Wednesday, January 30, 2013

Bag Balm to the Rescue

I went to my Catskill oncologist today to have my blood work reviewed (CBC normal) and set up an appointment for next week's round of Vidaza shots. I showed him how awful my skin looks. He repeated what my NYC oncologist says: your new immune system is fighting you and the leukemia. The fight has ramped up considerably in the past 6 months. I guess this means my leukemic cells are trying to reproduce and mount a battle.

I've tried every cream and lotion available, retail and prescription. None of them work for long. My husband suggested I try Bag Balm, an ointment originally used by farmers to soothe overworked cow nipples. It's been marketed for human use for a long time (we used to use it years ago on our hands), but isn't easy to find. After trying several drug stores, my husband found it at Agway, an animal feed store where we buy our dog's food.

I applied the Bag Balm liberally last night before bed. It's a bit greasy since it has a petroleum lanolin base. The only other ingredient is 3% B Hydroxy Quinoline Sulfate. For the first time in weeks, I wasn't itchy as soon as I hit the sheets. My hands, which are covered with small white non-itch but annoying bumps, seemed a little better today. I did a second hand treatment before I went out to do errands, keeping thin gloves on so I wouldn't leave grease marks on my travels.

Who knows whether Bag Balm will be the miracle I want it to be. I'll use it for a week or so and see. At $10 for 10 oz. it's relatively cheap, and if it works, I can probably order the cow size.

Friday, January 25, 2013

3 Years 5 Months

Graft versus host disease is a tricky disease. My second transplant was nearly three and a half years ago. The first signs of cgvh showed up about nine months later. It was no big deal. As time passed, the symptoms increased in number and intensity. I've been treated by three oncologists, all directors of the bone marrow transplant units at their centers. I feel well-cared for.

I used to think that after five years post-transplant, I'd be "cured." My doctor in NYC has begun to hint that that might not be the case. I may be on steroids for life, although I'm going to try a taper next week. I thought the Vidaza injections would be short-term, but now he says I'll be doing them forever, or as long as I can tolerate them, which I seem to be.

It seems that my leukemia cells, which still lurk in my body, are crafty buggers, constantly looking for ways to replicate and kill me. I have to stay ever-vigilant. I just hope some of my symptoms will go away or at least lessen in intensity. If the itching would stop, if I could bend over to trim my toenails, if the edema would go away, I'd feel better day to day.

In the meantime, I lather on the lotions, go to yoga and take Lasix. I'm researching natural ways to get rid of the water, and welcome any ideas.

Thursday, January 17, 2013

Unlight My Fire

I want to crawl out of my skin. Either that or immerse myself in a vat of jellied liquid, as bad as that sounds.

My skin, especially on my arms and lower legs is so flaky, I leave a trail behind me. It's ugly but that's not the problem. The problem is it itches so much I want to be sedated. I have so little skin that it actually hurts when it touches my clothes. Yesterday, after doing a few paint touch-ups necessitated by the move, I took a long bubble bath. It felt really good. I lathered myself with Sarna lotion and felt okay the rest of the day.

The fire ants arrive just after sundown. A nibble here, a nibble there. I apply more lotion. It helps for an hour or so. Doing something physical to take my mind off the itch, sometimes helps. Sitting and reading is not an option.

Before 9 pm, I applied more lotion and put my pajamas on. I had taken my meds at 8 pm, which include a strong drug that's supposed to calm the itch. It seems to be losing effectiveness. I wanted to watch a show I like called Criminal Minds. This episode was going to feature Reid, the genius profiler. I stretched out on the couch and tried to ignore the maddening sensation of wanting to scratch myself. At the first commercial, I called it quits. I took my Ambien and eventually reached the state where there's no itching--sleep, glorious sleep.

Wednesday, January 9, 2013


Thank you Mr. Vonnegut for coining a simple phrase that connotes a frustrating and inescapable circle of circumstances that make you consider going on a rampage.

I take two medications that have recently been deemed "special" (make that expensive). I received a letter announcing this two weeks ago. I called to set up the new system. Monday I got a robot call from CuraScripts saying everything was set up but they were awaiting another piece of information. I didn't call back the number given because I was having my Vidaza shot. Tuesday I got another robot call but was able to call back. A human told me that they were still waiting for the doctor's prescription so they could send me the meds. I called my doctor, and yes, they had received the rx  request Monday and faxed it back right away. I called CuraScripts again and they said to call back later because perhaps it wasn't scanned into the system yet.

The problem is, I'm about to run out of an immune suppressant drug which I wouldn't want to do for obvious reasons. I called my local pharmacy and they said they couldn't fill it because the insurance company wouldn't pay for it. Had I looked in the mirror right then, I'm sure I resembled Munch's "The Scream." The pharmacy suggested I call my insurance company, which I did. After explaining the problem to two representatives, I was granted a one-time dispensation to get the drug at my local pharmacy. Hallelujah.

Talk about jumping through hoops. I'm awaiting reimbursement from the insurance company on claims I submitted in October. Both came back with "problems." I wonder how much profit the insurance companies make from members who just give up. It's only because I'm relentless and healthy enough to pursue these battles. Don't I have enough battles to fight?

And so it goes. 

Sunday, January 6, 2013

Always Something

My latest issue is that I need to have a back molar pulled. It's sitting in my mouth like an empty cup waiting to be filled with hot pain. The dentist said he'd never seen anything like it, in that the root was broken off and I felt nothing. Let's hope it stays that way until my appointment on Thursday.

The dentist also found a blood blister on my gum and seemed concerned about it. My mind immediately flashed to leukemia cutis. He said if it didn't go away in 3 days I should be concerned. It was gone the next day, but not without me contemplating mortality for awhile.

It would be easy to blame my tooth problems (I had another molar pulled a year ago) with my treatment and medication over the past almost 7 years. Up until now, I've never had a tooth extracted; I've never had root canal. Maybe it's just age. Most people my age begin the crumbling process by now.

Tomorrow I start round 4 of Vidaza shots. My counts are all good. I'm still kicking.

Tuesday, January 1, 2013

PJ Wears PJs to Celebrate the New Year

We went to a party last night where we, in our fifties, were among the youngins. We were the poorest people there, most of the party-goers owning at least 2 houses and their own companies. Hors d'oevres and dessert, as well as wine was served in vast quantities. The men talked business and politics; the women chatted about children and tennis. Gun control was a topic I involved myself in, but since we all had the same opinion, the conversation was short.

My son Harry is spending the next semester in Copenhagen. A Danish couple we've known for a long time was at the party and offered to help Harry in any way through their many contacts in the city and around the country. When my daughter spent a semester in Quito, Ecuador, we knew the Ambassador there and suggested she contact her and her husband. Her response was: "Can't I go anywhere where you don't know someone?" Guess not.

The party broke up around 12:30; I was in bed by one. The guys took the dogs and went cross-country skiing a little while ago. I'm still in my pajamas, which I'm considering wearing all day, even though we're driving back to our house later. What's wrong with starting the New Year as a sloth?