by Judy Handley | May 26, 2016 | Sailing Logs Year 11 |
Day 217, Year 11: Thinking of Windbird
Date: Thursday, May 26, 2016
Weather: Sunny and Hot, High 84 degrees F
Location: At Home with the Goldstones, East Falmouth, MA
This morning when Heather and Jed were driving to Woods Hole to work (and taking Ollie to school in Woods Hole), Ollie saw some boats out on the water. He got very excited and said to this mom and dad that he just can’t wait until summer when he can drive the dinghy again. They reminded him that Windbird will not be here this summer, so there won’t be a dinghy. He immediately welled up and the alligator tears started flowing. And I know exactly how he feels. I spent my day writing up a brief summary of Windbird’s history with an accounting of all of her storage capacity. A man who looked at Windbird a couple of weeks ago is returning this weekend with his wife. They are flying into North Carolina, renting a car, and working their way south to Little River looking at two other boats on the way. I have no way of knowing if Windbird is the right boat for this couple, but I want them to have as much information as possible. It would be wonderful to find a new couple that will love Windbird as much as we do. But, like Ollie, it makes us very sad to think about it.
Mark is still feeling good. He had a little nausea during the night, but he recovered from that today. He wishes he had more energy, but I am just elated that he is not nauseous and is eating voraciously, gaining weight, and looking healthier than he has in weeks. Go, Mark!
by Judy Handley | May 25, 2016 | Sailing Logs Year 11 |
Day 216, Year 11: Simply Amazing
Date: Wednesday, May 25, 2016
Weather: Sunny and Hot, High 88 degrees F in Boston, 75 in Falmouth
Location: At Home with the Goldstones, East Falmouth, MA
Last night I read Dr. Seuss’s “The 500 Hats of Bartholomew Cubbins” to Ollie at bedtime. Today when we met with Dr. Kwak to review Mark’s latest CT scan results, I felt like I was hearing the story of “The Many Lives of Mark Daniel Handley.” With the help of a wonderful oncologist, another biologic (Cetuximab), and the trial drug INC280, Mark’s cancer is once again receding. Today Dr. Kwak brought up the computer images from his scan just before the trial began side by side with the images from the current scan to show us the differences. And as she explained what we were seeing, she kept saying, “This is just simply amazing.” And it was amazing. We looked at the abdominal area, the liver, the lungs, and in all those places there are significant reductions in the size of tumors. In some areas like the liver, nothing is visible. That doesn’t mean the cancer isn’t there; it is just too small to see. But when you have cancer that has metastasized throughout various organs, seeing them “go away”, even temporarily, is a GLORIOUS gift. In addition to this good news, Mark made it through his third day totally free of nausea, has gained four pounds since last Wednesday, has good blood counts, and is feeling better than he has since the beginning of this trial. Some of this appears to be due to the steroid that we added this weekend. Unfortunately, Dr. Kwak reminded us that the steroid cannot be used continuously, but she agreed that for now, we should stick with this current plan. It took us eight weeks of experimenting to get to a plan that works for Mark, so she agrees that he deserves to enjoy this for a while longer before we change anything.
After meeting with Dr. Kwak, Mark had his weekly infusion. I’m not sure I have mentioned that on many of our Wednesdays at Mass General, Mark sits in a chair with a gorgeous view of the Charles River. If you have to go through chemo infusions, it sure helps to have such a view.
I want to give a special thanks here to our daughter Heather who helped us come up with the current schedule. As we drove to Lowell on Sunday, we talked through the timing of taking the various drugs and settled on the current schedule that is working so well. In addition, we have gotten wonderful suggestions from our son Justin, our daughter-in-law Jo, my niece Candi, our friends Jean Mason (a cancer patient) from West Virginia and Jane Woodin (a nurse) from here on the Cape, Heather and Jed’s next door neighbor Melissa Keefe (a nurse), and our good friends Ed (a cancer patient) and Lynn Kirwin. And we know we have the full support of each and every one of you that is reading this log. Some of you are family, some of you are friends, and some of you are people we have never met but feel as though we have known you for years. And then there is the team of top-notch health professionals who work with Mark at Mass General Hospital and the guidance I get from the ‘food revolution’ folks out there online and in books. And if I have forgotten anyone, please forgive. I will say it once again, “It takes a village.” And all of you are part of that village.
