Life After Windbird, Day 11: Wonderful, Relaxed Day with Ed and Lynne
Date: Tuesday, August 23, 2016
Weather: Sunny and Warm after a Cool Night
Location: At Home in The Studio #8, Falmouth, MA

We had a wonderful, relaxed day with Ed and Lynne.

Mark is battling a new round of nausea and fatigue, so he slept-in while I ran errands and Ed and Lynne went for a walk down to the beach and back. Once we were all back together, we launched in to various projects. At Lynne’s suggestion, she and I went through the five really big plastic bins stacked in our back hallway. Two of those bins contained things we bought on our trek around the world. I’m a collector and pack rat. Lynne is the exact opposite. So all she could say to me was, “What were you thinking when you bought all these things.” The only response I could think of was that I must have thought I’d be opening a world market shop someday!

I was able to find room in an empty under-the-bed storage drawer to put one plastic bin of things. But the second bin remains in the hallway. We emptied two more bins, but the one marked ‘Christmas’ was left unopened. I’ll deal with that one in December. So we started with five bins and ended up with only two. Good job. That allowed me to stack two large bins that have been sitting behind the dining room table on top of the two remaining bins in the back hallway. So our afternoon was quite productive. Mark and Ed assembled two bar stool height deck chairs that were delivered by the postman so that we can now sit on the deck and watch the boat traffic. The view from the regular height deck chairs is impeded by the deck railing, so the new chairs are a welcome addition.

Just before dinner, Mark got a call from Sam Weigel, Windbird’s new captain. He called yesterday with the news that he thought it was possible Windbird had been hit by lightning, and today’s call seemed to confirm that. We are just heartsick for Sam and Dawn. Taking over the helm of a boat for the first time is difficult enough, but being hit with a lightning strike complicates things immensely. We are still having a hard time believing this has happened and keep telling Sam to check different systems. But after reading his blog tonight, I’m pretty much convinced that this has really happened. The title of his blog says it all. “Zap.” Sam and Dawn, just know that we are thinking of you.

Ed and Lynne leave in the morning, headed home to Nyack. But we won’t be alone for long. Bob and Beth Lux, friends from the Concord Yacht Club, are dropping by for lunch. We’ll just make sure Mark gets plenty of rest in-between. The new immune-therapy was billed as a treatment with no side-effects for most people. But Mark must be the exception. We’ve always know he was exceptional! Unfortunately, in this case, being the exception means he is experiencing extreme fatigue, edema (swollen feet and ankles), nausea, and reduced appetite. This, of course, means he will lose even more weight. So we will spend the next few days regrouping and figuring out how to best attack these side-effects. We’ll start tonight by getting the essential oil diffuser going with peppermint oil to fight the nausea. Hope I have positive results to report tomorrow night.

And the last note for tonight . . . Today it was confirmed that Justin, Jo, Ziggy, and Coco will be flying in for a week’s visit on September 9. My sister and brother-in-law Joe arrive on September 3 and leave on September 10. We will have a one night overlap so Patsy and Joe and Justin and Jo get to visit. We are really looking forward to these visits and just hope we can get Mark’s energy level up a bit so he can fully enjoy the time together.

Life After Windbird, Day 10: Ed and Lynne Arrived
Date: Monday, August 22, 2016
Weather: Much Cooler with Wind from the North
Location: At Home in The Studio #8, Falmouth, MA

Hurray, hurray! Today our wonderful friends Ed and Lynne arrived for a short visit. They really want to be back home in Nyack, New York, by Wednesday afternoon for the sailing club races, but we hope we can convince them to stay tomorrow night and drive home on Wednesday morning. In the meantime, we will just enjoy visiting together. Ed has been undergoing treatment for pancreatic cancer since the spring of 2015 and he is defying the odds and staying strong. This summer he has been able to once again play golf and go sailing, both of which he has enjoyed immensely. We met Ed and Lynne in Malaysia in December 2009 and sailed across the Indian Ocean in Windbird and Constance in 2010. Over a period of nine months, we sailed side by side to India, the Maldives, Chagos, Madagascar, and South Africa. It was a magical time and we become bonded forever. The hard thing to face is that both Mark and Ed are now battling cancer, but they both do this with grace, determination, and very positive attitudes. We have no grand plans for tomorrow. We will just hang out and enjoy each other’s company.

