I tend to be a pretty private person, so why a blog? Since I was diagnosed with cancer in May, 2007 I have been overwhelmed and incredibly moved by all the expressions of love and support I have received. Much to my surprise, many people want to keep up with how I am doing. Someone suggested that a blog would be a good way to do this, and thus this space was born.
My sister Susan visited us for a couple of days this past week. Though her stay was all too short, we certainly enjoyed having her here. She was so nice to fly out from Colorado.
Sister Susan and me
My health is better than it has been in several months. I have more energy and am even gaining a little weight.
In fact, we’re looking forward to a Caribbean cruise with my parents in January and staying in Florida thru February. In March we will go to San Jose, CA to see daughter Elizabeth, her husband Jayson, our grandson Ian and new baby ??
Jim and Julie – Ready for the holidays
Julie and I wish all of you Happy Holidays and a wonderful year ahead.
My Thanksgiving blog post generated quite a response. Many of you made comments on the blog or phone calls, and many more sent letters or e-mails.
Your thoughts were overwhelming and heartwarming. Many of your messages brought tears to my eyes. Thanks to all of you -- your support means more to me than you can know.
Julie and me having fun with our friends, Jan and Mike Kessler
Last January I visited my oncologist. Things weren’t going very well at the time, and I asked him about how long I could be expected to live.
Now, I resent doctors who play God and pronounce death sentences as if they were law, but I asked him and he answered. He said that Christmas 2007 was very likely my last and that I couldn't expect to see the holidays in 2008.
Well, the holidays are here, and so am I. In fact, I feel much better than I have in months and have been getting stronger every week for the past six weeks or so.
All this and the arrival of Thanksgiving has made me think about what I am thankful for. Here is a partial list.
I am thankful for you. For all the friends and family who have been interested and kind enough to read this blog.
I am thankful for all the cards, letters, emails and phone calls I have received.
I am thankful to be able to drive the car.
I am thankful for the changing of the seasons.
I am thankful for the special kindness of people I hardly know.
I am thankful for my parents, who are alive, young and healthy at 88 years old.
Last night I looked out the window over our bed and saw thousands of stars. I am thankful for this beautiful universe and our place in it.
I am thankful to have some fantastic friends.
I am thankful to wake up each morning.
I am thankful for the love and support of my family.
I am even thankful to mow the lawn (at least most of the time).
I am thankful for Julie, who has has sacrificed much for me without complaint.
I am thankful that I have lived to know my grandson and expect to see my second grandchild in March.
I am thankful to still be alive and relatively healthy.
Strange as it may seem, I am even thankful for having cancer. Of course, I would rather have spent the nearly last two years in some other way, but cancer has taught me a great deal. I am now forced to live in the present moment. I have discovered how compassionate people can be. Cancer has taught me the true value of love.
So, I have much to be grateful for, and I consider myself an incredibly lucky person.
I hope you have a wonderful Thanksgiving and a year filled with love and gratitude.
We celebrated Julie's 59th birthday over the weekend of Oct. 18-19. My sister Beth and husband Joe were able to be with us for the weekend, and we had a surprise visit (8:30 AM - thus, the bathrobes) from our good friends, Jan and Mike Kessler. The following weekend Ashley and Dan joined us to continue the birthday extravaganza. I thought you would like to see the pictures.
A little housekeeping: the comments section of the blog has been changed. There seems to be some confusion on how to add comments to the blog, and I've been trying to make it easier. Now, if you click on "Comments" at the bottom of each post you will see a pop-up window where you can leave your comment. You also no longer need a Google account to post a comment. I hope this makes it easier for everyone.
I can’t believe it’s been nearly 3 months since my last post – another period of highs and lows.So I’ll bring you up to date.
Elizabeth, Jayson and Ian arrived on August 11 and brought with them a welcome surprise.Ian will have a little brother or sister around the end of February or early March!Elizabeth is a veteran this time around, and, despite some nausea during the first trimester, she feels great and sometimes has to remind herself she’s pregnant.We spent the first week of their trip in Virginia, squeezing in visits with my parents and my sister Beth and her husband, Joe.Then we were all (including Ashley and Dan) off to Stone Harbor, NJ, for the second week.The weather was perfect for the beach, and we were able to spend time with our good friends, Micky and Jeroen from Holland, and Julie’s lovely Uncle Beef and Aunt Joan.Ashley and Dan got some valuable hands-on time with Ian, who progressed from first staggering steps to running at a gallop during the two weeks they were here.He also learned that if he claps his hands and smiles, everyone in the room will follow suit and cheer loudly – over and over and over again.We had a wonderful time.
