Life After Windbird, Day 21: Celebrating the End of Summer Vacation
Date: Friday, September 2, 2016
Weather: Clear with Temps in the mid-70’s F—Beautiful Day
Location: At Home in The Studio #8, Falmouth, MA

Today was a day of celebration in honor of the end of summer vacation for the Goldpebbles. School starts on Tuesday. First thing this morning, Ollie and Jonah really wanted to go to the Falmouth Sports Exchange to buy soccer cleats. All three boys are looking forward to the beginning of the fall soccer season. Sam already has a pair of cleats that fit, so the other two just had to have what ‘big’ brother has. So we did that and then we headed to the beach. We decided to go to the beach closest to home as the boys knew the Keefe’s from next door would be there. When we arrived, the Keefe’s were already there, and you would have thought these kids hadn’t seen each other for weeks. Actually, they practically live together, but they were so excited to spend the day at the beach together. Jed arrived at 1 o’clock so I could leave and take Mark to his appointment at the oncology center. And Jed was there for another three hours. I think everyone had a great day. And I must say the weather was just absolutely perfect. It looks like after a summer with almost no rain, we are going to have rain for the next few days. But we got our beautiful weather for the last hurrah. And we ended the day with a sushi dinner together. Perfect!

The meeting with the pain management specialist was very informative. We’ll have to wait to see if any of her suggestions work for Mark, but she was knowledgeable and thorough. Actually she is a pain management specialist for patients at the Falmouth Hospital as well as the cancer patients at the Hematology Center, so for sure she has had lots of experience. But every person is different, and she cautioned that we need to move carefully and slowly in making changes. So we have no brand new pain management program, but we do have a plan for increasing some current medications and adding some new ones. So we’ll just have to wait to see how the changes affect Mark’s situation. In the meantime, Heather and Jed recommend that we get a wheel chair for Mark so we can take him on those walks he loves so much. He is just not strong enough to walk down to the beach right now, but with a wheel chair I could “wheel” him around so that we can enjoy the September weather together. Sounds like a good plan.

Life After Windbird, Day 20: Pete’s Dragon
Date: Thursday, September 1, 2016
Weather: Rainy Day, Cooler with High Temp in the 70’s F
Location: At Home in The Studio #8, Falmouth, MA

The highlight of today was taking Jonah and Ollie to see Pete’s Dragon in 3D. Sam doesn’t like to watch movies, so he went with his dad on a trip to Hyannis. But Jonah and I both agreed that Sam would have enjoyed this one. Jonah and Ollie really enjoyed it and so did I. It was a great way to spend a rainy afternoon. Ollie wore his new fireman rain boots to the movie and as we walked back to the car afterwards, he did a little puddle jumping. So cute.

When we got home, Heather surprised us by greeting us at the door. She came home a little early to do some organizing—getting the house ready for the start of school next week. I’m having trouble believing that today was the first day of September. Summer flew by so quickly.

When I got home, I found out that Mark had spent much of the day dealing with a new kind of pain. Each day this week the pain in his abdomen has increased, but today it was a sharp, pinching pain instead of the constant, dull pain he has been having. He called his Cape oncologist’s office to try and get an appointment tomorrow with Dr. Aviles. What they suggested was a meeting a nurse specializing in pain management. So my plans with the Goldpebbles for our end-of-summer all day beach day, have to be adjusted. I think Jed is going to meet us at the beach and take over child care when I have to leave to take Mark to his appointment. Tomorrow is the only totally clear and sunny day in the forecast for the next week, so whomever they are with, I hope it is a fun day for Sam, Jonah, and Ollie. I’m definitely looking forward to a little beach time myself.