Lots of other little things happened today. Ed, the person who does maintenance here at The Studio, came at 10 am to fix a broken kitchen drawer and a ground-fault kitchen outlet. While he did that, Mark put together a nine-drawer small chest that I bought at Job Lot yesterday. We are still desperate for storage, and this unit fits nicely at the end of our hall. Heather, Jed, and boys headed to Maine for a week and a half. And I did some cleaning and cooking. We received the check from the sale of Windbird today and talked on the phone with Sam, the new owner, as he is on Windbird this week. We had hoped to be there in person, but Mark was just not us to the trip. And late in the day, Ed Kirwin, not the Ed the maintenance guy, fixed the broken kitchen drawer for the second time in one day. In the AM, the runner on one side of the drawer was secured, but a short time later, the runner on the other side of the drawer gave-way. After a search of the boat yard next door for a piece of wood 7/8 inches thick to repair the drawer, we ended up going to Heather and Jed’s to get a piece of wood. Ed then successfully fixed the problem. While at Heather’s we picked enough cherry tomatoes for our dinner salads and enough kale for Ed’s morning green smoothie. But foremost today, other than the arrival of Ed and Lynne, we enjoyed the change in the weather. The winds came from the north and cooled things down considerably. In fact, tonight the low will dip into the 50’s. We haven’t seen that for many weeks. The cooler weather makes it feel like the end of summer, but the weather is fickle. As soon as the winds switch to come from the south, things will warm up again. But today was just delightful and we’ll enjoy the cooler weather and good friends while we have them.

Life After Windbird, Day 9: Successful Race Day
Date: Sunday, August 21, 2016
Weather: More of the Same Beautiful Summer Weather
Location: At Home in The Studio #8, Falmouth, MA

Heather had a very successful run in her first Falmouth Road Race. When she zipped by us at Mile 6 (plus a little) she was still smiling.

And at the end of the race she still had enough energy to carry Ollie home on her shoulders.

It is great living so close to the race course. Early this morning, Sam and Jonah carried chairs out to the sidewalk to save a place for us so we would have a front row seat. Granddad and Ollie slept a little later than the rest of us, but we were all able to have breakfast and make it out to the street in time to see the first of the handicapped participants zip by in his wheel chair. One very special moment was when a young girl about Sam’s age went by still propelling her wheel chair after more than six miles. Her father was riding behind her on a bicycle, but she did the whole race on her own. The racers in wheel chairs are in the first wave to leave Woods Hole, then the elite women, followed by the elite men, and then wave after wave of the other 13,000 runners. After Heather went by us, we walked over to the soccer field that was transformed into a sea of runners.

We met up with Heather and walked back to The Studio where I took the ‘victory’ pictures with Heather and the Goldpebbles. They did a victory pose that led to a pose in honor of Olympic runner Usain Bolt from Jamaica.

Unlike the Bolt, Heather is not the fastest runner ever known to man, but her time today was quite respectable. And she was immediately talking about running again next year and shaving off a little time. Congratulations, Heather! We are so proud of you.

Life After Windbird, Day 8: Gearing Up for the Falmouth Road Race
Date: Saturday, August 20, 2016
Weather: A Break from the Heat and Humidity; High Temp 80 degrees F
Location: At Home in The Studio #8, Falmouth, MA

We’ve had a long string of days with high heat and high humidity, but today the humidity disappeared and it was delightful. Everyone in this town is gearing up for tomorrow’s Falmouth Road Race and I know all of the runners, including our daughter, will be very happy if the humidity stays away until after the race. Heather is running the seven mile race for the first time and she will be one of over 13,000 participants. Go, Heather!!!

