A tiny update

Tomorrow is the last day of class for me for the semester. I got an email from one of my professors yesterday with a breakdown of my grades and a note. I'm one of only 4 people in the class with an A average, so I don't have to take the final. It's my law class and the news makes me supremely happy since the final is made up of 200 questions spanning topics covered over the entire semester.

As for my other class, I'm a bit concerned since I didn't do so well on the last test. A few of these classes have been cancelled over the last month which has meant cramming twice the material in when we do have class. It's a lot of higher math and my poor chemo addled brain isn't keeping up. I need to get at least a C in the class in order to move to the next section of the same topic next semester. If I don't, I'll fall behind a semester and graduation will get put off.

I've been out of the game for 4 years, so you might imagine my anxiety at having to repeat a class that I had to drop last semester due to health issues. I'd rather eat dirt. My final isn't until May 13, so I plan on spending my days studying, which is why it will be unlikely to read anything further on the blog until after that date.

As for my health, I feel great. I'm back on the treadmill and clothes are fitting a little better as the steroid swelling slowly recedes. I still have close to 30 pounds to lose and it is slowly happening.

One month off steroids

It's been one month since I stopped taking steroids and I can now fully appreciate the difference their disappearance has made. I'm not compelled to continually eat and I'm sleeping through the night. I stopped taking Lasix and Potassium supplements 3 weeks ago. I no longer need to plan my day according to my proximity to a bathroom.

I've lost a kilo (2.2 lbs) since my last check-up at MDA. This is in spite of the fact that I took a month off from the treadmill. My face is thinner. I'm able to climb stairs again. There's a unicorn in the backyard.

Okay, that last sentence isn't true, but there is a vegetable garden and everything in it is still alive. We even have one tiny grape tomato just beginning to take shape. We also have a cut worm infestation bent on destroying our efforts. It's like Green Acres on a very small scale minus Arnold the pig.

Dr. K. had a terrible cold, so she wore a mask and stayed on the other side of the exam room. She told me that my numbers look good and that I don't have to return for another 2 months. Music to my ears. I got to catch up with my APN, Bev, who cracks me up and Katie, a nurse who looked after me during transplant number 2.

In case you're interested, here are the numbers:

WBC: 10.3 (Normal)

RBC: 3.76 (Low)

Hemoglobin: 12.2 (Normal)

Platelets: 379 (Normal)

ANC: 7.5 (High due to the effect of steroids, but coming down.P

My magnesium level is still low, but acceptable. My liver counts are solidly normal. My tacrolimus level is right where the doctor likes it. She said that I might be able to go to a lower dose after my next visit. The rest of my medications remain the same.

Life is good. The cats are good. Chris is good. I can't ask for anything more.

The friends you will make

I've spent a lot of time inside my own head these last two weeks when I wasn't busy with school work. I've been thinking about a few of the contradictions you come to live with after a cancer diagnosis and how they've changed the way I connect with people. I'm unsure of how to interact with people in some social situations thanks to cancer and I'm less tolerant of particular behaviors. I can't hear some one sneeze without feeling the overwhelming need to whip out the Purell.

One of the biggest mysteries of life post cancer diagnosis for me is how I can feel more connected to people I've never met than people I know in real life. I've made plenty of virtual friends since being diagnosed in January 2007. Most are also cancer survivors. I've been able to read their blogs and correspond through emails and twitter. I regularly talk to my friend, PJ, who is stalwart in calling this phone-phobic girl.

We all share a connection through our collective experiences. Sometimes we measure our own progress against each other. Sometimes we look for what we should expect in our own journeys. And mostly, we share in the little victories that remind us we're one day further from that dark day of diagnosis.

I started following Jim and Dori late in 2007. Dori was diagnosed with AML in 2007, a few months after my diagnosis of ALL in the same year. Chris and I checked in on them regularly and we saw a lot of our own story in their writings. It's hard not to start caring about people you've never met when you peek in on their lives every week.

Dori had a matched unrelated donor transplant with a 10/10 HLA match at Vanderbilt and was getting back to living her life and raising her 2 beautiful kids. Last summer, she relapsed and suffered with one hell of a bout of GvHD. She spent 53 days in the hospital. The cancer went into remission. The extreme GvHD acted like a sort of mini-transplant.

2 weeks ago, I read the news that Dori had relapsed again. I never imagined that I would get to meet Jim and Dori since we live so far apart. When I read that they were going to MD Anderson for a second opinion on treatment options the week before I had an appointment to see my transplant doctor, I thought it might be more than a coincidence.

I got to meet Dori in the flesh yesterday while she was receiving chemotherapy. I don't know that I can adequately explain the instant sense of connection you get when you look into the eyes of a fellow survivor. You just know. You speak the same language regardless that you don't share the same disease or experience.

I looked Dori in the eye and recognized her determination and grit. She has her game face on. She's taking notes and asking questions. She's getting ready to kick cancer's ass.

I didn't get a chance to meet Jim because he was driving back from Tennessee, but I got to talk to him on the phone. He reminded me a lot of Chris and I know he's going to be Dori's biggest advocate.

MD Anderson can be a very overwhelming place, especially your first week there. I don't know if our visit helped, but I do know that I'm grateful for the opportunity to talk to another tough chick whose story I've followed for the last 4 years.

Unintended absence

I've been buried under a load of schoolwork and have had 3 tests in the last 2 weeks. It's been brutal. As far as my health is concerned, all is well. I had a check-up with my local oncologist today and he gave me a clean bill of health. My chemistries are normal. My platelets are over 400 and my white blood cell count was 9.5 k/ul. That's the high end of normal. My weight is the same as it was at my last check-up 4 weeks ago, which means that I've lost the 2 pounds I gained right before my last MDA visit. I know that's a little confusing and I apologize.

Dr. B feels that the weight will come off quickly once I hit my stride. I reminded him that it took a year to lose 24 pounds last time. We'll see.

That's all I have to report for now.

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.