Saturday, September 26, 2009

CT scan

Sorry I didn't post last night, but it was late and I was really tired after the long drive from Houston.

I was told Wednesday that I would be having a CT scan with and without contrast, so I shouldn't have been surprised on Friday when the nurse presented me with a barium smoothie. I also shouldn't have been surprised to see a small bolus of barium when I went in to have the CT scan, since I was having a pelvic series done. If you don't know the significance of the bolus, don't worry about it. If you do, my sympathies.

Dr. K. called me while I was navigating Houston's rush hour traffic in a bid to get home. Lucky for me I was trapped in a school carpool lane at the time and wouldn't be going anywhere so long as the crossing guard had his way. The CT scan didn't show anything unusual.

This finding lead Dr. K. to theorize that my phrenic nerve has been partially paralyzed. This is the nerve that, for lack of a better description, coordinates the movement of the diaphragm. So, the right side of my diaphragm is stuck in the up position which is causing the pain when I breathe. There's nothing to be done for it and as far as I can glean, it's not life threatening.

I'll be going back to Houston in December for a three month check-up and we'll repeat x-rays, etc. to see what's going on with my diaphragm. The paralyzed phrenic nerve isn't a definitive diagnosis and anything could happen between now and then.

Friday, September 18, 2009

One year check-up

*I'm not sure what's going on with the date in the header. I actually wrote and posted this on Thursday, Sept. 24. The appointment occurred on Wed., Sept. 23. Thanks for catching it Ronni.

Yesterday was an extraordinarily long day that started at 2am and didn't wrap up until midnight. My first appointment in Houston was at 7am and since I couldn't get it moved, Chris and I left the house at 2am for the five hour drive. I'd managed to get a solid 4 1/2 hours of sleep before we had to leave, so I took the first shift driving, giving Chris a chance to sleep on the way up there.

On the schedule for the day was a 14 vial blood draw, bone density scan, complete pulmonary function test, bone marrow aspiration and biopsy, one year transplant survivor follow up visit, and a meeting with my transplant doctor.

The first two events were fairly routine and done within a matter of minutes. The complete PFT took longer than it ever has in the past. It involves a series of breathing exercises to measure the capacity of your lungs and can usually be completed in under 15 minutes. I had to repeat the first test 7 times because I kept failing it. I didn't fair any better with the next two. While trying to fill my lungs to capacity, I developed a pain in the right side of my chest. Every time I felt it, I would stop inhaling which directly impacted my results. I told the tech about it and he felt that it shouldn't be an issue.

When I met with the APN for my BMT survivor meeting, she showed me just how poorly I had done on the PFT's. She had results from the last two times I'd taken the tests. One directly after my transplant and one the day I was released to return to BR. I'd lost about half of my ability which is definitely not good. I was also given the results of my bone density scan. I've lost over 15% in both of my hips which means I'm now osteopenic. This is just a step up from osteoporosis and explains why the PA doing my bone marrow biopsy kept complaining about my bones being soft. Normally, they complain about how dense my hip bones are and how hard it is to get a sample.

To help slow the bone loss, I have to do weight bearing exercises and start taking supplements again. I was taking calcium and vitamin d following the transplant, but had to stop in December when my liver started acting up. My team has shifted their view of the risk/benefit of supplements to my health versus not taking them and babying my liver.

The tests that measure my liver function are still elevated and my iron levels are still too high. At some point, I will probably have to take drugs to help my liver shunt the extra iron it has accumulated due to all of the blood transfusions that I've had to have over the course of the last three years. At the moment, my doctor wants to continue monitoring the situation.

I discussed the chest pain that I was having during the PFT's with Dr. K. and she speculated that I might have a cracked rib or a lesion on the bone. Just to be safe, she ordered x rays of my chest and ribs and asked us to stay overnight in Houston so I could have a CT scan today. The x rays showed that my ribs are fine and that there are no lesions or breaks. The right side of my diaphragm appeared elevated and according to my doctor, appeared to be getting irritated by something underneath it. This makes sense, since the position of the diaphragm correlates to the site of the pain.

The only appointment that I could get for a CT scan today was at 8pm so we elected to have something scheduled on Friday. We drove home so Chris didn't have to miss anymore work and the plan is for me to drive to Houston on Friday. Chris is hesitant to let me do this alone, but he recognizes that it's something that has to be done. I feel fine and so long as I don't take in a really deep breath, I don't have any pain.

I'm still dealing with the back issue as a result of the accident. Dr. K. gave me permission to see a chiropractor so long as I emphasize to them that I'm osteopenic. I still have to deal with the claims adjuster to get everything straightened out. If anyone can recommend a good chiropractor in Baton Rouge, I'd really appreciate it.

My sole complaint about this visit is that as a result of having a bone marrow biopsy, I can't shower for 48 hours. This is making me a little crazy, but I'll deal. The results from the aspiration and biopsy won't be in until next week, but my blood numbers have improved over last week's and I'm not showing any abnormal cells, so the team doesn't expect anything dire.

I'll post more tomorrow night when I get in from Houston and find out what's going on in my chest.


