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.

160525 Day 216 Cape Cod, USA–Mark at MGH

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.

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.

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!

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.

160522 Day 213 Cape Cod, USA–Soccer Sunday

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.

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.

160521 Day 212 Cape Cod, USA–Moving Day

Day 211, Year 11: Packing Day
Date: Friday, May 20, 2016
Weather: Sunny and Warm, High of 77 degrees F
Location: Last Night at Home in Evergreen Preserve, Lowell, MA

Today was packing day and tomorrow is moving day. So this is our last night in this condo in Evergreen Preserve in Lowell. We have really enjoyed watching the pond wildlife here, but in two and half months we never really got to explore the forest paths as we would have liked. Somehow we just stay too busy or the weather just wasn’t cooperative. Tomorrow morning at 10 am family arrives to help us pack the furniture from the condo into a moving truck. My niece Lynn that owns the condo has moved into a studio apartment and she really doesn’t need the furniture or any of the things from the kitchen. This is very lucky for us as we have gotten rid of most furniture that was in our storage unit and we will need to furnish the apartment we will be renting as of June 15. But I know it has been very hard for my niece to let go of so many of her belongings. Since we moved in here in March, she has gotten rid of bags and bags of belongings and boxes and boxes of books. Today she had to make the last purge and at the end of the afternoon, the spare bedroom that had been absolutely packed with boxes of ‘stuff’ for the past three years was empty. I know how hard it is to downsize and get rid of things that were once precious to you. But Lynn has now done that and can hopefully get on with her new life without all of that old baggage. I just hope I am as successful in getting rid of things that we really don’t need out of our storage units.

But tomorrow the furniture will travel to the Cape and be put in the same new storage unit as our things that arrived last weekend from Windbird in South Carolina. We have to wait four weeks before making the final move, but I’m sure the time will fly by. Late May and early June are always busy times at the Goldstone ‘homestead’—bees arrive, the garden needs to be planted, and other spring projects abound.

I’m sitting at the kitchen table writing this log and I am surrounded by things that have still not been packed. But I’ll get up at 7 am when Mark has his first breakfast and complete the final kitchen packing. Mark will go back to bed until 10 am when the moving crew arrives. We were going to start earlier, but I really felt like Mark needs that extra morning sleep. He had an okay day today, but he just has no energy. And he is very frustrated that he can’t help with the packing and moving. He did take the bed apart and I could never have figured that out without him. So he is really feeling more useless than he really is. We’ve gone back to having him take the original anti-nausea med, Zofran, but he just doesn’t like the way it makes him feel. He still fights the nausea, but he was able to eat good-sized meals today. Hallelujah! He has lost another two pounds and just can’t afford to lose any more weight. So we’ll continue on this track for another couple of days and see how things go.

Every night when I write this log, I contemplate when I will write the last log in the Voyage of Windbird. My original thinking was to stop writing the log when we actually make the move into an apartment or when Windbird is sold. But recently I have been thinking that I should put an end to your misery sooner rather than later. I can still write my nightly log for myself, but I don’t need to publish it and bore you with the mundane happenings of our everyday life. Then I got a phone call this morning that made me reconsider. Jean Mason is a friend from our days in southern West Virginia. We stopped to see her on our drive south in December and since then she has been reading my daily log. She, too, is fighting cancer, and more than once since December she has read the log and then called to give us advice based on her experiences. Her advice is always helpful and I would never get it if I weren’t posting the log. So I’m not sure what I will do about continuing or ending the logs from the Voyage of Windbird, but what I do know is that it was so good to hear Jean’s voice today. Jean, thanks for the advice. We’ll keep fighting this fight against cancer together with you.

Heather called and talked to her dad today to tell him that her 19’ Cape Dory Typhoon, Peanut, sold and was being hauled away. She sent him a photo of Peanut being trailed away.

160520 Day 211 Massachusetts–Peanut Leaving 60 Vidal

She and Jed bought the boat just before Sam was born and have used it very little since the advent of little ones. It was good to see that Peanut has found a new home. Now we just need to have the same luck Windbird. I so want her to be bought by a cruising couple that will love her as much as we have. She doesn’t deserve to just sit in a slip. She needs to be out sailing.

Day 210, Year 11: Believe It or Not . . . Another Trip to Mass General
Date: Wednesday, May 18, 2016
Weather: Mostly Sunny, High Temp mid-60’s F
Location: At Home in Evergreen Preserve, Lowell, MA

Believe it or not, we had to make another trip to Mass General this afternoon. This one was not scheduled. Mark got a call from his oncologist, Dr. Kwak, telling him good and bad news. Yesterday’s CT scan showed that the trial drug is working. We won’t know the details until next Wednesday, but that was great news. But on the ‘not so good’ side, the scan showed blood clots in Mark’s lungs. This is not unusual for people with cancer taking chemotherapy drugs. Mark was so lucky for four years, never having nausea with chemotherapy and not developing clots. But now he is having to deal with everything at once. The reason we had to drive into Boston this afternoon was to get ‘training’ for giving blood thinner shots. We know how to do this as I had to shots for weeks when I broke my leg when we were crossing the Pacific. But Mass General could not prescribe the blood thinner without us coming in. So we did.

