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.

 

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.

 

Tired, but well

Chemo was Tuesday. For the first time, no delays and we were out in record time. Our appt. with Dr B was at 8, followed by chemo, and we on our way home by 1:30. We stopped for a much needed and tasty lunch.

When we got home I was restless and didn’t rest like I should have. I am paying the price. I am tired, weak and a bit achy. My taste buds are off and my tongue feels sore and a bit swollen (as usual). But it’s nothing serious and should soon pass.

My next CT will be in about 3 weeks. As long as Taxotere continues to work and the side effects remain minimal, I expect to stay on it. I haven’t asked how long that normally is. But, Dr. B has assured me she is always planning a few steps ahead.

 

Back to the ER

Since Thursday I’d been getting progressively short of breath and having trouble talking. Late Friday afternoon I finally called Dr B’s nurse, Erin. I was told to come in for a chest xray to be sure I didn’t have pneumonia or some type of fluid buildup in my lungs. A PE was another concern. It was late in the day so the ER made the most sense. Carinda from work drove me there. Oddly, someone driving around a blind corner egged her car. Fortunately, it was just one. The guard at the hospital helped her clean it up and no damage was done. It was so strange.

Ken joined me within the hour. Blood tests and a chest xray didn’t give any clues. Next was an ultrasound to check the status of the blood clot in my neck. No significant change was found. Then the usual, at CT. By this time, it was down to a PE. But this wasn’t found either. Since everything serious had been eliminated, I was allowed to go home. The assumptions included: numerous small PE’s (which are not life-threatening), a lingering allergic reaction from Tuesday’s chemo, or maybe bronchitis. My oxygen levels were great – which was very reassuring.

In the meantime, I’ve been resting a lot. I’m feeling a bit better. But I am not sure how much of it is from rest or from actual improvement. My next appointment is Tuesday. If nothing worsens in the meantime, I’ll wait until then.

 

Chemo Day

Today was the first day of my new chemo treatment – my third line. Because I will not be getting a trial drug, I will get chemo just once every 3 weeks. Today was a long day but like many like it, we got through it. In addition to the blood tests, a visit with Dr. B, and the chemo, we squeezed in an ultrasound on my neck. The ultrasound was to better assess my blood clot and the neighboring veins. Results will likely be tomorrow. Aren’t computers great?

I didn’t get a lot of sleep last night because of pain from the clot. Eventually Ken stirred and asked what he could do. He got me a snack to settle my stomach and one of my pain pills. Within 30 minutes I was hard asleep. When the pain pills eventually wore off this afternoon, there was a break in the pain. This is a sign that the clot is noticeably dissolving. It should continue to do so as long as I don’t miss any more injections.

Now I need to brace myself for the likely fatigue and nausea. I should have my hair for about another 4 weeks. There are other side effects but they aren’t as likely. One day at a time.

 

Successful Surgery

My port placement went well. The best part was the drugs. VERY relaxing. The port goes under the skin. Now, when I need an IV or blood test, a needle can be poked through my skin to the port. No more fishing for a vein. My least favorite part of IVs. Here’s a link to see what they look like. http://www.angiodynamics.com/pages/products/smart_port_ct.asp

I’ve sat down to blog many times this past week or so. But, I’ve been too tired or stressed out. I’ve had chest pains and back aches of varying degrees. If I take a pain killer I end up asleep on the couch. Not my preference. The last several days I’ve been waking up early with earaches and headaches. This morning was no different – day 3 of the same headache. But, it’s finally gone. Yeah!

In the middle of all this was the Lung Cancer Walk. I was so excited I woke up early and couldn’t wait to leave for the event. And that was with the time change! It was an amazing experience. So many people showing their support and concern. So many smiles. The goal for donations was blown away. There were so many participants many didn’t get a t-shirt. And, there were special ball caps for survivors with “survivor” embroidered on the back.

I got to meet, Chris, a survivor I’ve known over the phone and the occasional email since August. She joined Team Wheatley and brought in more donations and helped push us into 5th highest earning team.

The low-point was learning of the loss of Linda. She was one of the four walk organizers. She died a few days before the walk. It was good to see so many of her friends and family there in huge numbers.

I remember when I first learned about the walk. It was planned for November 2008. I was struggling through chemo and pneumonia and wondered if I’d make it. Later when it was postponed to March, I thought, yea, I will. I’ll make it. Thank all of you for all your help and for being there with me in body or spirit or both and for getting me there. I couldn’t do this without you!