Meet Buster: My Big, Fat Tumor

Kasha, Ruth and I drove to my 2:30 appointment with Dr. Jeffrey Isaacs, my new cancer doctor. It was under 30 minutes to the northeast side of town but the drive left me irritable and sore. I harped at Kasha as we walked up, for not knowing exactly what side of the building to enter.

Inside the office of Southwest Hematology/Oncology I signed in and sat down. A moment later I was back at the desk to get a photo taken and submit my paperwork. A few minutes later I was back up to receive the report that Kasha’s insurance company said I was not insured through them.

Sh*t. Is this really happening? Kasha was flustered. She told the receptionist I was just added to the policy and should be on. The receptionist countered with her initial words: the insurance company said I was not insured through them. Kasha said fine, we’ll pay cash.
“Are you sure? It could be several hundred dollars.”
Yes, cash. We’ll take care of it.

We waited. I glanced around the room to see a half dozen senior couples. No one my age. Two blonde-haired kids played in the center of the room, coloring and chatting to each other. They must have been waiting for a parent.

I was called back after 10 more minutes or so. Kasha and Ruth came along. Weight, temperature, blood pressure… quick statistics measured and then we were seated in Dr. Isaacs office.

“The doctor likes to see his first-time patients in here before going back to the examination room,” his secretary told us.
Ok, not bad. A personal touch. I was hoping for a compassionate doctor and any indication in that direction was a relief. We looked around the room to see photos of two grown children. Medical awards on the walls showed certifications from UC San Francisco and South Africa. Kasha noticed on the wall above me an award for “best doctor” of some sort. 13 of the last 14 years voted top doc by his peers, she said.

The doctor walked quickly into the room, utterly distracted. “I’m looking for something and I’ll be with you in a moment,” he said. He walked out and down the hall, grabbed something and then walked toward me with his hand out. “Hello Morgan,” he said. I said hello and introduced my wife and mother-in-law. He sat down and began looking through my file.

He asked me to explain how it all began. I was relieved to know I would finally be telling this to the right person.

I told him that I had fallen hard on my right hip three years back in July. The pain lasted a few days and was gone. A few months later, hiking in the Grand Canyon, I had a terrible ache in that same area- hip, buttocks, lower back- only on my right. I assumed it was related to the fall. Over the next few months the pain would come back for a few unrelenting days and then disappear. As time went on the pain would return more frequently and last longer.

In July of 2007 I went to UrgentCare to see if the problem was more serious. Urinalysis showed nothing and I was given a prescription for muscle relaxers and an anti-inflammatory. I was also told to get an X-ray taken so they could examine it. I never did go in for the X-ray and just let the pain continue.

All this time I was going to a chiropractor weekly (since December ‘03). The doctor would adjust my spine in relation to where the pain was. Sometimes the adjustment helped, sometimes not. I continued this passive therapy until April of this year. More symptoms were appearing and the pain was spreading. A new hotspot on my back left me reeling on the floor when the pain hit it.

My (then future) in-laws offered to foot the bill so that I could see the doctor and have tests run. At first, nothing. X-rays, urinalysis and finger prodding gave no abnormal results. Dr. Hamilton suggested I could have a CAT scan done but it would be expensive. A week later, Ruth and John agreed to it and before I knew it the results were in and I was being told about my ‘lumps’.

“First of all, let me say that you have been in a tremendous amount of pain,” he told me.

[No sh*t]

“I don’t understand how you were able to endure it for so long,” he continued. “You are taking oxycontin now? What is your dose?”

I had no idea. I turned blankly to Kasha and she said it was filled out on the form the doctor was holding.

“40 milligrams,” he read. “Is that working for you?”

I told him it relieves the pain for about 9-10 hours and then I’ve got to take another pill before the pain sets back in.

“You can double that with no problem,” he told me. “Your large tumor is the size of a small to medium watermelon. Now, I will tell you what we must do.”

He said that I would be admitted to the hospital to begin treatment. I asked if he meant chemotherapy and he said yes. He also explained that my kidney must be examined due to a ureteral dilation that was causing it not to function. It may need to be drained, he told me.

I asked if it was possible to put off the hospital stay, at least until I could take care of some things that were important to me, while I still had mental clarity and strength. I explained I was the founder of an organization that required my help to get it into non-profit status so it could continue to function; that I was also writing a book. I might need a month, I said.

