This is Sheila’s husband, Ken.

I haven’t been to Sheila’s blog in a long time, so I was visiting today and noticed unpublished messages to her from people who have only been reading her blog and obviously weren’t aware that Sheila had passed away.

So I just wanted to let them, and other visitors know that she left us on September 15, 2009. There’s more information on my blog if you need it, but suffice it to say that we miss her laugh, her touch, her counsel, her affection and care.

Love you, Sheila…

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August 16 was the day I was discharged from the hospital. Ken’s sister, Sybie, extended her stay through Saturday to help. I decided to wait to drive until I feel ready. During that time, I had appts,. errands, grocery shopping, and some work to do. We also spent a day for fun so Sybie could see some of the coast and beaches.

Saturday, Sybie got up early and drove herself (she had a rental car) to the airport. There were delays in leaving San Diego with that and the missed connections, Sybie had a very long travel day returning home.

During the week, I stilled struggled with nausea, vomiting, and developed mouth sores from some of the other medications and treatments I’d gotten in the hospital. All of this made eating difficult and weight loss unavoidable.

On August 6 a CT Scan was done on my brain. Before I could switch from Heparin (which requires hospitalization), it was important to know if I had any clots or bleeding in my brain. If so, changing to the longer lasting Lovenox would be too risky. Though this was part of preparing to be released from the hospital.

I was not prepared for what was found – 7 tumors in my brain.

After the shock of the news and all that it meant,  I wanted to know how  do we deal with this. I need chemo for all my other tumors and soon!

The plan is more radiation. 10 treatments for my brain. Chemo would need to wait two MORE weeks. The trial drug seems to have failed me. The standard of care now looked like the better option.

Some of the new tumors in my spine are suspected of the cause of some or most of pain in my back and abdomen. Radiation treatment will be concurrent with the remainder (5) treatments for my brain. It will not delay chemo. It starts on Saturday, August 26th.

I have been ill, exhausted, or busy wrapping up the sale of my business. I was not able to find the physical or mental energy needed to write for some time. I do hope you have found Ken’s Blog. He keeps his current and writes from the heart, while I try to keep up on the basics. His is at kenwheatley.wordpress.com.

I am back in the hospital. I’v e been here since Monday, August 3. I came in for unbearable chest pain that I presumed was a PE. It was. I was put  on Heparin, a blood thinner. The pain from the clots lessened each day and are now mostly gone. But other abdominal and back pain have kept me in the hospital. The pain that remains is from my growing tumors.

I did get into the USC trial on July 29. That was after finishing radiation on the tumor blocking my airway, then a two-week waiting period from the radiation, and my July 24 – 28 hospital stay for pain. Because I was in the hospital, Dr B got me a waiver on the trial for this past week’s appt. until I could participate in the trial.

I’ve gotten though most of this illness without pain until this recent many weeks. I had been led to understand pain was manageable. But I am finding it to be a challenge for me and my doctors. I am tiring now and find it difficult to continue to write . I will try later in the day.

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.