Good Progress!

I had my last radiation treatment on Monday. It wasn't really a tearful goodbye to the technicians, as nice as they are! I felt well enough to drive myself to the clinic. I went shopping for a few pairs of pants and shirts that fit. I dropped a couple of sizes and my old cloths are hanging off me. I don't want to buy too much because I'm not sure what weight I will be at the end of surgery and recovery. I suspect I will weigh less than I do now and that may be another size smaller.

On Monday, I also started a different medication to try to get my irregular hear beat under control. The fist medication we tried last week didn't work. Within an hour of taking the medication on Monday, my heart went into it's normal rhythm and seems to have stayed there. I'll confirm that with a cardiogram this morning. What a relief! I feel so much better just from that. My energy is coming back along with my appetite already. My esophagus still hurts when I eat or drink, but it is subsiding each day. I think I'm going to recover very quickly.

As I look back on the radiation and chemo treatments, I did very well. The asthma problem was unrelated. The heart rate problem was almost certainly related and unusual as a side effect. The expected side effects weren't that severe. The radiologist said that my treatment was very aggressive and that most cancer center's wouldn't even try doing that much.
I have a CT Scan on April 19th in the morning to confirm that there isn't any cancer anywhere. Then, I meet with the surgeon to schedule surgery in May.

I am particularly happy to have taken the most aggressive course of action when I hear the stories about the Elizabeth Edwards and Tony Snow. I realize that no matter how aggressive we have been, I will still have to get scans a few times a year for the rest of my life and every scan will be a drama. I can only hope that a constant reminder of my own mortality will keep me focused on what is important in a way that improves my life. I have seen that dynamic at play already. More on that later.

One more to go!

I've completed 27 radiation treatments with one more to go on Monday. These last three sessions were very small compared to the the others and I'm already beginning to get my strength back. I'm really looking forward to the weekend and finishing on Monday. Then, I should have six pretty good weeks for recovery and building my strength back before surgery. We plan to go to Pacific Grove on Wednesday and stay most of the six weeks before surgery.

I'm doing well!

I had the last big radiation treatment yesterday. I am still able to eat and drink with some difficulty and I'm feel tired quickly, but, other than that, I'm doing very well. I have three more radiation sessions to go, but they are only 25% of my normal dose. So, I should start to recover next week. I've lost at least 20 pounds in the last five weeks and I lost 10 pounds before that. I'm down to the weight I was 40 years ago! I'll need to gain some back before surgery in May because I will lose more with surgery.

Moving Along!

I have only 4 radiation sessions left in the next 4 workdays. So, I'll be done by Monday. So far, I feel good and I'm able to eat and drink. It is a bit painful but not as bad as I expected. I have to take a couple of naps a day. The chemo feels gone from my system and I'm feeling much better as a result. I expect to start to feel really well about a week from Friday.

Unbelievable!

As I said, I didn't sleep much Tuesday night. I woke from a brief nap about 7:00 am Wednesday to a bright eyed and bushy tailed resident and his clipboard. This guy was 100% energy and intelligence. It's hard to take someone like that in the morning.

"We think we know what we are going to do. Don't eat breakfast. We are going to try to restart your heart rhythm with a defibrillator. You will be put to sleep and we will try to shock your heart back to it's natural rhythm." I picture the electric shock images from "One Flew Over the Cuckoo's Nest".

"In order to do that, we need to do an ultrasonic endoscopy so that we can take a closer look at your heart to make sure that there are no blood clots."

"So", I say "tell me how you are going to send a scope down my esophagus after it has just had 22 radiation sessions and is so sore that I can't swallow water without it hurting. Will I be out colder than the handle on that door for this procedure?"

"No", he says, " we need you to be conscious through this test, but we will make you feel real good".

"And what are we going to do tomorrow", I say, "burn holes in my leg with cigarettes? I'm not agreeing to do this procedure until I've heard directly from the cardiologist, the radiation oncologist and the oncologist. I'm counting on you to get all three of them on the phone to hear about your plan."

He loses some of his color and stammers a bit. "Well, we are still talking about it".

He comes back an hour later, when Sharon is with me, and talks about it again as if it's going to happen. Sharon pushes back as hard as I did.

Thre hours later the resident arrives. "Good news", he said, we've decided to take a less invasive approach. We will control this with medication. You'll have to stay for a couple of days of observation."

Then, a woman arrives with her clipboard clutched tightly against her breast. "I have a good deal for you", she says, " a bed has opened up in a really large room".

"How many people are in this very large room?" I ask.

"Four", she answers with great positiveness.

"You want me to move from a double room to a dormitory?" I said. "No thanks. I'll suffer through this very small room ".

"Well, I'll try to keep you here, but we need to place a woman and we like to keep the room same sex", she adds.

"I'm already wearing a Johnnie that looks like a dress, so get me a wig and some lipstick. If she is really sick, she'll never know the difference".

She laughed and walked out.

