Moving Along

I had my last Cisplatin infusion on Monday and I'm doing OK. I had some friends visit from the East Coast during an additional infusion of saline solution yesterday and really enjoyed the afternoon. Today and tomorrow will probably be a bit more difficult, buy I'm functioning well enough. I'll spend the afternoon today getting radiation number 12 (out of 28) and another infusion of saline solution. After today, I'll just be going to radiation for about 45 minutes a day and taking some mild chemo in tablet form. By the weekend, I should feel much better.

Good Weekend!

I did better with side effects this week. My cold has run its course. I was able to work out on Friday and Saturday and almost felt normal most of the time. I have one more week of Cistplatin. I spent some time with Dr. Jones on Friday and have a better idea of what to expect from the next 15 sessions of radiation. So far, I don't feel any side effects from radiation. It's early. I will probably start to feel some discomfort in my esophagus in the next two weeks and have some difficulty with digestion and swallowing in my last week. She showed me the pictures that are produced with each session. They are amazing. They are radiating the small tumor on in my esophagus, but are also radiating an area about three inches around the tumor. In addition, they are radiating the lympnodes that are connected to that part of the esophagus.

++++

It was only 3 months ago that Sharon and I celebrated our 40th wedding anniversary. We have always tried to take time out for ourselves, but this was exceptional. We rented our favorite condo in Poipu, Kauai which is about 100 yards from the water. The sound of the surf is loud and the trade winds blow through the living area all day. We read, we walked, we shot pictures, we painted, and just celebrated a great marriage. We have actually been together for 44 years going all the way back to our senior year of high school.

It had been a difficult year because our parents had suffered some difficult health scares.
When we planned the trip, it was difficult to imagine that we would really be able to get away. By November, our parents had all recovered nicely. Everyone was finally feeling better and we were enjoying a moment of total relaxation without a care in the world. It was only 20 days later that we found out that I had cancer to deal with. I'm so grateful we had a moment of peace before all of this started. I think it helped us both get our attitude together more quickly.

Sharon and I have been through a lot of great times and some very difficult times in those 44 years. I can't even begin to describe the comfort that our shared experience brings me as I imagine the challenges of the next few months.

I feel more blessed than ever.

Doin' ok

It's Thursday evening and I'm feeling pretty good. I did better this week with side effects than last. Last week, I didn't feel well on Wednesday and Thursday. This week, I received two liters of saline solution (instead of one) on Tuesday and Wednesday. I also gave in to any wave of bad feeling and just stretched out and went to sleep. I didn't feel great, but I did much better.

I only have one more infusion of Cisplatin next Monday. I will continue with Zoloda on the same days as radiation right until the end, but the side effects are not as intense. I've had 8 radiation treatments and have 16 more to go. The end of this chemo/radiation phase is in sight. Then, I have six weeks of no treatment to get my strength back before surgery around the first week of May.

Feeling light and metallic

I had another nine hour day in the infusion room yesterday. It was my third such day with one more to go next Monday.

I was surrounded by people who are really suffering and I'm almost guilty that I'm not. I feel like a poser. I finished a book, watched Charlie Rose and Jim Lehr, took a nap, wheeled my IV pole down to the cafe and grossed some people out while I sat, pole and all and ate. I was serenaded by an excellent jazz guitar player who lingered to talk for quite awhile. Tolerable day.

It sounds like a spa day, but the objective is to absorb Cysplatin. I get it once a week. Basically, it consists of the metal, Platinum. I'm being infused with Platinum. My value is going up! I never cared much to be a platinum member of anything, but here I am, today, feeling highly valued like a platinum member of some club I shouldn't belong to. I've also lost weight. It's not because I'm not eating. I'm just losing weight. So, I feel light as a feather and metallic after just coming back from a spa that was nightmarish. How weird! Part of the reason I feel so good is that I get a blast of some kind of cortizone that allows me not to feel sick after getting the Cysplatin. The cortizone lasts for about 24 hours. After that I'm depending on Zofran to do the same. So far, that combination has been good until Wednesday am. Then I begin to feel nausea. I can add Compozine to stabilize, but I haven't so far. Probably I will this week.

