A Better Day

Who would think that eating a reasonable sized bowl of cream of wheat and drinking a glass of juice would be cause for celebration? Man. How the mighty have fallen. I’m attaching a photo of myself on the USS Ethan Allen (circa 1968) when I was what Verva calls a “stud muffin” – I’m just about that sleek and racy again but now they say I should try to gain some weight. No one is every happy! I thought I wanted to LOSE weight and now I have to gain again.

We have one more trip to MDA to learn about taking care of the catheter but then we should be able to stay home for a while after that. That’s good because our Volvo has been burning up Hwy 45 driving back and forth almost every day. I think Verva will especially enjoy the rest from that travel. As for me, I’m kind of enjoying the experience of having her drive me around while I just relax and look at everything (read cars) and listen to music. Maybe I don’t really need a Porsche?

Best news – my brother John arrives on Thursday. He said he’s working on his joke repertoire and plans to make me laugh like crazy. He also wants to have some time on my John Deer. I can hardly wait to see him.

Next treatment is 2/9/07.

Lost An Old Friend

In the midst of all this cancer turmoil, the nausea, the driving back and forth to MDA, our old cat, Hector, lost his footing. He was 20 years old, picked out by the girls at the SPCA in Concord as a companion to an abused cat name Poki. We named him Hector because he was so protective of the abused cat. Hector Protector. He moved with us to Texas in 1991 and lost almost every bit of his hair. But after he got used to Texas he kind of took over the street. He caught a squirrel as recently as last year. Since I got sick he seemed to sense that something was different and spent a lot of time lying on my lap. He even jumped up on the bed and laid on me while I was taking a nap and he’d never done that before.

He didn’t mind riding in the truck, liked to look out the window and seemed to like traveling in the fifth wheel and seemed to really enjoy cutting huge farts at night that could drive Verva and me all the way out of the trailer.

We’ll miss him as we miss all our lost animals. He was a good cat.

Post Chemo

Friday was somewhat interesting. We got down to MDA our noon appointment for a long line catheter but didn’t get it in until about 2:30. Afterwards we went across the street and grabbed a bit of lunch (mostly Verva) but I did drink quite a bit of ice water because I was told that later that wouldn't work for me (4-5 days of cold sensitivity).

When we went up to the Infusion Center our neighbors Jeff and Lorraine were there to see us off – how very kind of them. The chemo was pretty uneventful – it took about four hours and the kids came down and took Verva out to dinner. I slept or zoned out – not sure which. It was pretty late when we finished and we had to come back the next morning for hydration so we stayed downtown and Katy and Scott’s. We hadn’t expected that so had no clothes or tooth brushes and Sarah kindly dropped everything and drove up to bring supplies. Scott says we need to pretend Verva’s pregnant and just keep a small bag in the car for such occasions. Hmmmmm. Slept great, dreamed all the symptoms went away and actually seemed to fell better in the morning.

Now I’m a bit whipped (fatigue is to be expected I guess) and a little nauseated but these things should go away soon. Not soon enough as far as I’m concerned! The kids will be by again today and hopefully we’ll laugh enough to make everything much better. We have to return to MDA at 10PM (yikes) tonight to get the 48-hour pump taken off. After this time Verva can do it for me but the timing is a bit inconvenient.

We’re glad to get to this step and to be heading down the road to WELLNESS. (We believe in miracles!)

Pre Chemo Information

Well, all is set to begin chemotherapy this afternoon at 4:30. Prior to that today I have to have a long line catheter inserted for chemo delivery. Looks like another long day at MDA.

The specific chemo treatment consists of Docetaxel, 5-Fluorouracil and Oxaliplatin (D-Fox). The Docetaxel interferes with the cancer cell division, the 5-Fluorouracil (5-FU) interferes with cell metabolism and the Oxaliplatin interferes with the DNA. The last ingredient, Oxaliplatin, is a drug that shown good success on colon and stomach cancer and positive results on esophageal cancer. This is a Clinical Trial and I will be #37. Most the patients in the program have been getting positive results. There are no placebos and all participants get the same cocktail. Everyone at MDA was very encouraging because so far this regimen has had good results and the cancer shrinks and people feel much better – traveling, working, eating normally.

