Life After Windbird, Day 31: Celebrating Life with Family
Date: Monday, September 12, 2016
Weather: Clear; High 73 degrees F
Location: At Home in The Studio #8, Falmouth, MA

It was a beautiful day for celebrating Mark’s life. Heather and Jed arrived here this morning with Sam, Jonah, and Oliver. We spent the day celebrating Mark’s years on the water together by inflating our kayak and taking turns paddling around the harbor. I was surrounded all day by my children, their spouses, and my beautiful grandchildren. It was a good day.

Tomorrow we will take care of the contacts that need to be made. Because we were busy having a good time today, I didn’t check my email until after we all had dinner together. I was absolutely blown away by all of the messages about Mark on Facebook and in emails. If you are one of the people who sent those beautiful messages, I want to thank you from the bottom of my heart. The kind words about Mark were overwhelming. He was a very special person who is going to be missed by many. But as grateful as I am, I am going to have to continue this ‘conversation’ tomorrow evening. I am just too tired to write tonight. So stay tuned until tomorrow night for this continued thank you. Hugs to all of you.

Life After Windbird, Day 30: What a Wonderful Life
Date: Sunday, September 11, 2016
Weather: Clear; High 75 degrees F
Location: At Home in The Studio #8, Falmouth, MA

What a wonderful life. Mark Daniel Handley was born on July 7, 1942 and tonight, September 11, 2016, he left us. Heather, Justin, and I spent our day with Mark and met with a fantastic Hospice representative. His name was Will and he was so informative and reassuring. On his recommendation we all gave Mark our permission to opt out of his long-standing battle with cancer. And also on his recommendation, Heather and Justin brought the grandchildren to see Granddad. There were some beautiful moments even though Granddad was not very responsive. Heather stayed with Mark while I went to have dinner at her house. When I returned Heather reported that Mark had been doing a bit of a travel through time blurting out periodically something like, “Get that boat part.” He was a sailor to the end. I insisted that Heather and Justin go home with their families for the night. None of us thought he was close to the end. But sometime after 9 pm, his breathing changed and he wanted to hold both my hands. I practically sat on him in that tiny hospital bed for the next half-hour, telling him how much I love him and reminding him of how lucky I was to accompany him on his life’s adventures. Mark was a man of dreams and he made those dreams come true. Lucky me that I got to tag along. A part of me is gone forever, but I will rebuild with what is left. Mark was my lover, my friend, and my partner in life for almost 44 years, minus seven days. We met on September 18, 1972. Four has always been my lucky number and these 44 years have been spectacular. Mark left behind so many wonderful memories as well as two very special children and their equally special spouses, and five fantastic grandchildren—The Fab Five. It really was a wonderful life. Thank you, Mark Handley. I will be with you forever.

Life After Windbird, Day 29: Getting to Know Falmouth Hospital
Date: Saturday, September 10, 2016
Weather: Hazy, Foggy Morning, Partly Sunny Afternoon; High 83 degrees F
Location: At Home in The Studio #8, Falmouth, MA

We got another opportunity today to get to know the Falmouth Hospital just a little bit better. It was obvious last night that Mark’s energy level was rock bottom. He managed a big smile when Justin, Jo, Ziggy, and Coco arrived, and another moment of joy when Ollie showed him the book Aunt Patsy gave him called, “The Frog Who Lost His Underpants.” Ollie thought the title was hilarious and wanted to share that with Granddad. Special moments.

But this morning Mark could hardly get out of bed and I had to use the new wheelchair to get him to the bathroom and then to the kitchen table where he could only eat half of his “first” breakfast. He immediately went back to bed and didn’t get up until early afternoon when the visiting nurse came to check on him. I knew when he didn’t get up to say farewells to Patsy and Joe that things were serious. By the time the visiting nurse arrived, I was at the airport in Boston saying farewell to Patsy and Joe.

Heather stayed with her dad in my absence, so it was Heather that talked with the visiting nurse. At some point Justin came to be with Heather and the decision was made to have Mark go to the Emergency Room at Falmouth Hospital. The visiting nurse determined he was very dehydrated and she felt his electrolytes were out of balance. I had requested that he not be admitted to the hospital unless absolutely necessary, but the doctor on call at the oncology center felt it was really necessary to make Mark comfortable and warned that it would probably be a one or two night stay. . . and that is what the doctor in the ER determined upon examination. Arrangements were made for us to meet with a team at the hospital that sets up home care in these situations and that will happen in the morning. Heather and Justin stayed with Mark until I got home from Boston and then I took over. My greatest hope at this point is that Mark will rally a bit after this stint in the hospital and be able to enjoy the visit with Justin and family. In the meantime, Ziggy and Coco are enjoying their visit with the Goldpebbles. We’ll just have to take this hour by hour, day by day.