This new feeling of metallic light reminds me of a photo I took at an art fair in Saucelito, CA last year. An artist did body casts of metal wire and floated them above the tents. They were spectacular. I like these sculptures because I've had a recurring dream that I am running through a field and each bound gets higher and longer. When I get to about 20 feet high, I panic to get my balance and wake myself up with jolt. I feel, today, as if I could actually make those leaps. Then, a trip down the stairs to breakfast leaves my knees weak. Probably I won't try. Maybe in my dreams later today as they infuse me with saline solution to wash the platinum out of me again.

Quiet Weekend

I've enjoyed a quiet weekend in San Carlos. Sharon and I still have chest colds and we decided to take a rest. It was a beautiful weekend. Spring is here! Josh came down from Ashland, OR to visit and it was great to spend some time with him.

I'll continue with chemotherapy tomorrow. The radiation unit is on holiday tomorrow, so I will resume on that treatment on Tuesday. I was pleased to presume that cancer doesn't grow on weekends or holidays. I'm only feeling the symptoms of a cold today and not feeling the side effects of chemo. I now have two weeks down and 3 and a half weeks to go to complete chemo and radiation...but who's counting.

Whew!

The asthma is mostly gone today. I did experience some of the side effects of chemo yesterday and today. As predicted, I encountered all kinds of weird symptoms. I was nauseated, my ears would ring from time to time, I felt lightheaded and then tired. I slept well and felt good this morning but was hit again about 11:00 am for a couple of hours. By this afternoon I felt good again and went off to do some chores. I think I'll be fine for the rest of the weekend. Next week will be even uglier. I can see how this builds week by week.

++++

I don't like it! I felt like one of Vladimir Puton's poison victims. First, I thought I might be in a first trimester morning sickness syndrome. I can't imagine how any woman works during that time. Miserable feeling. Fortunately, I had the distraction of an occasional school bell going off inside my head. By late afternoon, I thought I might have a case of Bird Flu but that was quickly followed by Cholera. Then, I had a great night's sleep and woke up fresh and energetic...only to be brought to my knees by more nausea just before lunch. At some point, I stood up and realized I must only weight about 12 pounds. I felt light as a feather. I recovered and ran errands around town this afternoon as if I was perfectly normal.

The sad fact is that I'm getting these symptoms with about 60% of the chemo that the average person with cancer gets. On top of that, I've had the week off from radiation which took some of the sting out of it. I have a strong feeling that the next several weeks are not going to be good particularly on Wednesdays and Thursdays. It really helped not to fight the symptoms when they occur. Yesterday, I tried to keep going with planned activity despite how I was feeling. Today, I just gave in and relaxed. Today's strategy worked better.

The Air is Clearing

My breathing has been improving since Monday. We decided to hold on radiation this week and to continue with chemo to see if this some part of the treatment is aggravating asthma. So, chemo doesn't seem to cause a problem. I'll go back on radiation next week and see if my breathing gets tight again. Yesterday, Sharon began to get the same asthmatic symptoms that I have. I am beginning to suspect that I have a cold of some sort and that it's going away.

I am very positive and relaxed about the treatments and the future. I can't tell you how much inspiration your expressions of affection, support and inspiration have provided. Thanks so much!

++++

Breathing is important!

Although I didn't have much in the way of typical side effects from radiation and chemo, I did get some asthma that started to build last week and continued to get worse over the weekend. I suspect that one or more of the treatments is causing it. We decided today to hold on radiation this week and just continue with chemo to see if we can isolate what might be triggering asthma.

++++

We went to Pacific Grove for the weekend and I felt better as soon as we arrived. My asthma had become progressively worse by Friday and I raised my inhaler levels to maximum. I think there is a lot of tree pollen in the air that I'm allergic to but I never had a reaction this strong. When I drove near the water, my chest was less tight.