We had Heather and family over for a pre-race dinner and then we all walked over to the beach where the race ends tomorrow morning. This is the 44th year of this race. Many elite runners participate, but it is also a hometown race. As Heather said tonight, if you live in Falmouth, you have to run the race at least once. The soccer field and beach that we go to all the time has been transformed into a mass of tents, TV cameras, and fencing. The beach road from Woods Hole to Falmouth Heights (which goes right by The Studio) will be closed by 6 am and will remain that way until the last of the runners come in. The race begins in Woods Hole at The Captain Kidd, a restaurant and bar, and ends about a half mile from here at the British Beer Company, another restaurant and bar. We will put our chairs out on the sidewalk early in the morning and hope to have front row seats to watch Heather run by. Then we will head over to the soccer field where the runners gather at the end of the race. At least that’s the plan. We are not sure we will be allowed to cross the road to get there via the short-cut. If not we’ll have to walk on the sidewalk for the mile from here to the finish line. Earlier today Mark and I went for a walk and had hoped to make it the beach, but he just didn’t have the strength. Tonight he was able to walk with us and made it all the way. We’ll have to see if he is able to do a repeat in the morning.

When the Goldpebbles arrived for dinner, they were all sporting race numbers and wearing gold medals. They had just run in a Road Race related Family Fun Run and all were very proud of their performances. After our walk to the end of the race course tonight, we came home to watch more Olympic running on TV. So the focus of everything today and tomorrow is race-related here. Jed and the boys are spending the night with us, but Heather went home to hopefully get a good night’s sleep before the race. When I was forty, I could barely jog three miles. Where did this daughter of mine get the physical stamina and passion for running? Wherever she got it, we are so proud of her and wish her luck in her first Falmouth Road Race.

And while on a positive note, I’ll mention that we found out today that my sister and brother-in-law, Patsy and Joe, that live in Nashville, Tennessee, are flying here to visit with us the first full week of September. And they are going to be followed by our son and daughter-in-law, Justin and Jo, and our grandchildren, Ziggy and Coco, who will be flying in from Puerto Rico. We are so excited that the first two weeks of September will be filled with family fun. And if all goes well, our good friends Ed and Lynne Kirwin from Nyack, New York, will be coming for a visit this week. So as Labor Day nears and summer is winding down, we are gearing up to visit with wonderful friends and family. Let the good times roll.

Life After Windbird, Day 7: All-Around Great Day
Date: Friday, August 19, 2016
Weather: Perfect Summer Day; High Temp 84 degrees F
Location: At Home in The Studio #8, Falmouth, MA

This was an all-around great day. Mark has his first infusion of Keytruda and everything went smoothly. And thanks again to Bruce Woodin for coming to pick him up while I was out and about with the Goldpebbles. Mark just general felt so much better today and we are hoping that is because of the new pain medication schedule set up by his primary care physician yesterday. He’s taking the same medications, just on a different schedule, and it seems to be working. His blood pressure is back to normal and he is much steadier on his feet. Hopefully this trend continues.

Sam, Jonah, Ollie, and I delivered Mark to the treatment center this morning and then headed to the Heritage Museum and Gardens for a day of fun. And fun we did have. We arrived just in time for the 11 am Caribbean music concert. The group was called Taino. We know from Ziggy and Coco and the Tainos were the indigenous people of the Caribbean and Florida, and Puerto Rico in particular, so made for a great connection. The concert was fun and as we watched there was a group of children all dressed in the same t-shirts that stood up front. As we were listening to the music, Sam blurted out, “Jonah, that’s Luke and Graham up there.” These are friends of Jonah’s from his days at the Woods Hole Daycare Cooperative. He went up to talk to them and found out they are in a day camp at Heritage. So that was another great connection. But after a few songs, the Goldpebbles were getting restless, so we left the concert and headed to a building that houses a carousel. After the carousel ride, we headed to Hidden Hollow. This is an area with lots of hands-on activities for the kids. Sam and Jonah quickly discovered a PVC pipe game where you connect sections of PVC pipe and then send golf balls through the pipe maze. Sam and Jonah were not satisfied with the current configuration, so they took it all apart and engineered a whole new game that became extremely popular. While they did this, Ollie and I played the xylophones, tried on various animal costumes, and then made our way to the sand pit. Eventually Sam and Jonah joined us there and played in the mud. There was a well near-by and the children were allowed to get buckets of water and carry them to the sand pit, resulting in s mud pit. But the boys were very careful and kept themselves dry for the most part. We then walked down to an overlook at a small lake, had lunch, and ended our day by watching a puppet show presentation of ‘The Pirate, the Princess, and the Pea.” All three boys seemed to really enjoy the day, so it was deemed a success.

