the cold and I haven't seen him for a couple of days.

So the word is that Liz will have her procedure around 8am tomorrow morning and then sometime after I lunch I'll receive her fresh marrow through a central line (IV), which is kind of like a blood transfusion. I think it takes 1-2 hours for the whole process and I might feel a little sleepy. I just hope this is the cure I need and that it works for a long, long, long time.

Happy Turkey Day

It's been a little while since I've blogged, but I forgot my password and it took us some time to figure out how to reset it. Now I'm back just in time to wish you a Happy Thanksgiving. We're here in Houston celebrating with Mike's family including his mom Gail, Aunt Pam, and of course Uncle Steve and Aunt Valerie along with his cousins Jason, Travis, and Abbe. His brother Brian and his girlfriend flew up for the occassion too. It's nice because it's been a while since we've had a holiday with some of his family. My family went to my Grandma's today.

I'm extremely aware today of all the things I am grateful for: family and friends who love me and Mike. The amount of support and love we have received from everyone has been amazing. Not only has my cousin Gina thrown a rodeo and a BBQ in my honor to raise money (nearly $10k!) and sign people up to be marrow donors, but she's driven four hours to see me. She's so awesome and I love her so much. I wish I could spend more time with her because she is just so energetic and being around her always makes me happy. We just laugh hysterically each time we see each other. I'm also extremely grateful for my cousin Liz: my half match donor. I literally owe her my life. For her to sign up to donate marrow for me (a somewhat painful process), is something I will never forget. I had a feeeling we would be a match just based on some genetic similiarities, but I honestly had no idea. She is amazing.

I'm also grateful and ecstatic that my brother Michael and his wife Shaunda are expecting twins (on my birthday!). When he told me, the first thing that popped into my head was the "Circle of Life" from the Lion King when they held up the baby cub. Hearing the fantastic news gives me a lot of hope and a surge of energy that I so dearly need to get through the next few months. I'm so excited to meet the little ones and they're expecting a boy and a girl! I just can't wait to be an aunt and spoil the little ones as much as possible.

I finally have my transplant schedule. After battling pneumonia and waiting weeks to recover from that horrible episode, we met with the transplant doctor on Tuesday and now my schedule is completely booked up. We've been lucky the past few weeks and only had to travel to the doctors once a week instead of 2-3 times a week, but that luxury is gone. Next week I meet with doctors and have a whole bunch of tests to make sure my body is able to handle the transplant (plus to see how many blasts I have in my marrow now). Next Sunday (12/5), I check into the hospital to begin my pre-transplant activities and to start my 30 days of isolation. On 12/14, I'm scheduled to start the transplant - otherwise known as Day 0. After that, the next 100 days are critical and it's going to be intense. I'm nervous and scared, but it's what I came to Texas to do so I'm anxious to get the show on the road. However, having pneumonia and still coughing even today scares the crap out of me. Hopefully, it will not complicate things any more than it already has.

Roller Coaster Week

I went to bed Sunday with a slightly scratchy voice, which I attributed to allergies but my body had other plans for me and Monday began the downward sprial. I woke up at 2:30 with a headache so Mike suggested I take my temperature and it was 100.7 - close to a fever but not necessarily something that would get me in the hospital. About 45 minutes later Mike woke me up so I could take my temperature: 103.9. Now THAT necessitated a trip the MD Anderson ER. We quickly packed up 2-3 days worth of clothes in a sleepy haze. My brother was leaving on Monday we had to wake him up so we could figure out how to get to the airport. Luckily, Mike's Mom was still there because she was also driving back to Austin so I suggested she drive him, which she did, and we headed to the ER at 4am. Mike sped through the darkened town and we made good time getting here (no traffic!). Unfortunately, we could not find the MD Anderson ER very easily to we circled the streets several times -finding the Children's hospital ER, the Methodist Hospital ER and every other ER but ours. We finally found it and I checked in. They immediately hooked me up and drew blood. They were admitting me, but it took them 16 hours to find me a bed. Yikes! I was pretty miserable and their hard-as-a-rock bed didn't help.

