by Judy Handley | Apr 7, 2016 | Sailing Logs Year 11 |
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.
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!
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.
by Judy Handley | Apr 7, 2016 | Sailing Logs Year 11 |
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.
by Judy Handley | Apr 6, 2016 | Sailing Logs Year 11 |
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.
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.
by Judy Handley | Apr 5, 2016 | Sailing Logs Year 11 |
Day 166, Year 11: Ridiculously Cold for April
Date: Tuesday, April 5, 2016
Weather: Partly Sunny and Cold
Location: At Home in Evergreen Preserve, Lowell, MA
Not much of the snow that fell yesterday melted today as it was ridiculously cold for April. Tonight’s low is supposed to be 18! It is supposed to warm up a bit tomorrow, but then the temps dip again late in the week due to another arctic blast headed our way. I’m not sure which is crazier—the weather or the current political situation. Both are quite perplexing.
I spent my day focused on doing laundry and purchasing and preparing food. I made Magic Mineral Broth and am canning the last load right now. And I went food shopping AGAIN to get items that I am hoping Mark will eat. He is really struggling with the nausea and is finding it difficult to eat anything. But he was able to get up at 7:30 and have a big breakfast–eggs, an English muffin, plus granola. Tomorrow I will add ham to that to bolster the protein. He takes the chemo pills at 10 am, so lunch has to be light. The big hit of the day was a fruit smoothie. He finds that soothing. But he is weak since he can’t eat much. Smoothies are great, but they don’t provide a lot of protein. It is going to take a few days to figure out a diet that Mark can tolerate, but we will persist.
I got all the sheets and towels from the weekend washed and dried today and I did the food shopping for the week. So I am declaring tomorrow a day of rest . . . beginning right now!
by Judy Handley | Apr 4, 2016 | Sailing Logs Year 11 |
Day 165, Year 11: Happy Anniversary to Justin and Jo
Date: Monday, April 4, 2016
Weather: Overcast with Snow All Day; High 27, Low 22 F
Location: At Home in Evergreen Preserve, Lowell, MA
Is it April or January? Can’t tell by the weather! We have a lovely blanket of white covering everything outside here and the high temp today was in the 20’s. But at least the snow held off long enough to allow me to drive JJZ&C to the airport and to allow their plane to take-off on time.
They left Boston a 9 am and arrived in sunny San Juan, Puerto Rico at 1 pm. I sent a text message with photo attached of the blanket of snow here.
In return I got a photo of Jo, Ziggy, and Coco out and about in San Juan in the afternoon sun. Today was Justin and Jo’s ninth wedding anniversary and I think maybe they were going to celebrate in San Juan before driving home to Aguada. In any case, we hope they had a wonderful day. Happy Anniversary to Justin and Jo. It was so wonderful to have them here for the long weekend. There is nothing more wonderful than having your children and grandchildren together and we feel blessed to have had that experience this weekend.
Justin and I had a late night conversation about the best strategies for helping Mark control the nausea he is experiencing from his current treatment. Mark is so lucky that he hasn’t had to deal with this until now, but now we do need to figure it out. He ate a big dinner last night and felt great afterwards. He has to eat prior to 8 pm and then he takes the chemo drug at 10 pm and doesn’t eat anything until morning. He needs to eat breakfast by 8 am and then fast until 10 am when he takes the chemo drug again. Justin suggested that since Mark was able to eat a big dinner and feel great that maybe eating a big protein-filled breakfast would be a good idea. His breakfast and dinner are both eaten two hours before he takes the chemo drug and it does seem that having a good hit of protein helps. I spent my afternoon making comfort foods–tapioca pudding and chicken vegetable soup with ginger meatballs. The meatballs were made of ground turkey and the hope was that the added ginger would help with the nausea. Both the soup and the tapioca pudding were a go. But I definitely need to do research to find out what other things he might be able to tolerate. Cheese seems to be a definite no-no but eggs and high protein smoothies are definitely in. We’ll keep trying things and recording what works and what doesn’t.
by Judy Handley | Apr 3, 2016 | Sailing Logs Year 11 |
Day 164, Year 11: Snow and Grandkids
Date: Sunday, April 3, 2016
Weather: Partly Sunny Day with Early AM Snow; High 40’s, Low 20’s F
Location: At Home in Evergreen Preserve, Lowell, MA
Today was all about snow and grandkids. We woke up with the white fluffy stuff falling out of the sky. This was particularly exciting for Ziggy and Coco as they do not see snow in Puerto Rico. Ziggy remembers snow from New Mexico, but when they lived there, Coco was too young to remember. A great deal of the morning was spent outside walking and playing in the one-inch of snow that accumulated. We could have snow again in the morning, beginning as early as 4 am, but with the greatest chance coming around 9 am. Sure hope it holds of until 9 am as I have to leave here at 5:30 am to take Justin, Jo, Ziggy, and Coco to the airport.
It was so nice to have all five of our grandchildren here to spend the night and play together this morning. I know we made enough noise both inside and outside to get us evicted from this place, but evidently the neighbors are good souls as there were no complaints. Mark and I get the greatest joy in watching the little cousins play together, but by mid-afternoon it was time for the Goldstones to head back to the Cape. It has been a wonderful few days spent with our children, their spouses, and our grandchildren. And during this time, Mark started the drug trial. He is struggling with severe nausea and tomorrow I’ll start focusing on ways to deal with that. But first, we’ll get up at 5 am so I can drive JJZ&C to Logan Airport in Boston.
