Day 176, Year 11: Exhausting Hospital Day
Date: Friday, April 15, 2016
Weather: Mostly Sunny Day—Frost on the Windshield Early AM
Location: At Home in Evergreen Preserve, Lowell, MA

It was an exhausting day at the hospital. We left here at 5:45 am and returned at 7 pm. Mark slept through most of the day, but we did take a few walks within the hospital to visit the Healing Garden and the Atrium—spots of serenity in a huge hospital like Mass General. When we got home, Mark was feeling nauseous and could eat only a tiny bit of dinner before going bed. When we got home from the Cape last night, we had a couple of Amazon deliveries. One was an infuser and some peppermint oil. Mark thinks I have lost my mind, but credible sources say infusing the peppermint scent in the air can reduce nausea. I sure hope it works for Mark.

Earlier today I was certain we had made up our minds about our housing choice and it was the apartment on Falmouth Harbor. Then tonight we got an email from the owners of the rustic house in the woods with an offer that would be hard to refuse. But even though it would be a much better deal financially, both of us are still tending toward the apartment that feels like being in a boat on a dock. We really miss Windbird. We’ll have to name that apartment Landbird.

Day 175, Year 11: Looking for a Land Home
Date: Thursday, April 14, 2016
Weather: Mostly Sunny, but Still Cool
Location: At Home in Evergreen Preserve, Lowell, MA

We have been checking Craig’s List, Realtor.com, and Zillow for housing possibilities. Last night Jed introduced me to the Woods Hole Oceanographic Institution (WHOI) housing list as well as the Marine Biological Lab (MBL) list. He had checked the WHOI list for me before, but I thought you had to be an employee to get into the site. Not so. Anyone can access it. So last night we added a number of contacts to our list and sent emails. This morning we got email responses from some and I called others. Then Mark and I hit the streets. We ended up with three serious choices, all of them really appealing to us. Two were Craig’s List and one was a WHOI listing. At the end of the day, we have a totally different problem than we did yesterday when we weren’t sure we would find anything that met with our approval. At the end of this day, we have three possibilities and we are having a tough time deciding which one we love the most—Cape Cod gingerbread, rustic home in the woods, condo right on the Falmouth Harbor that is super close to everything. The Cape Cod gingerbread is a lovely two-story gray Cape with a wrap-around porch and a huge yard only a stone’s throw from the beach. The negative is that it is a full 20 minutes north of Falmouth—closer to Boston but further from Heather, Jed, and kids. But the short walk to the beach is so appealing and the house has tons of storage space and is in great shape.

160414 Day 175 Cape Cod, USA–Gingerbread Cape Cod

The next house is about five miles north of downtown Falmouth and is nestled on more than an acre of wooded property. It is a dark brown rustic two-story with a vegetable garden that desperately needs attention. It is in another fantastic location—close to the beach and within walking distance to the neighborhood market, library, and bike path. We didn’t get to go inside as the owners are in Africa, but this just came on the market yesterday and they got back to me immediately. We’d love the garden and I know the Goldpebbles would love roaming the woods.

160414 Day 175 Cape Cod, USA–Rustic Home in the Woods

The third favorite we explored is a Cape Cod grey cedar shake ground-level apartment right on the Falmouth Harbor. It has a mostly glass front to allow you to really enjoy the view and a huge covered front porch to sit on and enjoy life. It is smaller than the other two choices, but has two-bedrooms and two bathrooms and a constant view that we love—glistening water and boats. It is right in the center of downtown Falmouth and literally on the way to everything—to the beach, to Woods Hole, to Heather and Jed’s, to the grocery stores, and right across the harbor from West Marine!

160414 Day 175 Cape Cod, USA–Waterside Cape Cod Apartment

Decisions, decisions. Which choice do you think we will make? We have tossed around the pros and cons and at this moment both of us are leaning toward the condo on Falmouth Harbor. Mark says it just feels like home. It is as close to living on a boat on land as you can get. So even though it is the most expensive choice, I have a feeling it is the one we will make. It is not available until June 1, but hopefully even if this condo sells right away, closing won’t happen until close to the first of June. How lucky and relieved we feel tonight that we have three fantastic choices.