An hour later a roommate arrives. I can't see her because my privacy curtain is up. I hear a lot of Spanish conversation and someone says that the pain level is an 8 out of 10, There is talk of morphine. Things quiet down an hour later. I get out of bed to take a walk and glance over to see who my new roommate is. I glanced quickly and observe an obese young woman lying face down in her street clothes. On my return, I also notice an arm in a cast pointing in strange directions.

All is quiet for hours.

Then a nurse comes in and says "Hey, you can't do that!"

There is conversation in English. The patient is a guy. His obese girlfriend had been laying on him, like a hen on a nest, in an effort to provide comfort to him....for hours! This is in a single hospital bed! I couldn't even see him except for his broken arm! Anyway, the girlfriend went home. I'm glad the guy was knocked out with morphine!

So, I didn't need a wig and lipstick after all.

My roommate, it turns out is a roofer who fell off a roof three stories up that morning. He is lucky to be alive, but broke his arm badly and did some damage to his pelvis. He was waiting for surgery. He waited three days before a surgeon showed up to tell him that he was scheduled for surgey next Monday!. He had no advocate. He hardly spoke English. He had dozens of visitors, but they all just hung around with their heads down saying almost nothing.

At 4:00 pm my normal heart rhythm returned spontaneously. The medical people saw it as a miracle because the medication doesn't work that fast.

So, everyone, thanks for your prayers, meditations and the good vibes you sent into my universe!

Even though I went back and forth from normal to abnormal heart rhythm the rest of the time in the hospital, everyone relaxed and felt that I could get this under control with some medication and attention.

It's All about the Water

I'm getting some energy back after another adventure last week. I was feeling strange on Tuesday as I went in for an infusion of saline prior to my radiation session. I think I was slightly dehydrated in spite of drinking 2-3 liters a day. Then, I took the maximum am out of asthma medicine which includes steroids. I got jittery. I was stopped in the screening process before hydration was hooked up. After several reads, it was clear that my heart rate was way too high and that I was fibrillating.

They immediately took me by wheel chair to the emergency room in the hospital and I was brought directly into a treatment room. Several very competent people began giving me various drugs to intervene and were successful in bringing my heart rate down but not the fribulation. After about five hours in the emergency room, I was admited to cardiac unit of the hospital. Fortunately, I was given a bed in a two bed unit overlooking the gardens and fountains in front of the hospital.

I was hooked up to a heart monitor and oxygen and propped up in bed. Sharon was with me the whole time and helpful in answering a million questions and making sure that there was good coordination around my care. By the time I was hooked up to all that stuff I began to feel like a patient. As soon as I realized it, I got out of bed, put on some decent pajama bottoms and began walking around with the portable monitor. I got my head around the idea that I wasn't a patient. I was a customer. Once again, I would have to manage the situation. After all, I never felt sick. Why should I allow myself to behave as if I'm in pain?

I came in during the first shift nursing staff hours. They were great people. The second shift brought the second team, which I needed to educate and manage. I was awake through most of the third shift...out of fear! This team was what I imagine the guards to be in a mental institution. Some poor guy came in at 6:00 am, turned on the lights, and tried to get me to sign a document that probably gave the hospital certain rights in case of emergency. His English was so bad that I couldn't understand one word that he said. After three attempts, I turned off the lights and told him to go away. He did.

From now on I'll drink more water.

I'm free!

I'm so happy to see that Jordan did a couple of updates this week while I was unexpectedly confined to the hospital. I was released this morning in time for my 22nd radiation treatment. The clinic hit the panic button on Tuesday morning when they saw that my pulse was suddenly running 165 and was arrhythmic on top of that. So, they sent me to the emergency room instead of radiation. The emergency room did some additional testing and confirmed that I had a problem. I was admitted to Stanford Hospital in the cardiac wing. I felt fine through it all. After several interventions, my normal heart returned for six hours and then slipped back to arrhythmia. They tried several medications and by this morning, things looked more promising. So, I'm home recovering from three nights in the hospital. Those are the facts. The details are a lot more fun to talk about, but I need a night's sleep before I can describe the adventure.

Follow-up

Not much has changed since yesterday's post, although I am told that after a couple of blood transfusions yesterday (to counteract his low blood count which has led to anemia), my father is feeling a bit more energetic today. For periods his heart is back to its typical rhythm, but then becomes irregular again for long stretches. The doctors felt it was important to get back on track with radiation today, despite not knowing the cause of these cardiac issues. We hope to have more answers soon, and we are all anxious for him to return home, although I'm sure he will welcome this more than any of us.

Update on Bob

Back when my father started this blog and was scheduled to have surgery in late January, he asked me to fill in for him here with some updates for you while he was in the hospital. It has occurred to me today that perhaps I should fill in for a little while right now.