After I finally got moved to the 12 floor, my day didn't get any better. I spent the first few days fighting fevers, nausea, and a teerrible cough - which gave me fevers and the urge to puke. It was pretty rough and I didn't sleep well because of the coughing spasms, which went on and on for about 20 minutes. They gave me 4-hour and 6-hour cough medicine, which worked for the first two hours and then just stops working. On Tuesday, they sent me downstairs for a chest x-ray because they heard a touch of pneumonia when they listened to my chest and I hacked up a lung. A nurse walking by commented that I should try sucking on some hard candy to stop the cough. She brought me a couple and it worked! When I got back to my room, I asked cousin Gina to pick me up some mints at the store.

Cousins Gina brought Liz up here so the doc could do some tests on her, which turned into a full day of bloodwork, an EKG, and urine testing. She also met with the doc (Mike came down for that since I was completely wiped out. She is a complete haplo-identical match and they're going to do actual bone marrow donation vs the stem cell transplant. They're going to knock her out under general anesthesia. I didn't want so scare here, but I did give her the facts. It doesn’t hurt a bit, but the pressure is the worst part. I've had 5 of them and I was fully awake. I think being knocked out will completely help control the pain. I think they're going to put it into me as soon as they are done withdrawing from her. I wonder if I'll be awake with my ativan pills? We'll have to see. The want to start 11/12, 11/15, or 11/18 - but it depends on me kicking these fevers down and have more than zero white blood cells.

The worst day was yesterday. I started out normal, but I had a couple of fevers. Then my blood pressure dropped and kept getting lower. When it hit 70, it scared the crap out of my team and they called in the ICU team. The first story was that a member of the ICU was going to come up here to closely monitor me. As she was heading up, they told me that I was being transferred so Mike rushed to pack up all of our crap so we'd be ready when she got here. She arrived and hooked me up to check my heart rate and a whole bunch of other things. I had tubes coming out everywhere! Plus the ICU scared me, but probably not as much since I was feeling so out of it. The ICU nurse monitored me while they looked for a bed. At the same time the were dumping a ton a fluids in me to help the blood pressure rise. A couple of hours later, my blood pressure started going up to 90. When it hit 100, they decided not to transfer me. Yay. They monitored me overnight and my blood pressure remained in the 100s.

When I tried to sleep last night, I coughed so bad I didn't get much sleep. I started hallucinating that random nurses were coming in my room to talk to me so I kept waking up just to check. My hallucinations were asking me questions and either I'd answer then or there'd be nobody in the room. It was a lonnnng night.

Angela wrote the above words, but has been unable to finish the post, so I (Mike) will step in.

After the ICU scare, she has continued to progress in the positive direction. Her vitals, blood pressure, oxygen levels, fevers, have all gotten better. Hard to tell exactly why, but I think that once the doc's found out for sure she had pneumonia - they were able to address that with a more targeted approach.

Over the last 2 days, her vitals have been stable, no fevers at all, coughing is under control and diminishing, and she is getting lots of sleep - which she desperately needed. For the last 2 nights she has slept much better (not great) but better. Additionally she has been able to sleep during the day. The one thing that has not gone away is her hallucinations. The doctors said that it was a side effect of one of the antibiotics. So hopefully they will go away soon. I just got an update on the hallucination….they are a side effect of the sleeping pill we gave her to help her sleep. It should wear off today!

The doctor also said that her “counts” (blood work and immune system) are on the rise. Her white blood counts (WBC) was 0.0 for about 2 weeks so it is ABOUT time. Yesterday it rose to 0.3 and should continue to more than double every day. The doc’s also said this morning that she “should” be released this coming week. WE HOPE!

11/9 Update – Yesterday the doctors said we were going to be released this morning. However, Angela had another coughing fit last night that we couldn’t get control of and it caused a fever. When the doctors saw the fever they said they wanted to keep her here another day for monitoring. As bad as I want to leave, it works out because Angela had a bone marrow biopsy and a chest CT scan today. It would have been late when we left the hospital anyway. The biopsy is to verify (hopefully) that the Leukemia is in remission and the chest CT is to check the status of the pneumonia. Additionally, the doctors promised us (again) that we will be going home (texas) tomorrow.

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.

