Final Entry

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I haven’t been to Sheila’s blog in a long time, so I was visiting today and noticed unpublished messages to her from people who have only been reading her blog and obviously weren’t aware that Sheila had passed away.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

 

Visitors

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.

 

August 6

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.

 

Sorry for being out of touch for so long

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.

 

Thornton Hospital

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.

 

PE

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.

 

Fatigue

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.

 

City of Hope

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.

 

Radiation

The radiation treatments have been easy and quick. It’s completely painless. This morning it felt like I was finally getting a clearer airway.

Last week, Dr B referred me to the City of Hope and another cancer center in the LA area. The idea is to try a clinical trial before going on to the next standard treatment. Gathering my records has been a huge and frustrating chore. They were spread all over the place. When I got a call that there was a cancellation at the City of Hope, I changed my radiation appt. and scrambled to get it all together.

 

Four Weeks

It’s been four weeks since my last chemo. I’ve been working a lot lately and then last week, took time off to join Ken on a work trip to Shanghai. We had a great time. I always enjoy traveling with him. He always sees so much more than I do. He has such a sharp eye and I with all he shares I enjoy a much richer experience. Of course he had to work most of the time. But we were lucky to have all the evenings and an group outing together. A cold and fever put me out of circulation for a day.  It gave me a chance to read and relax. I picked up a book Ken had brought along, Lone Survivor. It’s a fast read about a SEAL teams’ experience in Afghanistan. The cough is still with me.

Monday Ken accompanied me to my routine CT. In the evening we celebrated our 1st wedding anniversary with a special dinner at Mr A’s. It was wonderful to remember our incredible day and all those that shared it with us.

Today we saw Dr B for the results. It was not anything I expected. The Taxotere quit working and my tumors have grown and there are new ones. The main one is about 2″ in diameter. My cough (which started a few days before we left for China) was attributed to the tumor blocking one of my airways. It’s given me a “Darth Vader” sound when breathing. It is leaving me short of breath. I’ve got an inhaler to help. This problem will be treated with radiation. The plan is to shrink it dramatically and hope it will stay small for quite a while. It can then be retreated as needed.

This is only tumor that is practical to treat this way. Chemo treatment is needed for the rest. The problem is which one. I’ve now exhausted 3 of the 6 traditional available treatments. Dr B advises I check into clinical trials available at the City of Hope and USC Norris. I am more likely to be eligible now than if I wait and use the other treatments now. We’ll be using the time while going through radiation treatment to meet with the oncologists and see which, I am eligible for. Then we’ll discuss the choices with Dr B.

I hope it will go quickly. With the tumor growth I’ve had with Taxotere, I don’t like getting no treatment at all for even a short while.

It was such an unexpected setback – and such a big one. For now, Ken and I are too stunned by the news and busy with all the new plans and appointments to be fully hit by it. At times we both struggle not to cry.

Today we’ve already met with a radiologist at the Cancer Center, had a preparation session (for my marker tattoos), and had my first treatment. I have treatments scheduled for the next two weeks – daily except for weekends. It only takes about 20 minutes and there is no pain at all. The most common side effects are  fatigue and, due to the area treated, a sore throat. My cough and shortness of breath will possibly get worse for a few days before it starts to improve.