Keep Calm and Carry On

Looks like I'm going to have a nipplectomy. Well, not the whole nipple, but almost half. When I went to my oncologist today for my monthly check-up, he wanted to see the bump right away. "It has to come off."

He never mentioned the phrase leukemia cutis, I did. I'd had a patch of it three years ago on my back. Never mind that the physical aspects of it were so different from the lesion on my nipple. My doctor thinks it's cgvh but we have to be sure. I'm seeing a dermatological surgeon tomorrow anyway for a consultation on the melanoma on my ankle. Nothing like killing two birds with one stone.

My blood counts are good. I feel good most of the time. Except for pesky reminders of the radiation therapy I had (cataracts and melanomas), I accept my condition as it is now. I deal with it.

"Have you ever had a spinal tap?" asked my doctor. "No," I said. "If it is leukemia cutis, we'll want to infuse you with chemo medication through the spine." Ouch.

I may not know what the bump is for a week or so. I don't think it's coming off tomorrow. In the meantime, I'll keep a stiff upper lip and carry on. 

After the Rant

Laundry Brook is closed today

I hope I haven't made anyone in need of medical attention upset with all my ranting. It was better than taking medication.

Today has been a good day. We drove up to the mountains yesterday and did a little shopping (shoes for Marty, a cheap floor fan, and some odds and ends in Wal-mart). We stopped to see Harry at the Club and dropped off running shorts and trail mix. We arrived at the house around 1 pm and drove to the Welsh Cabin for lunch. The restaurant doesn't open, however, until 3 so we went into town for pizza. I overate and was too bilious to go to yoga

Dinner was delicious: turkey parts roasted on the grill, brown basmati rice and green beans. I made a mock gravy from chicken broth, wine and spices. The only drippings we managed to corral were when we let the turkey rest and started slicing the breast.

I tried to watch the opening ceremonies of the London Olympics. I came in at the part with milkmaids and chimney sweeps. Something like that. I enjoyed the British music spanning 40 years from the '70s to now. I think they left out Pink Floyd but can't be sure. The British humour didn't leave me gasping and hooting, but it was funny, especially Mr. Bean playing the piano. The parade of nations was a low-light in my book. The countries I wanted to see were rushed through at the end of a commercial break. It appealed to me more as a geography lesson than anything else. I think I went to bed after Iceland.


A wet rag has been squeezing itself over us all day. We were outside reading for a while. When I got ready to walk to yoga, wearing sunglasses and a hat, the rag twisted a skoch (a wee amount) and Marty drove me there. The walk home was hot and sunny. Yoga was so wonderful, I felt like I'd just said good morning and there I was saying namaste. 

After lunch I went to my 1 o'clock massage. Lucette forgot about me so I went to the market and came home. She called and apologized. I'd felt really good so a massage, though always nice, was not needed. I can't usually say that.

It's still spritzing outside. We're having BBQ'd ribs, corn and Caesar salad for dinner. The brook is swollen, the color of cream of rust soup topped with curls of creme fraiche. Gag me.

Paying Too Much For Medical Care

I just received a thick packet from BlueCrossBlueShield with a number of Explanations of Benefits. All were generated by a visit I made to my dermatologist several weeks ago for a routine check-up..

Here are the charges:

1.Office visit: $230
2. Surgery: $360
3. Surgery: $1212
4. Pathology: $506
5. Pathology: $534
Total Charged: $2842

I will be billed $519.53 co-insurance; my insurance company paid $2078.49. Presumably lost in space: $243.98.

The appointment took about 30 minutes. My doctor examined me and found a suspicious spot. The nurse came in to ask me questions and explain the procedure. The doctor came in and injected me with lydocaine and took a small skin scraping. This was sent to pathology. The nurse called me two weeks later to say the biopsy showed melanoma and I will need further surgery. My prior post mentions that I will meet the surgeon first (translated: office visit); she will remove the spot (surgery); she will send it to pathology, probably a number of times until it shows clear margins. I estimate this will cost $3450, based on charges incurred until now for said spot.

Folks, that's $6242 to slice a piece of my skin.

Sure, I want to get rid of the cancer but how will I feed myself? 

Aside from what my husband pays for health insurance outright ($6000), we've already paid thousands more in drug co-pays and other charges. I'm applying for financial aid from Memorial Sloan Kettering to forgive over $4500 in charges from outpatient services. I owe the doctors about $2500. Our family deductible kicks in at $7000 which I'm sure we've already topped.

My husband has a good job, and I don't mind paying out-of-pocket what's reasonable. After all, having health insurance has probably saved my life. Two provisions of Obamacare matter here: pre-existing conditions won't leave me in the lurch, starting in 2014;
lifetime payouts can't be limited. I don't know when that one starts.