While watching boys play in the sand pit, I got a call from our Australian cruising friends, Geoff and Chris of Shambala. They were in Key West getting ready to head across to Cuba and then on down the coast of Mexico and Central America to Panama. They called as they were leaving Key West this afternoon. It was wonderful to talk to them, but they and we are a bit apprehensive. Geoff has developed epilepsy and the medications cause him to have memory issues. It’s a long way home to Australia, but they are going to take it slow and easy and then get crew when they head across the South Pacific. We’ll keep in touch via SailMail and Skype and hope that all goes well for them.

Tomorrow we gear up for the Falmouth Road Race on Sunday. Heather will be running the seven miles and we will prepare to be her ardent fans. The Studio is located just after mile 6 of the race course, so Jed and boys will either stay here tomorrow night or come here early on Sunday morning to wait for Heather to fly by as she heads into her last mile of the race. Good luck, Heather!

Life After Windbird, Day 6: Doctor Day
Date: Thursday, August 18, 2016
Weather: Warm and Breezy, Not As Humid; High Temp 86 degrees F
Location: At Home in The Studio #8, Falmouth, MA

I was with the Goldpebbles this morning, watching Olympics and playing Olympics sports in the yard. We had a couple of neighborhood kids join in and that made it all the more fun for all, but after lunch they left the Olympic theme and decided a water slide in the backyard was more appropriate for the sunny, hot afternoon. About that time, Heather came home and I headed to get Mark so we could go for our yearly physicals with our new primary care physician. It is a little more than a 30 minute drive from here to his office and after the ‘appropriate’ wait time, we each met with a doctor’s assistant to do the routine checks and update of our basic information. I then met with the Dr. Ahmed first and got confirmation of a clean bill of health. He then invited me to join him with Mark to discuss future care issues. He recommended that Mark start receiving palliative care from the VNA (Visiting Nurses Association). Dr. Ahmed wants to see Mark once a month, but he wants someone checking in on him weekly and a visiting nurse will do that. We are hopeful that the immunotherapy that begins tomorrow is going to turn things around, but it will be weeks before we see any positive impact. In the meantime, Dr. Ahmed made it very clear that we need to do whatever we can to keep Mark’s weight stable, keep him exercising, and at the same time, keep him comfortable. Dr. Ahmed had a new recommendation for pain management, so we will follow his new plan and hope it works. But all of this means that Mark is not going to be traveling far from home in the next few weeks. We had so hoped to fly to South Carolina to meet Windbird’s new owners and do a proper introduction. But that is not going to happen.

Tomorrow morning, the Goldpebbles and I will drop Mark off at the infusion center and the kids and I will head to the Heritage Museum and Gardens in Sandwich. Tomorrow they are having a ‘swashbuckling day’ focused on pirates. We hope to get there in time to participate in an 11 am music presentation. We will then have fun at the museum until 2 pm when there is a puppet presentation: The Pirate, the Princess, and the Pea. Doing this means that we will drop Mark off a little early for his infusion and then good friend Bruce Woodin will pick him up and take him home. Thank you, Woodins!

Life After Windbird, Day 5: A Better Day
Date: Wednesday, August 17, 2016
Weather: Still Hot and Humid, Very Windy; High Temp 84 degrees F
Location: At Home in The Studio #8, Falmouth, MA

Today was a much better day for Mark. Late last week when we met with his Cape oncologist, the doctor suggested that Mark double his pain medications in order to better manage the pain in his abdomen. But yesterday, Mark and I discussed his quick downturn since making that change and decided to go back off the doubling. And today he was much better, much steadier on his feet and generally feeling good. We’ll just hope that the pain stays under control without increasing the meds again.

