Day 156, Year 11: Getting Ready for the Easter Bunnies
Date: Saturday, March 26, 2016
Weather: Overcast Morning, Sunny Afternoon, Hi 51 F (felt colder)
Location: At Home in Evergreen Preserve, Lowell, MA

Our big trip of the day was driving into Boston to Mass General so Mark could get IV hydration and more blood tests. The high blood count numbers are coming down, so that is good. They are still not in the normal range, but we are pleased that they are coming down. We go back to the hospital on Monday morning to have another blood test and to decide what comes next. In the meantime, Mark is hanging in there. He has only had clear liquids since Thursday morning, so he doesn’t have a ton of energy, but he is feeling okay. But we decided before going to bed last night that we would not drive to the Cape today. We thought we would do it on Sunday. But then this morning I got a very caring email from our son with a very strong, clear message. He wanted us to know that there was absolutely nothing they would need when they arrive here on Thursday that was important enough to require us to drive to the Cape to get it. So he suggested that we sit still and let Mark truly rest. Heather and Jed had already said they would find a way to get things to us, so we decided to follow Justin’s advice and just sit still this weekend. Then a little later we got a call from our daughter, Heather, and she proposed that she, Jed, and boys drive up here tomorrow to visit and to bring the items we need for Justin and Jo’s visit. All of a sudden it felt like the Easter Bunny was coming to visit us and that brightened both of our moods. I had already bought plastic eggs and goodies to put in them for the boys, so this will work out great. They will have their morning Easter egg hunt here in the woods in back of the condo. Granddad can actually watch the fun from inside the condo and not have to drive 4-5 hours round trip to see his ‘boys’. We’re looking forward to the visit tomorrow from the Cape Cod Easter bunnies and a little later in the week from the bunnies from Puerto Rico. We are very lucky parents and grandparents!

Day 155, Year 11: Hanging in There
Date: Friday, March 25, 2016
Weather: Same as Yesterday–Overcast, Rain, High 42 F
Location: At Home in Evergreen Preserve, Lowell, MA

Mark is hanging in there. We didn’t hear from Dr. Kwak until after 1 pm, so it was a long morning. She had checked with Mark’s radiation oncologist, Dr. Hong, before calling and they both agreed that:

#1—The CT scan done on Wednesday does not indicate gall bladder or pancreatic issues.
#2—However, the blood counts are indicative of pancreatitis.
#3—Their hope is that the high lipase and amylase counts are false highs caused by the pain medication.
#4—So they want Mark on a clear liquid diet until Monday with a two-hour IV hydration at Mass General tomorrow (Saturday).
#5—On Monday he will return to Mass General for another blood test in the hopes that the levels will be down.

Basically, they are not ready to declare that this is pancreatitis because the CT scan doesn’t support it and if they did, he would not be eligible for the trial. By going with the hope that the blood count readings are false high’s caused by the pain medication, it leaves the possibility of still be included in the trial, even if it is delayed by a couple of weeks. So Mark is enjoying beef and chicken broth, jello, and clear juices. He doesn’t have a ton of energy but he is feeling better today than he did yesterday. The purpose of the clear liquid diet is to give his body a ‘rest’ so we are adjusting our plans for the weekend. We were headed to the Cape tomorrow, but now we will wait and go down on Sunday morning. If Mark is up to it, we will drive down Sunday morning to see the kids for a couple of hours and then return home. We do need to go down to get a few things we need when Justin, Jo, Ziggy, and Coco arrive early on Thursday morning. If Mark is not up to the trip, I’ll make a quick run down by myself and be back here in time for an Easter dinner of broth and jello. Looking forward to it!

