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.

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.

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.

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.

Wednesday I had a bronchoscopy. This involves examining my airway with a scope. The reason was to confirm and evaluate the suspected lesion that was related to the clot. This time I was well medicated and went through the entire process smoothly. As hard as it was for both of us, Ken could not be there. He was in New Jersey. But, Dr B felt it had to be done right away.

My sister Kathy took me to the appointment at UCSD in Hillcrest arriving at about 10:30. Like with most of the days Ken and I go to my appointments, it involved a lot of waiting. It was a lot more than expected since I’d been fit into their schedule on very short notice. The wait was 3 hours to begin the procedure. Afterwards, still groggy on drugs, Kathy drove me to the cancer center for my post-chemo injection. It was after 5 when we headed back toward home. Kathy missed an appointment of her own. And because we did not anticipate how much time was needed and did not pre-pay enough, we got a parking ticket  at UCSD Hillcrest. Kathy offered to try fight it. I don’t know how she made out.

The lesion was confirmed. It was small but deep and was formed as chemo killed cancer cells opening up the wound. There was debate over whether or not to go back in to seal it up as best as possible. My clotting rate was evaluated again. Eventually, the decision was to wait – provided the clot did not break off again. My follow-up procedure was postponed indefinitely. Yeah!

Other than routine exams, I get a break until Tuesday the 26th when my next chemo is scheduled. In the meantime… there was lots of catching up to do at work and long hours. By the time I get home each night I have very little energy left.

Wednesday I got stuck in a huge traffic jam. Instead of the normal 40-45 minutes, it took me about 2 hours to get home that evening. Ken is so patient as I rest. Sometimes it helps to get off my feet for several minutes. Often I eventually fall asleep on the couch after dinner. Sometimes, like Wednesday, I surrender earlier and Ken tucks me in. He has many evenings alone reading and working on his emails. He often stays up later than he intends to and doesn’t get enough sleep.

My CT results were great – better than expected. The newer tumors have been reduced by about 50%. The primary one (and its newer “satellite” one) show lots of deterioration. They look like shells with the guts missing. The adjacent lymph node is swollen. But it’s only one. The others looked normal. It’s likely drainage of the dead cancer cells – a very good thing.

My blood counts were high enough to qualify me for chemo today as scheduled. It only ran about an a hour late. But that’s pretty good. It’s very good considering the nurses are now working with a new computer program and have a lot more entries to make.

There is something that might help my nail problems. The Taxotere (chemo) can make finger and toe nails swell and sometimes fall off. It’s called “clubbing” and can be caused by other things, too.

I’m having trouble with just one of my thumbs so far. The treatment involves wearing mittens lined with something like gel-pack or beads that hold cold (when frozen). Wearing them during the infusion can help. There have been clinical trials showing it’s effectiveness. I just have to see if I can get a pair and store them in the freezer at the infusion center while I wait for chemo. I have a few weeks to work on it. They make them for feet, too… if it comes to that.

The only bad news is I’ll going through another bronchoscopy… and soon. I coughed a blood clot yesterday. It may indicate a blood vessel in one of my bronchia has ruptured and may do so again. This can happen as cancer cells adjacent or attached to a vessel are damaged. It can be remedied, sealing it up using a laser. I am dreading the procedure. The last one was truly torture. Just discussing it with Dr B today brought me to tears. I hope to have the procedure done differently and with some sedatives. Sadly, Ken won’t be there to go to battle for me. He’s traveling for work. I will be prepared to walk out if need be and try the another pulmonologist.

Our friend, Steve, stepped in and spent the tedious day with me, picking me up at 8 and getting me home at about 5. We had a late lunch at Island’s before heading back to Ramona. Steve had just returned the evening before from a trip to the east coast. So in addition to having things to catch up on at home, he was suffering from jet lag.

I’ve been enjoying the break from chemo. It’s great having three weeks off between treatments. The side effects have been manageable. The typical nausea, fatigue, and funky taste buds which lessen each day. My fingertips have been extremely tender, but are also getting better.

Today I had my CT scan. Now comes the long wait for the results on Tuesday. That’s when I have my next appointment with Dr B and am scheduled for my next chemo.