Life's a Dance

As I prepare myself for tomorrow's NIH visit I'm thinking of two country songs: Garth Brooks, "Standing Outside the Fire" and John Michael Montgomery's "Life's a Dance". Both are ultimately about living life to the fullest and when we take a fall, we need to get right back up and jump back into life for more. I am using the lyrics from both of these songs to give me the courage and strength to fully understand what the doctors may tell me tomorrow.

From all the research I've been doing, if I have any form of MDS it will not be an easy road to recovery. Tonight I don't know the details: if I do have MDS, how severe it is, and what treatment I will need. Tonight is the great unknown for tomorrow may bring great relief or great sorrow. I just hope I am able to handle the results and be able to understand what all of my treatment options are. I also hope the doctors have their answers and have come up with some sort of game plan and that this is treatable.

These past few weeks have been a struggle. I've had doubts and am facing a number of fears. It's been much harder than when I was diagnosed with NHL. For the past few years post-chemo, I've been feeling healthier than ever. I've run a number of 5k races and an 8k (and have beaten people younger than me). I work out twice a week with a trainer and have gone so much stronger. To have all of of that taken away from me in such a short amount of time has been difficult. There's another song on the radio now called, "Billionaire" and Travie McCoy sings about how he wants to be a billionaire, be on the cover of Forbes Magazine, and smile next to Oprah and the Queen. Well, I'd give anything to have good health. I don't want to be a billionare. I just want to grow old. Is that to much to ask?

Life's a Dance Lyrics
The longer I live the more I believe
You do have to give if you wanna receive
There's a time to listen, a time to talk
And you might have to crawl even after you walk
Had sure things blow up in my face
Seen the long shot win the race
Been knocked down by the slamming door
Picked myself up and came back for more

Life's a dance you learn as you go
Sometimes you lead, sometimes you follow
Don't worry about what you don't know
Life's a dance you learn as you go

The Asteroid

I feel like I'm in one of those asteroid movies and I'm standing on the beach waiting to see if the asteroid is going to hit the planet or if Bruce Willis is going to blow it up in time. I had a CT scan on the 8th and then went to clinic to meet with the doctors in the afternoon. George, who performed my biopsy, was the fellow who examined me. He peppered me with all sorts of questions while examining me and I knew I was going to see Dr. Wilson to explain the biopsy results.

Dr. Wilson explained that I might have something called Myleodysplastic Syndrome (MDS). Essentially my bone marrow is showing damage from the chemo, which they had not seen on the EPOCH protocol. It's also typically seen in adults over 60 and in men. I am an anomoly. He used a lot of big words that I didn't quite catch, but they needed to do more tests to determine how servere it is. On the less severe side, I could have no problems for years but the more severe side could into acute myelogenous leukemia (AML). In addition, my medialstinal and my liver are enlarged. Since my NHL started in the medialstinal, I had a PET scan last Wednesday to check for cancer cells. He also talked about possibly needing a bone marrow transplant, so I had genetic testing done last Monday and another bone marrow biopsy/aspiration. They also mentioned my brother, Michael, might need to get genetic testing to see if he's a match.

I go back to NIH on Thursday to find out the results of all of my tests. I am understandably shaken by this news and I am having a hard time dealing with this news. I am hoping Bruce Willis blows up this asteroid before it gets here. Mike has been a rock as usual, but he is just as shaken as I am. All of our summer plans are on hold until we know what we are facing.

Here's a link to MDS to explain it:
http://www.marrow.org/PATIENT/undrstnd_disease_treat/Lrn_about_disease/MDS/index.html

That's Not All...

So, I had an MRI with some funky stuff on it and finally decided to follow up with my nurse practitioner after my disastrous 5k race where I did just fine for the first mile and then felt like someone sat on my chest for the next two. I could not breathe and even when I slowed down to walk I felt like my lungs were the size of dimes. Near the end of the race I started talking to myself and trash-talking my tumor (Priscilla, if you remember) and threatened to kick her butt if she planned on coming back. I threatened her with a good beat-down, so let's hope it worked. I finished the race in a run but in tears as I seriously thought (think?) Priscilla may be working her way back. So I called the doctor's office the next week and made an appointment.

