And the Hits Keep Comin' - December 19, 2009

I'm okay. At least that's what I keep telling myself.

We weathered the pneumonia, the edema, the first type of chemo, etc. We’ve continued to muddle through the tests, tests and more tests and were feeling pretty good about things finally starting to look up. Then came this past Thursday.

On Thursday I had some errands to run, people to meet and things to do pretty much most of the day and it started with meeting a group of my former colleagues, all now retirees, for our monthly breakfast to catch up on what's been happening in our lives, so I was out of the house before Pete had awakened. Somewhere in the early afternoon I got a strange text from him asking when I was going to be coming home and mentioning something about a doctor appointment.

I try to keep close track of his scheduled appointments and I didn't recall him having one scheduled but when I texted him back and asked about it he just said "nothing important".

When I did get home a little later, Bruce told me that Pete had gone out and was still out. When he finally got home and I asked him about the doctor appointment he said, "Remember when I mentioned my arm was a little sore and I thought I had just slept on it wrong? Well..." He pulled up his sleeve and showed me his arm, just a little below the elbow joint and the end of the scar where they had removed the mass. The area was all red, swollen and very warm to the touch. He had called his GP in the morning after he got up. They got him in for an early afternoon appointment so that was where he had been.

The doctor said she didn't know what it was or what may have caused it, and she couldn't imagine it being an infection because there was no sign of where any infections could have entered; no scratches, cuts or broken skin. But to be on the safe side, she prescribed an antibiotic (and we wonder why we have "super bacteria" and antibiotic-resistant germs) and told him to just go home and keep an eye on it. Famous last words. That's exactly what the doctor had said when he first found the pea-sized mass in his arm over a year ago.

That didn't sit well with me, so I started bugging him to call his oncologist. Since it was now about 5 PM, he promised he would call first thing in the morning. My stomach was in a knot so I spent the evening and most of the night in front of my computer working on developing salary guides (long story short: I was the president and chief negotiator for my local the last few years before I retired and was helping the union out by working on their new guides for the latest contract).

At 3:30 AM, I decided I had to at least TRY to get some sleep, and since I had pretty much finished the guides, I crawled into bed. I laid there and watched the minutes go by, one-by one, until I couldn't lie there anymore. It was now 5:30 AM.

Pete finally called his oncologist around 10. They told him to go immediately to our local hospital and arranged to have a "wet" sonogram of the affected area. The fear was that it was DVT (deep vein thrombosis) which can release the clot that will move to the lungs and if it does, the result is a pulmonary embolism. Great.

So off to the hospital we went. The "wet" part of the sonogram apparently refers to the fact that the ordering doctor wants the results immediately, as in "before the ink on the report is dry". When the sonogram was completed they told my son to just sit for a moment. A few minutes later the technician walked back into the room, said "the doctor who read the sonogram said it's not DVT and they'll be contacting you because they want to see you". He turned to walk back out of the room and Pete's cell phone rang. It was the oncologist's office. They told him that they made an appointment for him and wanted him up there to see the doctor. It was now about 12:30 and the appointment was for 2:30.

We stopped at the convenience store on the way home and he grabbed a quick sandwich for lunch, ran in the house, ate, and were back in the car heading up to see the oncologist. (Thank goodness we didn't have to go all the way into Manhattan to MSKCC.)

In the meantime, between Wednesday morning when he first noticed the painful, red, swollen area, and Thursday morning, the redness had begun to fade, the swelling started to go down and in its place there was a mass, about pea-sized, on his arm. It was similar in size to the original lump that had started this crazy roller-coaster ride.

Now I was really ready to freak out, but I didn't. We're in with Dr. LaN (another doctor in this practice) and she calls the doctor who had read the sonogram and starts asking more about what they had found. They knew that it was NOT a DVT, but could they tell what it MIGHT be?

She explains to us that because it was not "fluid-filled" that pretty much ruled out a cyst. So that means it may be a lymphoma. When I heard that, my heart jumped into my throat. "May be" are the words I had to focus on, because "may be" also means "may NOT be". In our favor was the fact that this lump just popped up overnight, as it were, and the doctor just didn't know of anything that could appear that fast.

As we sat there and Dr. LaN asked if he had anything else to say he mentioned that he had been having "optic" migraines and plain headaches lately. Now I don't know if you're familiar with an "optic" migraine, but I've had a couple over the years. There generally is no pain involved, and it's not like a migraine headache. It's more like you looked straight at a flashbulb when it went off, and the after-effect of seeing a black spot somewhere in you field of vision with a varying degree of "fireworks" going off in the area outside the spot. It can be mild enough to be a simple annoyance or it can be so dramatic that you can't even walk because you can't see anything BUT the spot and brilliant flashes. Duration, as well, can be short or lengthy.

This news started the doctor asking whether anyone had ever ordered an MRI of his head/brain. The answer was "no". Every scan, x-ray and MRI had been from the jaw line down through the pelvis. So before we left the office they were working on setting up for the MRI of his head ASAP.

Back to the small mass on his arm, the one that may be lymphoma. The only way to identify what it is is with a biopsy. So they began working on setting up a fluoroscopic biopsy as well.

So what does all this do to the start of his 3-day-long-all-day-long chemo treatments scheduled to begin Monday (which is the day after tomorrow at this point in time)? Since time is of the essence in this battle they will proceed as scheduled.

We left the office and a short time after we arrived back home around 5 PM they called with his appointment time for the MRI of 7:30 PM. We ate dinner and he headed over to the hospital for the second time that day. We'll probably get the results when we go in for chemo on Monday.

Finally home from the hospital, he was sitting on the edge of his bed, taking his shoes off, and began grumbling about not seeing why it was so rushed to get these tests done right away. I didn't say it, but what I was thinking was this: If the original doctors, a GP, when he first brought that little pea-sized lump to his attention, or the surgeon to whom the GP sent him when the lump had grown to grape-size, had moved a little faster, had not waited a moment longer, had not simply advised him to "keep an eye on it", and not told him "your insurance won't pay to have it removed because it's only cosmetic"; if they had been a bit more pro-active, he might not be in the position he is in right now.

From the moment I first learned of his diagnosis with soft tissue sarcoma I have been enveloped in a numb kind of feeling that continues even now. From time to time I do break down, but those times are few and far between. Every day I resolve to just put one foot in front of the other, keep moving forward, think positive. And I pray.

As I was typing, Pete came in. He was visiting at his father's this morning and apparently he got a call from the oncologist. There are some abnormalities on the brain MRI. More tests will have to be done.