When my father went to Stanford yesterday for his treatments, the staff found that his heart rate was unusually high and somewhat irregular. After getting checked out in the emergency room, he was admitted to Stanford yesterday afternoon. I am sure my parents can fill in the details for you, but here is what I can tell you from Chicago. From what I understand he is feeling quite well. He is comfortable, slept well last night, and has been reading and watching TV. His heart was back to a normal rate yesterday evening and overnight, but was high again this morning. It seems he needs medication via IV to keep it under control right now. My parents will be meeting with a cardiologist today. This was not something they had expected as a side effect from radiation or chemotherapy, so it is a bit of a mystery to my parents. My father has been on a lot of asthma medication recently and we know that this makes our hearts race, but the medical staff doesn't feel this accounts for the problem.

One of us will continue to provide updates as we know what is going on. As my father has said, thank you for your support, thoughts, and prayers. Our whole family appreciates it.

Somewhat better

I improved each day over the weekend. The nausea is gone and the medication to control it is on the reserve list. That's a huge relief! I still experienced waves of weirdness. At some point, this morning, I looked out into the garden and saw a fantastic scene. Every color and the light itself was amplified by 25%. It was like moving from black and white to color in "The Wizard of Oz". I blinked. It was still there. I looked away because it was too intense to take in. I thought about the situation a minute and decided that I should just enjoy the moment. I pulled up a chair and enjoyed the show. It was marvelous! Finally it passed and came back as an amplification of my hearing. Every sound was 25% louder. I enjoyed that for a while by turning down the TV. Then, I felt tired and snoozed for 10 minutes. It got to be a game. Throw me something nasty and let me see if I can enjoy it. I won!

By noon, I decided to have a grand day out. Sharon and her sister took me to lunch at the Ritz in Half Moon Bay. I ate my largest meal in the past 10 days. We ate in the tea room that overlooks the ocean. This was the nicest day of the year so far. We saw temperatures in the 80's!

So, I'm ready to get going again tomorrow. A morning blood test along with blood pressure and weight will determine that I am ready to continue treatment. Last week, my blood pressure dropped dangerously low and several other indicators raised eyebrows. I think the better weekend will improve the numbers. We'll see.

Again, thank so much for your constant expressions of love and support. It means the world to me.

Beautiful Saturday Afternoon!

It's been two weeks since the final Cisplatin dose and five days since my last dose of Xeloda. The effects of chemo are beginning to wear off. My ears are only ringing a little. The nausea is mostly gone. The effects of radiation are more apparent. I need a lot of sleep. My esophagus and stomach are slightly sunburned and swallowing, even water, is painful. I have nine sessions of radiation beginning on Monday. So, I'm getting through it.

Whoa, I spoke to soon!

Just after my last post, I began to feel tired, nauseous. I was expecting to feel better, so we drove to Pacific Grove to enjoy the great weather and try to plan the remodel of the house. By the time we arrived on Friday afternoon, I felt horrible. I didn't improve. I had all the effects you can get and I hardly got off the couch. We came back Monday morning and saw the doctor. He was encouraging and thought it would help to stop the second chemo drug as well as the first. They gave me infusions of saline yesterday and today. I feel a little better today. This is the first moment that I could open my laptop and write something.

It's Friday morning. The past two days were uncomfortable, but I'm starting to feel better as the last dose of Cisplatin wears off. I met with the radiologist on Wednesday and an intern yesterday. They claim that I'm doing much better than could be expected to this point. Today's radiation treatment is the halfway point. I will have 14 more radiation days starting on Monday. They anticipate that I should do OK next week, but they warned me that the two following weeks of radiation will bring on fatigue, a loss of appetite, and difficulty swallowing. I'm beginning to feel some irritation in my esophagus from the radiation, but its not bad yet.

++++

The radiation machine has a nickname. Trillium. It's the size of a small car and it resides in a room the size of a garage. I walk in each day and climb onto a plastic mold of my back and head. I put my arms back over my head. I'm looking up and resting comfortably in the mold. Large green arms bring disks the size of a car tire within eight inches of my chest. I can the the reflection of my bare chest in the steel disk in front of me. My chest has fine green laser cross hairs marking the target right below my rib cage. It's an assassin's point of view.

Two technicians work to line up my body. "Give me a three millimeter role to the center", says one. My body moves slightly as they tug the sheet under me. The technicians go away. The machine starts to move quietly and smoothly. Precision. Various green arms bring new devices which quietly take pictures. The technicians appear again and move my hips about 1 inch to the left and disappear.

The radiation arm moves into place on the right side of my body and blasts me for about 2 seconds. It moves over my chest and blasts again for about 6 seconds. Then to my right for 3 seconds. Then underneath me and blast up through my back for another 5 seconds. I feel nothing. It's like getting a long xray.

"OK, you can relax your arms", he says from the safety of the control booth. I'm done.

I've seen the images they take. I can see every bone and organ in my torso. I can see the target areas. I can see the tumor. Even though the tumor is small, they are radiating about 3 inches on either side of it. They are also radiating related lymphnodes to be on the safe side. Amazing!