Patsy and Joe arrived back in Nashville safe and sound. Both Mark and I enjoyed their visit so very much. Patsy and Joe have always been two of Mark’s favorite people and it meant a lot to him to have them come. My favorite photo from the week is when we went down to the beach. Patsy sat down beside Mark. He put his arm around her and she leaned on his shoulder. Another very special moment.

Life After Windbird, Day 28: Justin, Jo, Ziggy, and Coco Arrive
Date: Friday, September 9, 2016
Weather: Hazy Morning, Beautiful Afternoon; High 88 degrees F
Location: At Home in The Studio #8, Falmouth, MA

The definite highlight of today was the late evening arrival of Justin, Jo, Ziggy, and Coco. Their flight was delayed by an hour, but they still arrived here around 6:30 pm. Heather and boys were here and the fabulous five grandchildren were just so excited to see each other again. There were squeals of delight and lots of laughter, and we just let them run wild for a bit when they first arrived. Unfortunately Mark was not able to fully enjoy the reunion. This has been a very tough day for him. Two days ago if you had told me that Mark’s condition would deteriorate this much in 48 hours I wouldn’t have believed you. But it has and for the first time in my life, I’m not really sure what steps to take next. Thankfully I will have help from Justin and Heather at this very difficult time. And maybe this decline is temporary, possibly caused by yesterday’s infusion. We’ll just have to see how things are tomorrow. But most definitely I will be calling his oncologist to get advice, as well as calling the visiting nurse that comes once a week. I have always been a take charge person, but I’m finding it more difficult to do this with Mark. But I am so glad he had this last week with Patsy and Joe and I’m hoping against hope that he can rally to enjoy the visit with JJZ&C. The travel chair arrived today from Amazon and the foot rests for the full-fledged wheel chair arrived. I’m so hopeful Mark will enjoy some walks down to the beach to enjoy this glorious weather and salt air. But if things continue like today, he would not have the strength to endure it.

Despite Mark’s condition, we managed to have a good day. After Mark had eaten his second breakfast and was settled into the recliner for a long afternoon nap, Patsy, Joe, and I decided to drive to Woods Hole as we soon after they arrived, but this time we planned to stop along the way to get some photos. When we went the first time, it was overcast and rainy, but this afternoon was beautiful. We stopped at a place called Trunk River to get ocean photos and then we drove on down the road to the Nobska Light. This is a very picturesque lighthouse that has been a working light since the 1800’s. From there we drove to Woods Hole Oceanographic Institution’s (WHOI’s) Exhibit Center. Patsy and Joe really seemed to enjoy the exhibits and learning about Alvin, WHOI’s underwater research vessel. Patsy was more nervous about leaving Mark than I was, so we ended our tour and headed home. When everyone arrived, we had a great dinner together here at our apartment. Heather grilled the Pacific king salmon and it was delicious. We also had local corn-on-the-cob and Ziggy ate and ate and ate. He loves it so much but they can’t get good corn in Puerto Rico. Justin promised him we’ll have corn-on-the-cob every night this week, so we have that part of the evening meals planned well in advance!

Tomorrow morning either Heather or Justin will come here to be with Mark while I take Patsy and Joe to the airport for their flight back to Nashville. We have had a wonderful visit with them. Of course, it is ending too soon, but no matter how long they stayed, I would feel the same way. Sure wish they lived closer.

Life After Windbird, Day 27: Unexpected Trip to the Hospital
Date: Thursday, September 8, 2016
Weather: Rainy Morning, Partly Cloudy Afternoon; High 78 degrees F
Location: At Home in The Studio #8, Falmouth, MA