Day 174, Year 11: Loooooooong Day at the Hospital
Date: Wednesday, April 13, 2016
Weather: Partly Sunny and Cool
Location: At Home with the Goldstones, East Falmouth MA

Today ended up to be a very loooooooong day at the hospital. We were to be there at 10 am for an 11 am biopsy, have lunch, and be off for the Cape. BUT, we had to wait until 1:30 pm for the biopsy and didn’t leave the hospital until 2:30 which put us in heavy traffic. As far as I can tell, the only time that is not rush hour in and around Boston is from 10:30 to 1:30. At all other times the traffic slows things down considerably. Even though Mark hadn’t eaten since last night’s dinner (required fasting for what reason we don’t understand), we headed straight out of town and stopped to eat once we were out of the worst traffic. Actually we stopped at IKEA and ate there because we also wanted to look for some sort of storage unit to use in Lynn’s condo while it is being shown. The realtor didn’t insist, but said that it would be much better for showing if the kitchen counters are cleared. The juicer which is YUGE and the blender that I use daily don’t fit in the cabinets, so there is no place to ‘hide’ them. The same is true of our pressure canner and a few other things that I have been keeping in a trunk in the kitchen. A storage unit would look much nicer, and hopefully it will be something we can use when and if we find a place to live. Because we were running much later than we expected, we looked quickly and moved on. We’ll continue that search this weekend.

One good part of the day was that the biopsy was quick and easy. They just sprayed lidocaine on the area of his abdomen where they inserted the needle to suck out the tissue needed. No pain, no fuss, and no reason that I can think of that he needed to fast for all those hours. It is bad enough that he has to fast six hours every day while taking the chemo pills. He is never going to gain weight with all of this fasting.

The other really good part of the day was arriving here and seeing Sam, Jonah, and Ollie, as well as Heather and Jed. Tomorrow we look at rental possibilities and on Friday we are back at Mass General at 7 am for another loooooooong day.

Day 173, Year 11: Introducing Mr. Wildlife
Date: Tuesday, April 12, 2016
Weather: Overcast and Rainy until Late Afternoon
Location: At Home in Evergreen Preserve, Lowell, MA

For years I have been the wildlife photographer in this family, but suddenly Mark has become Mr. Wildlife. Yesterday he went for a couple of walks and communed (and took photos) of the resident geese and today he found a friendly beaver. I never seem to see these things when I walk with him, but I am just going to have to walk more and look harder. Or maybe I’ll just turn my camera over to Mark. He held his own today, feeling no better, but no worse. Unfortunately, tomorrow will interrupt the pattern and who knows how he will feel. He can have nothing to eat after 2 am, so in reality he has probably had his last food until after the biopsy at 11 am tomorrow morning. We will eat lunch after the biopsy before heading to the Cape and then try to get food into him every couple of hours. His schedule is very challenging—no food from 8 am to 11 am every day and again no food from 8 pm until 11 pm. And just when we get into a routine, he has a day like tomorrow and we start over again. Fun, fun.

We met with my niece Lynn and her realtor late this morning. The realtor will return on Tuesday of next week to take photos and on Wednesday the condo will be officially on the market IF the roof work is done on this building. It doesn’t look like it needs a new roof, but all of the units are getting one. The work on our building was supposed to start on Monday the 4th, but it has been snowing, and then raining since then, so the work has been postponed. It is supposed to be sunny for the next few days, so maybe the work will finally get done. But with this place on the verge of being on the market, it is definitely time for us to get serious about a place to live on the Cape. We are going down tomorrow after the biopsy and will see the apartments Mark thinks sound promising on Thursday afternoon. Both units are in the same complex next to Falmouth Harbor. Mark likes the idea of being in the center of Falmouth and near the harbor. There are two apartments—one waterside and one facing the street—one is overbudget and the other is within the budget. Guess which is which! Sure hope we like the street-facing apartment as much as Mark thinks we will.

160412 Day 173 Cape Cod, USA–Beaver in the Neighborhood

Day 172, Year 11: Hangin’ in There
Date: Monday, April 11, 2016
Weather: Mostly Cloudy, High 60, Low 50 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

We are hangin’ in there. Mark is no better, but that means that he is no worse. He took a couple of walks today and enjoyed the wildlife. He watched either a beaver or a muskrat swimming in the stream beside the road and he took some pictures of our resident geese.

160411 Day 172 Cape Cod, USA–Resident Goose

We continue trying to find things that he would like to eat. The nausea is basically in control right now, but eating is a chore for him. Add to that the fact that he has zero energy. This morning we got a call from Mass General telling us that Mark is scheduled for a liver biopsy on Wednesday. This is part of the trial, but we thought we’d have a little more warning. We had hoped to drive to the Cape tomorrow to look at rental possibilities, but Mark is suggesting we now go right after the biopsy. I tried to convince him that doing that is a very bad idea, but he is being insistent. There is an apartment in downtown Falmouth on the harbor that he is very interested in seeing. I made the appointment for Thursday but we can always cancel that. On Friday morning he has to be at Mass General at 7 am for another 12 hour day. What a challenging schedule! We’ll just take one day at a time and see what we can really do.

The realtor comes here in the morning and will meet with us and my niece. Lynn and I worked again this afternoon and carried out three more bags of ‘stuff’ to be tossed. We have made fantastic progress but the end is still not within sight. But we think things look good enough to put this place on the market. We’ll find out tomorrow what the realtor thinks.