Day 154, Year 11: From WooHoo to BooHoo
Date: Thursday, March 24, 2016
Weather: Overcast, Sprinkles, and Much Cooler, High 42 F
Location: At Home in Evergreen Preserve, Lowell, MA

A call from Dr. Kwak this morning took us from our ‘WooHoo’ elation to a low mood of ‘BooHoo’. The results of Mark’s blood tests yesterday afternoon came back illuminating an unexpected problem. The blood levels, according to Dr. Kwak, could keep Mark from gaining acceptance into the trial. We had to go to the hospital this afternoon so that Mark could be hydrated with an IV solution for two hours before another round of blood samples were taken to verify yesterday’s results. We checked online tonight and saw that today’s samples indicate the blood levels even worse than yesterday. We have not heard from the doctor, so the only information we have we have has been gained from looking things up on the internet. I could be way off base, but as I read the information, the levels indicate that Mark might have a pancreatic issue. My best educated guess would be that the source of his stomach pain for the last four months has been the result of pancreatitis and not the cancer. Pancreatitis can result from long-term overuse of alcohol, but that is not Mark’s problem. A less common cause is that it can be the result of an injury to the pancreas due to abdominal radiation. Since the pain began about six weeks after Mark’s abdominal radiation treatments in the fall, I think that could have been the cause. But regardless of the cause, we have to figure out what to do now. He feels worse tonight than ever and doesn’t feel like eating anything. And if the problem is pancreatitis, not eating is the best thing for him. We’ll wait until morning, call Dr. Kwak, and see what needs to happen next. So stick with us as we negotiate this most recent hurtle.

Day 153, Year 11: Good News . . . The Trial is On
Date: Wednesday, March 23, 2016
Weather: Overcast with Sprinkles, High Temp 60 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

Five weeks ago today I was in a lovely botanical garden in West Palm Beach when I got a call from Mark (who was in Boston) telling me about a drug trial for which he might be eligible. His oncologist felt the trial was his best chance at fighting his spreading cancer. The problem was that our home was also in West Palm Beach. But with a lot of weather luck and the help of a wonderful friend, Kevin Russell, we were able to get Windbird as far north as South Carolina. We then flew here and have been living in a condo owned by my niece Lynn. The generosity of family and friends has been unbelievable and we are very thankful. But we have been here since February 28th waiting to hear whether or not Mark was truly eligible for the trial. Today we found out that he is and the treatment will begin next Wednesday. Woohoo!!! The treatment will happen each and every Wednesday until it stops being effective. As Dr. Kwak told us today, Mark’s cancer cells don’t present a clear-cut message, so it is very difficult to predict how he will react to the biologics that he will be given in this trial. But it is worth the try. One of the biologics is called Erbitux (cetuximab). Last year he was given a very similar biologic called Vectibix (panatumumab). It worked like magic until the cancer cells caught on and outsmarted it. That took about nine months. This trial combines cetuximab with yet another biologic, INC280 (capmatinib). In simple terms, the hope is that the INC280 will allow the cetuximab to do its job. I don’t know about you, but all of this terminology keeps my head spinning. I include the actual protocol title of the trial here for those who might understand it.

“A phase 1b, open-label, multicenter, dose escalation and expansion study, to evaluate the safety, pharmacokinetics and activity of INC280 in combination with cetuximab in c-MET positive CRC (colorectal cancer) and HNSCC (head and neck squamous cell carcinoma) patients who have progressed after anti-EGFR (epidermal growth factor receptor) monoclonal antibody therapy.”

If I lost you somewhere in all of that explanation, no worries. We are lost, too. We do understand the basic idea, but that is not our focus. We are focused on whether or not the treatment works. In the meantime, Mark has found a pain medication regimen that works for him and he is generally feeling much better. He felt great today until he didn’t get to eat lunch, and instead had to drink two big bottles of contrast liquid containing barium and tasting like chalk (at best). Ingesting this yummy liquid was for a CT scan needed for the trial. You can have nothing to eat for two hours before a CT scan, thus the lack of food until the testing was completed. Because of all this, tonight has not been his best evening. But I think that after a good night’s sleep, he’ll rebound and feel good again tomorrow.

So one down and one to go. We now know about the trial and but start figuring out where we are going to live. We just haven’t been able to give that the time and energy needed until we found out about the trial. No more excuses. The trial is on and now the hunt is full-on for a place to live.