Good friend Jane Woodin and I went for a nice walk down to the beach this morning and then I spent my afternoon visiting my chiropractor and doing some necessary shopping. The chiropractor visits have really improved my back situation, so for that I am most grateful. Tomorrow I have the boys in the morning and then in the afternoon Mark and I have our annual physical exams with our new primary care physician. Hopefully that will be routine with no issues, but it will be a relief to finally have a new PCP.

Life After Windbird, Day 4: Facing Reality
Date: Tuesday, August 16, 2016
Weather: A Little Cooler; High Temp in the 80’s F
Location: At Home in The Studio #8, Falmouth, MA

I spent my day with Sam, Jonah, and Ollie and this evening we said our farewells to the Speigels. The three Goldpebbles really bonded with Jim and Teresa’s three, Zachary, Benjamin, and Rose.

Despite the difference in ages, or maybe because of it, they really hit it off. So this evening at a the end of long day for everyone, the wee ones and the teen ones, played games on the lawn here while the adults got to visit a bit. It was just so wonderful to see Jim and Teresa.

But this is where the ‘facing reality’ part comes in. It became evident to me tonight that Mark is really struggling to hang in there. Just three weeks ago Mark was able to walk two miles by himself with no problem. But in the last three weeks, his energy level has taken a drastic dip and in the absence of any kind of treatment, his cancer has become extremely aggressive. Every day I keep thinking things are going to improve, but tonight I realize that we just have to stop everything and focus totally on Mark. He has become very unsteady on his feet in the past few days and is really struggling with pain. So unless a miracle happens, we won’t be traveling to Myrtle Beach or anywhere else next week. Mark will get the first infusion of the new treatment on Friday of this week and then we need to focus on doing everything we can to help the Keytruda boost his immune system. Then the waiting happens. We just have to wait and see what happens. I knew today when Mark had to decline an invitation to go sailing with friends Jane and Bruce Woodin tomorrow that he is really not feeling good. But while waiting for the Speigels to arrive this evening, he did have the energy tonight to walk down on the dock with Heather, Jed, and boys to take a look at a beautiful little sailboat. It is wonderful to live so close to the water and to be able to walk the docks with Mark and just sit on the deck and watch the boats pass by.

Life After Windbird, Day 3: Fun with the Speigels
Date: Monday, August 15, 2016
Weather: Hot, but Less Humid; High 91 degrees F
Location: At Home in The Studio #8, Falmouth, MA

Our friends from Concord, New Hampshire, Jim and Teresa Speigel and their three teenagers arrived in Falmouth today and went to the beach with Sam, Jonah, Ollie, and me. Before I go into the details of the visit, I just want to say how wonderful it was to see Jim and Teresa after so many years. Their children are a lot older and Jim has a few gray hairs, but otherwise, we just picked up where we left off when we moved to Boston in 2003 to live aboard Windbird.

The Speigels arrived at Heather and Jed’s late this morning and it became evident almost immediately that our guys have a lot in common with their guys. Specifically, their common loves are soccer, baseball, and lacrosse and they headed to the backyard to play baseball. The oldest Speigel child is Zachary. He is 19 and will be a sophomore at the University of New Hampshire this year. The middle Speigel child is Benjamin. He will be 17 in September and will be a junior at Concord High School. Both are great with kids and after five minutes together, it was obvious that the Goldpebbles were absolutely comfortable with them, so I left them playing baseball in the backyard while I took Jim, Teresa, and their youngest, Rose, to nearby Menauhant Beach.