After Elizabeth and her family flew home on Aug 24 it was time to address medical issues. Earlier in the month, I’d had minor surgery to remove the feeding tube – I didn’t need it, and it was a relief to get rid of it. In addition, the persistent tachycardia episodes combined with the meds, which did little to prevent the tach but reduced my blood pressure significantly, had driven me to a cardiologist who specializes in electrophysiology.He scheduled a catheter ablation for Aug 25 in Richmond, immediately following our return from StoneHarbor.The procedure was completely successful, and I’m happily off the dreaded beta blocker.
Despite all that progress, I was feeling increasingly drained and exhausted.My blood pressure still took occasional dips and my red blood cell count was falling.But we really became alarmed when I developed jaundice in mid-September.My local internist ordered a CT scan and referred me to a gastroenterologist in Richmond.He looked at the scan and found a large, suspicious looking mass in my abdomen near the base of the liver.Within days I was back in the hospital for an ERCP (a deeper, more tricky version of an endoscopy) to find and correct whatever problem was causing the jaundice.The doctor explained that there’s a large lesion in my stomach that distended the stomach wall so far that impinged on the common bile duct (from the liver to the digestive tract) – hence the jaundice.He inserted a stent in the duct to open it up permanently, but he biopsied the stomach lesion and determined that it is malignant.He also saw evidence of cancer on the interior walls of the abdomen, so the cancer has finally metastasized.
After a night in the hospital, we came home to rest and regroup.This latest procedure really took a toll on my already depleted energy reserves – we’d planned for months to attend the biennial reunion of my dad’s WWII bomb group in DC this past weekend.Unfortunately, I was simply too exhausted and uncomfortable to make the trip, which was especially disappointing since my sister Susan was there from Colorado.The rest at home, though, was apparently beneficial – during the last week I’ve gained some strength back and have even been able to do a few light chores around the house.I also found this morning that I’ve gained ten pounds.It’s a strange disease.
We’re looking forward to a visit from Beth and Joe this coming weekend, and Ashley and Dan will be here the following weekend.Julie’s birthday is Oct 19, so the next couple of weeks will be a non-stop festival.Elizabeth, Jayson, and Ian plan to be here for Christmas, and I intend to be around for the birth of grandchild number two next winter.
Julie and Ashley continue to design and make jewelry and participated in an art and crafts festival in September in Colonial Beach, VA.Their work is available on line, and Julie devotes much of her free time to making custom pieces she hopes to sell in the local artists’gallery at The Tides Inn in Irvington, VA.She says it keeps her sane.
I want to take this opportunity to thank all of you have contacted me with your love and good wishes in the past few months.Notably, Tom Peebles and his wife, Christine, took time during their brief visit to the US from their posting in Sophia, Bulgaria, to drive down her and spend an afternoon with us.It was great to see them and to catch up.I’ve also had calls and emails from Ted Raphael, and a surprise call from Vic Dhooge, Gary Spade, Larry Link and Bob Hadley from my high school basketball team – what a thoughtful thing to do.Thanks to everyone who has sent an email, made a call, sent a card, kept me in their thoughts, or said a prayer for me.You keep me going.
Hi, everyone. A few of you have contacted me, wondering why you haven't seen any blog updates since March. Despite rumors to the contrary, I'm still around and doing relatively well, though I had a pretty rough patch from March thru June. When I last wrote, we'd just returned from our fabulous cruise with my family. On March 16, Dad and I flew to CTCA in Zion, IL in hopes of resuming the brachy therapy that had been so successful in reducing the size of my esophageal tumor. Once they scoped me, though, they determined that there was too much dead tissue from the previous treatments to proceed at that time. They went ahead with a CT scan, which showed no signs of spread, and sent me home to recover for another 3 months. It sounded like fairly promising news.
Unfortunately, I continued to have difficulty swallowing and lost even more weight. This went on for a couple of months as I became increasingly fatigued and malnourished. Julie and I finally returned to Zion on June 2nd for a checkup and testing. The news was a mixed bag. Once again, the CT and PET scans showed no evidence of cancer outside the original tumor, which was very encouraging. However, the bad news was that the tumor had expanded to its original size, effectively closing off my esophagus and preventing me from swallowing. The radiologist told us the risk of death from resuming the radiation was much greater than the possibility of shrinking the tumor again, so that option was eliminated. A medical oncologist reviewed my case and said he didn't have any chemo options beyond what I'd already done. Finally, the gastroenterologist implanted a large stent in the middle of the tumor that keeps my esophagus open and allows me to eat. It's not a cure, but he feels that the tumor is growing fairly slowly, and this should enable me to function normally for some time. As a backup, he also surgically inserted a feeding tube in my stomach, but he doesn't think I'll need it in the forseeable future.