I had planned to work with my niece Lynn this afternoon to help her sort and pack things for Saturday’s move. Lynn worked without me, but hopefully tomorrow we will get to actually work together and finish this off.

Day 209, Year 11: Yet Another Day at Mass General
Date: Wednesday, May 18, 2016
Weather: Mostly Sunny, High Temp mid-60’s F
Location: At Home in Evergreen Preserve, Lowell, MA

It was yet another day at Mass General and this was a long one. Everything went well until late afternoon when Mark had to drink the two liters of barium before his CT scan. That stuff never goes down easily for most people, but Mark has never complained. However, he has never been so nauseous before. Today the barium was just enough to tip the scales and make him sick. It was a tough ride home, but once we got here, he was fine. He does bounce back quickly and with such a positive attitude.

My niece Lynn was here when we got home. She had worked all afternoon to sort and pack her things and she made great progress. Shortly after we arrived, Candi and Char arrived to help move a number of boxes to Lynn’s apartment. Lynn still has a number of things to sort through, but I can definitely see the end of the tunnel. Hopefully by Friday afternoon everything will be packed up and ready for the final move on Saturday morning. Lots to do!

Day 208, Year 11: Another Afternoon at Mass General
Date: Tuesday, May 17, 2016
Weather: Partly Sunny and Warmer, High Temp 70 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

We spent another afternoon at Mass General, but today’s trip had nothing to do with Mark’s cancer. It was a yearly check-in with this urologist. It was a quick appointment, but it took an hour to drive into the city and an hour and a half to drive home. So a “quick” appointment took a lot of time. Tomorrow we have a long day at Mass General. We leave here at 7:15 am and who knows what time we will get home, but hopefully by 6 pm. Mark has his weekly blood test, meeting with the medical staff, and then his infusion. When that is done, we head to a different part of the hospital for a CT scan. This will be the first scan since the he entered the trial. We won’t get the results until next week, but we are hoping the INC280 is doing its job and that we will be able to report good news.

If we are super lucky with timing tomorrow, the earliest we could finish up at the hospital would be sometime between 3:30 and 4 pm. If we are not so lucky, it could be later. But our hope is to get back here by 6 pm. My niece Candi and her husband Char are coming at that time to move more of Lynn’s things from here to her new apartment. Unfortunately Lynn has still not been able to come here since she got out of the hospital. She is really not feeling well. She’s hoping to get here tomorrow to start going through things, but tomorrow night we go ahead and move things that I have packed and hope that she gets some more packed tomorrow or on Thursday and Friday. Little by little, we will things done and by Saturday morning we will be out of here, one way or another.

Day 207, Year 11: Phase One Completed
Date: Monday, May 16, 2016
Weather: Partly Sunny, Very Windy and Cool
Location: At Home in Evergreen Preserve, Lowell, MA

This move of ours is going to be made in so many different steps that it’s even hard for me to keep track. But I am going to declare that receiving the first load of personal belongings from Windbird, getting them into a storage unit in Falmouth on the Cape, and returning the U-Haul truck and trailer is ‘Phase One’. We left Heather and Jed’s at 7:30 am this morning, drove north off the Cape, and returned the trailer at the closest U-Haul center. We drove back to Evergreen Preserve in Lowell to pick up our car and then returned the U-Haul truck in Nashua. Phase One completed!!! It was 11 am by the time we got back home, so I quickly fixed a second breakfast for Mark, left him at home to rest, and went to pick up my niece Lynn who was being released from the hospital. This required driving south again, but thankfully at mid-day there was not much traffic. I picked her up, drove her to her apartment, did some measuring for another piece of furniture that she is contemplating moving, and got back home by 2 pm. Unfortunately, Lynn did not feel up to coming here to continue the sorting and packing routine, but she does hope to come over in the morning. One way or another, we will get everything packed up and out of here by Saturday morning. That will be Phase Two.

Mark decided to take no anti-nausea medications today and that yielded some good and some bad results. He was on the verge of nausea all day and that was the bad. But he was able to eat and he was alert and felt ‘human’ (his words). That was the good. So we will continue this for a few days and see if we can find additional non-med ways to keep the nausea at bay, only taking an anti-nausea drug if he gets really sick.

Tomorrow we go to Mass General in the afternoon for Mark’s annual urology appointment. And on Wednesday we spend the entire day at Mass General. Mark will have blood tests, get his infusion, and then he will have a CT scan. This will be the first scan since he started the drug trial, so we are all anticipating what we hope will be confirmation that the trial drug is working.