Betsy, my beloved NP who sent me to the cardiologist's back in 2007, listened to my issues and read my MRI report and suggested I get some blood work. I got the results back the next day and she said the results were "not normal, but not terrible". Everything was low: platelet count, hemoglobin, WBC, absolute neutrofils...you name it - LOW, LOW, LOW. I called Doug at NIH (and Peggy my caseworker) and read them both reports. In the end, Doug called back at the end of the day on Friday and said the team needed me to do a bone marrow biopsy.

After a few scheduling issues, I was set for the biopsy on July 1 with a follow-up on the 8th. Since my 6 month check-up was supposed to be the 15th, we moved it to the 8th so I could get the CT done and all the results on the same day. I did the biopsy in the special procedures unit - I'd been there before (for a PICC line installation that thankfully never happened and something else I don't remember). George is the NIH bone marrow biopsy rock star so he and an assistant (who kind of sucks) did the procedure. Mike found a chair and perched above to watch the whole thing. He didn't pass out, although I thought about it myself. It was painful, but not a sharp pain but an uncomfortable kind of pressure that went on for far too long. Mike said that they assistant wasn't strong enough to muscle it and she was having a hard time getting through my bone. Plus I felt a small sharp pain and one point and she said, "Oops, I missed a little". NOT what I want to hear. George finally stepped in and it got a little better, but not much. Also, since I work out and am in pretty good shape it was much more difficult for them to get through my bones. Lovely - one downside of working out.

I got it done and was sent home with instructions to take Tylenol if it hurt, which I did that night. I was also not allowed to immerse myself in water for the past 7 days (no swimming or hot tubs), which sucked considering I went to the Chester River on the Eastern Shore for the 4th - swimming, tubing, water skiing, jetsking. Not for me. So, now I wait until Thursday. I am nervous and worried, but I really try not to think too much about it. Mostly, I think about how I will react to bad news and what that would mean. I really just hope that I'll need some kind of shots to bring up my counts and I will take that over chemo any day. Either way, I will deal. I have to. I'm just hoping for a Happy Birthday next week - and that's the best I can do.

Results are In...

I saw the neurologist on Thursday about my EMG and MRI tests and the results look pretty good. In other words, no neurological reason for why I have bad leg and foot cramps. What was interesting was that the test picked up on some marrow issues and that I could have some anemia issues - I'm sure all related to my NHL since it was a blood cancer. The doctor didn't mention it, but I saw it on the report and I'm sure the test was just picking up my previous stuff. I will mention it to NIH and bring the report, just to be sure.

So, I'm back to the drawing board on the cramping issue. The doc did say to do what I've started doing anyway, which is drink more water and electrolytes, eat more bananas, up my magnesium intake, and stretch. My friends have forwarded me articles about how drinking pickle juice shots could help too so I'll be trying that remedy next. I'm not sure what to do next or if I should bother with another doctor (what kind would I see anyway?) I'll just keep on trying different stuff and see if it helps.

What Golden Girls Means to Me

With the passing of Rue McClanahan, I want to reflect for a moment on all that the Golden Girls means to me. I loved the show when it was on in the 80s - a bunch of sassy, real, older ladies were a great role model for me. Typically, you'd think of your grandma as a pearl-wearing, cake-baking woman in an apron and a housecoat (and really, only one of my grandma's even fits that bill) so this show opened up everyone's eyes that older ladies ROCK. The humor was biting while also emphasizing friendship and family. I loved it.

Back in 2007, during my self-named "Summer of Chemo" I used to watch re-runs of the a lot. It made me laugh when I didn't often feel like laughing. It transported me away from either the lonely couch at home or the hospital bed and took me to a happier place. In fact, one day I was hopped up on a combination of Ativan and some other sedatives the docs had given me so they could install the IJ line without me freaking out, I drifted in and out of a fog and figured out if they remade the Golden Girls into a movie who would play each character. The details are fuzzy, but I think I debated about whether Lindsay Lohan would make a good Blanche (if she would only stop being such a diva). I had the rest of them picked out, but I couldn't figure out who could play Dorothy. Like I said, I was hopped up on meds!

Now only the fantastically-terrific Ms. Betty White remains. She is amazing (I loved her on SNL) and I hope she will be able to continue rocking it for some time to come. Farewell, however, to the other Golden Girls: Rue McLanahan, Bea Arthur, and Estelle Getty. May you all rest and peace and thank you for being a friend.