We are converting our garage into a painting/photograpy studio. It's about 500 square feet of open space. It's coming along well. On Sunday, we did a lot of rushing around and drove back to San Jose to see " A Long Day's Journey into Night". Sharon and I had dinner with my brother and sister in law, Joyce and Ed. By the end of dinner I couldn't really talk without coughing. I had to sleep in a chair on Sunday night in order to control the coughing.

I went to have my blood drawn and tested Monday morning at Stanford and then went to the fusion center to talk about the asthma and the relationship with treatments. The nurse started my fluids, which are just a saline solution, and we talked about my situation. She called my radiation oncologist and he said, as he did the week before, that the asthma was not likely to be aggravated by radiation. He said it could be the chemo. She then called my oncologist and he said that it was unlikely to be chemo, but my be radiation. The nurse came back with permission to start chemo.

I refused to take any additional treatment until the two physicians met and discussed what to do. I was at the end of my self medication possibles. If, in fact, the treatments were aggravating my asthma, a little more treatment could mean a trip to the emergency room and a lot of complications. The nurse got back on the phone and the doctors talked. They decided on a recommendation and sent their surrogates to talk with me. They recommended that we drop the radiation this week. We would have taken a week off anyway during the next week or two and, therefore, would not be off schedule. If it was the radiation, I should see some improvement in my breathing by the end of the week. If the chemo was the cause, we might try a lower dose or different medicine. It was a simple and elegant solution decided in 5 minutes. I'm not getting paid for it, but I'm still facilitating my own treatment and recovery every day. In my whole career, I've never seen a system so broken. Every clinic and doctor is a silo with discreet agendas, concerns, points of view, and defences. No one is looking at the my total picture and advocating to get things right. The doctors are brilliant. There is no coherent system from the patient/customer point of view. I can't imagine how much time, money and health is wasted as a result.

I went ahead with chemo infusion today. It's a long process. I was in the chair from 10:00 am to 6:30 pm. In order to compensate for the nauseating effects of Cisplatin, they infused to anti nausea drugs first. One is a form of bedroll and the other is a form of cortisone. Both last about 24 hours in my system. They are both good for allergy related asthma and I improved immediately. I also had a hard time sleeping past 4 am because the cortisone gives me a lot of energy.

When the cortizon and benedryll wear off, we will see what is left of the asthma. I should also have more chemo drugs in my system because this is a slow build process week after week. I may suffer some side effects.

Veins, Muscles and Bones

It's Friday. I have done well this first week. By yesterday, I began to feel a few side effects of the radiation and chemo, but it was pretty mild. I'm looking forward to a weekend without the clinic.

++++

I'm always tempted to take photographs of horses. I think the attraction is the mass of veins muscles and bones that are only thinly veiled by a horses hide. The right light of the late afternoon hits the landscape of a horses body and produces at least four distinct light to dark values on every hill and valley. Compositions form everywhere. You can find a beautiful landscape almost anywhere on a horses body in the right light.

The same is true of a human body. Artists spend a lifetime exploring compositions in sculpture, painting, and drawing the landscape of the human body. The area from the hand to the shoulder is a study in itself. There are interesting hard light bones, softer light veins and even softer light muscles.

I first noticed my own emerging hand to shoulder landscape at about 16 years old. As puberty ended, the veins on the back of my hand started to show. The veins worked there way up my wrist and disappeared into my forearm. My forearm began to develop muscle. The veins emerged again at the white inside of my arm, opposite my elbow and disappeared into developing bicep.

The new landscape of my arms made me want to roll up my long sleeve shirts half way up my elbows and show the world that I was a force to be reckoned with. I warded off bullies with the look of those forearms. They weren't exceptional, but I was no longer a boy. I was accepted on sports teams. I could find dates with girls , many of whom had just shifted there interest from horses to boys.

I was conscious and a little proud of my arms then. I'm still comforted by those same arms even though the landscapes include age spots. Blood lab technicians are also tuned into to the nuances of the hand to shoulder landscape. I must have had a million blood samples taken and every technician, except one, took a studied look at the veins and said, "Wow, this is going to be easy!"
I heard those exact words five times this week as each lab technician surveyed my arms for an easy place to stick an IV.