The way it will work for me is on a two week cycle. Today I go in and get the first two ingredients at MDA. We’re not clear but we think it’s one hour of the first one and 2 or 3 hours for the second one. The third one (Oxaliplatin) is fed in with an Ipod-sized metering pump over the next 48 hours. For the first time, we have to go back to MDA to have the pump removed and then they’ll teach me how to unhook it at home. We headed down a 6 month path with a cat scan every 2 months to see how things are working. Next milestone will be the first CAT scan at the end of March.

Side effects are interesting – very sensitive to cold for the first five days – can’t touch or eat anything below room temperature. Hair loss is a maybe – hair thinning is reality. The clinical trail nurse says that a number of the people in the trail take their treatment on the weekend and work the rest of the time. When things settle out we anticipate 12 good days out of 14. We are grounded for the first month to insure everything’s going the way it should.

I’ve been having quite a bit of trouble eating and drinking and so I’ll be getting a couple hydration sessions on Saturday and Monday. If the trouble eating continues I may also get a feeding tube (limited menu selections). The chemo should reduce the size of the tumor that’s causing the problems and, hopefully, things will get back to normal in the eating department.

In the meantime I’ve dropped 20 pounds, love handles are almost gone and I’m about ready for a speedo.

Stay tuned – the next posting will tell you what really happens when the fill your body with all this junk.

Woo Wii !

I was feeling good enough last night to go bowling at my daughter Sarah’s house. Yep, we went upstairs and bowled a couple games on their new Nintendo Wii. Very cool. I bowled a 162 and didn’t even have to wear bowling shoes or breathe second hand smoke. The physics that’s in the programming that makes the pins fly when the ball hits them makes the game spectacular. Standing there and throwing a ball with a controller takes a little getting used to but comes pretty naturally. Katy played tennis and it was like she was getting a workout (and getting beat by some little guys with no arms between their hands and their shoulders). Peter makes tennis look easy.

We finished the last pre-chemo test today – a cat scan at MDA for their baseline. It took about three hours mostly sitting around. We’re getting better organized – backpack with water and juice, books and Sudoku puzzles (I screwed my up – the upcoming enema must have been too distracting).

Your comments on the blog are very comforting and the response from our community of friends is overwhelming. Doctor appointment tomorrow afternoon and chemo will start soon after.

Stay tuned….

A Note From Verva

So many people ask “what can I do to help” and I just wanted to say that you are doing it. The friendship, prayers, love, blog comments, phone calls, letters – every outreach and positive thought help tremendously. Thank you.

As everyone who knows us knows, I am crazy over the top in love with this big guy so you can imagine it has been a really bad couple of weeks. Bob says what’s going on has even affected my cribbage game – he’s managed to skunk me twice lately and that isn’t usual. I’m usually a lot tougher on him when we play so maybe I’m subconsciously taking it easy on him. I keep saying that he shouldn’t get used to it.

MDAnderson yesterday was everything we’d been told it would be. We were greeted at the door with offers of help immediately and when I stopped in the ladies Bob was approached three times by people asking if he needed anything. (He must have been looking lost.) Everywhere we went people were focused on us, as they were on each person who came in front of them. There’s such a sense of being truly “seen” there.

The doctor didn’t offer any miracle cure (man!!!! I wanted that!!). But he made us both feel we have options and that there is hope for lots of good quality time ahead of us. We don’t have a specific treatment schedule yet because they are going through all of the tests with their own people now and will decide on the best approach for Bob – for him specifically not him as a person in a category. There’s such depth of knowledge at MDA. It is very comforting to be there and to know we’re getting the best advice in the world.

Chemo will start possibly as early as this Thursday or Friday.

Our Church

About 3 years ago Verva and I joined the Bay Area Unitarian Universalist Church. We were looking for a community to join in retirement and a place that shared our world views. We found it at BAUUC. Today I went to church for the first time since we found out I had cancer. We were somewhat hesitant because we hadn’t gone anywhere were everybody knew about our challenge. Well, we should not have worried – this is our church home and the people there are our extended family. We felt loved and surrounded with support.