Last Sunday evening, my shoulder became stiff and sore to the point that I really didn't want to do much with my right arm. Tuesday evening, I began to feel very small tremors in my back. I've never had back problems, so I didn't recognize this signal for what it was. By midmorning Wednesday the spasms in my back were so bad that all I could do was lay in my bed. I have a very high threshold for pain, and this was debilitating.

To put things in perspective, I felt like a turtle that had been pushed onto its back. I could only lie in the bed clenching and unclenching my fists with each contraction. Each time I tried to get up, my back would begin to convulse to the point that I didn't want to breathe. I have a prescription for ativan and I thought that if I could take one, I might relax enough to be functional. Unfortunately, the ativan was on the opposite side of the room and I couldn't form a coherent plan to get them. Lucky for me Chris called while all of this was happening. He came home and got me settled.

Thursday I saw my local doctor who drew blood and checked me out. He was surprised that I'd managed to get to my age without having any back problems. Since he's only a handful of years older than me, I was surprised to hear that he had back problems at all. He prescribed an anti-inflammatory and a muscle relaxer. My lab results were a little unusual in that my WBC was 12.6 and my ANC was over 10. Whenever leukemia is present in me, my WBC is always high and my ANC is suspect. The doctor reassured us that it was probably a result of the wreck. Since my back and shoulder were bothering me he speculated that my body was calling in the reinforcements by making more neutrophils and white blood cells. He wanted to see me next week for another draw just to be safe, but I'll be having work done in Houston. He just wants to be sure that I'll have a blood draw. To be safe, he asked for a slide to be made up so he could have a look at my blood under the microscope. I got the call this morning that he didn't see anything unusual in the smear.

Since Wednesday, I've either been high on ativan, or completely tanked up on muscle relaxers. I know I talked to a few people on either day and realize that I may have imagined a few conversations as well. If I said anything off base, or more ridiculous than usual, I have to apologize. Tomorrow I'm going to start making calls to be sure I haven't alienated any friends in my drug induced coma. The muscle relaxer puts me so far out of it that I decided to stop taking it during the day. I'll definitely take it at bedtime, but I'll reserve daytime dosing for really bad days.

Tuesday, September 15, 2009

Save the date

My Houston check-up has been moved to Sept. 23. The day kicks off at 7:15 and rolls along until the very late afternoon. Since we're driving in from Baton Rouge, Chris and I need to decide whether we'll drive in the night before and get a room, or leave at 2am the morning of.

All is still well here. My shoulder started getting stiff and sore the other day, and I have to wonder if this is a remnant of the fender bender, since I don't really do anything active. The heaviest thing I picked up this weekend was my purse. I'm debating seeing the doctor about it, but know I should just to be safe. My poor hematologist/oncologist had no idea what he was getting into when he took me on as a patient. At least he has a great sense of humor and a good bedside manner.

Chris's birthday is Thursday, so feel free to harass him all day to show him he's loved. :)

Monday, September 14, 2009

Slight delay

I received a call from my PA in Houston asking me if I could push my appointment this week to next week because my transplant doctor is completely slammed. Of course I said yes. So, now we'll wait another week for tests, etc. I don't know when the appointment will happen, but will post as soon as I do.

Friday, September 11, 2009

Is it over yet?

As I get closer to my one year post transplant check-up my anxiety level ratchets up day by day. With the first transplant, my one year check-up was stellar. I hit all the milestones dead on and my team was pleased. Exactly one month later, the leukemia was back, angrier than ever. Funny how the doctors classify my type of ALL as angry. I've heard the bus and lightening analogies and all I can say is, yes, you can have the same bizarre accident twice. It's highly unlikely, but not unheard of.

Every twinge and creak is suspect. An allergy attack signals armageddon in my head, but I do my best not to let it show, and I think I've managed to fool most. Please don't think I'm a quivering mess behind closed doors, I don't operate like that. My anxiety manifests in my mind, in the form of "what if" conversations, which I try to shut down as quickly as possible. The small fragment of logic that's ever present always says the same thing. If it comes back, we'll have it treated. Case closed. Everything else will fall into place.

This week has been a bit of a trial for both me and Chris. In addition to the specter of leukemia, he injured himself on Monday and it was still bothering him by Wednesday, so he went to see a podiatrist for a second opinion. The doctor's opinion diverged from that of the clinic and he advised a slightly different treatment. Long story short, he pulled the nail. Chris hasn't been able to put pressure on the foot, so I've been on driving duty the last week. 4:30 am is not a pretty sight.

Yesterday, I had the opportunity to meet up with 2 old friends from highschool that I'd lost touch with. I had an amazing time catching up with them both and hope to maintain regular contact since we all live relatively close to one another. Unfortunately, I'm terrible about phone calls, as is one of the other friends, so Lori, you're in charge. :)

Still feeling good about doing something so simply normal, I ran a few errands, then it was time to pick Chris up. While I was waiting at a red light, I was rear ended by the truck sitting behind me. I was in Chris's sedan, which sits pretty close to the ground. The other driver said he took his foot off of the brake, and voila, bumper sandwich. The car's bumper is a total loss and the truck hit the car with enough force to deform the trunk and hood. Chris's car is so well engineered that the front end of the truck looks like it's been rearranged by a psychotic child. The bumper is turned up at both ends in the semblance of a sickly chrome smile and the grille is fractured. Before anyone gets worried, I'm fine, just irritated.