Day 171, Year 11: A Perfectly Boring Day
Date: Sunday, April 10, 2016
Weather: Mostly Sunny, High 50’s, Low 30’s F
Location: At Home in Evergreen Preserve, Lowell, MA

So far, go good. Mark has had a perfectly boring day. I never thought I would say something like that and have it be a positive statement. But these days, boring is good. Mark doesn’t feel great, but he sure feels better than he did yesterday. The nausea meds seem to be helping him hold his own and he was able to eat first and second breakfast AND dinner AND snack in-between. Mark was also able to take two short walks. If he can make it through the night without being nauseous, tomorrow we’ll try to repeat today.

I spent most of my day helping my niece Lynn. I went to her new apartment and helped measure and imagine what furniture she might be able to fit in. She moved from the condo we are staying in to her new apartment in January but left almost all of her furniture, a whole room full of boxes of ‘stuff’, and even most of her clothes here. By measuring and imagining, we were able to find a way to fit in most of the furniture items that she would like to move to the new apartment. Then we came back here and worked on going through her boxes and boxes ‘stuff’ that need to be sorted. We came up with five bags of paper to be recycled and one big bag of clothes to go to Goodwill. We’ll make one more major attack tomorrow and then on Tuesday the realtor is coming to meet with Lynn and with us. We knew when we moved in that the condo would be put on the market in April or May and we are ready a bit earlier than we thought possible. The realtor wants to meet with us to discuss showing the condo while we are living here. After that meeting, it is possible that we will then head to the Cape on Tuesday afternoon and return here Wednesday evening. We would make the trip in order to take a look at a couple of possible rentals for us. But we have to first see how Mark does tomorrow. If he has a repeat of today, we’ll probably go to the Cape. But if he feels more like he did yesterday, then we’ll stay put and try for more ‘boring’ days like today.

Day 170, Year 11: Ups and Downs
Date: Saturday, April 9, 2016
Weather: Mostly Sunny, High Temp 49, Low 25 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

I’m really waiting for a time we have two or three ‘boring days’ in a row where everything goes smoothly. But that doesn’t seem to be part of the plan right now. We are in a period of ups and downs. Last night Mark felt good and because of that we cut back on the nausea meds. And we were so hopeful this morning because he felt great and was able to eat a big breakfast. We went for a walk in the glorious sunshine around noon, but things went downhill from there. In fact, he wasn’t able to eat any dinner at all. So we are upping the nausea meds again. We will just have to wait and see how he feels in the morning and adjust things accordingly.

The learning curve on my end is steep. I am constantly searching for ways to keep Mark well-nourished when he doesn’t feel like eating. We’ve added juicing to our repertoire, as well as making various kinds of smoothies. And today I added making a skin moisturizer. I mentioned in a previous log that Mark is starting to get the rash that comes as a side effect of the Cetuximab. From my reading, the best moisturizer for his face is a combination of coconut oil, shea butter, and vitamin E and lavender oil. I had the coconut oil and shea butter as I had purchased them last spring when the rash got so bad. But as soon as I bought them, the rash went away. But when we left Windbird in South Carolina, I threw them in the bag of things to take with since I knew the trial included the same type of biologic that caused the rash last winter. So with some of the ingredients on hand, this afternoon I whipped up a homemade moisturizer. My vitamin E oil is on Windbird in South Carolina and I’ve never used lavender oil. So I’ll have to add those to our stock. In the meantime, I’m happy to report that the coconut oil and shea butter combination helped immediately. And somebody help me. What is shea butter?

Day 168, Year 11: Happy Birthday, Ziggy
Date: Thursday, April 7, 2016
Weather: Overcast with Pouring Rain, High Temp 56 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

Seven years ago today, Windbird left the Boat Lagoon in Thailand and sailed to the island of Phi Phi Leh. We were headed to Malaysia so we could fly home for the birth of our second grandchild. But just before leaving the dock at the Boat Lagoon, Mark checked our email and found that Jo was already in labor. This baby was going to arrive two weeks early. We didn’t get the email announcing his birth until the morning of April 9 and that night we celebrated his birth on the island of Ko Lipe in the Butang Group of Thailand by launching a Chinese lantern. As Mark and I watched the twinkling lantern rise in the night sky, we looked at each other and said, “A star is born.” And that is Ziggy.

160407 Day 168 Cape Cod, USA–Ziggy Seven Years Ago

His mom summed up the essence of Ziggy in a tribute to him on her Facebook page. “He’s a wild child, sensitive, a true guardian of Mother Earth with a relationship with nature that is intensely magical, grounding and beautiful.” He loves Legos and when we talked to him on Skype video tonight, he was busy putting together his Lego spaceport that was his birthday present from his mom and dad. He also loves snorkeling and he had already been down to the beach to try out the new easy breathing snorkeling mask we sent him. Happy birthday, Ziggy!

