March's MDA recap

WBC: 12.6 K/UL (4.0-11.0)

RBC: 3.65 M/UL (4.0-5.50)

HEMOGLOBIN: 13.0 G/DL (12.0-16.0)

PLATELETS: 333 K/UL (140-440)

ANC: 9.52 K/UL (1.70-7.30)

LDH: 547 IU/L (313-618)

ALKALINE PHOSPHATASE: 59 IU/L (38-126)

ALANINE AMINOTRANSFERASE: 12 I/UL (7-56)

I had my monthly visit to MDA and all seems to be well. I was scheduled for blood work, a bone density scan, chest x-ray, complete pulmonary function test, bone marrow aspiration/biopsy, and 3 specialists. As you can see from my blood work, my white blood cell and absolute neutrophil counts are still high due to steroids. My liver is behaving and I am grateful. We are once again friends and I will do everything within my power to keep it this way.

The day was full of pleasant surprises, the first of which being the result of my PFT. My lungs are still showing restrictions which is to be expected given the volatile nature of GvHD. 3 months ago, my lung function was at 66%. This week, I'm at 75%. The pulmonary specialist prescribed a rescue inhaler in addition to the inhaled steroids I already take. When I questioned her on the reasoning, she told me it was only a precaution and that I may never use it. She wants me to have it on hand just in case. Since allergy season is in full swing and I'm already having issues, I should be thankful to have it.

My endocrinologist and I were both pleasantly surprised by the results of my bone density scan. I've gained 9.2% in my spine, and over 5.5% in both hips. I've made gains in all of the areas that were tested. Dr. J. confessed that he was expecting a 3% increase at the very most and was prepared to see a 1% increase. He advised me to keep doing what ever it was that I'd been doing. When I told him about the marathon sessions on the treadmill 5 days a week, he laughed and told me to add in weight training. He was serious, and so I will.

These increases bring me out of the osteopenic danger zone and into the very lowest level of normal. Dr. J. told me that I would never be able to recapture the measurements taken before my very first round of chemotherapy, but that I could come close. He likened any increases to making deposits into the bank. I may have to rely on these one day to keep me from shattering a bone.

I saw my transplant doctor almost immediately after having the bone marrow biopsy, so no preliminary results were available. Full results won't be in for another month. We're hoping for no molecular residual evidence of disease. Since this was my 30 month biopsy, I shouldn't have another for a year. Never say never, though.

Dr. K. is concerned with my weight gain. I picked up a kilo since last I saw her. I have been hitting the treadmill and even went so far as to replace my regular lunch with a high protein, low calorie shake 3 weeks ago. Chris started drinking them a week ago and has already lost 2 pounds. She's undecided as to whether the weight can be attributed entirely to steroids or GvHD of the dermis. My skin is still supple, so she's hoping it's the steroids. To test the theory, she's skipping any more tapers in favor of stopping the methylprednisolone altogether. I have my fingers crossed that I can lose a little weight before I see Dr. K. next month.

If it turns out to be GvHD of the dermis, I'll have to go back on high-dose steroids. Boo.

As a special treat, I got to meet a twitter friend in real life. I met Jody through my friend, Lisa. Not only is she an amazing person, but she's also a cancer survivor. When she heard that I'd be at MDA, she offered to drive in for a meeting. We got to visit for 2 hours, but it didn't seem like nearly enough time. She is just an amazing, caring, gracious soul and I'm so happy Chris and I got to meet her in person.

Chris and I celebrated this weekend by putting in a vegetable garden. This is our first attempt at growing anything edible and we're hopeful. We planted bibb lettuce, mesclun mix, carrots, 2 types of bell peppers, and 3 types of tomatoes. Since my friend, Lisa, asked for pictures, here they are:




Very few people know that I have an obsession with products flogged through infomercials. I am fascinated by them. Lest you think my house is filled with these same items, rest assured, my curiosity remains mostly unfulfilled. When I saw the Topsy Turvy in all of its as-seen-on-TV cheesy glory at the big box DIY store, I had to give it a shot. There are 2 varieties of tomatoes planted in the traditional garden, and a Creole tomato specimen in the upside-down planter. I'll pretend it's a science experiment.

We started 2 trays of herbs from seeds a few weeks ago. They seem to be doing well and may be ready to transplant into bigger pots in about 2 weeks. In case you're curious, we planted: chives, cilantro, marjoram, thyme, rosemary, oregano, sweet basil, parsley, and Thai basil. There's also a tray of snapdragons that we started last week. The sprouts are so tiny, I didn't want to torture you with them.

