Day 295, Year 11: The End of a Chapter

Day 295, Year 11: The End of a Chapter
Date: Friday, August 12, 2016
Weather: Hot, Humid, and Windy
Location: At Home in The Studio #8, Falmouth, MA

Today marks the end of a chapter in our lives. And as Mark said in response to that statement from me this morning, “It has been one hell of a chapter.” He is so right about that. This morning we received the email from our yacht broker, John Schwab, saying that all the paperwork was in and that the sale of Windbird is final. I cried and Mark celebrated. Interesting reactions from the two of us since sailing was Mark’s dream and I went along, only reluctantly. But somewhere along the way, I became a total convert.

Our website says I have posted 3,544 posts since October 18, 2005. That is the day we left Boston headed out for our voyage around the world. My accounting tells me that number is actually 3,486. But whichever, I have posted a log almost every night that we were sailing since leaving Boston. In that time we have met so many incredible people from all around the world—some in person and some via the blog. We named the blog ‘The Voyage of Windbird’ and it has been an incredible voyage. It was Mark’s dream of sailing around the world that propelled us into this venture, but early in the first year, it became my dream as well. Windbird has been our home and our best friend for the past eleven years. Not once did either of us ever wish that we had a different sailing ‘partner’ for our voyage around the world. Windbird is tough, but at the same time, she is comfortable and forgiving. There was so much we didn’t know when we started our voyage, and somehow it seemed that Windbird taught us what we needed to know. And we are confident that she will do the same for her new owners, Sam and Dawn Weigel. We are really looking forward to following the continued adventures of Windbird through their blog, ‘Weigels on the Water.” It gives me a great sense of satisfaction to know that Windbird’s new adventures will be documented in Sam’s blog. We encourage you to follow along. Here is the link:
http://wotwater.blogspot.com/

Tomorrow I will spend my day transforming my blog from the focusing on the Voyage of Windbird to reflecting our new life on land. It is a very different kind of voyage. We are so grateful to have had you following our adventures and certainly understand if you choose to leave our adventures at this point. But if you want to continue following our journey, just check in here tomorrow night. We will still be here.

Day 294, Year 11: Happy, Happy

Day 294, Year 11: Happy, Happy
Date: Thursday, August 11, 2016
Weather: More Hot and Humid; High Temp in the upper 80’s F
Location: At Home in The Studio #8, Falmouth, MA

Tonight we are happy, happy. Even when you think you have prepared yourself for all possibly alternatives, evidently you just never really know what comes next. Mark and I have discussed the next steps in his cancer treatment program with each other and with Dr. Kwak at Mass General. We thought he had only three options—one of two different oral pills, a heavy duty infusion drug called Folfox, or no treatment at all. Mark had decided to go with the aggressive Folfox, but he was dreading the side effects so much that he sometimes thought again about ending all cancer treatment. But today when we met with his Cape oncologist, Dr. Aviles, we were presented with yet another alternative. This was a total surprise, but Mark liked what he heard. Dr. Aviles presented the possibility of a different type of immunotherapy. Mark has had treatment with cetuximab and panitumumab which are both monoclonal antibody immunotherapies. Both worked for a time, but then the cancer outsmarted them. The new alternative is a different type of immunotherapy that is a checkpoint inhibitor called pembrolizumab (brand name Keytruda by Merck). In plain English, I think that means it simply does something to let your own immune system work against the cancer. Dr. Aviles has a number of patients who are trying Keytruda and he is seeing great results. The trick is that Keytruda is not yet an approved treatment for colon cancer so we would have to pay out of pocket for the treatments. Dr. Aviles estimated the cost to be somewhere in the $100,000 range. And as he said, no one can afford that. But Dr. Aviles thinks he can get Mark approved as a compassionate care case with Merck which means Merck pays the bill through December. If the therapy is effective for Mark, we would just have to hope that Merck would approve this for another calendar year. We were given the opportunity to go away and think about this option, but Mark opted to sign the papers to apply immediately. We should hear from Merck in no more than ten days, but possibly as soon as the middle of next week. This regimen is given as an infusion every three weeks and there are no side effects. Woohoo!!! Of course, there is also no guarantee that it will work, but neither is there any guarantee that Folfox would work the second time around and we know all too well the side effects that chemotherapy regimen. So with Merck’s approval, we will launch into a new chapter in Mark’s battle against cancer. Maybe he really is a cat that has nine lives!