Now that I'm home again and able to swallow, I've gained back a bit of the weight I'd lost. My biggest frustration now is the constant exhaustion, which is normal for someone in my situation but certainly limits my activities. I'm also still plagued occasionally with a rapid heartrate and the low blood pressure that results from the meds for the tachycardia. Sometimes I think the meds are worse that the conditions they're meant to cure.
Our days are fairly quiet in this period they refer to as "living with cancer". We've missed out on a couple of key events like watching my nephew, Ethan, play in a lacrosse tournament in Baltimore and attending a reunion of Julie's family at the Jersey shore. With my diminished level of energy, it's exhausting to travel. Fortunately, my sister, Suzy, her husband (David) and the kids (Rachel and Ethan) carved out a couple of days for a great visit here before they headed home to Colorado. My sister Beth and husband Joe will come down next weekend for some R and R. We are looking forward to a visit from Elizabeth, Jayson and little Ian on August 11. We'll all drive up to Stone Harbor, NJ, for our annual week at the shore, where we'll be joined by Ashley and Dan. Our friends from Holland, Micky and Jeroen, will also be there for part of the time, and we hope to see Beef and Joan Meader, Julie's uncle and aunt, there too. We also hope to have my Mom and Dad here while Elizabeth and family visit, so we have a very full remainder of the summer.
Thank you so much for all your expressions of concern and support. Even if I haven't responded personally to you please know that it's from a lack of energy, not a shortage of gratitude. I remain awed and humbled by the love and goodwill that you have expressed.
We're back from our wonderful cruise to the Panama Canal. What a great time we had! The above photo shows our entire group (front row - sister Beth Whistler and my parents, Marion and Art Seder, back row Joe Whistler, me, Julie, sister Susan LaHoda and her husband, David). Not only did we tour the Canal, we stopped in Aruba, Cartagena (Columbia), Limon (Costa Rica) and Ocho Rios. Most important though was the family time we shared together. As a part of the cruise, we also celebrated Mom and Dad's 66th wedding anniversary. The whole ten days was pure relaxation and fun. What a fantastic gift from my mom and dad!
We had perfect weather for the entire trip and enjoyed outings in all the ports. We did some touring, had some beach time, and saw some places that we've wanted to visit for years. It was just the antidote we needed after a snowy six weeks in Zion, Illinois. The ship had terrific food and lots of activities. I spent some time taking golf lessons and have resolved to try to become a late blooming Tiger Woods. Julie enjoyed soaking up sun on the Lido deck and becoming a Sudoku master.
After arriving back in Fort Lauderdale, Julie and I spent a couple more days with Mom and Dad at their condo in Delray Beach. By the time we got back to Virginia the pear trees were beginning to bloom, the daffodils were coming up, and the forsythia were budding. Ah, Spring.
On Sunday, March 16 I fly to Zion for more Brachytherapy. The next three treatments are scheduled once per week, so I will fly out each week for three days, then return home. Since the procedure is so easy we decided that it is not necessary for Julie to come with me. This way we both can have some time at home, and Kiki won't have to be shuffled to and fro. We're hoping for more optimistic reports from the doctor.
Here are a few more cruise photos from the thousands we took.
Finally, we have received some good news. In the past it seems like every time Julie and I met with the doctors to get word on whether I was making progress, the news was bad. If you've read the blog you know that my local oncologist and the doctors at Johns Hopkins told me death was probably a few months away. Fortunately, the doctors here at Cancer Treatment Centers of America have not given up.
Last Tuesday I had the first Brachytherapy procedure. The first part of this procedure is to do an endoscopy -- sticking a tube down my throat and looking around to see what is in the esophagus and stomach. When they did the endoscopy they found that my esophageal tumor had shrunk by about half and that there was no evidence of a tumor in my stomach at all. The doctor said that was better than he had expected, and that I am making good progress. He is confident that the Brachytherapy will reduce the tumor further, and in fact, wants to do six sessions of therapy rather than the four he originally planned. This means I will have three sessions before we go on our cruise, and three more in March when we return.