Day 152, Year 11: Laughter . . . Good for the Soul
Date: Tuesday, March 22, 2016
Weather: Mostly Sunny, High Tem 50 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

My niece Lynn who owns this condo has been coming over each afternoon to wade through her “stuff” in the extra bedroom and I have been working with her. And believe me, she does have “stuff.” I think we spent more of this afternoon laughing than we did working, but then laughter is good for the soul. We waded through boxes and boxes of old files, boxes of memorabilia which included lots of pins with crazy sayings, boxes of old video tapes, and on and on. My favorite pin said, “Too many idiots, not enough villages.” We had just been joking about the fact that she seems to have one of everything when I reached up to the top shelf of the closet and grabbed another bag to bring down to explore. Lynn tried to warn me, but then she just started laughing. The bag was extremely heavy and I’m lucky it didn’t hit me in the head on the way down as I couldn’t control it. I just sort of threw it on the floor. Lynn was laughing so hard because she knew the bag had a bowling ball in it. Of course, everyone has their own bowling ball on the top shelf of their closet! Thankfully, I didn’t get hurt, but next time I’ll ask before grabbing a bag. We are continuing to make great progress, but need a few more afternoons of laughter to finish the project.

Tomorrow Mark and I are off to Mass General. We would love to find out if Mark is going to be included in the drug trial, but if we still have no word on that, we will have to decide whether to launch into an alternate chemo regimen while waiting. If we decide to that, he has a 1 pm appointment for the first infusion. If we decide to keep waiting to hear about the trial, we’ll just head back home and continue the wait.

Note: I need to make a correction to last night’s log I said that Ollie was finally getting his special blanket knitted by his momma on his fourth birthday, but that Sam had gotten his at birth and Jonah received his for his first birthday. Heather wrote to remind me that my reporting was not quite right. Sam got his blanket for his third birthday and Jonah got his for Christmas when he was 3 1/2. In her words, she’s “just progressed (or lapsed) by six months each time.” I apologize for having the dates wrong but honestly find it amazing that she has managed to knit these special blankets at all. Life with three little boys and a full time job pretty much takes all available time, plus some borrowed.

Day 151, Year 11: Doesn’t Look Like Spring
Date: Monday, March 21, 2016
Weather: Snow Overnight & AM, Turning Sunny, Hi Temp 40’s F
Location: At Home in Evergreen Preserve, Lowell, MA

We awoke to a ground covering of 3-4 inches of snow this morning. So the first full day of spring sure didn’t look like spring. But the snow ended during the morning, the sun came out, and by afternoon it still looked like winter, but it felt a little more like spring. My niece Lynn came over this afternoon and we once again worked on going through the boxes of her things that must be sorted, thrown out, or packed to be kept. We filled another three huge bags of stuff to be trashed and the box of things to go to the Salvation Army has grown to two boxes and both are overflowing. At one point in the afternoon I just had to sit and laugh. We were going through a box of Lynn’s things and there were these laminated file folders that looked way too familiar. As we dug deeper, I realized I was looking at things I had thrown out years ago but had been retrieved by Lynn. One man’s trash is another one’s treasure and then it becomes trash again! Lynn and I are way too much alike in that we are both keepers. Maybe that is why we are working together so well. I feel her pain in throwing things away as much as she does, but I am very proud of both of us for the progress we are making.

Mark sleeps through the afternoon while Lynn and I are working in the spare bedroom, but somehow in the evening he seems to rally. We have tried to tie his stomach pain to food that he eats, but there is just no correlation that we can make. Tomorrow morning we will take a good walk before he ‘retires’ for the afternoon. We’re really hoping that we will find out about his eligibility for the drug trial on Wednesday, but if not, we are prepared to wait just a little longer.

We talked to Ollie on the phone this evening to wish him a happy birthday. He was so excited that he was cuddling in a crocheted blanket that his mom had finished for him just in time for his birthday. Sam’s blanket was completed before he was born. Jonah’s was completed by his first birthday. And now Ollie has his heirloom blanket that Heather has been working on for four years. Perspective changes once you start having children! But one thing that doesn’t change is the beautiful memory of the first day of life. Sam was five and Jonah was two-and-a-half when Ollie was born. They were so excited to welcome their little brother to their world. The love and excitement of that welcoming is seen in the photo from March 21, 2012. And Ollie’s excitement for life is shown in the photo of him wearing a mask he made from a birthday present kit.