Day 293, Year 11: Day Trip to Boston

Day 293, Year 11: Day Trip to Boston
Date: Wednesday, August 10, 2016
Weather: Mostly Cloudy and Humid, Some Rain; High Temp in the 80’s F
Location: At Home in The Studio #8, Falmouth, MA

Our trip to Boston today was for a medical appointment for me, not for Mark, for a change. I have this aggravating condition called hammer toes where the big toe on each foot is ‘leaning’ toward the second toe so that they overlap. When I thought Mark would be going to treatment in Boston on Wednesdays through the summer, I made today’s appointment with the podiatry department at Mass General. Now that Mark is no longer going to Mass General for the trial treatment, I hated to drive all that way for my appointment. But Mark insisted. Unfortunately, the podiatrist was not that helpful. I had learned most of what he told me by searching online, but what I did find out was that he would not recommend surgery until the condition is so bad that I am crawling, not walking. I am nowhere close to that, so I will just continue as is. The doctor was helpful in giving me a list of recommended places to shop for the best shoes to wear and he showed me a new way to literally tape my second toe in place. His way is much better than the way I have been doing it. Not sure this was worth the drive to Boston, but at least I now know that I don’t need to think about surgery.

Mark did not have a good day today, but I insisted on taking him shopping for shoes for himself on the way home from Boston. We drove to out of our way to go to an outlet mall to search for both sandals and new sneakers for him. He has lost a lot of the feeling in his feet due to neuropathy caused by his chemo treatments. And both his currant sandals and sneakers are old and worn. The heels of his shoes are so worn down and I have been constantly afraid that he was going to trip and fall. So we did some looking around and ended up buying the most expensive sandals and the most expensive running shoes we could find. That was not our goal. In fact, it was the opposite. But it became very obvious in our search that what he needed was not going to be cheap. At least what we got was cheaper than it would have been in a retail store. I’ll shop for shoes for me later as it was obvious that Mark did not have the energy to continue today.

Tomorrow is another day off Camp Oma. I will go with Mark to talk to his oncologist here on the Cape, Dr. Aviles. We will discuss Mark’s next treatment, Folfox, which is slated to begin in the next few days. Folfox is the first chemotherapy that Mark received in the spring of 2012. Dr. Kwak in Boston told Mark that he should probably know if the regimen is effective after the first couple of treatments. We’ll listen to what Dr. Aviles has to say tomorrow and then launch into this treatment. Mark’s cancer is advancing quickly, so hopefully the Folfox will slow down the growth.

Day 292, Year 11: Reveling in This Beautiful Weather

Day 292, Year 11: Reveling in This Beautiful Weather
Date: Tuesday, August 9, 2016
Weather: Beautiful Summer Weather
Location: At Home in The Studio #8, Falmouth, MA

We have had a run of just perfect summer days, so I have been reveling in this beautiful weather. I’m hoping that if I suck in enough of these beautiful days, I’ll not notice the bad weather when winter comes. Not sure that approach will work, but I do know I’ll have wonderful summer memories.

I saw on Heather’s Facebook page today that she was reminded of four years ago today with a video I shot of Jonah singing the National Anthem at age 3.
https://www.facebook.com/hmhgoldstone?fref=ts
This was during the 2012 Summer Olympics. Jonah was definitely in the Olympic groove, but he had been singing the anthem leading up to the Olympics and is still doing so today. He has a beautiful voice, a deep love of sports, and thinks every game, whether in the backyard or in the stadium, should begin by singing the Star Spangled Banner. Go, Jonah.