I got an estimate on repairs first thing this morning and am waiting to hear back from the other driver. He wanted the chance to come out of pocket for the repairs rather than take a hit on his insurance. Judging by the lengthy silence that followed the actual estimate, I'm guessing that he didn't think it was going to be that much. I have his insurance information and am waiting for him to call me back with a decision. The body shop needs to order the parts, but they won't until they get clarity on who will be footing the bill. Once the parts are in, the car will be in the shop for about a week.

Although I'm irritated by the inconvenience, I'm grateful that no one was hurt, that Chris will recover from his injury and that life is just generally good. I'm surrounded by loving friends and family, have a great little house and amazing husband. Both cats have managed to be healthy this week and I get to enjoy another day of being.

After all the bad jou-jou of this week I can still smile, because as a very sage man from the leukemia & lymphoma society message boards once told me, "A horrible dress rehearsal makes for a stellar opening night." I just have to believe that all of this week's inconveniences will add up to a very vanilla check-up and smooth sailing from here on out.

Tuesday, September 8, 2009

Trading places

Yesterday afternoon when most people were winding down from their Labor day celebrations, Chris and I were headed to the ER. For once in a very long while, I wasn't the patient. My poor sweet husband was clutching a bloody towel to his foot while I raced to the hospital.

Chris slipped in the shower and caught his toe on the lip of the shower door, tearing the nail of his big toe partially off. When I saw the nail sitting sideways on his toe, held in place by the cuticle, I nearly vomited. I can have a coherent conversation with you while someone draws spinal fluid from my back. I can even tell jokes while a PA breaks fragments of bone from my hip for biopsies, but I absolutely cannot imagine the pain associated with tearing off a toe nail. The very idea of it makes me cringe.

Of course the ER was packed to the gills thanks to the holiday and the fact that most doctor's offices were closed. Chris was uncomfortable with me sitting in the waiting room with so many sick people, so he sent me home while he waited to be seen. Since it looked like he was going to be there until the end of time, I stopped off at an after-hours clinic to see if they were open and if they had the facilities to treat Chris's injury. Yes and yes.

Chris was seen at the clinic about two hours after we got there and by 8:45 I was dropping his prescriptions off to be filled. I had to drive him into work this morning and pick him up shortly before noon when he started getting sick from the pain killers.

He keeps marvelling at the novelty of being looked after by me after having had to look after me for the last three years. It's such a normal, mundane thing, that I'm thrilled to be able to do it.

Saturday, September 5, 2009

A Letter

Tomorrow is one year since I watched the large red bag of marrow be gently hung on Ann's IV pole by Dr. Andersson. I think back to all the craziness of that time, and in comparison to what life is like now and it feels like a dream. Hurricane Gustav was bearing down on us and I was being told that I would have to leave the hospital soon and leave Ann behind in the most vulnerable state I could imagine.

I wanted to say thank you to the parents who donated her cords for the 1st transplant, but they did so chance to ever find out who they are. This time however, Ann has an adult donor that the NMDP has the contact info for and now we can.

I have struggled with how to write a letter to her donor. I've drafted it and redrafted it time and again. But I still come back to the fundamental problem of how to say thank you to someone who has literally saved the life of the person you would willingly die for.

I wish I had the eloquence of Shakespeare or the wit of Wilde. But I don't, and lacking their considerable talents I offer this instead...

Dear Kind Stranger,

One year ago my wife was struggling for life, as leukemia destroyed her from the inside. I could only watch in despair as my best friend in the world and woman I loved gradually began to slip through my fingers. Because of my Wife’s cancer we needed a bone marrow transplant, but because of her race the chance of finding a donor was almost impossible. Our chances for a happy life together, to love each other, to one day raise a family, and to dream to do the small normal things that people do each day as a celebration of their love for each other were grim.

Then something remarkable happened…you decided to step forward and through great selflessness gave us another chance. I can only imagine that the choice you made to donate was born out of hope and optimism, and oh how I wish I could show you all the things that have flowed from your choice. To say you have changed our lives forever is nothing if not the most remarkable understatement.

Because of you I have enjoyed my Wife’s smile, her laughter, and a million small moments so precious that I would save them forever. Simply saying “Thank you” for what is the greatest act of selflessness I have ever seen seems too easy and far too small. I aspire to say something greater and more profound, something that carries the weight of everything I feel and care about. Something that celebrates your altruistic spirit and raises you aloft so you can be given the recognition such an exceptional person truly deserves. Without you our world would have come to an end.

I feel a great grief in closing this, and feel my words have been fragile in the face of your overwhelming kindness. I hope that it is enough to say that you have given us not only life but also hope. You are my hero.

I'm undecided as to whether or not this is good enough.