by Judy Handley | May 24, 2016 | Sailing Logs Year 11 |
Day 215, Year 11: No School for Jonah
Date: Tuesday, May 24, 2016
Weather: Overcast with Drizzle, High 59 degrees F
Location: At Home with the Goldstones, East Falmouth, MA
Jonah spiked a fever in the middle of the night, so there was no school for him again today. Since we were going to be here, it made no sense for Heather or Jed to stay home with him. So he stayed with us. He felt fine all day today, so hopefully his ear infection is on the mend. I spent my day doing quiet things with Jonah and Mark spent his day reading. He had another good day. We’re not exactly sure what has changed things so drastically, but we are most grateful. Right now Mark is on an anti-nausea med every eight hours. This is the same anti-nausea med that made him nauseous in past weeks. The only difference is that he is now taking dexamethasone, a steroid, early every morning. We tried this before but took it later in the morning. That allowed him to sleep-in, but it kept him from going to sleep at night. Taking it at 7 am, it doesn’t seem to be affecting him at night. So we are assuming that this is the magic pill that is allowing him to feel a hundred per cent better than he has in past weeks.
We head to Mass General tomorrow. We are anxious to get the detailed results of last week’s CT scan, but we dread changing his schedule for the day for fear that the nausea will return. He has to fast from midnight tonight until almost noon tomorrow and that most assuredly will make his nauseous. But we can hope.
by Judy Handley | May 23, 2016 | Sailing Logs Year 11 |
Day 214, Year 11: Not a Typical Monday
Date: Monday, May 23, 2016
Weather: Sunny and Warm, High 75 degrees F
Location: At Home with the Goldstones, East Falmouth, MA
As Heather said this morning, “There’s always something.” Jonah woke up with an ear infection that no one anticipated yesterday. So that changed everyone’s schedule for the day. Jed took Sam to school and then headed straight to the doctor with Jonah and Ollie. Jonah’s appointment was at 9:15, so there was no way to get Ollie to school in Woods Hole before that time. The doctor agreed that, indeed, Jonah does have an ear infection, so Heather left work Heather and brought both Jonah and Ollie home with her. While all of this was going on, I went to our storage unit to unload the last few things from the car and then went to the grocery store. What should have taken 20 minutes took an hour because they have rearranged the entire store and I had trouble finding everything. Even when I asked the location of things, I was sent to the wrong aisles. Oh well, I will eventually figure out the new arrangement and hopefully trips to the grocery store will shorten.
The good news from today is that Mark had another stable day. He still lacks energy, but the nausea is under control and he is eating and enjoying reading again. I had originally planned to go grocery shopping in Hyannis today as there are things there that I can’t get here in Falmouth. Mark wanted to go with me, but I put that trip off. Maybe I’ll just go when we are in Boston on Wednesday. We did go to a nearby farm store today to buy organic compost for the garden. We got 12 heavy bags and thought that would be enough. But when I spread it on the garden, it ended up to be only an inch thick. We were hoping for two to three inches. Oops. I guess I calculated that wrong. But I got it spread fairly evenly and tilled in a bit with the hand push cultivator. Heather plans to rent a rototiller on Saturday to finish getting the garden ready to plant. So both Mark and the garden are on track at this point in the week. Hurray!
by Judy Handley | May 22, 2016 | Sailing Logs Year 11 |
Day 213, Year 11: Happy, Calm Sunday
Date: Sunday, May 22, 2016
Weather: Cooler Than Yesterday But Mostly Sunny, High 61 degrees F
Location: At Home with the Goldstones, East Falmouth, MA
Today was a happy and calm day. At least it seemed calm to us after the hectic times this past week. Heather and I drove the moving van back to Chelmsford and picked up my car. We then went to the condo to do the last clean-up and get a few things that were left behind yesterday. I drove the truck north and Heather drove the car back to Falmouth. I had tried to convince Heather that I didn’t need her to come along, but I must admit it was nice to have the company. It gave us a rare chance to talk without interruptions and it gave me a chance to kick back and relax. On our way home we heard from Jed that Mark was having a good morning. That was great news, indeed. Sam fixed an egg omelet for Mark for his second breakfast and all three boys decided to have second breakfast with him. Heather and I got home in time for a late lunch and then we were all off to the soccer field for Sam’s 2 pm game. Jed and Sam went ahead and the rest of us came along a little late, but we got to watch most of the really terrific game for the Falmouth team. How you play the game, not winning, is supposed to be the goal, but it always helps when you win.