I am the Chairman of the Building Committee and we’re getting ready to start detailed design on a 6000 square ft. addition to the church. Construction should start this summer and be complete next spring. The addition consists of classrooms and a new multiuse room as well as some additional administration space. After the dust settles and our wallets recover, we want to build a new sanctuary. I plan to lead us through both phases.

Someone forwarded these words and we like them:

“One day at a time – piece of cake”.

Busy Day

On Friday we received the results of our PET scan and they confirmed what we already knew. The cancer is in the esophagus, lymph nodes, the junction between my stomach and my esophagus and some on my liver. The good news is that there is no cancer in my bones, brain, lungs or blood.

We received that uplifting news after spending the day chasing biopsy slides, cat scan film and other items requested by MDA. They want the stuff brought in our hot little hands on Monday. We also stopped at the Porsche dealer – that Cayman is really sweet. We got to see Houston traffic at its worse – probably spent 2 hours extra trying to get from one place to the other. That’s why I’m buying a paddle shift automatic.

I plan a quiet day today and church and football on Sunday. I don’t think either of the teams I like will make it though Sunday (Saints, Colts) but one can hope.

Monday we visit MDAnderson at 11:00 and have several appointments and more lab work on Tuesday. Our hope is that by the end of next week, we'll know our treatment plans and begin to settle back down into some kind of a routine.

Have I said lately what a great support my sweetheart, Verva, is? Sainthood might be appropriate.

Some Good News

Thanks to the efforts of our very dear friends we have an appointment with M. D. Anderson on Monday. This quick appointment is the best news we’ve had so far. For those of you who haven’t heard of MDA – it’s the premier cancer treatment center in the U. S. and maybe the world. When we started trying to get an appointment we were told to expect a 3 - 4 week wait while my file was evaluated and an appointment scheduled. We now have an appointment with Dr. Ajani on Monday.

Other good news, other than slightly elevated alcohol content, my blood work came back very good. Apparently there are “tumor markers” when you have a tumor but that was to be expected. There were no signs of any other problems which means the liver is still functioning as it should.

We did the PET scan this morning. I think heated blankets may be the best thing since canned beer. I fell asleep during the glucose injection (you have to wait for an hour for good distribution) and again in the scanner with both arms stretched over my head. When she said we were finished over the speaker, I banged my head into the scanner.

Thanks to my lovely wife, Verva, for all her work in setting all these things up for us. She’s better than heated blankets.

How Did This Happen?

Before I explain all I know about cancer of the esophagus, I’d like to thank all of you who have sent me e-mails and called us. Your words and thoughts are overwhelming (in a good way). Please don’t stop. For the first time since I can remember, the notes in my inbox outnumbered the notes in my junk mail file.

Heartburn. Acid reflux. Barrett’s esophagus. Cancer. Apparently if you have heartburn regularly and/or episodes of acid reflux, it weakens your esophagus into a condition called Barrett’s esophagus. If you have Barrett’s esophagus, you are very susceptible to cancer. Well, I’ve had heartburn off and on but nothing I would have considered a problem – Alka Seltzer or Tums after a big spicy dinner – pretty normal. As to acid reflux, I have had an occasional issue but not frequent – mostly when I’d eaten and drank too much and went to sleep on my back. Acid reflux wakes you from a sound sleep in a most painful manner. But even then I didn’t think it happened frequently enough to constitute a problem worth doing anything about.

Men are more susceptible than women and Hispanic men are at the highest risk. If you suffer from heartburn and/or acid reflux, get an endoscopy exam. An endoscopy is much more pleasant than the one that goes in the other end. It requires no preparation other than skipping breakfast and is painless (they give you a sedative). The key to successful cancer treatment is to catch it early.

PET scan tomorrow. Meeting at church tonight. I still feel good and, if it weren’t so cold outside, I’d go work in the yard. Thanks again for all the e-mails and phone calls.

A Slight Change in Plans

First of all, thanks to all of you for the e-mails and phone calls. It’s your support that will help us pull through this. I am overwhelmed by the responses and filled with emotion.