I should live so long.
 

Too Much Medical Care?

That's the question posed in an article published in yesterday's The New York Times.I'm a bit biased, given my six years of treatment for AML. I think I've had about the right amount of medical care, as costly as it's been.

I've been to three top-notch cancer centers and it's interesting how they differ in terms of how closely they follow you and how many tests they order. At Dana-Farber, my doctor was efficient and didn't spend a lot of time going over every med and symptom. I feel he ordered tests prudently. 

At New York Presbyterian-Cornell Weill, my doctor spent most of her time with me typing into her computer. Her nurse practitioner had already asked me all the relevant questions and examined me. That was wasteful and time-consuming. My doctor recommended photopheresis which is invasive, costly and sucks 10 hours out of your week. Other than leaving me with a nasty scar on my shoulder and scar tissue which impedes movement in my collarbone, it did nothing for my skin. At $2500 per treatment, I couldn't see the point of continuing, but when I asked my doctor, she said I should continue for another three or four months to make it a year. I stopped that day.

At Memorial Sloan Kettering, where I am now, the degree of  medical care runs somewhere in-between. The only thing I can complain about is that in order to have a freckle-sized melanoma removed from my lower shin, I have to first have a consultation with the surgeon, and then schedule the surgery. This extra step seems gratuitous and I hope I won't be charged for it. My dermatologist already biopsied it, so it will be three appointments plus follow-ups.  I already spend so much time on medical care, I do wonder why some doctors seem to want to spend more time than ever on ordering and reviewing tests, and then scheduling seemingly extraneous appointments to deal with the issue. Don't doctors want a life?





  

Suspicious Bump is a Bust

Well my mortal flesh is melting. I'm back in NYC and the temp is 98.8 but feels like 103. I was out all morning and kept the A/C off. I cranked it up to high and put the fan on for good measure. Ahhh.

Yesterday, I went to my internist for a pre-op exam for cataract surgery. I showed her the bump on my nipple and she said I should have it checked out right away. As soon as I finished my appointment with my ophthalmologist later in the day, I called my oncologist who scheduled me for a mammogram and sonogram this morning at 10:30. After much breast squishing and sonogram gel, the radiologist came in, and pronounced me tumor-less. She doesn't know what the bump is (skin thickening?), suggesting I see a dermatologist. I left at 1 pm, significantly cooler and calmer. 

I've always thought the bump was a symptom of skin gvh, just like the huge hard bump I have across my entire belly. I don't mind looking 5 months pregnant and I don't mind benign breast bumps. I don't want my third eye to start bulging though.

Sew?

It's cool today so I thought I'd squeeze into my tiny sewing room on the 2nd floor and stitch the seams of a dress that's a little too big for me. I have a number of projects going. The curtains I've prepared for sewing are neatly folded in a closet, victims of my inability to get my machine to make neat stitches on the fabric I'd purchased for this very room. 

I rummaged through my sewing basket, formerly a Salton bun warmer, to find suitable thread. Then I tried to set up the machine. I wound the bobbin and inserted it. I had a hard time threading the needle, but finally did. My attempts to snake through to bring up the bottom thread met with failure. I got very frustrated, knowing that I was battling poor vision, shaky hands and pudgy fingers. I gave up.

But I didn't give in. I decided to clean out my sewing basket. I have many spools of thread, but for some reason, I have two spools of orange, two red, two forest green, one fuchsia and one burgundy. I guess I'm partial to those colors in clothing and home decor. In addition to needles and pins, there were loose buttons and and various sewing machine implements. When it was empty and I'd tossed bits of fabric, most of the buttons and things I couldn't recognize. I threw away the broken plastic tray that sat inside the basket, replacing it with a two-part bottom of a food container. Thrilling, I know.


Despite my disabilities, I will sew the dress and the curtains. Some day. In the meantime, I admire my reorganized sewing basket.

Living color

 

Feeling Hot Hot Hot

It's been hot here. It's been hot everywhere. It's the top story in the news. New York City had 100-plus readings yesterday. Even here in the country it was above 90 degrees. We didn't get a drop of rain.

While trying to go to sleep last night (no A/C), I thought about the hottest I've ever been in my life. There were many times the temperature soared above 100. Once, it was driving back from Block Island. Another time, it was a Yankees game at the Stadium. When I was a teenager traveling cross country with my family, it hit 127 degrees in Phoenix. The motel pool had an ice machine cranking cubes into the water, which otherwise would've provoked hypothermia in all who swam in it. I spent most of the night in a somewhat air-conditioned room, vomiting from the combination of bad Italian food and relentless heat.