I had one exception. Monday, I was sitting in a lab chair waiting to hear a "Wow!" and no one was ready to work with me. This lab at Sanford is busy. I noticed a technician who was busier than most. She was overweight, poorly groomed and bustling around talking to everyone and no one at the same time. She was imitating a bad sitcom with attempts at being cute and funny with an outdoor voice. She even paused for the canned laughter that comes in her favorite shows.

The pauses brought no laughter, no eye contact, no visible attention. Everyone else in the lab was doing their best to avoid being the audience she craved. She had a Texas accent and all the body language that goes with that culture. Swagger. Big gestures. All the other technicians were moving around quietly and efficiently. They had no swagger or big gestures. From their strong accents, I gathered that they were recently from China, India, Pakistan, Eastern Europe, Central America and South America.

After a few minutes, I realized that the Texan didn't want to work with me or anyone else. She passed up several up several opportunities to get me started and changed another pillow case instead. A supervisor finally came to her and nudged her my way.

She looked at my arm and sighed. "Oh, this is going to be difficult!", she said. She retrieved some gauze, alcohol, tape and two needles. She wrapped a tourniquet around my upper arm but she didn't twist it tight to make the veins stand out more clearly. She grabbed my wrist and looked at my forearm. She stuck a needle in. It hurt. She probed around trying to get into a vein. It hurt more. She said in frustration, " It blew out on me."

She repeated the whole process two inches farther up my arm. It hurt again. She said "This one blew out, too."She left to get more needles. I had a moment to gather my thoughts. When she returned, I said, "I don't know if you are aware but we have a 'three strikes' law in California." She looked up at me. I continued, "With three offenses, the judge has no choice but to send you to prison for life. Rather than take the chance, why don't you get someone else to try".

She turned around quickly and asked another technician to do my IV.

The new technician looked at the bruises on my arms that were already beginning to show. She rolled her eyes. She tightened the tourniquet. She grabbed my wrist, gently and confidently. She warned me that I would feel a pinch. I never did feel the pinch. The needle was in and taped before I knew it. I said, "Wow, that was good!". She stroked my arm over the bruises and said, through her thick Chinese accent, "You have nice arms".

I relaxed and basked in the moment the way a horse would if you stroked it's shoulder and said something soothing. For a moment, the fluorescent light became sunlight. The hospital green walls became grass green. I thought I felt the slightest fresh breeze touch the right side of my face. The smell of rubbing alchohol and disinfectent disappeared. I closed my eyes and drifted off to better pastures.

OK so far!

As the doctors predicted, I'm not having any immediate side effects from treatment. I'm spending a lot of time at the clinic between the radiation treatment and infusions of additional fluids. I'm working out at the athletic club in the morning and then going to the clinic at 12:30 each day. I'm going to try to stay with that routine.

Day 1...Done

I received my first radiation treatment and first infusion of chemo today. I took most of the day to establish the drill, but it wasn't hard or painful. As expected, I feel no side effects today. There are all sorts of predictions about how I will feel tomorrow and the next day and I just won't know until the time comes.

On Top of the World

We are leaving Pacific Grove today to head back to the Bay Area for a week of treatment. We've had 10 great days to relax and exercise. Yesterday, something my grandson, Baxter, said caught me up short. He was talking with Jordan, our daughter, and said, "I wonder if we are on the bottom of the world, right now, or on the top of the world like we usually are?" Baxter is six years old and still has the ability to see the world from a totally different point of view. I never really thought about that before. I thought about it for a bit. I tried out seeing myself on the bottom of the world. The map of the earth was upside down. My head was facing south. After some soul searching, I decided I was still on top of the world...maybe with a threatening cloud over my head. Clouds have been there before. They have gone away in time.

Treatment starts on Monday

I am confirmed to start both radiation and chemotherapy on Monday as I hoped.

++++

I'm happy to finally get started with treatment on Monday. I'll spend the morning in my first chemotherapy session. Then, I move on to my first radiation session at midday. I'll also establish an ongoing schedule for both.

I feel great! We've had a good rest over the past two weeks and we've been exercising every day. I think I am as ready as you can be both emotionally and physically.