Sorry to keep you all in suspense. Wednesday was an extraordinarily long day in which there were a few surprise procedures and Thursday was a day of recuperation.
My first appointment in Houston was an 11am blood draw. My written instructions were to begin fasting at 7am the day of the appointment. I dutifully finished my sugar free red-bull at 6:45 and fantasized about all things pastry until 11. Unfortunately, the phlebotomist asked me if I'd been fasting and I gave her the details of my breakfast as mentioned previously. She made a face and informed me that my vial labels said I was to have fasted for between 12 and 16 hours. I told her what my instructions had been. She elected to speak to the head phlebotomist.
Phone calls were made and I was lectured by a woman sucking on a large piece of candy. It's hard to take anyone seriously when they're making slurping sounds. The lab said it was up to me. I clung to the fact that I had heeded my instructions and told them to get the blood. I was told yet again that the reading wouldn't be accurate and that it would be a waste. Since I knew what was being tested, I stuck to my guns. 16 vials of blood later, and I was released with a shake of the head.
Noon found me getting a bone density scan to evaluate any further bone loss. The good news is that I've made very small gains overall. 1pm was slated for a bone marrow aspiration. We were ahead of schedule, so Chris played video games while I knitted.
While we were waiting, I was seated next to a young woman and her friend. I'd have to guess they were in their very early twenties. The woman sitting close to me was wearing the kind of face mask available at hardware stores and usually worn to keep dust and debris out. I have to assume that she was wearing it to make her friend, who was obviously undergoing treatment, feel less conspicuous. You really have to love your friends and the lengths they will go to to cheer you up during your worst moments. They spoke loudly of the horrors of bone marrow biopsies and the pain that is inflicted. The patient's voice held a world weary tone that insinuated, been there, done that.
I'll only put a tip-toe onto the soap box for this one. If you're in a room full of people waiting to have similar procedures, the polite thing to do is not broadcast your negative opinion of what is about to happen to everyone. There may have been a few first-timers there who were already nervous and your graphic detail of the exquisite pain they were about to suffer probably didn't help reassure them of the necessity of the procedure.
I didn't chastise the young woman because I realize that we all deal with our circumstances differently. She may have been coping by acting the way she did. A quick glance around the waiting room showed that no one was actively paying attention to her, so I went back knitting. In case you google bone marrow biopsies, or aspirations, and you land at this post, here's my take on the procedure:
The worst part of it is the lidocaine injection. That's it. If you can survive getting numbing shots at the dentist, you will definitely breeze through this. If you're still worried about it, ask for conscious sedation. Your doctor will prescribe you ativan, or give you veracet for anxiety. We all have different thresholds for pain and the unknown. My threshold happens to be high. I have had so many bone marrow biopsies and aspirations that one of the technicians assisting with this one breathlessly asked how many I'd been through upon seeing the dimpled scars on both of my hips. I laughed and told him to count the pockmarks like tree rings. I know that I've had twenty-plus procedures. As for exact numbers, I couldn't tell you with any certainty. I have only had one bad procedure which was performed by a very petite woman who did not have the strength necessary to bore out a decent bone fragment. She eventually got it and I will never forget that day.
There is a strange sucking sensation when the marrow is drawn out. I couldn't do an adequate job of describing it because there are no words descriptive enough. The best I can do is to tell you it's like being touched in a place that never sees the light of day. If the person performing the procedure is on their game, you'll be in and out in less than twenty minutes. My PA was fabulous and was done in fifteen. We chatted the entire time about the lack of minority donors on the bone marrow registry. She is of Vietnamese descent and will be hosting a bone marrow drive late in April. The world would be a better place filled with the kind of understanding she exuded.
Bottom line, when it comes to bone marrow biopsies, you're the boss. If you want sedation, ask for it to be arranged ahead of time. If you're only comfortable with a certain set of individuals doing the procedure, request them by name. Terry is one of my particular favorites, but is in constant demand. She will have you entertained the entire time she's fishing for liquid gold. If something doesn't feel right, say something. There's no need to suffer in silence.
My next appointment was at 1:30 to see my transplant doctor. The Stemcell transplant clinic was nearly standing room only. I think we got in around 2:45pm. I told Dr. K.'s PA about my increased bouts of skin and eye GvHD. She did a visual examination and filled Dr. K. in. Dr. K. came in and did her own examination and discussed my bloodwork numbers with us. For those that are interested, they are as follows:
WBC: 10.7 K/UL
RBC: 3.76 M/UL
HGB: 12.8 G/DL
PLT: 334 K/UL
ANC: 8.06 K/UL
ALC: 1.40 K/UL
AEC: 0.24 K/UL
ALK/PHOS: 235 IU/L
LDH: 569 IU/L
ALA/AMIN: 68 IU/L
I was more or less within normal ranges. My white blood cell count was high for me, but I have a valid explanation. That thing my digestive system does--you know, where it stops moving, was kicking off. My abdomen was swollen and I was on day two of now movement. My AlK/PHOS is still high, normal ranges are 38 IU/L-126 IU/L. Same goes for ALA/AMIN. Normal is 7 IU/L-56 IU/L. I'm so close. They checked my ferritin levels again. This is the amount of iron stored in your liver. I'm at 2939 NG/ML and normal is between 10 NG/ML-291 NG/ML. I'm not sweating it, because I know other patient's whose numbers are ten times worse than mine. Exjade was mentioned and discarded once again. Dr. K. wants to continue to wait and observe it.