Dr. Isaacs looked at me as though I was retarded. Or at least oblivious to my options. He explained much more damage could be caused in that time. He would like to see me admitted within 24 hours even. But it turned out he would not be my doctor. At least not for the next five weeks while he was on vacation. Dr. Bib{blooblahbleep} would be taking care of me. [I didn't hear what name he said.] The doctor was fully knowledgeable of Ewing’s Sarcoma.

[It was at this point that either the doctor became much more dismissive of me or I -suffering under some hypersenstive delusion- assumed he was. His responses became much less helpful to me and I lost the motivation to keep asking questions until I felt his answers were clear.]

The doctor explained he would not be able to help me until I decided what it was I wanted to do. The first treatment would require a week’s stay in the hospital. I would be given a catheter and the chemotherapy would be administered through it. Future treatments would not be as long. It was the kidney procedure that would increase my stay this time.

[Hold up. A catheter? That is inserted in the penis, right? He's going to inject drugs into my penis!!??]

I had believed I’d become totally dysfunctional as soon as chemotherapy began, and that’s why I wanted to have time to take care of some things. He seemed to be telling me that I could still function and would have plenty of time at home. I was confused. I told him I was willing to go ahead with immediate treatment then, but we would need to make sure our insurance was taken care of first.

We walked to the examination room. Along the way, a staff member was crying at a nearby desk. He approached her and asked what was wrong. She went on to explain to him as Kasha and I stood awkwardly in the hall, waiting for the doctor to tell us where to go. A minute later he directs us into a room and tells me to remove all but my underwear as he waits outside. I take off my clothes and slip on the paper gown sitting on the examination table. He re-enters the room and realizes his stethoscope is missing. A moment later he’s back again, listening to my breathing. He then tells me to lay back on the table while he pushes his fingers into my abdomen.

“You didn’t know you had a tumor?!” he asks incredulously. “You can feel it without problem. What did you think this was?”

I told him how I had gained a lot of weight a few years back. I assumed whatever was there in my belly was just fat. I asked him when he thinks the tumor may have begun growing.

“Probably at the same time you began waking up from the pain!”

I asked if he thought it might have been there longer.

“Isn’t that long enough?!” he asked. The doctor didn’t seem to understand my curiosity. Hell, he didn’t seem to understand people. Or maybe it was just me. Dr. Isaacs made just a few more comments and then walked out the door. Kasha asked me, “What now?” and I told her I think he’s done. We leave.

As we went to the front desk secretary to pay another woman walked up to me and introduced herself as the billing manager, shaking my hand. She said she understood there was an issue with insurance and was sure we would have it fixed before next visit. She told the secretary that we would not be billed this time. It was a moment of compassion that meant a lot to me.

The secretary checked the computer and asked my availability for a bone scan later in the month. Wait, what about the hospital and chemo? No mention of it in Dr. Isaacs’ consultation notes, she told me. I explained that I may be admitted into the hospital within the next few days and so she went back to talk to the doctor. She returned and said Dr. Isaacs believed I had asked to postpone treatment. I told her I had said I would go anyway, as soon as insurance was in place. She went back to talk to the doctor again, and when she returned I had instructions to call the office as soon as I was ready and the hospital visit would be scheduled.

Before I left I was asked to walk down the hall to provide “lab work”. Blood. I sat down and the technician painlessly slipped in a needle. (Left arm, always left if I can help it.) She took vial after vial, and I commented on it. “Almost done,” she smiled. 4 vials later and the needle was out. I walked down the hall, met up with Kasha and Ruth, and got the hell out of there.

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This evening, I was talking to my friend Lance on the phone and told him about some of the comments Dr. Isaacs had made to my questions (such as asking how long the tumor had been there) and that I didn’t feel like the doctor was compassionate or understanding. Lance told me that maybe I should talk to another doctor before going with this one. Cancer Treatment Centers of America has a good reputation, and it could be worth waiting a few extra days to make sure I am comfortable with the doctors who will be helping me.

True. I’m hoping to talk with the doctor referred by Dr. Isaacs tomorrow. If not him, then I keep looking. But not too long. I’m Stage IV. That means the cancer is hopping like crazy and Buster is growing like a mofo. Something’s got to break real soon.