Saturday, January 31, 2009

News from the dark side of the moon

I figure I ought to report in. Not a fun week but it could be worse. I'm following another blog of a KC man with Esophageal Cancer and he's been in Houston for weeks with post op problems, but he got out of the hospital yesterday and set to go home mid February. Let's say a prayer for Will.

Grace did the treatment center duty yesterday with me. I held her hand for strength. Tell me how that works? I'm the dad and she's holding me up. And it was fine with me. Small blessings that come with stuff like this.

Basically have just been hunkered down for four days. Kay has tried like a warrior to get me to eat but I did very little. I feel better today. Walked a bit just because I know I should, actually because the dog got out of the house so had to go find her. Coincidence? I think not.

I know for some it's hard to leave comments on the blog. Thanks to those of you that have and those that have meant to, both mean a lot. I continue to be in awe of the support. It's like seeing a world that's always been there but not so obvious.

Thursday, January 29, 2009

He's Hangin' In There

It's been a tough week for Jayme, but we hope things will improve after this first week of chemotherapy comes to an end.

On Monday we spent the day at the Cancer Center getting an education about the chemo world. After receiving intravenous anti-nausea medicine and additional fluids, Jayme got the "grandaddy" of chemo, Cisplatin. After that, he was hooked up to a portable infusion pump that will run through tomorrow with his second type of chemo, 5FU. He continues to get radiation at the Cancer Center daily, but at least he doesn't have to sit for hours to get chemo. He now carries a "man bag" around the house which contains the pump and chemo. Much more convenient.

He has experienced nausea and fatigue since Tuesday morning. But, we're hoping those side effects will dissipate over the weekend. He has no appetite and I am having a difficult time talking him into eating. Unfortunately, I am consuming the mashed potatoes he should be eating!

I am currently attending a pre-scheduled training course that runs through Saturday, so my family has been helping Jayme get to his treatments. Grace will get to see part of her dad's new world tomorrow when she takes him for radiation, lab work and the removal of the infusion pump.

FYI- I increased my cell phone minutes, so feel free to call anytime!

Monday, January 26, 2009

Under cover of darkness, left at the front door

I want to send a special shout out to Warren. We got it. We love you.

We can only hope to do something similar some day for another. It meant a lot.

There is a tide in the affairs of men

"There is a tide in the affairs of men, Which, taken at the flood, leads on to fortune; Omitted, all the voyage of their life Is bound in shallows and in miseries."
William Shakespeare, Julius Caesar

We have caught the outgoing tide and are on the move. It's great to get going on this portion of the journey.

Kay is napping. I guess it's exhausting taking care of a cancer patient, getting his first radiation and chemo today. We're glad the ship has set sail and is on out on the open water.

The shortest distance between two points is a straight line but life never moves straight. I had to have a chest x-ray this am to see if my Pic line had moved over the weekend. It hadn't, but it delayed the start of everything two hours and we just barely got all the procedures in today. It's fun to win one. So far, so good.

I was told once that people don't care what you know until they know that you care. I felt like my main doc, Myron, listened to my whining this am. He considered my feelings. We're going to end up doing what he says and he had a good, yet unrehearsed answer for my concerns. Extraordinary, I thought.

Thank you, once again, for your prayers and good wishes. As the benefactor, let me tell you, it has made all the difference in the world. Sometimes I've felt carried by them. Keep up the good work!

Friday, January 23, 2009

Friday Update

Jayme completed his final appointments before treatments start on Monday. He had a pic line placed in his left arm and was also"tatooed" to pinpoint the radiation site on his chest/abdomen. Ready or not, he will start his chemo and radiation Monday morning and he will be there most of the day. I will play the good wife role and hang out with him during chemo.

We have decided to go to the Mayo Clinic for the surgery. I had mentioned in a previous entry that a friend of Dr Baranda's (from KU) is an oncologist at the Mayo clinic and recommended a surgeon up there. We have a good family friend who has family ties at the Mayo and they were able to contact the surgeon, Dr Frank Nichols, and let him know about Jayme. To our total delight, Dr Nichols called Jayme at home this afternoon as he was boarding a plane for a medical conference. He asked Jayme some questions, explained the process and tentative timetable and then said he was very optimistic for Jayme. What an awesome phone call to get on a Friday afternoon.

Jayme has complained to me over the past few years that he was too low on my priority list. He thought he was #17 on my list. I now tell him he's moved up to #1 , so watch out what you wish for!