I just got yesterday’s log posted, only 24 hours late. Even though yesterday was an easy day, my sister and I talked into the night. By the time I sat down to write my log, I kept falling asleep. I thought I’d have time this morning to get the log sent, but today didn’t go quite as expected. Mark had a 9:45 am infusion and he woke up feeling just awful. He couldn’t walk without assistance, so all energy went into getting him to the oncology center. The doctor and nurses there were as concerned as I was about Mark’s condition. His weight was up by about ten pounds and it is obvious my just looking at him that he hasn’t gained that much in one week. Fluid accumulation was the obvious answer. Upon examination, Dr. Aviles felt that Mark had a lot of fluid in the abdominal cavity and definitely some around the lungs, but since all vital signs and blood work were normal, he recommended going ahead with the infusion and then heading straight to the hospital to have the fluid removed. So we did just that. When we arrived at the hospital Mark had to have more blood work done and then a nurse came to get us to take us to a room where the fluid would be removed. An ultra-sound machine was rolled in and a technician examined the abdominal cavity and found where she thought the best place would be to remove fluid. But when the doctor came in to repeat that examination, he said he could find only two little pockets of liquid—not enough to make the procedure worth it. He then examined the area around the lungs and did find fluid there. But we needed a different specialist, a pulmonary doctor, to remove that fluid. A pulmonary specialist was called and about 1.3 liters of fluid were removed. This procedure is called a thoracentesis. Mark had one done the end of July at Mass General when a little less than a liter of fluid was removed. The hope in doing this is that it will relieve some of the pain caused by the weight of the fluid. He felt somewhat better immediately, but we’ll see how he feels tomorrow. The nurse in the procedure room was Danielle and as we talked she said to Mark that he looked so familiar. When we found out she, her husband, and two children had lived aboard a catamaran for a couple of years, Danielle realized she knew Mark from West Marine. They bonded immediately and even hugged when Mark left the hospital. What is that instant bond that cruisers have? It is amazing.

Tomorrow Justin, Jo, Ziggy, and Coco arrive from Puerto Rico. I was going to drive to Boston to pick them up, but due to Mark’s condition, I really don’t feel comfortable leaving him. So today I made arrangements for someone to pick them up. They should arrive here in time for dinner with Patsy and Joe. Then on Saturday morning, I will leave Mark with Justin and Heather while I take Patsy and Joe to Boston to get their flight home to Nashville. I can’t believe they have been here almost a week. We’ve barely made a dent in all of the things we wanted to do. Patsy and I did get to go on a short shopping excursion late this afternoon after Mark and I got home from the hospital, but I’m not sure we are going to make it to Martha’s Vineyard. Joe really wanted to take the ferry over, but that is probably not in the stars for this visit.

Tonight we had a Mexican feast thanks to Patsy and Joe. We ordered take-out from a Mexican restaurant that is not very far from here and the food was really good. Thank you, Patsy and Joe, for providing dinner. And our new neighbor in the apartment next door brought over freshly baked banana bread for dessert. I REALLY enjoyed a cook-free evening.

We got an email from Windbird’s new owner this evening reporting on his first sail. Sam is visiting Windbird this week without his wife Dawn, but a friend came to join him on the first sail. It makes us so happy to hear from Sam and to know that Windbird is out there sailing again. And Sam, don’t worry about the unintentional jibes. Windbird has survived more than few of those!

Last note . . . here’s one of Joe’s photos of the view from our deck. We are no longer on a boat, but we are really enjoying the harbor views.

Life After Windbird, Day 26: Easy Going Day
Date: Wednesday, September 7, 2016
Weather: Mostly Sunny; High 80 degrees F
Location: At Home in The Studio #8, Falmouth, MA

Today was just a laid-back day. We had first breakfast and second breakfast and sat on the deck talking and drinking coffee in-between. Just before 11 am, we all decided to get out of our pajamas and get dressed for the day so that we would be presentable for the visiting nurse. Today’s nurse was named Jessica and she had some good recommendations for Mark. She is hopeful that she can get approval for in-home physical therapy for Mark. She took the prescription we had for a cane and promised to get that processed. Before doing that she called Medicare and found out that Mark is not yet eligible for a wheel chair. In order for Medicare to pay for that, the doctor has to verify that the patient is not able to walk through the house. That is not the case, so I ordered a transport chair from Amazon. We are keeping the wheel chair that Heather picked up at the local Service Center, but without arm rests or foot rests it is just too hard to use. If the transport chair that I ordered works out, we’ll return the wheel chair. If the transport chair is too light-weight for long walks, I’ll order arm rests. I already ordered foot rests from Amazon but just won’t open them until I know if we are keeping that chair. In any case, by the weekend, we should have a cane and a transport chair.

This log is being completed a day late. Even though it was an easy day, Patsy and I talked way into the evening and I just couldn’t stay awake to get the log sent. Hopefully I’ll do better tomorrow night.