Life After Windbird, Day 19: Walking the Balance Beam
Date: Wednesday, August 31, 2016
Weather: Mostly Cloudy and Humid, High Temp 80 degrees F
Location: At Home in The Studio #8, Falmouth, MA

If I were a gymnast, I don’t think balance beam would be my favorite. But these days I do feel a bit like I am walking on a balance beam and not handling my performance very well. I got up this morning and had ‘early’ breakfast with Mark. He then went back to bed and I stayed up waiting for the visiting nurse to call to set an appointment time for today. No one called and at 10 am, The Studio maintenance person came to install the new toilet in our master bath. He got it installed but needed to go out and get a longer supply line. The old toilet was low profile and the new one is normal height, therefore the new one needed a longer supply line. Duh! Should have thought of that, but didn’t. Finally at 10 minutes to 11 am, the visiting nurse called and said she could be here in 30 minutes. It took an hour, so it was almost noon when she got here. I was supposed to get over to Heather and Jed’s sometime before noon so Heather could get some work done today, but I didn’t get there until almost 1 pm. When I did get there, it was great to see Heather and the boys after their week away in Maine. Loved seeing those smiling faces.

I spent the afternoon at the Goldstones and headed home in time to fix dinner for Mark. I kept texting him during the afternoon to see how he was doing and he seemed fine. So tomorrow and Friday, I will continue walking that balance beam providing childcare for grandkids and providing care for Mark. I’m hoping I can intertwine the two and involve Granddad in some of our activities. I can’t believe the summer is almost over and the boys will be back in school next week. I love the time I get to spend with them in the summer and will look forward to Camp Oma 2017. But this weekend I do a turn around on the balance beam and start welcoming visiting family. Both Mark and I are really looking forward to having my sister and brother-in-law here. We have had extended visits at their home, but this will be the first time we have had them visit us for a full week. We really can’t wait. And their visit will be followed by our son and daughter-in-law and our two beautiful grandchildren from Puerto Rico. Good times ahead.

Life After Windbird, Day 18: The Bookcase Project
Date: Tuesday, August 30, 2016
Weather: Cooling Down, High Temp 78 degrees F
Location: At Home in The Studio #8, Falmouth, MA

The bookcase project was the focus of the day. The new toilet did not get installed because the maintenance person here did not show up this morning. He called and said he had to wait for the delivery of a washer and dryer for another apartment. Later he called and wanted to reschedule for late afternoon or in the morning. Mark took the call and wet the time for tomorrow morning. We’ll wait and see if that really happens. Mark also has a visiting nurse appointment in the morning. They will call around 9 am and set the time. And as soon as we have that meeting, I will be off to see the Goldpebbles. Heather called tonight saying they were on their way. She and Jed both have to work tomorrow, but Heather can wait and go in late morning giving me the time to meet with the visiting nurse. I’m really hoping the nurse will have some suggestions for us as Mark continues to struggle with pain and nausea. The pain is constant so we have to make some change in the pain medication regimen.

I started my morning by going to a routine appointment with my chiropractor and then I stopped by Heather and Jed’s to water the garden and do a few things in preparation of their return. When I got home, Mark was very weak, but he wanted to help with the installation of the new bookshelves in the guest bedroom. We had a full size bookshelf already in place and yesterday added two narrow bookshelves—one for the corner and one on the other side. So I needed to find a way to connect the shelves. I talked to Mark about this asked him if he thought I could buy narrow hinges to do the job. He thought it would work, so I went back out to get the hinges. When I returned, I provided the strength to get the bookshelves in just the right position and Mark drilled the holes and screwed in the hinges. It worked perfectly and then I spent the rest of the afternoon putting all of the books from the full-size bookshelf back on the shelves. Last night I had to take all of those books off the shelf so that we could maneuver to connect the new additions. So those books went back on the shelves and I was able to add all of my photo albums and all of the notebooks from Windbird on the new shelves. This is something I have really wanted to get done and I am very happy with the results. This is the last of any planned projects, so now we can just relax and enjoy our upcoming visits with family. I have three days of Camp Oma before Patsy and Joe, my sister and brother-in-law, arrive on Saturday. Can’t wait to see them.

Life After Windbird, Day 17: A First for Me
Date: Monday, August 29, 2016
Weather: Sunny and Hot, High Temp 89 degrees F
Location: At Home in The Studio #8, Falmouth, MA

Today was a work day around this apartment and one of the things I did was assemble two IKEA bookcases all by myself. That was a first for me. I have watched Mark put together many IKEA pieces for Heather and Jed, most of those when Sam was barely old enough to hold a screwdriver and help. But watching and doing are two very different things. I also had to haul the boxes from the car to the apartment by myself which was no easy feat, but Mark is just not able to lift anything heavy. But he is great coach, giving me tips on the best way to do these things. And believe me, I need a coach. When I was putting the first bookcase together, Mark had to stop me numerous times because my interpretation of the directions was not correct. I know it is harder for him to sit and watch me do these things than it is for me to do them. He has always been the builder and the Mr. Fix-it in this family and I know he would love nothing more than to be able to just do the things himself. But hopefully he doesn’t underrate the need of a good coach.