But there was one time I was hotter than I'd ever been in my life. Early in my treatment for AML, my temperature shot up to 105.9 degrees. Fortunately, my white cells had just rebounded and I had gone to the hospital when my fever was a mere 102. My catheter had gotten infected, and my body was roasting my flesh to battle the bacteria. I lay on a cooling blanket all night, with ice packs tucked around me as though I were a fish at the market. The experience was unpleasant to say the least and I really just wanted it to be over.

I doubt I will ever be that hot again. 

Another Day, AnotherMelanoma

The freckle/mole turned out to be evil. The biopsy tested positive for melanoma "in situ." The surgeon's office will contact me to schedule an appointment.

But there's something more worrisome I noticed last week. I felt something on my breast as I was drifting off to sleep. I had a dream that there was a lump that covered the half of my upper lip. I kept feeling my lip the next day, but there was nothing there. A few days later I realized that it wasn't my lip, but on the outer edge of my right nipple. it's quite hard and follows the shape of the nipple, maybe half an inch long and a quarter wide. I just had a mammogram in April. Maybe this is a plugged duct or something having to do with my skin issues.

Have you read the articles about the blood cancer patients in The New York Times? Through connections and gobs of money, they had their genomes mapped to find which one (or more) was responsible for turning on their cancer. An ALL patient survives (so far) and a woman with a rare T-cell skin disease was treated and died a few months later. They said that maybe they'll be able to do this for everybody 10 years from now.


In the meantime, stay away from toxins because they also throw the switch. I'm sure my 16 rounds of chemo and 7 radiation treatments are churning around inside me, a deadly stew waiting to poison me in new and interesting spots. 


Carpe diem!

Sad Sleeping

I went to bed early last night after a very pleasant day which included seeing Harry at his new job at Merriewold Country Club. We took him and his co-worker/friend Matt to dinner in Monticello and were home by 7:30. 

I tried to watch The Time Traveler's Wife with Marty, but it didn't hold my interest. I was tired, so I took my ambien and went up to bed. 

For some reason I became teary and sad. I started reliving my life since that awful day in 2006 when I was told I had leukemia. I focused on every hospitalization,every chemotherapy, every set-back, every small victory and all the anxiety that coursed through my body.

I also thought about how I learned that I was a much-loved person. This was remarkable to me and still is. It made everything bearable, but also more depressing because if I died, these people would feel bad. I owed it to everyone to stay alive.

One trick I learned during my hospitalizations was to mind-travel to Playa Gringo, a beautiful slice of white sandy beach lapped by warm turquoise water reachable only by kayak. I'd only been there once but it's the place I want o return to and build a house perched on the cliff above. I've even designed the house in my mind. The night my heart started beating rapidly (200 beats/minute) and I developed arrhythmia, I had to go to Play Gringa to escape the  scary activity in my room. The doctor on call kept saying I wasn't going to die, but I felt like I might. She told me she was going to infuse a medication that would feel like I'm drinking 100 cups of coffee at once. It felt more like a jolt of electricity straight to the heart and it didn't feel good. Hello Death. They did it a second time, and i drifted off to Playa Gringa once more. 


I survived that incident, just like the doctor said I would. I was probably closer to death years earlier when I'd had a 105.9 fever due to an infection in my catheter. 


Eventually, I fell asleep. Who wants to relive six years of illness? No one. But sometimes the horror pries itself into consciousness and and snuffs out the good things that have happened, are happening and are soon to happen.

Thank You Mr. President

You can say what you want about Obama--that's he's not a US citizen; that he's bad for the economy; that his health-care policies are going to destroy America. For me me and my family, he has: extended unemployment benefits when my husband was out of work for 9 months in 2009 (Thanks George, Cheney, et alia); made Cobra affordable so we could still keep our insurance (hey, I'm alive); eliminated pre-existing conditions as a reason to deny health insurance (hey, I'm alive); allowed coverage for young adults under their parents' policy until they're 26 (my daughter works in Peru for a non-profit that doesn't provide insurance for hospitalization or anything--nice to know that if she were in an accident or got cancer, she could be treated).

Oh dear, the Stock Indices were a lot higher on Friday. 

My husband has health coverage through his employer, a disastrous system that's allowed the cost of health care to skyrocket. He pays approximately 15% of his gross salary for insurance, co-pays and co-insurance. It's possible that next year his insurance won't increase under the new laws that some want to quash. That will be the first time ever that our health costs haven't increased at least 5% annually.

Health care and insurance drives our economy so it's hard to think about cutting that cash flow, but I'm willing to rob Peter to pay Paul if it helps the majority of American in the long run. Even those illegal aliens who pay taxes.