Life After Windbird, Day 25: Happy Anniversary to Heather and Jed
Date: Tuesday, September 6, 2016
Weather: Overcast with Rain, Turning Sunny and Back Again; High in the upper-70’s F
Location: At Home in The Studio #8, Falmouth, MA

Happy Anniversary to Heather and Jed! They had a busy, busy day today, but hopefully they had time after the boys went to bed to sit together, have a glass of wine, and reflect on their thirteen years together. Cheers!

I started my day with trip to the chiropractor. It was a maintenance visit just to keep everything in line. This would be a most unfortunate time to have my back go out, so hopefully today’s visit will keep things in line. I stopped at Heather and Jed’s on the way home to pick up the pressure canner and when I got home, everyone was up, just barely, and all were hungry for breakfast. Patsy, Joe, and Mark had all slept in, so we had breakfast at noon. The morning had been overcast with some rain, but after we ate breakfast the sun came out. It wasn’t windy on the deck and felt wonderful, so we decided to drive down to the beach and just sit soak in that glorious sun. Unfortunately, it was much windier on the beach, but it was a warm wind and we really enjoyed just sitting there.

When we came back we had a very light lunch on the deck, again just enjoying the wonderful weather. Patsy and Joe have never visited Cape Cod before, so while Mark napped, the three of us drove down to Woods Hole. Unfortunately, the overcast conditions returned, but that didn’t keep Patsy and Joe from enjoying the sights.

When we returned home, I had to launch into canning the chicken mineral broth that was made yesterday. I used almost half of the broth to make a green bean and turkey soup for dinner, but still got seven pints of broth to can. Somewhere during my cooking frenzy, Heather and Ollie made a surprise visit to bring Mark a wheelchair. We talked over the weekend about getting one for him so he can be taken on longer walks but I still had done nothing about it. This morning Heather called Falmouth Service Center to see if they had a wheelchair or transport chair that we could borrow. They had only two and explained that as soon as they come in, they go out again. But they saved one of the two for Heather until she could pick it up in the afternoon. It was so thoughtful of her to do this for her dad. She and Ollie made the delivery and Ollie was so cute trying to show Mark how to use the chair.

This was the first day of school for all the boys and Ollie was so excited that he had four recesses today—two inside while it was raining and two outside in the sunshine. While we were out on the deck dealing with the wheelchair, Heather spotted an osprey perching on a boat. He was first perched on the tip of fishing rod on one of the large fishing trawlers and then he decided to go to the top of the mast of one of the small sailboats moored just off the docks.

Ollie and I got some photos of the osprey before he and momma had to head home. But not before we thanked Heather again for going to pick up the wheelchair for her dad. We will keep searching for a transport chair that is lighter weight, but at least we have something we can use right now if needed. Thank you, Heather.

The time with Patsy and Joe is flying by so quickly. I’d love to show them more of the Cape, but Mark really needs to be sitting with his feet up most of the day due to the edema. The visiting nurse comes tomorrow to see Mark, he has his second infusion of Keytruda on Thursday, Justin, Jo, and kids arrive on Friday, and Patsy and Joe leave on Saturday. Joe would love to take the ferry across to Martha’s Vineyard, but I’m not sure when and how we can work that into the schedule. In fact, we haven’t seen Island Queen run since Saturday due to the high winds. The car ferries from Woods Hole to Martha’s Vineyard are running, so maybe that is a possibility. Whether or not we get to do any exploring, we will enjoy our time together.

Life After Windbird, Day 24: Stormy Labor Day
Date: Monday, September 5, 2016
Weather: Overcast and Very Windy with Periods of Rain; High in the low-70’s F
Location: At Home in The Studio #8, Falmouth, MA

Hermine provided us with a stormy Labor Day, but conditions were never too bad. There was enough wind to blow our grill (on casters) across the deck, but otherwise things were pretty benign. Candi, Char, and Lynn came over early this morning on their way out of town to say their farewells.

We had a wonderful visit with them and thank them so much for coming to visit with us. After proper farewells, we sat in the apartment and watched the wind blow. The wind was probably a steady 20-25 mph with blustery gusts. When my sister Patsy and I went out to do a wind check, we decided to move deck tables and chairs inside. Our new tall chairs were going to make it a bit crowded inside, so I laid them down on their backs in the far corner of the deck that is most protected. When we went back inside, I helped Joe track an Amazon order he thought he made weeks ago and had never been delivered. He found out last week that he actually has two Amazon accounts and we talked to Amazon about getting rid of the old account. All of this required getting into his G-mail on my computer and evidently he had changed his password and didn’t write down the change—a problem we all seem to have continually. We had to change the password again, and in the end, we were successful with a little technical advice from Heather and Jed. In the middle of fixing Joe’s problem I headed over to the Goldstones to get the chicken broth Heather had made after our Sunday night dinner. I wanted to add veggies to it to make chicken mineral broth and her stove was tied up with canning marinara sauce. I took my computer with me to make sure I was doing things correctly. Nice to have tech support in the family!