Needless to say, we are very thankful to get this report and really feel that my health has turned a corner. Of course, there is a long way to go before being cancer free, but at least I'm headed in the right direction. I've been eating pretty much normally for the first time in months and feel some energy returning. I have another Brachytherapy tomorrow, then the third on Monday. Julie and I will head home on Tuesday, see Ashley and Dan and pick up Kiki, then get ready for our trip to Florida on Sunday.
Tonight Julie and I are going down to the hotel restaurant for a Valentine dinner. We're going to have another snow storm so thought we'd better stay local. It's not fancy, but it's the best we can do. Happy Valentine's Day!
Thanks to all of you for your care, concern, prayers, and healing wishes. I know that all of your healing energy is helping me to recover.
(My apologies to one of my favorite authors, P.G. Wodehouse, for appropriating the title of this post. )
Julie and I are here in snowy Illinois and have been for the last month. Sorry that I haven't been very good at keeping you informed of our whereabouts. I promise to do better. As you can see from the picture above though, I have been busy at something. I've been growing hair and for good measure have added a beard. It's a work in progress, but it is progressing. My weight remains stable, and I've actually gained a few pounds while we've been here.
I have been receiving Tomotherapy radiation treatments twice a day at Cancer Treatment Centers of America in Zion, Illlinois. (There is a link to CTCA on the left side of the page under "Links.") You can learn more about Tomotherapy by going here. These treatments were twice a day for the first three weeks we were here, followed by a week off. As you might imagine, I felt quite tired most of the time during those weeks, but have managed to bounce back some this last week.
Next week I begin Brachytherapy, which consists of two treatments per week. Each treatment involves inserting a radioactive isotope in my esophagus for about five minutes or so. This is an operation with anesthesia, though it is outpatient, so hopefully won't be too bad. You can learn more about this procedure by going here. I will probably have four of these sessions, three between now and Feb. 18 and one more in March, with a possibility of a couple of extra sessions should I need them. As of now we don't know whether or not these treatments are helping with the cancer, but we should know more in a few days.
Mostly, Julie and I have been going to the hospital every day, having breakfast and lunch there, getting the treatments and then coming back to our room at the Radisson Hotel, which is actually just over the border in Wisconsin. We've met some very nice people at the hospital, some of whom have the same type of cancer that I do, and their encouragement and support have been wonderful.
Somehow the weather gods have seen fit to decree this Winter as one of the coldest and snowiest in recent memory in this part of the country, so I have been brought back abruptly to my roots in Michigan. For example, the high temperature today is forecast to be 5 degrees with winds around 35 m.p.h. and a windchill of minus 35. Julie, as a Maryland and Virginia girl, has never experienced a Winter like this and doesn't want to again.
It's been a somewhat stultifying time here -- imagine spending 45 days in a motel room. Fortunately, we have a small suite which consists of two rooms, so we're not on top of each other all the time. We have a very small refrigerator, a microwave, and have bought a hot plate, so we are somewhat self-sufficient in our room. We also each brought a laptop, lots of books, and a DVD player with DVD's. Julie has also knitted me a much needed scarf and has almost finished a sweater for herself. We haven't killed each other yet, and in fact, have been getting along very well. There's something about serious illness which puts your priorities in perspective, I guess.
Our "Palace"
Living Room
Kitchen and TV
Bedroom
However, we are eager to get home! We miss our family and friends, we miss Kiki, and we miss our house and the river. Right now the plan is to return home on Wed., Feb. 20. We will do a quick repacking, then head to Florida. My mom and dad have invited us, and sisters Susan and Beth with their husbands David and Joe for a ten day Panama Canal cruise. We leave from Ft. Lauderdale and make stops in Aruba, Cartagena (Columbia), the canal, Costa Rica, and Jamaica. Needless to say, we are very excited to be making a 180 degree change from northern Illinois to family, warm weather and relaxation. Bring on the good times!
Though I agree with the thoughts in the article, I have removed it from the blog. You'll find much of the same information in new links that I have posted. One is from Cancer Tutor. This site has an incredible amount of useful material that is an alternative to the traditional medical approach.
The other link I have added is to Cancer Treatment Centers of America. I have already made a visit in December to their midwest center in Zion, Illinois and will be getting more treatment there in 2008. More about this later in another post. These links appear at the left side of the main page.
Thanks to Ted for keeping me and this blog shipshape.
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