Wednesday, January 21, 2009

2nd Opinion

Yesterday we saw Dr Baranda, a GI Oncologist at KU Med West. She spent an hour with us and was unbelievably accommodating. She gathered lots of info from Jayme and after processing his story along with all the test results, concluded that this is probably a cancer that started in the stomach and has moved into the esophagus. Jayme has thought that may be a possibility from the beginning. She agreed with the treatment plan that the KC Cancer Center has laid out and thinks it is important to get started asap. Whether the tumor originated in the stomach or esophagus, it is still treated the same.

Dr Baranda also emphasized how important the surgery is and recommended we look at going to the Mayo Clinic in Rochester, MN. She thinks their thoracic surgeons are the best anywhere. While we were in her office, she called another GI Oncologist from the Mayo Clinic and got the name of a surgeon to consider. I will call tomorrow and start the ball rollin'.

So we will spend the next few weeks researching surgeons at both The Mayo Clinic and MD Anderson and then make a decision as to where to travel, which will probably be sometime in April.

Today is my mom's 78th birthday. Several of us gathered at their home tonight for dinner and cake and I know she enjoyed the evening. Although her body has weakened more this past week, her mind, spirit and sense of humor are amazingly as strong as ever. And even in her practically bedbound condition, she makes sure she gets help during the week to make Jayme casseroles and his favorite mashed potatoes so he can maintain his weight. A truly remarkable woman that I dearly love and admire!

Monday, January 19, 2009

The Journey Has Begun

We spent the day at the KC Cancer Center. It started with lab work, followed by a lengthy informational session with a nurse practitioner. She discussed what Jayme may experience during the treatment phase, nutritional needs, medications, etc. The final appointment of the day was with Dr Coster, the radiologist. We were quite impressed. He was direct, yet compassionate, and very detailed while explaining the ins and outs of the radiation treatment. Jayme had one final test, a CAT scan, to intertwine with the PET scan to pinpoint the exact site for radiation. Dr Costner also had us view the PET scan on the computer. Amazing technology.

We are very comfortable and confident with the KC Cancer Center, though will follow through with a 2nd opinion at KU Med tomorrow.

So, as of today, we have a tentative timetable. Chemo and radiation will begin Monday, Jan 26th. He will only have chemo on days 1-4, but radiation 5 days a week for 5 1/2 weeks or 28 sessions. He will have chemo again on days 29-32. After he completes the 5 1/2 weeks, he will take off 4 weeks to rest and prepare for surgery at MD Anderson, hopefully sometime in April.
Clear as mud?

We are hopeful that things will stay on schedule, but know there could be a few minor bumps in the road.

And, as always, many thanks for the prayers and good wishes.

The thing that reveals itself.

A Samurai wrote a book in the 17th century about discipline, called the Book of Five Rings, in which he talks about discovering "the thing that reveals itself" when you pursue a discipline. When you enter a new community, old ways fall away and new sprouts begin to appear. In the 14 days since I was diagnosed with cancer I can see a new person emerging. I have to gain weight instead of trying to lose it; I openly invite others to pray for me now, whereas before I never needed that; I have this new found sense of caring for others that I've never known, solely due to the massive outpouring of love and support sent our way. No matter how long this process lasts, my new self is a cancer survivor, which is a pretty good group of people I've come to find out.

In every discipline there are things that must be done. Disciplines are not passive endeavors. If all you do is read about running marathons, you'll never know what only marathon runners know. It is in the doingness, in the practice and failures and in the sacrifices, that you get to see the thing that reveals itself.

I'm excited about what will be revealed doing what a cancer survivor does. I'm not looking forward to the discomforts but I know there is a pony somewhere in this big pile of manure.

Kay is doing a great job using the blog to communicate what we're doing and I'm so grateful she is willing to do that. Thanks for all your comments. We love 'em and we love all of you .

Friday, January 16, 2009

More Test Results

Jayme had an endoscopic ultrasound today. A long day it was; arrived at Menorah at 10 am and arrived home around 6 pm. Dr Jaffri, a gastroenterologist, performed the test and gave us a pretty good report. It is a large tumor, located at the base of the esophagus, but mainly in the stomach, and, is the size of a baseball. Yes, I said baseball. Wow. However, it does not appear to be in the lymph nodes around the site, but is deep in the tissue. He biopsied one lymph node and it came back benign. This would classify it as a Stage 2, which we all think is good news.

We liked Dr Jaffri. He performs around 700 of these procedures yearly, in fact did three today. He gave Jayme a good prognosis and thinks going to MD Anderson is our best option for a successful surgery.

Jayme's main focus is to consume enough nutrition daily to maintain his weight. Eating is a very time consuming task since swallowing has become so difficult these past weeks. Lots of pasta and ice cream. No more steak or bread.