160407 Day 168 Cape Cod, USA–Happy Birthday, Ziggy

We spent another quiet day trying to figure out the best things for Mark to eat. He is slightly nauseous all the time, but he can eat if we pick the right food at the right time. Each day we get a little better at figuring this out. Tomorrow we head back to Mass General for another infusion. This will be a regular infusion day, not one of the 12-hour marathons, so we can have a normal morning and head to the hospital at 11 am. It will mean a drive home during rush hour, but we are getting good at that. Today I drove half-way to Boston to pick-up my niece Lynn and we drove home during rush hour. She spent the last nine days in Florida and arrived here today in the pouring rain with a radiant sun tan. I’m so glad she had a wonderful time, but I must admit that when I saw her sun tan I was just a tad jealous.

Day 169, Year 11: Friday at Mass General
Date: Friday, April 8, 2016
Weather: Partly Cloudy and Windy, High Temp 52 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

Today was drug trial treatment #2 for Mark. Actually he takes the experimental chemo drug twice a day, every day. But once a week he goes to Mass General for an infusion of the other half of the treatment, Cetuximab. This is very similar to the biologic he was given last winter called Panitumumab. If you saw Mark last winter, you probably noticed the side effect of Panitumumab which was a red rash on his face and upper body. Cetuximab has the same side effect and today both his infusion nurse and I noticed that the rash has started. The good thing about Cetuximab is that it doesn’t seem to have other side effects for Mark. But the experimental drug that he takes daily, INC280, makes him quite nauseous. We work daily to adjust nausea meds and food intake to try and control this. We are making progress, but we are not there yet. He lost another two pounds in the past week, so our goal for next Friday is keep that scale steady. Day by day, we’ll make progress.

We are also trying to make progress on looking for a place to rent on the Cape. Heather went to see one house for us today, but unfortunately she felt it would be just too small. Everyone thinks that because we lived on a boat, a house of any size would be fine. But Windbird had two bedrooms AND two bathrooms and dining table could seat at least six people. And what it didn’t have was a large kitchen with a large refrigerator. So we are looking for that in a house or condo. The place Heather looked at today had a small kitchen, would have only room for two at a dining table, and it had only one bathroom. Mark and I are both searching the internet for other prospects and will make appointments to see these places early next week. We’ll head to the Cape on Monday and try to see as many places as possible on Tuesday. If it really seems hopeless, then we are going to have to get serious about securing a dock for Windbird on the Cape for the summer. And then we’ll have to get serious about getting Windbird from South Carolina to here. Two weeks ago there was only one dock available in the Falmouth area, so if this is our option, we’d better make a decision quickly. If that dock has been taken, then we are going to have to be less picky about where we live. Lots to do on this front.

But for the weekend, we are going to stay put and work on getting Mark’s nausea under control. I sure hope we are successful.

Day 167, Year 11: Taking a Break
Date: Wednesday, April 6, 2016
Weather: Mostly Cloudy with a High of 45, Low of 36 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

Today was a good day for just taking a break. Mark and I got up at 7 am to have breakfast. Mark was able to eat heartily and then we both went back to bed. Actually, I laid down on the sofa in the living room and read for a while before going back to sleep, but then I did sleep. So it was a lazy morning here. In the afternoon, I did a little house cleaning, some baking, and then Mark and I went for a walk. He felt much better this afternoon and evening, so we will have to see if this lasts into tomorrow. He is doubling up on nausea medication and that could be why he is feeling better. But whatever, it is great that he has a little more energy and can eat. Tomorrow will be a bit of a repeat of today, although I have to make a store run in the morning and go to pick up my niece from the airport shuttle terminal tomorrow afternoon. Then Friday it is back to Mass General. So go our days.

I want to take this opportunity mention the R/V Neil Armstrong, the newest addition to the Woods Hole Oceanographic Institution’s (WHOI’s) research vessel fleet. Early this morning, our daughter Heather hitched a ride on the Tioga, another of WHOI’s fleet, to go out and greet the Neil Armstrong.

160406 Day 167 Cape Cod, USA–Heather Greets the Neil Armstrong

This research vessel replaces the R/V Knorr whose ownership has been transferred to Mexico and renamed the Rio Tecolutla. Adding a new research vessel to the Woods Hole fleet doesn’t happen every day, so Heather and Jed took the boys out of school this morning so they could be in Woods Hole for the welcoming ceremony. I sure hope the Neil Armstrong stays in port long enough for Mark and I to see it.

160406 Day 167 Cape Cod, USA–Welcome Neil Armstrong