Monday, March 30, 2009

Making progress

I met with my oncologist today. My CT scan last Thursday showed improvements:
* The mass on my left adrenal gland is gone
* The pericardial effusion (fluid around my heart) is gone
* The tumor has shrunk some more

The shrinkage was not as much as I had hoped for. The measurements also seem to be dependent on which radiologist looks at them.

Tumor size February 11, 2009 (measured by Dr. O):
* 7.2cm x 3.8cm on the axial projection (side to side & front to back)
* 5 cm coronal measurement (top to bottom)

Tumor size February 11, 2009 (measured by Dr. D):
* 8cm x 4cm on the axial projection
* No coronal measurement given

Tumor size March 26, 2009 (measured by Dr. D):
* 6.7cm x 3cm on the axial projection
* 5.3cm coronal measurement

So just 1cm shrinkage in each axial direction, and no change in the coronal plane. Not nearly as encouraging as my first progress scan.

The type of lymphoma I have often leaves a mass of scar tissue even when all the cancer cells are killed - but 7cm would be a highly unusual amount of scar tissue. I was hoping for enough shrinkage we could possibly say the cancer cells were dead, and I'd only need two more chemo cycles (six total).

But since the tumor is still good-sized, I'll need more treatment after my sixth cycle. We'll do another CT scan: if the tumor has shrunk more, we'll do two more cycles (eight total) and evaluate from there. If it's the same size, we'll talk about other treatment options, probably radiation.

As disappointing as it is to be looking at months more of treatment, I feel so lucky I have a variety of effective treatment options available to me. Just thirty or forty years ago, I would have been dead within a year of diagnosis. So, hooray for effective chemotherapy, and on to cycle five.

Friday, March 27, 2009

Dancing floor

South living room floor

For nearly three weeks, the door from our dining room has opened onto a three foot drop. Yesterday, the floor of what will be our new living room was installed. Excited that there was something solid outside the dining room door, I opened the door and walked out shortly after getting home. "Congratulations on your new dancing floor," says our carpenter.

Sunday, March 22, 2009

EPOCH+R break four: side effect round up

While my bone marrow tolerated the increased dose in cycle three very well, this doesn't appear true for the further dose increases in cycle four (dose increases were for the E,C, and H drugs). Hemoglobin is a component of red blood cells: levels of less than 12 are considered anemic, less than 8 require a blood transfusion. I've been between 9.5 and 10.5 since my first chemo cycle; on Friday my hemoglobin was 8.4. Neutrophils are a kind of white blood cell needed to fight bacterial infections; absolute neutrophil counts (ANC) below 1000 are considered dangerous. My first cycle, I dropped below 1000, but not in cycles two and three. Friday, though, my ANC was 144. I don't think my oncologist will be increasing my dosage for cycle five.

Despite a reduction in dose of vincristine, the O drug, the tingling/numbness in my fingertips came back the Sunday after my fourth round. It's still here a week later. But, it has not spread any further up my fingers, and they don't hurt nearly as easily.

Also on Sunday, I got a tingling sensation at the very top of my breastbone when I ate. With each swallow, the tingling sensation would spread out to a larger area. Not that the tingling was particularly unpleasant, but for some reason I developed an aversion to swallowing, especially liquids. And the underside of my tongue hurt - the pockets where you stick a thermometer. Chewing was fine, but extending my tongue to clean food from the outside of my teeth was extremely painful (so I've been using my fingers to get food out from in between teeth).

On Wednesday, that area at the top of my breastbone hurt all day, especially when taking deep breaths. Wednesday night, by the time I finished dinner, the tingling had spread to my ears. My aversion to swallowing was strong enough I only managed three or four 8-oz glasses for my fluid intake that day. All these symptoms have gradually improved; by Friday only the tongue pain remained. Today (Sunday) my tongue hurts just a little - I can even use it to get food off my teeth again.

I'm guessing all of this is caused by the same kind of nerve damage that is causing the fingertip issues. When I told a nurse about my breastbone pain, she had one of the doctors come talk to me - his best guess was also neuropathy. I think being so bothered by my issues with swallowing has made me not be bothered by the weird sensations in my fingertips. I'm glad everything seems to be resolving fairly quickly. I hope next cycle isn't any worse.

Biopsy payment

When my tumor was biopsied in December, my insurance paid for the procedure at my local hospital, but not for the interpretation of slides done at the University of Iowa (which for some reason came as two separate bills). I called my insurance company, and was told the University of Iowa was out of network. That was discouraging.

I asked my oncologist's office about this, and they said, no, that wasn't right, they would resubmit the bills. A few days later, I got a slip from my insurance company that they were going to pay one of the bills. That was a big step in the right direction.

A few weeks went by with no word on the other bill, so Friday I called my insurance company. The agent was very confident that U of I was out of network, and that bill was not going to be paid. I pointed out the other bill (part of the same biopsy interpretation) that they had paid. No, she said, U of I was out of network, and they hadn't paid that. (!)

We went back and forth a few times, she insisting it hadn't been paid, me insisting it had. On March 3rd it was paid, I told her, find an action on that claim on March 3rd. February 18th, March 2nd... then she found March 3rd. There was silence for a minute. I was really afraid she was going to find something to un-pay it.

Then a light bulb must have gone off. "Did you go to the University of Iowa?" No, my biopsy was done at my local hospital. Only the slides were sent to U of I. Well, that was entirely different. Of course they would pay. She apologized for the trouble they had caused me.

Good news, but how bizarre. I would have thought the thousands of dollars in hospital bills would have clued them off that I was in my local hospital that day. Or that the procedures being billed from U of I would have obviously been done on slides, not an actual person. Considering all the money that passes through their system, health insurance does not seem as with-it as one would hope.