My thyroid was checked this go round and what a revelation. The thyroid stimulating hormone registered 6.25 MCU/ML. Normal is 0.50 MCU/ML-5.50 MCU/ML. I heard hypothyroidism for the first time. This may explain the extra few pounds that I can't shake regardless of how hard I work at it. More on this when I talk about the endocrinology visit.
Dr. K. wants to wean me off of tacrolimus. I'm down to 0.5 mg every other day for a month and then nothing. I have to be on the look out for serious GvHD and I'll continue to have blood draws locally to monitor my liver involvement. If anything starts to look funny, I'm back on the horse. Since tacro is going, I don't have to take valtrex, bactrim, actigall, folic acid, magnesium, noxafil, and whatever else I'm forgetting, anymore. I may now do some light gardening and have the extremely occasional taste of alcohol. Chris and I will celebrate this weekend with a medium rare steak and a glass of red wine.
Since I'd like to return to LSU this fall, there was a bit of paperwork that I needed to get Dr. K. to fill out. LSU requires all students to be able to prove that they've been vaccinated against the usual funk. It's that or you must provide an exemption from your doctor. I assumed that I'd get the exemption. I gave Dr. K. the paperwork and she ordered vaccines.
I got seven shots to the arms. SEVEN. Three in my right and four in my left. By the end of the day, I couldn't operate my right arm from the elbow up. I am not kidding. If I wanted to move it away from my body, I had to push it with my left arm and even then, I didn't have a full range of motion. By the time we pulled into our driveway, I couldn't use either arm to pull myself out of the car. Chris had to come around and open the door and wait while I threw myself out. He even had to undress/redress me. It was all out pitiful.
I got in to see the endocrinologist at 4:45pm. The appointment was for 3pm. He had a fabulous bedside manner and the kind of laugh that will stay with you. It was very like my friend Laren's laugh. You'd be able to locate either person in a crowded room by following that joyous outburst.
Here's where things got fun. I have now learned that your actual diagnosis based on the numbers your body provides is really up to the doctor doing the diagnosis. Last go round, I was told that I was osteopenic. Dr. J. informed me that I fell within the normal parameters and that I will be inclined toward osteopenia and osteoporosis. He had test results beginning in 2007 to compare to and informed me that I was very well built where bone density and skeletons are concerned. Be still my beating heart. Apparently, I had enough bone density in reserve to help me through the chemo, etc. He concluded that I would not be placed on any maintenance drugs to slow down bone loss. He wants to have me checked again in a year.
He also informed me that the calcium that I've been taking is probably the culprit behind my constant bouts with constipation and digestive pokiness. He wants me to switch to the chewable calcium supplements since they tend to be more friendly to your colon.
He addressed my TSH level and explained that I'm extremely borderline. He didn't want to add any medications to my regimen since the number is just slightly elevated above normal. I'll have it checked again in three months when I'm next at MDA.
The last thing Dr. J. addressed was my lack of estrogen. I've been post-menopausal since June 2008. My skin and body can attest to the lack of hormones. I am literally shaped like my 92 year old grandmother. The turkey wattle that all of the women on my mom's side of the family develop post-menopause is slowly taking shape under my chin. I am not imagining it, a few PA's have confirmed its existence.
Dr. J. explained the need for hormone therapy to me and went through all of the pros and cons. It all boiled down to the fact that I was 35 and my body expected a certain level of hormones. He went through the studies and the incidence of breast cancer, etc. He explained to me that I could stop it whenever I wanted to based on how I felt. I was so thrilled with the prospect of feeling normal again, I nearly gave him a high-five.
He started me on prempro. The dosage will be adjusted based on how it makes me feel. I took the first pill yesterday. He also prescribed 50,000 IU of vitamin D to be taken once a month. This is because I can't really benefit from direct sunlight thanks to the whole GvHD thing. For those who don't know, your body makes vitamin D with the help of sunlight. It's one tiny pill that's easy to swallow. He also encouraged me to increase my consumption of foods rich in calcium. I'm lactose intolerant, so I'll do the best I can.
We left MDA around 5:45pm and hit up Vietopia for some excellent Vietnamese comfort food. Have I mentioned that I love this place? We were on the road around 7pm and made it home by 12:15 pm. You wouldn't believe it, but 10 minutes from our house, we hit a massive road block on the interstate. We would have been there for hours, save for the fact that Chris elected to follow the lead of a few cars that went off road to get to a feeder street that would take us home. Had we not seen a Camry manage it, I don't thin we would have tried.
To cap all of this off, my dear friend, Tina, was staying with us. She flew in from NYC for jazzfest and would only be with us one night. She got in while we were in Houston and was asleep by the time we got home.
The next day, I awoke with a low grade fever and was vomiting. So much for being able to spend time with a friend. My sorry state was thanks to a few of the vaccines that I'd been given. Chris had to take the day off of work to look after me. I got to actually visit with Tina for maybe an hour in between heavy napping. Chris took her out for lunch and sent her on her way around 2pm.
I slept on and off until the late evening. Chris would wake me to make me drink and take my temperature. As of this morning, I still have a low grade fever. The literature regarding the vaccines stated that this could go on for three days. I've alerted the team at MDA and they don't seem concerned.
I think I've covered everything, but in my present state, I wouldn't be surprised to have missed something.