On Monday we have four appointments at the KC Cancer Center, one of those with the Radiologist, Dr Coster. We will then have a 2nd opinion with Dr Baranda from KU on Tuesday regarding his treatment. Then a final decision will be made on where he will receive chemo and radiation. Jayme spoke with MD Anderson this week and they said most treatment regimens for this type of cancer are standard. There are also "clinical trials" available at various times and we will explore that option with the KU Med doc.

I know I am repeating myself, but please know that the emails, phone calls and prayers have meant so much to us, more than you know! It's a wave we will keep on riding throughout. And after all, if 155 people on a commercial jetliner can crash land on the Hudson River and all survive, then certainly his cancer can be cured. Jayme concurs.

Wednesday, January 14, 2009

Good Report!

Jayme had a PET scan this morning, then we met with Dr Myron, the oncologist to discuss the results. Never did I think that hearing the words "chemo" and "radiation" would make me feel better, but in this case, they did. The cancer is "treatable for a cure." Those were Dr Myron's words. Relief does not begin to describe our feelings.

The tumor which is located at the juncture of the esophagus and stomach is very active, but localized. The PET scan showed it has not traveled beyond that area, and with chemo, radiation and subsequent surgery, this thing can be eradicated. Jayme will have an endoscopy ultrasound on Friday to see how deep into the tissue and muscle it has gone, but at least now we know he has a shot. That's all we wanted, a chance to beat this thing.

He will have a second opinion next week as far as treatment, but it appears he will have five weeks of radiation and chemo, then off for four weeks, followed by surgery to resect the esophagus/stomach. The plan is to have the surgery at MD Anderson Cancer Center in Houston.

Many, many heartfelt thanks for all the emails, phone calls, prayers, positive thoughts, etc. We both know it has helped and will continue to help us fight this disease. We know the next several months will be rough, but we are up for the challenge and ready to fight this together.

Love to all our family and friends. You have made such a difference in our lives.

Monday, January 12, 2009

Entry 3, Jan 12

A longtime friend of Jayme's wrote a comment in response to the Jan 10th entry and I want to share it with everyone who follows this blog.

I'm an ordinary man. I've known Jayme since we were children. I think it is one of the great privileges of my life to know this unique man. In another culture, in another time, Jayme might have been a witch doctor or a warrior. A priest or a heretic. A nobleman or an anarchist. A scientist or a jester. But never ordinary.

I know Jayme believes that each of us can help him defeat this vicious animal. So look into your soul and decide how best you can affect the universe. Light a candle, hold a ceremony, shout from the rooftops, burn some incense, pray in earnest, chant at midnight, write a poem, sacrifice a virgin.

Please observe local statutes.

You know the wish to make when you blow out the candles on your next birthday, or when you break a wishbone, or when you see a falling star. And I don't mean the one about getting a pony.

And when Jayme wins this battle, we can take the credit!

Saturday, January 10, 2009

At the lake for a little R&R

For those of you who don't know who "Mama" is, that would be my mom. She has courageously battled cancer for over a year, but it has been determined that it is no longer treatable. Hospice is now a part of our lives and that is a good thing. They will provide so much comfort to both my parents.

Jayme and I are relaxing at the lake this weekend. Not exactly fishing weather , but still our favorite place to spend a weekend, no matter the weather.

Thanks to all our friends and family for the emails and phone calls and outpouring of support. As difficult as it has been these past 5 days since we received the phone call, it has made such a difference. You have no idea how grateful we are for your positive thoughts and prayers!

Jayme will have two tests next week to "stage" the cancer. The results of those tests will determine the treatment options. Hopefully, he can start treatments in the next 10 days. Whatever the results, at least we will know what we face. Not knowing is the difficult part. Jayme has been remarkable and focusing on readying his body for what is ahead.

Please keep those positive vibes coming his way.

Friday, January 9, 2009

Entry 1

I was diagnosed with Esophageal Cancer on Monday, Jan. 5. Kay suggested we do a blog otherwise she'll run thru her monthly cell phone minutes in about three days.

First, there has been an incredible outpouring of support. It sounds cliche but it really, truly, is a great thing. To go through this alone would be much more difficult. So, it's a We process.

Met the main doctor, Dr. Myron of the Kansas City Cancer Center, on Wed. He's solid. We're good there. He ordered three tests, which will take 10 days to complete. My appointment was at 1:15 pm and I got there just as Kay came out of Dr Myron's office with Mama, who has been battling cancer over a year. We all love Mama so much. She was clear and straight to the point when she said her cancer is untreatable. Her parting words to Dr. Myron were "take care of my son-in-law". She is always thinking of others. A great inspiration. We'll make postings about Mama to let you know her status (she'll probably insist on making her own, knowing her!).