The living room at the back of our house was not part of the original, 90-year old house. First, there was a cistern there. Then a back porch half the width of the house. And later, a living room spanning the entire width of the house. Only, the roof was at a much shallower angle than the rest of the house, and leaked. The previous owner (one of the daughters of the family that had the house built) was elderly and just let it leak, so there's a lot of water damage in that room. The previous owner's sister arranged for the house to be re-roofed before we bought it - but it still leaks there.

We have had that room torn off, and are rebuilding it with a flat roof (and the special membranes that involves) rather than attempt fix a shallow sloping roof that hasn't worked in decades. And while we're at it, we're adding an extra 200 square feet. As of Friday, the foundations are done: South living room foundations

The wall running halfway through the center is the foundations of the old room - beyond that is the new space we're adding. Our contractor demolished half of the old wall before realizing they didn't need to do that.

The progress so far has been really exciting. I'm sure the progress this next week will be even more so, as that room starts to take shape.

Sunday, March 15, 2009


Monday, a contractor started working on our house. Our south living room has roof/water issues, and while fixing those we're expanding the room. Currently, the south wall of the house is gone, along with the floor of that room.

Our porch has no foundation, and has sunk over the 80-year life of the house. At some point, the sinking porch would pull down on the roof enough to damage the rest of the house. So the front porch is now torn off, in preparation for foundations and a rebuild.

About half of our new windows are installed. I was worried I'd miss the old wood windows with the weights, but I've found myself pretty excited with the new ones.

We wanted to do major work on this house from the time we bought it four years ago. Talking and planning for so long, and now it's actually happening. I'm almost giddy.

EPOCH+R, round four

My white blood cell count was good enough in round three, my oncologist increased my dosage again. 20% more of the E,C, and H drugs. I slept more than in previous cycles. The IV anti-nausea medication they give me in the afternoon didn't last the full 24 hours; I took a pill once each morning.

For my steroid taper, I'm trying my 20mg dose in the afternoon Saturday, and then the 10mg dose with dinner Sunday. Last cycle, I took both doses in the morning; I'm hoping by pushing out the schedule I'll get the inflammation to subside sooner. While having any kind of taper helps with the level of pain, having it hurt to touch my torso is annoying even at lower pain levels.

I've had some of the icy/tingly sensations in my lips, but not as bad as last cycle. Yesterday, I had ringing/buzzing in my ears for about an hour when I got up in the morning; I had not had that side effect at all in round three. Otherwise - pretty much the same.

A worrystorm

The Thursday before I started round four of chemo, my fingertips went tingly on me; half-numb, like a dentist's shot wearing off. It hurt to operate the cap on my toothpaste; I ended up washing out the inside of the cap so it went on and off more easily. It hurt to button things; I figured out how to work buttons without using the tips of my fingers. It hurt to open flip-top bottles; I started just unscrewing the lids. All day at work, preparing samples, I started to think I'd really been taking my fingertips too much for granted.

Neuropathy - nerve damage, a common side effect of one of my chemo drugs. It can continue to get worse for months after treatment, affecting the entire hand and foot. Almost all cases are reversible, although it's common for it to take years to heal. I was fairly freaked out. I sent the partner out to the grocery store to by vitamin B6 and B12, which my oncology nurses had recommended if this happened.

It cleared up on Saturday. Sunday and Monday, just my left thumbtip was affected again; all fingers have felt normal since then. That in itself was tremendously reassuring. My doctor reduced the dose of vincristine (oncovin, the O drug) by 25%. I've wondered if I'm now getting less than the optimal cancer-killing dosage, but my worries about nerve damage are basically abated. It feels good not to worry.

Sunday, March 8, 2009

Where I get some of my reading off my chest

Lately I've been doing Google searches on diffuse large B-cell lymphoma. Apparently, this is an active field of study with a number of large trials currently being conducted. It's interesting to read about how, just in the past ten or fifteen years, it was discovered there are at least three sub-types, with my sub-type (primary mediastinal) typically appearing in young women.

When I first started this reading, I thought one of the sub-types was called "bulky". Bulky disease has a poorer prognosis, and I was glad that wasn't the kind I had. Later, I realized that bulky disease is a tumor larger than 10cm. Mine was 13cm: not heartening. Having a pericardial effusion (fluid around the heart) is also associated with a poorer outcome. Shucks.

Still, the primary mediastinal sub-type has a better prognosis than the other sub-types, with most studies 5-10 years ago finding 5-year survival rates of 70-80%. This despite about 75% of patients presenting, like me, with bulky tumors and either pericardial or pleural effusions (fluid around the lungs). And the drug Rituxam has greatly improved the treatment of B-cell cancers: survival rates up 10-20% since it became part of standard treatment. (Unlike normal chemotherapy drugs, which kill rapidly dividing cells, Rituxam kills B-cells.)

With my good response so far, I'm confident I'll have a complete remission with my chemotherapy treatment. Still, it's sobering to know there's a not-insignificant chance of a relapse: if that happened, my chances of surviving 5 years would be less than 50%.

Exactly what my prognosis is I'm not sure. The clinical trials for diffuse large B-cell lymphoma that include Rituxam have not been completed. Even without the precise numbers, though, the general idea is that I have a very good chance of being cured. And a "very good" prognosis sounds good to me.

No-touch light switches

Yesterday, I walked into a restaurant bathroom. The lights came on.

Motion sensors. It startled me, but was neat.

I was a summer intern Argonne National Laboratory; they had all their lights on motion sensors, and it worked really well. Except that if you were doing something sitting still (such as reading), you had to wave your hand in the air every ten minutes or so (to turn the lights back on). Fun times.