160321 Day 151 Cape Cod, USA–Happy Birthday, Oliie

Day 150, Year 11: Happy 4th Birthday to Ollie (a day early)
Date: Sunday, March 20, 2016
Weather: Sunny AM, Then Overcast, Hi Temp 40 F, Snow on the Way
Location: At Home in Evergreen Preserve, Lowell, MA

Today was Ollie’s birthday party. Ollie planned the whole party and it was really a lot of fun. He wanted an obstacle course, wanted to eat birthday cake with his friends UNDER the dining room table with a tent on top of them, wanted the theme to revolve around knights, and wanted a camouflaged castle cake. Somehow Heather and Jed pulled all of that together and gave Ollie exactly what he wanted. And after his little friends left, he was presented with the green John Deere ride-on tractor with a trailer that he has been wanting. What a lucky and very happy little four year-old Ollie was this afternoon. Simon, one of Ollie’s classmates at the Woods Hole Daycare Cooperative, was at the party this afternoon. He was born on the same day as Ollie a couple of doors down at the Falmouth Hospital. Simon and Ollie’s real birth date is March 21 which is tomorrow, but they have both had a full weekend of celebrating. And today is actually Ollie’s Grammy Goldstone’s birthday, as well as the first day of spring. So Happy Birthday to Grammy Goldstone, to Simon, to spring, and to Ollie!

Unfortunately Mark was really not feeling good today. He made ‘cameo’ appearances at the important times at the party, but as soon as it was over, we headed north. We were also trying to beat the snow, but it is now 11:30 pm and we still have no snow. Jed just emailed and said they were having sleet on the Cape. The prediction was for anywhere from 3 to 11 inches on the Cape and much less here, so it will be interesting to see what we have in the morning.

160320 Day 150 Cape Cod, USA–Ollie's Birthday Party

Day 149, Year 11: Adding a Little Humor
Date: Saturday, March 19, 2016
Weather: Partly Sunny, Hi Temp 40’s F
Location: At Home in Evergreen Preserve, Lowell, MA

One ingredient in the recipe to feeling good is humor and today we added that to our mix. Actually our friends Ed and Lynne Kirwin in Nyack added it by sending us a series of five DVD’s of The Best of the Dean Martin Variety Show, circa 1965 to 1974. Admittedly, neither Mark nor I were big Dean Martin fans in the day, but today we thoroughly enjoyed watching the guests on Dean Martin’s Variety Show. Comedians Lucille Ball, Woody Allen, Bob Hope, Don Rickles, Jonathan Winters, Bob Newhart, George Gobel, Rowan and Martin, and on and on. Actors, actresses, and singers Bing Crosby, Frank Sinatra, Tony Bennett, Florence Henderson, Petula Clark, Rosemary Clooney, John Wayne, Goldie Hawn, Kate Smith, and on and on. We still have lots to watch but we are really enjoying the trip down memory lane. I think the thing that struck me the most today was Lucille Ball’s youthful appearance when she was in her 50’s. In the first DVD, she appeared as a chorus girl with very long, thin legs—certainly not the image I had ever had of Lucille Ball. I had to look up her age and found that she was born in 1911. So in 1965, she was 54 years old. Evidently she aged with grace! I don’t think the humor of those days would be much appreciated in today’s world, but just seeing the familiar faces was a fun walk down memory lane. And I have to admit that Woodie Allen was truly funny. Thank you, Ed and Lynne, for adding this most important ingredient to our lives at this point when it is much needed.

Mark’s days are tougher than his nights right now. He had a tough afternoon and was certain that he wasn’t going to be able to eat any dinner tonight. But I persisted and we had a late dinner of broiled salmon and artichokes. By the time we ate, he was feeling better and he really enjoyed the rather strange choice I had made. I boiled the artichokes and we dipped the leaves in curried mayonnaise. The ‘arties’ were delicious, but I’m just a bit biased as artichokes are my very favorite food choice.

Tomorrow morning we are off to the Cape for Ollie’s birthday party. The weather forecast has changed and could change again. But at this point it looks like we will drive home tomorrow evening as the snow is now slated to begin at midnight and go on into Monday. Our travel decision on land will be made just like our travel decisions when we are sailing. On land or at sea, the weather rules.