And Happy Birthday to our friend Bruce Woodin. We were out sailing with him on Sunday and yesterday he became the proud grandfather of Piper Rae, a 9 pound 10 ounce, 22 inch-long baby girl. Congratulations to Piper’s parents and to Bruce and Jane. This is a birthday Bruce won’t forget.

Day 291, Year 11: Fried Green Tomatoes

Day 291, Year 11: Fried Green Tomatoes
Date: Monday, August 8, 2016
Weather: Clear and Warm, High Temp in the 80’s F
Location: At Home in The Studio #8, Falmouth, MA

There are many joys of summer and we indulged in one of those today—fried green tomatoes. This morning Heather was bemoaning the fact that they planted only cherry tomatoes this year. So they will have no source of big green tomatoes to bread and fry. So I went to the nearby farm stand and bought some green tomatoes. To fry these, you simply slice them, dip each round in white flour with a little salt added, then dip the floured round in a beaten egg mixture, and finally dip the flour and egg coated round in cornmeal. You then fry them in olive oil and have one of the finest culinary delights on earth! At least Heather and I think so.

Other than having fried green tomatoes, it was a pretty ordinary day. After Sam and Jonah’s science school classes, we headed home and took granddad with us. He then watched the boys while I went to a chiropractor appointment. The visits are definitely working and the pain in my hips is almost gone. Unfortunately, the pain in Mark’s abdomen worsened again today. He talked with his oncologist, Dr. Kwak, this evening and even though the genetic testing on the biopsy samples is not complete, she thinks he should go ahead and start treatment as soon as possible. So he will call his oncologist here on the Cape tomorrow and get that process started. In the meantime, we will pass the time by watching the Olympics. We didn’t get to watch the Summer Olympics in 2008 or 2012. In 2008 we were sailing in Indonesia and in 2012 we were living aboard Windbird in Woods Hole with no television. So we are really enjoying watching the 2016 Olympic Games on our new big screen smart TV.

Day 290, Year 11: Wonderful Sail on Buzzards Bay

Day 290, Year 11: Wonderful Sail on Buzzards Bay
Date: Sunday, August 7, 2016
Weather: PERFECT
Location: At Home in The Studio #8, Falmouth, MA

Wow! We had a wonderful sail on Buzzards Bay this morning with Bruce and Jane Woodin. The weather was perfect—just enough wind, blue skies, and calm seas. Bruce and Jane’s boat is a Sandpiper 15-foot catboat made by Marshall Marine here in Massachusetts. It has a gaff-rigged main and is easy to sail. When they acquired the boat many years ago, its name was Poo, as in Winnie the Poo, and they kept that name. They have a mooring in beautiful West Falmouth Harbor and use a yacht club dinghy get out to the boat. When we arrived this morning, they went out to get Poo and bring her to the dock to return the dinghy and to pick us up. We started by motoring out of the harbor. Often they cannot take the boat out of the harbor as Buzzards Bay can be quite boisterous. But today conditions were just perfect. We set sail and had a most relaxing, easy sail. We were out about two hours and then came back in and sailed around the harbor for a bit. Thankfully Mark felt good this morning, but unfortunately as soon as we got home, he started having pains in his abdomen again. I think the solution to the pain is to just keep him out on the water. It was fantastic to be out there today. I know we have missed it, but I don’t think we realized just how much. Ed and Lynne Kirwin called while we were out sailing to see if we were enjoying it and to tell us that they were going sailing with friends on the Hudson River this afternoon. Bruce and Jane have offered to take us out again next weekend and hopefully things will work out so we can do that. Thank you so much, Bruce and Jane. It was a wonderful day.
00 Happy Sailors
Bruce and Jane were headed north to Stowe, Massachusetts this evening to take care of their twin grandchildren, A.J. and Jasper, when their daughter Kate goes to the hospital tomorrow morning to deliver the newest grandchild. We look forward to announcing the new arrival in tomorrow night’s log. Sure hope everything goes smoothly for Kate and new little one.