by Judy Handley | Mar 27, 2016 | Sailing Logs Year 11 |
Day 157, Year 11: Happy Easter with Our Bunnies
Date: Sunday, March 27, 2016
Weather: Partly Cloudy with Temp in the low-50’s F
Location: At Home in Evergreen Preserve, Lowell, MA
We had a Happy Easter with our “bunnies” who drove up from the Cape. Heather, Jed, Sam, Jonah, and Ollie arrived sooner than I expected, so after they arrived I had to rush out into the forest in back of the condo and to hide the eggs the Easter Bunny had left here. We then had a good time searching amongst the trees for the eggs while Granddad watched from the deck. Whether 4 or 6 or 9 years old, one boy was just as delighted as the other when he found an egg. When we determined that all eggs had been found, we came back inside to open them. The Easter Bunny had delivered Minions, Matchbox cars, Legos, Nano Hex Bugs, coupons for Annie’s Cheddar Bunnies (didn’t fit in the eggs), and coupons for free game playing time on Oma and Granddad’s phones. Ollie told me he was a little sad that there were no jelly beans in the eggs, but even without candy, all three boys enjoyed playing with the bounty. They built with the Legos and then we walked to the basketball court and playground to have some outdoor fun. Getting out of the condo gave Granddad a chance to nap and when we returned we had lunch and dyed Easter eggs. We are going to have to add Naked Easter Egg Dying to the list of ‘naked’ sports because we required the boys to strip off their good clothes before diving into egg dying! No photos allowed.
Tomorrow we go back to Mass General for another blood test. We will wait to get the results, but I just learned from Mark that we don’t see Dr. Kwak tomorrow. We will meet with one of her nurse assistants, so I’m not sure exactly what we will know when we leave the hospital. Hopefully we’ll find out that Mark can eat something. Tomorrow is Day 5 on a liquids only diet. He has lost 20 pounds in the past few weeks, so we can’t take many more of these ‘nothing but liquid diet’ days.
by Judy Handley | Mar 26, 2016 | Sailing Logs Year 11 |
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!
by Judy Handley | Mar 25, 2016 | Sailing Logs Year 11 |
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!
by Judy Handley | Mar 24, 2016 | Sailing Logs Year 11 |
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.
by Judy Handley | Mar 23, 2016 | Sailing Logs Year 11 |
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.
by Judy Handley | Mar 22, 2016 | Sailing Logs Year 11 |
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.