Another accomplishment today was getting the huge, heavy box with the new toilet in it from the car to the apartment. We were going to wait until Heather and Jed get home to help carry it in, but Mark called the maintenance guy here this morning and he said he would be able to install the toilet tomorrow. So I started figuring out how I could move the box. Actually getting the box out of the car, onto the hand cart, and pulled to the deck was fairly easy. But then I had to open the box and take out the water tank before attempting to carry the box up the four steps to the deck. Removing that one piece made the box light enough for me to handle. So that was another success.

Another job was to take out all the apartment window screens and wash them and the window sills. That’s a job I know how to do but wish I didn’t! I started the job the first day we were in the apartment, but after that day, I’ve never had the time to finish. So today was the day. The Goldstones will return home tomorrow night, or maybe Wednesday morning, but in either case, tomorrow will be my last chance to finish up some of these little work jobs around here before my sister and brother-in-law arrive on Saturday and then Justin and Jo, Ziggy and Coco arrive the following Friday. The next two weeks will be totally dedicated to just having fun with family, so I’ll finish getting ready tomorrow and then have three days of Camp Oma before my sister arrives. I sure hope the Goldpebbles come home from Maine wanting to go to the beach. I have missed the boys and our beach days.

Today was another struggle for Mark. We tried adjusting his pain meds so he was taking less, but that experiment did not work. So he back on the schedule prescribed by his new primary care and we are just going to have to deal with the resulting weakness and unsteadiness on his feet. That alternative is extreme pain, so that’s not an option. The edema in his legs and feet is much better today. Riding in the car yesterday was a disaster because his feet were not elevated. So hopefully now that he is back on the prescribed pain med schedule and can sit in his comfy recliner, he’ll get back on an even keel. When I am not here, he is restricting his walking to the deck, but thankfully it is big enough that doing a few rounds in between resting in the recliner seems to be just the right amount of exercise for now. He didn’t feel like going for a longer walk today, but hopefully we will get back to that soon.

A note to my sister if she is reading this. The hot weather we have had is about to end for a few days. By the time my sister arrives on Saturday the daytime temps will be back down into the 70’s and it will dip into the 50’s at night. That’s perfect Cape weather but it is going to feel downright cold after being hot for so long. Anyway, the message for Patsy and Joe is to pack accordingly.

Life After Windbird, Day 16: Shopping Day—Bad Idea
Date: Sunday, August 28, 2016
Weather: Another Perfect Summer Day, High Temp 80+ degrees F
Location: At Home in The Studio #8, Falmouth, MA

When Mark got up for his first breakfast of the day, he announced that he was feeling good and would like to go on the shopping spree we have talking about for a couple of weeks. The short story is that we did and it was a really bad idea. We bought the things we needed, but the trip was just too much for Mark. He ended up with increased pain, terrible edema in his feet and legs, and worse nausea than he has had to date. But the one thing he really wanted was a new toilet for the master bathroom and he got that.