We have decided to hold off on the chemo treatment for a few days until we get some other opinions. We have an additional scan scheduled for Thursday. It’s called a PET Scan and they inject your blood with something that creates or releases positrons. Pretty spacey and high tech. It’s a much higher resolution scan than the cat scan I had last Friday and will provide the baseline for future treatment. Don’t know what it’ll tell us but at least I’ll know if I have any dogs or cats in there.

On the positive side, I did pick up a brochure for a new Corvette. Who knows it might cheer me up…..

The Hits Just Keep On Coming

Well, this afternoon was the key meeting with the oncologist. We met with Dr. Patel at Kelsey Seybold at 3:20 pm. No good news. The cancer is Stage 4 esophagus cancer. This means it has spread to the top of my stomach and into my liver. Because the cancer is not localized, it cannot be treated by radiation or surgery. Chemotherapy is the only applicable procedure because it treats the whole body.

Barring any new news, we plan on starting chemo at Kelsey Seybold on Friday. We feel that Kelsey has gone out of their way to expedite testing, appointments and paperwork. We feel confident of the doctors and the facilities. We’re relatively sure that the treatment will be the same at any facility including M. D. Anderson.

The chemo schedule will be one treatment every three weeks for 6 months with cat scans to monitor progress every 2 months. At the end of 6 months progress will be evaluated and the next step determined. The doctor was pretty clear that we should not expect a cure but hopefully the chemo will slow down or halt the progress.

It’s a crapshoot but because of my health, my age, my attitude, and your support, we plan on beating the odds.

Place your bets….

Bob

January 15, 2007

January 15, 2007

We talked and emailed many of our friends over the weekend. The love, prayers and support are overwhelming. We’ll get though this with your help. Please don’t hesitate to call or e-mail. The purpose of this blog is to keep us from repeating all the details to everyone all the time. If you want, we’ll still do that so call anyway.

Well, with the help of our daughters and friends we made it though the weekend. Friday night was dinner with Doug and Chris Hammen. We’d originally planned a fancy dinner downtown (post Christmas tradition for us) but changed to a local dinner at the Italian Café and a movie at our house (Little Miss Sunshine). Saturday we had a meeting at the church and the girls brought dinner over – we laughed and tried not to cry. Good evening. Sunday morning Sarah ran half the Houston Marathon and we went down to watch her and cheer her and a lot of our friends to the finish. She set a personal best time of 2 hours and 14 minutes. Not bad for a girl who flew in from Singapore at 1:50 pm the day before.

Forgive me if I talk about things that seem mundane or ordinary. I’m not taking anything for granted from here on out.

Onward to the appointment with the oncologist this afternoon and, hopefully, some facts we can deal with.

Bob

January 11, 2007

On January 10, 2007, I went in for what I thought would be a fairly minor problem (I've had some trouble swallowing since about mid-December) and was scheduled for an endoscopy the next day (the 12th). The doctor said the only way to determine what the blockage was was to look at it. An endoscopy is where they stick a tube down your throat with a camera and some tools in it. They can do a variety of things like take tissue for biopsies, remove stuff that might impede your esophagus, and probably a lot of other things I don't want to know about.

On Thursday, the endoscopy showed a tumor 40 cm down my esophagus. He recognized it as esophageal cancer and took a biopsie sample. He was not optimistic about the results of the biopsie and got me scheduled for a cat scan the next day to determine the extent of the problem.

On Friday, January 12, the cat scan showed some spreading into the rest of my esophagus, some into my stomach and possibly leisions on my liver. The hits just keep on coming.

So here we are on the weekend. We've had the pain of sharing this with all our friends and family without knowing what the prognosis is or what the treatment is. We think the treatment will be radiation, chemo and surgery. We're planning that the cancer can be treated successfully.

Our children have been super. We are lucky that both girls are here in Houston. My family has experience with cancer and are very supportive as well. We have a strong group of friends and a supportive church. Most of all we have each other and we are determined to not let this do more than temporarily interfere with our retirement plans.

Tomorrow, we'll see the Kelsey Seabold oncologist and make appointments for two others - one at M. D. Anderson and one at the Deke Slayton Cancer Center. One thing we know is that it is important to start the treatment soon. Treatment and prognosis tomorrow. Not sure I'm looking forward to it.


All for now, Bob