Coach Tim suggested that we all go out for ice cream to celebrate and Mark felt good enough to go along. He ate ice cream, came home and had a first dinner, and then he ate again when the rest of us had dinner. He is not a bundle of energy, but he is SO much better than he was yesterday. I think getting the move over with (for now) really helped and the current pain and nausea med regime seems to be working. He still has waves of severe nausea, but he is eating more and having more fun. So we’ll just keep on this track and hope that by Wednesday when we return to Mass General he has gained a bit of weight back. In the meantime, we will continue enjoying life here with the Goldstones.
by Judy Handley | May 21, 2016 | Sailing Logs Year 11 |
Day 212, Year 11: Moving Day
Date: Saturday, May 21, 2016
Weather: Sunny Early, Then Mostly Cloudy, High mid-70’s F
Location: At Home with the Goldstones, East Falmouth, MA
Can you hear my big sigh of relief? I’m pretty sure it is loud enough to be heard clear around the world! Today was moving day and I am so truly relieved that it is over, more for Mark than for me. This has been his worst week yet and this morning he felt so bad he just had to sit in a chair and watch us as we carried everything out the condo. And that made him feel even worse. But with enormous help from family, everything is either stored in our newly acquired 10 x 10 storage unit or in Heather and Jed’s basement. I left a few food items in the refrigerator in the condo as we ran out of cooler space and I will pick that up tomorrow when I return the moving truck. But for now, we have moved in with the Goldstones and will be here for a month before we can move into the apartment we have rented. There is more moving in our future, but for now it’s done and we can relax a bit.
I was so tired this afternoon as we were driving from Lowell to the Cape that I had to pull into a service area and sleep for a few minutes. I just could not keep my eyes open. But the little bit of rest did the trick and we continued on. Heather is insisting on driving with me tomorrow when I return the moving truck to Lowell. I hate to see her spend her precious weekend time in a car, but she had made up her mind and there’s no changing it. It will probably take about five or six hours to drive up, get the things from the condo, and drive back to the Cape. Sure wish we could just do a Star Trek transport.
The moving crew arrived this morning at 10 am. Lynn, her mom and dad, Brad and Sue, my niece Candi’s husband Char, and Lynn’s brother ‘little’ Brad, who is tall, strong, and almost 50, made up the moving team. People who read this log often ask me how Lynn can be my niece since I call her mother Sue my sister-in-law, and yet Sue is not married to my brother. Well, Sue was married to my brother until he died at a very early age in 1964. When my brother Bennie died, he left Sue with three young children—Lynn, Rick, and Candi. Sue remarried and she and Brad had a son, Brad, Jr. So that’s the relationship. The younger Brad and Char did all of the moving of large items this morning, but the rest of us pitched in by carrying out boxes and bags. Brad and Sue did the thankless job of packing up the freezer and refrigerator—never an easy job. When Mark and I walked out to the truck after it was totally packed, we just looked at each other and both said that there was no way all of that stuff was going to fit into the 10 x 10 storage unit we have already half-filled with boxes from Windbird. We called the storage unit office to arrange for yet another unit. But we didn’t need it after all. Heather and Jed are amazing ‘stackers’, and they got everything into that unit—couch, coffee table, wooden shelves, a bed with built-in under-the–bed drawers, a night table, a two-drawer horizontal wooden file cabinet, a small futon, two rocking chairs, a large leather computer chair on rollers, a dining table and four chairs, plus many boxes of kitchen ‘stuff’. So a huge thank you to all of our moving crew members. There was no way we could have done this without you. And a very special thank you to my niece Lynn for offering us a place to live for the past three months and for the gift of all of the furniture that she can no longer use. We are very grateful. Now if we can just get Mark feeling a bit better, life will be good. I’m hoping just being around the Goldpebbles will help. They are always entertaining. Late this afternoon Heather asked the boys why they were adding water to dirt to make mud. She knows better than to ask that question! A few photos show some of the results of the mud experience.