Chris also set up an irrigation system that I helped put into the garden. This should help shelter the plants from my forgetfulness. We planted containers last weekend, but forgot to take pictures. I'll post them some time next week.

Please Help

I can't say anything about the situation in Japan that hasn't already been said. Our burdens are small in comparison to the depths of agony and magnitude of suffering taking place.

We have a chance to ease the grief of the Japanese people and help them rebuild from this unprecedented disaster.

Please consider making a donation to the Red Cross at the following link.

American Red Cross: Japan Earthquake and Pacific Tsunami

Chris

This and That

Forgive the tardiness of this latest post. My laptop has decided to have a mid-life crisis and insists that it's an overpriced paper-weight, rather than a computer. I'm fairly certain the problem has much to do with the operating system. I'll fool with it some time this week when I feel like banging my head against a wall. I've inherited Chris's laptop, which is rather nice considering how much faster it is than my little work horse.

Very little has changed since I last updated. My weight is still up. I've now gained 24 pounds. When I was on steroids in 2008-2009, I gained 24 pounds. I was only on the blasted pills for 4 months then, so I should be grateful that I haven't gained more this time around. I'm exercising and have modified my diet once again. Last week, I was down 2 pounds. I'm almost convinced that it's time to join a program.

I do have one happy event to report. Last Thursday, I was able to climb 2 flights of stairs without passing out at the top. I've been gearing myself up for this little adventure for weeks. The only thing holding me back was that I knew that I couldn't use the handrail to help me along. There's a valid reason. The stairs in question lead to my 2 classes in PFT Hall. The handrails are regularly cleaned throughout the day by the janitorial staff using the same mop and water that was just used to mop the floor. We've all seen the murky water and gray mop heads go straight from the one task to the next. There's not enough hand sanitizer in the world to tempt me to touch those things on purpose.

I was early for class and there weren't a lot of people around, so I took the chance. Half way up the stairs, I remembered the backpack full of binders and books strapped to me. I managed the extra weight just fine. It's funny for me to think that I can spend 100 minutes on the treadmill without a problem, but actually bearing my own weight 6 inches at a time gives me pause. I'll keep trying. It's the only way to succeed.

Monthly visit with my local

I saw my local hematologist/oncologist last Friday. All is well. I don't have any numbers to post because I didn't see them. Chris was with me and had a look at the computer while we waited. According to him, my white blood cell count is 12 k/ul. That's down from 2 weeks ago and technically, the high end of normal.

Dr. B. said all of my numbers are normal and joked about my medication list looking like it belonged to a little old lady. It really does. I'm still on quite a few drugs.

My hair continues to fall out. It's gotten to the point that I can't cover the thinness with a well placed comb-over. I saw my stylist, Lydia yesterday and artist that she is, she cut it in such a way that there is the illusion of volume. I adore her.

Dr. B. thinks the thinning hair may be due to GvHD. My transplant doctor speculated that it was GvHD as well. I've been using a steroid topical solution on my scalp and have noticed that I'm not losing as much hair. I won't be able to see any new growth for 23 days. Until then, I'll continue in my quest for a certain real estate tycoon's comb-over secrets.

Chris's broken arm continues to heal. He has another appointment with the orthopedic surgeon in 2 weeks. He's getting more range of motion back, and able to do more for himself. Next week, he wants to try driving. I'm not so sure.

Cancer is a Thief

I've spent the last few weeks so caught up in class-work that I haven't had enough brain power to spare for the little things. I haven't read a book for pleasure in ages and I haven't written a word.

My friend, Lisa, recently posted a piece about the crazy things people say to you when you have cancer. It made me start to think of many of the cliches we've all been subjected to when friends and strangers are trying to offer comfort. I don't fault most people. It's hard to know what to say and they often feel compelled to say something. Unfortunately, a multitude of people lack filters and so they say the first thing that comes to mind. I've heard some fairly shocking things and I've gotten some truly hysterical questions. One friend thought a bone marrow transplant involved having all of your blood removed and replaced with healthy blood. I did not laugh as I explained the procedure, but I howled when I was out of earshot.

The one cliche that bothers me most is, "Cancer can be a gift."

Really? If so, I'd like the receipt so that I may return it for something a little more me.

Cancer is a thief.