Day 148, Year 11: A Good Friday
Date: Friday, March 18, 2016
Weather: Partly Cloudy, Hi Temp 50’s F
Location: At Home in Evergreen Preserve, Lowell, MA

It is not Good Friday, but it was a good Friday here. The increased pain meds are helping Mark a bit, but he is still uncomfortable for a part of each day. And he is sleeping through most of the night without pain. So that is definitely good.

I had about zero energy today, but my niece Lynn came over and we spent the afternoon going through her things in the extra bedroom. I keep writing about living in Lynn’s condo and people keep asking me how I am related to Lynn. She is the daughter of one of my two brothers, Bennie. Bennie died at age 33 when I was still in high school. He left behind three children, Lynn, Candi, and Ricky. My brother’s wife, Sue, moved back to Massachusetts (from West Virginia) with the three children after my brother died, but my family kept in close contact over the years. Lynn was the first born of my seven nieces and nephews and is only seven years younger than myself. Due to health issues, she recently had to move out of her condo, the one in which we are staying, and has moved into an apartment complex closer to her sister Candi. The hope is to get this condo on the market by May 1. But when Lynn left the condo, she left behind most of her things. So we made a great start today in going through things and deciding what goes with her, what gets thrown out, and what goes to the Salvation Army. I’m obviously much better at helping others get rid of things than I am in getting rid of my own things! But that is good for Lynn and we made a lot of progress today. That’s the second good thing that happened on this Friday.

Tomorrow is going to be a day of rest for both Mark and myself and on Sunday morning we head back to the Cape to celebrate Ollie’s fourth birthday. I truly cannot believe he is going to be four, but the calendar tells me that it is so. He planned his party and it is supposed to revolve around an outdoor obstacle course for knights. The one issue we have to contend with is the storm warning that has been issued for Sunday. A nor’easter is headed our way and 3-5 inches of snow are forecast for Sunday afternoon through the night and another inch for Monday morning. Hopefully the knights can complete their obstacle course before the snow begins. Otherwise, the obstacle course will have to moved indoors. Could be interesting! And it looks like we will need to spend Sunday night on the Cape and return here after the snow ends on Monday.

Day 147, Year 11: Exhausted
Date: Thursday, March 17, 2016
Weather: Mostly Cloudy, Hi Temp 60’s F
Location: At Home in Evergreen Preserve, Lowell, MA

I used to say “Home is where the heart is.” But these days I say, “Home is where my body is tonight!” This morning we were with the Goldpebbles discovering that leprechauns had visited during the night. Tonight we are back at the condo in Lowell—no leprechauns here! We left the Cape this morning and drove north to have lunch with my niece Lynn at her new residence (just a few miles south of Lowell). She lives in a complex called Summer Place. Residents can take advantage of three meals a day that are served restaurant-style and we had a great corned beef and cabbage lunch to celebrate St. Patrick’s Day. Thank you, Lynn. Mark and I then drove back to Boston for a 3:30 pm appointment with his oncologist, Dr. Kwak, and radiation oncologist, Dr. Hong. Unfortunately there is still no word from the trial sponsor, Novartis, about Mark’s eligibility for the trial. In the meantime, Mark’s cancer is growing at a fast rate. The dilemma is that if he is given any chemotherapy or radiation at this point and then finds out that he is eligible for the trial, he would have to stop the chemo and radiation and wait a full month before entering the trial. But something needs to be done as soon as possible to reduce the size of the tumors to give him some pain relief. The plan we came up with today is to meet again next Wednesday and hope that we know about his eligibility for the trial by that time. If he is eligible, hopefully the trial treatment can begin immediately. If he is not eligible, he will start a second round of a chemo treatment he has had before plus two weeks of daily (5 days a week) targeted radiation. That will mean daily trips to Boston. At this point I think both of us are mentally and physically exhausted and need to just chill out and think about nothing for a day or two.

PS: I have to apologize again to all of you that have written emails to us in the past couple of weeks. I still have not had a chance to get back to you, but just know how much we appreciate your suggestions and well wishes.