Living on the Cape is wonderful, but shopping possibilities here are really limited. Falmouth has a downtown with a great hardware store, a decent but expensive shoe store, a nice children’s book store, and the rest of the stores are just for tourists. Then we have a ‘mall’ with a grocery store, Michael’s, and a Walmart that never has anything you need. With summer traffic, you can drive to Hyannis in about 45 minutes and get most things you need, or you can drive off the Cape toward Boston for about 60 minutes to a Home Depot, a Costco, and an IKEA all in one spot. We wanted more bookshelves from IKEA, the new toilet from Home Depot, and some stock supplies that I am out of from Costco. Mark’s goal was the new toilet because he swears that he is going to fall using the current one. It is a low profile toilet which means it is a few inches shorter than a normal toilet. I have fought this idea because the one that we have is gray which matches the bathtub and the tile. But now we will have a nice, big, bright white one. Not beautiful, but I certainly don’t want Mark to fall. The thing is so heavy that I could barely get it into the car, so it will stay right there until Heather and Jed get home mid-week and help me carry it in. We left Home Depot and headed to IKEA for the bookshelves. But Mark was really unsteady on his feet, so we headed straight to the in-house restaurant to get him something to eat. He then sat in one of the comfy chairs in a display area and waited for me to do the shopping. There were more people in IKEA today than I have ever seen there before. I had to wait in a line for over 20 minutes just to get a cart and I have never had to wait before. But we now have more bookshelves. Mark stayed in the car while I shopped at Costco. One of the things I wanted to buy there was a Vitamix for making smoothies for Mark. I got that and a few other staples and headed home as fast as I could. Mark has been asleep ever since we got home except when I woke him up for dinner. So I think we’ll turn in early and hope that he can recuperate overnight. But there will be no more major shopping trips for Mark. Going for short walks to keep the circulation going, sipping yummy smoothies made in the new Vitamix, getting lymphatic leg massages, and sitting at zero gravity in his recliner are the things this ‘doctor’ orders.

Life After Windbird, Day 15: Happy 50th Anniversary to Terry and Olivia
Date: Saturday, August 27, 2016
Weather: Sunny, High Temp 84 degrees F
Location: At Home in The Studio #8, Falmouth, MA

The activity level stepped up a bit today. We didn’t do much, but it was not a do-nothing day. While Mark slept in, I went over to Heather and Jed’s to water the garden. While the sprinkler was doing its job, I worked on my computer. Since we were not able to fly to Myrtle Beach this week to meet with Windbird’s new owners, I offered to write down directions for the boat systems. Easier said than done. But I got a good start this morning and will continue tomorrow morning. Windbird’s new owners had a bit of a rough week on Windbird with a lightning strike that took out most of the electronics and then a failed attempt at a first sail because the engine was acting up. These are not things that you want to happen when you arrive at your boat for the first time as the new owners. But Sam and Dawn are young and enthusiastic, so hopefully they are not too disappointed. I got a huge laugh out of Sam’s description of being at Windbird’s wheel this week. He said she turns like a Mack truck. And indeed she does. He has always chartered Beneteaus, and a thankfully a Tayana (Windbird) is no Beneteau. But to their credit, Beneteaus do turn on a dime. But after chartering a Beneteau in the Whitsunday Islands in Australia in the mid-1990’s, I promised to never step foot on one again. Unlike the low Great Barrier Reef islands, the Whitsundays are volcanic islands and some have quite steep cliffs. The down draft from those cliffs actually put us on our side in the Beneteau and that was the end of my love of Beneteaus. But back to the activities of the day, after I had let the sprinkler water the garden for an hour, I headed back home.

Mark is continuing to struggle with nausea and energy level. The very worst thing is that he is unsteady on his feet which makes walking difficult. When I got home from Heather and Jed’s, we did walk out to the mailbox and back, but that was as far as he could go today. We were invited to the 50th anniversary party for our friends Terry and Olivia White, but Mark was just too weak to go. I made sure he was comfortable and then I left for a couple of hours to attend the party. It was a wonderful celebration and the food was fantastic. They had Indian food in honor of Olivia’s homeland and Texas fare in honor of Terry’s homeland and the place where they met and lived a great deal of lives. Olivia was wearing the beautiful sari she wore on her wedding day and Terry was in the black jacket he wore.


And their best man and maid of honor were there and the maid of honor was in the same thing she wore on their wedding day. Unbelievable. The place was filled with friends that they have had for over 50 years and the stories they told were quite entertaining. Happy Anniversary to Olivia and Terry!

As has been the case over the past few days, Mark felt better during the evening hours than he had all day. Tomorrow we are going to go back to the pain medication regimen we were on before the unsteadiness on his feet started and see if that helps. If the pain in his abdomen is too severe, we’ll have to come back to the present plan, but we think the change backwards is worth a shot. If the unsteadiness goes away, at least we will know that is caused by the increase in pain meds. Then we’ll just need to figure out if there is another way to deal with the pain.