It siphons away your life and dominates your thoughts and time. Cancer steals your joy and robs your loved ones of their peace of mind. It may slowly creep into your life, or explode in your lap when you're having the best week of your life.

Friends who can't cope with your diagnosis slip and slink away, glad that it's you and not them.

Cancer separates you from your orderly little existence and forces you to fight for what matters. It is a constant companion, even when your body is free of the dirty little mutant cells. The word always finds a way to slither into your thoughts so that you waste precious time and energy on the "what ifs?"

Cancer robs your body. Treatments are toxic and leave a lasting impression on your organs, joints and muscles. You may have scars from surgeries or procedures.

Cancer is not a gift.

For once, it's not me

Chris and I spent the better part of last night at the after-hours clinic in Pairieville. For once, I wasn't the patient. Chris slipped while walking through the living room and fell on his right side, taking most of the impact in his arm and shoulder.

X-rays revealed a longitudinal fracture of the right radius. The clinic nurse wrapped his arm in a splint and gave Chris orders to follow up with an orthopedic surgeon today.

His mom was a total all-star and took time off from work to bring him to his appointment while I was in class.

The doctor informed Chris that the bone in his right forearm had been crushed, but probably wouldn't require surgery. He has to wear a hard splint for several weeks and follow up with physical therapy.

Right now, he's miserable and in pain and unable to work since any rotating motion in his wrist causes the bone fragments to pull apart.

I'll keep every one posted on any new developments.

WBC: 14.9 K/UL (4.0-11.0)

RBC: 3.57 M/UL (4.00-5.50)

Hemoglobin: 12.5 G/DL (12.0-16.0)

Platelets: 368 K/UL (140-440)

ANC: 13.78 K/UL (1.70-7.30)

ALC: 0.68 K/UL (1.00-4.80)

Alkaline Phosphatase: 55 IU/L (38-126)

Alanine Aminotransferase: 18 IU/L (7-56)

LDH: 671 IU/L (331-618)


Where do I begin? For the most part, my blood work is normal. My liver is behaving. My white blood cell and neutrophil counts are still a bit elevated thanks to steroids, but not alarmingly so.

My weight is still up. Dr. K. is unhappy about it. Since I last saw her a month ago, I took it upon myself to modify my diet. I cut back on my daily calorie intake. I increased my water consumption from 2 liters a day to close to 3. I continued to exercise. Monday, I weighed in at 158 pounds. The exact same weight I was a month earlier. My waist is even a bit thicker than it was. Dr. K. asked me to cut fat consumption back even further, then she apologized for having to ask it. I do love my doctor.

It's the steroids. I know that. They cause fat to be deposited differently in the body. In my case, the fat settles around my middle. I have the kind of pot-belly that can regularly be seen during summers in the south when guys let it all hang out at their camps on Lake Maurepas.

Dr. K. cut my steroid dose in half to 4 mg every other day. She also warned me that I could expect to be on this dose for 3-6 months. There are 2 reasons. First: If the steroids are stopped too soon, my immune system could stage another attack on my organs and I'd have to start the high-dose steroid train all over again. I've managed to evade AVN twice, I don't know if I could do it a third time. The second reason for continuing on a low dose for such a long period is thanks in large part to my lazy glands. Your body doesn't start making its own steroids naturally until 1 month after you've stopped taking them. This applies to individuals who've been taking high-dose steroids over a long period. You shouldn't worry about it if you get a dex pack for mono. The course I've been moved on to is like a primer for my adrenal glands. They need to start getting ready to take over. From past experience, I know that I will be lethargic and unmotivated over the next few weeks as my body becomes accustomed to the lower steroid dose. I've already reminded Chris.

I'm still retaining fluid to the point that I can't wear my wedding ring. Dr. K. advised me to move from taking Lasix as needed to taking it every day.

As for the ongoing problem I alluded to in the last blog post, my hair has been falling out for the last 2 months. It's gotten to the point that I have to very strategically style it in order to cover my scalp. Dr. K. wasn't sure if it was due to GvHD or steroids. At the moment, there's nothing I can do about it. The dermatologist who specializes in GvHD wasn't available to see me on Monday. Dr. K.'s team is going to try to get me in next month to see Dr. H.

Overall, I'm well. Classes have kept me really busy, but I'm enjoying the challenge. Chris is busy with work. The cats are occupied with the business of being cats, which I'm sure involves schemes to get more treats and plots to oust the stinky humans from the bed.