Getting the show on the road – February 2006:

Dr. Modha took over my “case” after this latest diagnosis. He was the Indian man I had met back in September after my second shunt revision. I was told that he was the brain tumor expert at rebound neurosurgical specialists. I found him to be very polite and sincere. If he didn’t know something, he had connections all over the country he would contact to get to the bottom of it. He even had one of his mentors in New York look at my scans so he could get more opinions. I wanted to know if someone could operate on this thing.

The verdict always came back the same, though. No one wanted to touch this thing while it was sitting pretty in my precious and delicate mid brain. Ok, so if we can’t remove it, let’s beat the hell out of it. That’s what I was ready to do.

Dr. Modha needed to rule out some other things, though. This would require about nine vials of cerebral-spinal fluid and a few blood samples. They were looking for every fungus, virus, and tumor marker that they could find to tell them what may have caused this unusual mass. He stuck a needle in my scalp where my shunt was and drained out nine vials of fluid to be tested. It sounds worse than it felt. After he was done, he asked that my family leave the room. He needed to talk to me in private.

Now what? I thought. Dr. Modha said he’d like to test me for HIV, since sometimes these tumors are caused by this virus. I remembered the movie, “It’s my Party,” where the main character is dying of AIDS. In the end, he develops progressive multifocal leukoencephalopathy (PML), which causes two brain lesions. He decides to throw a big party before ending his life. In the movie, he describes his vision as “looking through a tampon.” I was all too familiar with these symptoms.

Of course I was willing to sign whatever papers were necessary to rule this out. It’s amazing what’s involved in this test. Not only does the doctor address you in private, but the person drawing the blood has papers for you to sign your consent. I thought about how awful it would be to be dealing with this brain tumor and find out I had HIV, too. I had never been tested for HIV, but I hadn’t engaged in very much risky behavior. Of course, you always think of a couple situations where “maybe that person wasn’t as safe as I thought at the time.” I’d have to wait a couple days to find out I was HIV negative. Finally, some good news.

Dr. Modha came back the day after he drew the nine vials of CSF out of my shunt. Apparently he needed to repeat the procedure because the wrong vials were used the day before. Oh well. Like I said before, it sounds worse than it actually was. So, nine vials later, we’d finally start getting somewhere.

The results of these tests were all negative. I don’t remember exactly what was tested, but it was looking more like cancer was our culprit here. The next step would be to meet the oncology team. I was ready to get the show on the road.

The first oncologist I saw was Dr. Leslie McAllister at Good Samaritan Hospital in Portland, OR. It was Valentine’s Day in 2006. I was discharged from the hospital rehab unit to go straight to my first oncology appointment. I was doing pretty well physically now. They had put me on corticosteroids in order to decrease the inflammation in my brain. I could walk pretty well now, and even climb stairs.

We sat in Dr. McAllister’s office, waiting for her arrival. I thumbed through some pamphlets about brain tumors and treatments of various types. I could see well enough to read, although I still had a pretty large field cut. I wasn’t scared or depressed. I was just ready to get the show on the road.

Dr. McAllister seemed like a nice woman. She was very professional. She didn’t, however, share my urgency for blasting this thing right away. She was calm, and explained that she needed more tests done before we went in blasting this thing with chemo and radiation. Fair enough, I thought. What now? She wanted me to get an MRI of the whole spine to see if this thing had come from somewhere else. She also wanted me to see a gynecologist to make sure everything checked out normally there.

So, I left her office sort of feeling like I was at a standstill. I was ready to beat the hell out of this thing before it got any worse. Of course it makes more sense to rule everything out, but it’s hard to be patient when you’re the one with the cancer diagnosis. I felt like a walking time bomb.

We decided to put our cancer worries on hold for awhile and join my parents at Beaches. It was just about happy hour time when we arrived back in Vancouver from Portland. To hell with this. I’m going to enjoy my Valentine’s Day with my family. It would be a waiting game now. Dr. McAllister would make her referrals to the appropriate offices, and I would be ready to go when they called me.

