July 2009


By Friday morning, the abdominal pain I’ve been struggling with became unbearable. Ken brought me to the ER. I was later admitted. The first tests eliminated concern about spinal cord compression. The pain was eventually attributed to the tumors increasing in size in/on my liver and in a vertebrae in my lower back.

The side effects from the pain killers I had been receiving at home added to my pain and problems. Different drugs were tried, they now have the pain under control and the nausea eliminated.

I’ve been told they will discharge me today. Meanwhile, I am trying to get an appointment to start the clinical trial at USC.

After I finished chemo last Wednesday (July 8th), I noticed a pain in my side. By the end of the day the pain was in the center of my chest and I was short of breath. I called Dr B’s nurse case manager. Erin’s the one who listens to all my complaints, concerns, and worries. She checked with Dr B. I needed to get a CT scan. That late in the day, that means a trip to the ER. Ken met me there and brought me dinner. A great sandwich from Submarina with all my favorites.

The CT confirmed a Pulmonary Embolism (PE). It’s a blood clot in one of the pulmonary arteries (in the lung). The ER doctor wanted to admit me. I was concerned about getting out in time for my appointment at USC on Friday. With the admitting process underway, Dr B was reached by phone. She felt I could manage at home. My prescription was changed from once, to twice a day injections with a different dose. I was to return immediately if breathing became more difficult.

Ken and I were both a little nervous about being so far away from the hospital if things got worse. But the ER doctor reassured us and we went home. They offered lots of pain pills, but I decided to go with what I already had on hand.

I was glad to be home with Ken. Thursday I stayed home to rest. Friday we went to USC as planned.

Thursday morning it hit me. Severe fatigue. Everything was a struggle. I was lucky to have enough energy to safely drive to my treatment. Everything was an effort throughout the day. I slept most of the evening and managed to get my schedule out of whack. I’ve been waking at 4am since then. This continued through the weekend. I finally felt my energy returning on Sunday. Tomorrow’s treatment may set me back again. At least there are only 3 remaining. And, it seems to be helping. My breathing gets better each day. The results won’t be checked for 4-6 weeks when the effects are expected to end or peak.

I’m recovering from the pneumonia, but it will take awhile. I’m sure it’s contributed to the fatigue and some of my aches and pains.

Ken and I were up well before 5am and headed to the City of Hope for our 8am appointment. It was a stressful drive. The closer we got to Duarte and 8am, the worse traffic got. And, our Garmin kept losing it’s signal. We ended up on the side of the freeway looking through maps I keep stashed in the trunk of the car. It would have all been worth it if we’d gotten good news.

We were shocked to hear there were no trials at all I was eligible for. We were shocked, angry, and devastated. Why couldn’t we have learned this over the phone? Dr. B sent us there because she did find a good trial. None! The drive home was hard on us both.

But, Dr. B did not give up. She called her colleague (NOT the one I was able to get the appointment with) and she assured her there is a trial. Dr. B also called ahead to her colleague at USC Norris Cancer Center. This should help get an earlier appointment than I was able to get on my own. Now I have to package up all my records again. Of course I have to produce a new set each time. I may get an appointment next week. Then there’s juggling radiation.

I won’t be able to start a new clinical trail until 2 weeks after I complete radiation. I am scheduled for 10 treatments. But, I missed one last week while in ER and I will miss one this week because of the holiday. That means I should finish next Wednesday.