Life After Windbird, Day 14: Repeat of Do-Nothing Day
Date: Friday, August 26, 2016
Weather: Partly Sunny, Afternoon Showers, Hot and Humid
Location: At Home in The Studio #8, Falmouth, MA

Today was a repeat of yesterday—basically another do-nothing day. I guess since I have been providing child-care for the Goldpebbles this summer and they are now on vacation, I am on vacation as well . . . and enjoying the lazy days with Mark. We met with a nurse from the Visiting Nurses Association this morning and got Mark signed up for a first round of palliative care. This means a nurse will come once a week just to check on Mark to see how he is doing. But it is really up to us through research and trial and error to find ways to help him through this tough time. He has a lot of pain in the abdominal area and the pain meds are only half-way doing the job. What I think we are finding that is the more he eats, the better he feels. His worst time is in the morning after going without food all night. His best time is in the evening after eating a big dinner. So we are going to work on upping the amount of protein he is getting early in the day and see if that helps. Cooking the right foods for him to eat is almost a full-time job, so I guess I had better quit saying that I do nothing. I shop and cook, shop for more food and cook some more. And we take walks. We have definitely found that the edema in Mark’s legs and feet is helped by walking, but walking is hard as he has very little energy. But we will keep working to figure out the best routine and best diet for now.

Life After Windbird, Day 13: Do-Nothing Day
Date: Thursday, August 25, 2016
Weather: Mostly Sunny, High Temp 82 degrees F
Location: At Home in The Studio #8, Falmouth, MA

This was a do-nothing day here and it was delightful. Convinced me I should run for Congress and do-nothing every day! But unlike Congress, even when we ‘do nothing’ around here, we still get a few things done. Mark had a 10 am brain CT scan and then he returned home to rest. The scan was done to assure that the cancer has not metastasized to that area. No one thinks that is the case, but in order to properly treat the recent unsteadiness on his feet, the chance of metastases to the brain has to be eliminated. We won’t have results until sometime next week, so life will go on as usual until then. The swelling in his legs and feet gets a little worse each day, so today we researched to remind ourselves of the things we should be doing to help. Getting his feet above his heart level is important, but it is also important for him to get out for short walks as often as possible, massage his legs and feet, eat foods high in potassium, and eliminate salt intake. And add to all of this a recent resurgence of nausea and it is enough to keep us busy 24/7 just figuring out what to do next to make Mark stronger. Tomorrow morning we meet here at home with a nurse from the Visiting Nurses Association. This nurse will be coming here to check on Mark on a regular basis to make sure he is getting the best services available.

Life After Windbird, Day 12: Visitors Out, Visitors In
Date: Wednesday, August 24, 2016
Weather: Sunny, High Temp 81 degrees F
Location: At Home in The Studio #8, Falmouth, MA

This morning Ed and Lynne headed back to Nyack. We had a wonderful visit, but unfortunately all good things must come to an end. I wish we lived closet together so we could visit more often, but we will just have to live with the memories of this visit until we can get together again. So that’s the visitors ‘out’ portion of the title of tonight’s log.

A couple of hours later, Bob and Beth Lux arrived for lunch. That’s the visitors ‘in’ portion of the log.

Bob and Beth drove down from Concord, New Hampshire, to see their boat Rhodora. Rhodora is on the hard across Buzzards Bay in Mattapoisett. They spent the night there last night and then drove over here today. We enjoyed catching up over lunch and then all too soon, it was time for them to head north and for me to head out to a chiropractor appointment.

On my way home from my appointment, I drove to Bruce and Jane Woodin’s to water plants while they are away visiting with their daughter’s family. Then I drove to Heather and Jed’s to put out their trash and recycling. They didn’t ask me to do this, but I know they will appreciate that I did it. Tomorrow morning Mark has a CT scan of his head to make sure the cancer has not advanced to that region. His primary care physician ordered this scan just to make sure Mark’s current instability on his feet is not linked to cancer advancing to the brain. No one thinks that is really the case, but the possibility needs to be officially eliminated so the instability can be properly treated. Our job in the next few days is to just sit tight and hope we can get some of Mark’s issues under control.