For the MRI of the spine, I went across town with my mom to a little building I hadn’t been to before. I think it was a branch of Vancouver Radiologists. At this point I had little hope of going back to work. I was in survival mode. I wondered what I would do for money. Mom and I talked about getting papers filled out for disability and social security. She agreed to get the ball rolling there for me. I still couldn’t see enough to read very well. I would always try to fill out papers when I went to a new office, but would have someone check to see what I missed.

I sat there in that waiting room, hardly able to believe what I was going through. I had a “water leak,” as I talked to my mom about my fears. I had always thought I had everything together, and here I was with no control over my situation. I thought of all the people who were put in my position over the years. I wondered if I had showed enough compassion for them. Now I had to worry about money, too, after being so careful and working to support myself for over 10 years. I used to think when people got into a financial bind that they must have done something really wrong, that they hadn’t prepared somehow. I took a good look at myself that day, and realized that I was in the same bind. I had to go on disability to make it. Did this mean I had done something wrong and not been prepared? How does one prepare for such a situation?

My mother was a strong shoulder for me to cry on right there in the waiting room while waiting to be called back for a long and grueling MRI session. I pulled myself together. Here we go. I hoped they wouldn’t find anything on my spine. I had known a young man when I was growing up who was diagnosed with brain cancer. His was all down his spine, and he barely made it to 25 (his goal age).

The MRI was long and loud, as usual. I think I was in the machine for over an hour. I just closed my eyes and tried to imagine myself somewhere else. A week or so later, I would be sitting at the neurosurgeon’s office, relieved that they hadn’t found anything else. Another culprit ruled out. What a relief.

I still needed to see the gynecologist in order to rule out any chance that the cancer had originated in this area. I saw Dr. Farber in late February of 2006. He was a nice young man. I remember talking about birth control being an issue. My husband and I had been using condoms for the past year or so. This wasn’t really the optimal birth control, and since I would most likely be starting chemotherapy and radiation soon, we decided to explore other options. The last thing I needed was an unplanned pregnancy.

I decided to get an IUD. Usually one has to have had children before getting an IUD, but since these were special circumstances, Dr. Farber agreed to make an exception. At least I wouldn’t have to worry about birth control for five years now. A few tests later, and everything checked out normal with Dr. Farber, as well. Finally, I was getting some good news, and it didn’t seem like I had cancer anywhere in my body except my brain.

Meeting Dr. Kolibaba:

After ruling out everything they could think of thus far, it was decided that I would go to NW cancer specialists for radiation treatment and chemotherapy. Dr. Kolibaba was the medical oncologist I would see. I had no idea what to expect. When she walked into the room, any anxiety I had melted away, as she introduced herself as “Kate.” I thought what a humble woman she must be. Here she’s studied medicine for 10 years plus to earn her title. She had studied at Yale. She was a brilliant woman, and she said so humbly, “Call me Kate.” The second thing she said before getting down to business was how sorry she was that we had to be talking about “this” today. “This” referred to my cancer.

I felt very comfortable with this woman, who physically reminded me of Bette Midler. She was caring and sweet, full of sympathy and wisdom. You could sense that she cared about you. I would later tell her that she was the kind of oncologist who made you almost glad you had cancer. I felt so honored to know a doctor like Dr. KK. Just knowing that doctors like her existed gave me hope for the medical profession.

A quick calculation based on my current height and weight, and we were ready to start my chemo drug, Temodar. The dose came out to be 120mg, which meant I would have to take two different strengths of the medication. It was an oral capsule, though, which meant I wouldn’t have to come to the clinic to get an infusion. More good news.

I took my prescriptions to SWMC outpatient pharmacy. My pharmacy friends informed me that they would have to order the Temodar in. I wasn’t surprised. It’s not really what you would call a fast mover. Dr. KK had also prescribed some Zofran for nausea. I was able to get this medication, even though the insurance would only fill 20 at a time. Dr. KK had warned me about this. She told me that insurance would probably restrict the number of Zofran, and I was to call her for additional samples, not to pay out of pocket. I would have to take chemotherapy every day for at least six weeks. I would need at least 42 tablets of Zofran for premed. I would need more if I had breakthrough nausea. Twenty tablets didn’t make any sense. I could see why people get so angry when they pick up their prescriptions. Oftentimes people take this out on the pharmacy staff when it’s the insurance companies calling all the shots. What makes insurance companies so special? Why do they have this power? It seemed wrong.