By the way, Rose is 14 and will be a high school freshman this fall. Anyway, it would have cost the Speigels $20.00 to park their van at the beach for the afternoon, so we decided to shuttle in the Goldstone van that has a beach sticker. After delivering Jim, Teresa, and Rose, I returned to pick up the backyard crew, delivered them to the beach, and then I left again to go get subs for lunch for everyone. The Goldpebbles absolutely fell in love with Zachary and Benjamin and spent the afternoon glued to them. When we returned from the beach, the Speigels went to check in at their hotel and the Goldpebbles had a little quiet time while I got dinner together. Heather arrived with Mark and at 5:15 pm the Speigels returned for dinner. We had a very narrow dinner window as both the Speigels and the Goldstones were going to see the Hyannis Sound a cappella group perform in downtown Falmouth at 7 pm. The time together was way too short for the Goldpebbles. They just wanted to stay home and play lacrosse with Benjamin and Zachary all evening. But hopefully they enjoyed the concert. Jonah was so sad and he just said, “There’s never enough time.” So true, Jonah. I, too, wish we had more time with the Speigels, but they head home at the end of the day tomorrow. They will spend the morning enjoying the pool at their hotel and then they will rent bicycles and ride to Woods Hole. At the end of the day, we hope they will have time to stop by to visit with us for just a bit before heading north.

Mark got his approval today for the immunotherapy drug, Keytruda (pembrolizumab). The first infusion could be this Thursday. This opens the opportunity for us to fly to Myrtle Beach next week to meet with Windbird’s new owners, Sam and Dawn Weigel. They would love for us to do a two to three day sail with them, but we will just have to see if Mark is up for that. His energy level has plummeted in the past few days. He turned on the AC in the apartment today to see if cooling things down a bit might boost his energy. But bottom line, we hope Mark will feel strong enough to fly to Myrtle Beach for at least a couple of days next week. He really wants to pass on some of his tremendous knowledge of sailing Windbird to her new owners in person. By the way, the Goldstones are headed to Maine next week for a few days of fun and relaxation with Grammie Goldstone. Thus the opportunity for us to fly away for a few days. And whether or not we go to Myrtle Beach next week, there will be one more week of Camp Oma after that before school starts here after Labor Day. If Mark just can’t make it to Myrtle Beach next week, we’ll try again in September.

Life After Windbird, Day 2: An Unexpected Call
Date: Sunday, August 14, 2016
Weather: Hot, Hot, and Hotter; High 91 degrees F
Location: At Home in The Studio #8, Falmouth, MA

The big news of the day would have been the hot weather, but that was superseded by an unexpected phone call that made our day. The call was from good friends that we haven’t seen for way too many years. They are coming to Falmouth tomorrow and got in touch with Justin via Facebook to find out where exactly we live these days. They knew we were down here somewhere, but when they found out it was Falmouth, they just had to call. The friends are Jim and Teresa Speigel. Teresa was my student teacher the first year I taught in Concord, New Hampshire, and we formed a lasting friendship. In the intervening years, she and Jim got married, they had three children, and now the oldest, Zachary, is in college. Oh, how the years do fly by. But we will catch up tomorrow and Tuesday while the Speigels are in our in our neck of the woods. In fact, they have reservations at a motel that is less than a mile from us. They made Falmouth their destination for their two-day vacation because they want to see a Hyannis a cappella group that is performing here tomorrow night (one member is a former student of Jim’s), do a little biking on the Shining Sea Bike Path, and spend some time on the beach. Coincidentally, Heather and Jed have been trying to get to a Hyannis Sound performance all summer, so they invited us all over for an early dinner so we can visit and then afterwards everyone can head to the performance. Jim and Teresa will have their three children with them, Zachary, Benjamin, and Rose. We haven’t seen the kids since the oldest, Zachary, was entering kindergarten. We are really looking forward to this visit.

Unfortunately, Mark has been battling pain and feeling very weak this weekend. It could be the hot weather, but he swears he is not hot. So because he is not hot, we haven’t turned on the air conditioning. But if he is still struggling with weakness tomorrow, I think maybe we’ll cave in and give the AC a try.

And a last note—Justin called this afternoon and helped me figure out how to post photo albums on the website once again. I’ve used Picasa to do this since 2006, but Google has stopped supporting Picasa and I’ve got to learn to do things in Google+. Even Justin found it a bit challenging, but he worked through it while I was watching the screen via Skype. He made a video as he was working through things so I can watch that over and over until I get it. He is also going to redesign the homepage on the website. That will take a few days, but soon we’ll have it together. Thanks again to Justin for taking the time to walk me through these changes.