During the afternoon the wind picked up and the rain started. But as the evening progressed, the wind and rain subsided. It looks like the storm is headed back to the west before dissipating late Wednesday or Thursday. So it looks like maybe the worst of this tropical storm has moved on just leaving us with overcast, windy weather for the next or so. Tomorrow is the first day of school for the Goldpebbles and I know their teachers would be very happy if there is no rain and the kids can have outside recess. As a first grade teacher of many years, I know indoor recess on the first day of school is just no fun for anyone.

After having a good day yesterday, Mark did not have a good day today. In fact, he said he felt worse than he has for a very long time. Another new pain medication arrives tomorrow. Maybe that will be the magic pill. Or maybe he was just exhausted after a big day and will be back on an even keel tomorrow regardless of the new pain med.

Life After Windbird, Day 23: Great Family Day
Date: Sunday, September 4, 2016
Weather: Sunny with High Temp in the upper-70’s F, Very Windy
Location: At Home in The Studio #8, Falmouth, MA

Today was a great family day. Nieces Lynn and Candi, and Candi’s husband Char, arrived around 9:30 am.
They live north of Boston and came down to spend the day. They are staying at the Admiralty Inn tonight and will come over in the morning before heading home. Hopefully the holiday traffic and weather will not be too bad. Hermine is headed our way and will bring sustained winds in the 20’s tomorrow with possible gusts up to 50. And of course, there will be rain. So the trip back to Boston could be tough, but we certainly enjoyed our time together today. We didn’t do anything fancy. We just spent time together. I made granola as that was a national emergency. I cannot recall ever running out granola, but we ate the last a couple of days ago and Mark was really missing it. That is what he eats for his first breakfast at 7:30 am. We had a nice lunch together and then Candi and Char went on a walk with Mark and he actually took them all the way through the next door boat yard. He hasn’t been able to do that since Ed and Lynne were here last week and he really enjoyed the little jaunt.

Then while Mark and Joe took a power nap, the rest of us drove down to the beach. It was quite windy, so Patsy, Lynn, and I headed home while Candi and Char stayed and walked home.

By the time we got home, it was past time for me to take off to Heather and Jed’s to check on the status of the marinara sauce and help get dinner together. The marinara sauce still needed to cook down some more, so we put off canning until tomorrow. Sounds like a perfect day for an indoor activity like canning. Patsy, Joe, Mark, and I will stay right here and watch the storm from the comfort of our living room.

Life After Windbird, Day 22: Patsy and Joe Arrive—Hurray, Hurray
Date: Saturday, September 3, 2016
Weather: Partly Sunny with High Temp in the upper-70’s F
Location: At Home in The Studio #8, Falmouth, MA

We are so happy that my sister and brother-in-law, Patsy and Joe, arrived today. We are looking forward to a wonderful week of visiting together. They flew into Logan in Boston and I drove up to meet them. Thankfully their daughter Janet had arranged for them to wheelchair assistance from the gate to the baggage claim. I thought that was the case, but wasn’t sure. So when I arrived at the airport, I first drove through Terminal A to check things out. I stopped to ask a state policemen where I should park. I explained that I was picking up arrivals with wheel chair assistance but made it clear that they were not wheel chair bound, just challenged with long airport walks. He started to tell me that I should park in Central Parking, walk a long way back to the terminal, meet them to see if they should need assistance, and then go back to Central Parking and drive to pick them up. Half way through that scenario, he looked at me and told me to just go park beside a vehicle in a special parking area next to Terminal A. I was elated and thanked him profusely. But even parking so close to the baggage claim area, it was still like running a marathon to go to the Southwest ticket counter to get permission to go to the gate to meet them. And then I am sure I walked at least half a mile to the gate. I didn’t quite get there when I saw Patsy and Joe in wheel chairs being pushed by Southwest employees. We hugged joyously and then continued the half mile walk back to baggage claim. But I must give both Southwest and the state police and big thumbs up for being so helpful. And our good luck continued as we had absolutely no traffic on the way home. Mark was waiting for us with a smile, but he had a bit of a rough day with more pain than usual. Hopefully tomorrow will be a better day for him.