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!

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.

160404 Day 165 Cape Cod, USA–Airport Farewell

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.

160404 Day 165 Cape Cod, USA–Blanket of Snow

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.

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.

160403 Day 164 Cape Cod, USA–Snow and Grandkids

Day 163, Year 11: All Together Again
Date: Saturday, April 2, 2016
Weather: Overcast with Rain, Clearing in the PM, High Temp 50’s F
Location: At Home in Evergreen Preserve, Lowell, MA

The weather today was awful, but we ignored the weather and celebrated having our whole family together again. The entire day was filled with the giggles, squeals, and yelps of grandchildren. What sounds of happiness children make! Justin, Jo, Ziggy, Coco, and I headed out this morning to go to a gluten-free bakery just north of Boston. Both Jo and Ziggy are gluten and dairy free for health reasons and the Sweets Without Wheat bakery in Arlington was fantastic and elicited squeals of delight from not only Ziggy and Coco, but Justin and Jo as well. From there we drove to Watertown to the Magic Art Studio. This is owned by Ray Goulet. He is now 82 years old but has dedicated his life to magic and now has the shop that is only open on Saturdays and a museum that is open by appointment. The man behind the counter in the shop is also a magician and he put on quite a show for us. Again, there were squeals of delight. Coco was quite taken with the magic and decided that tickling my hand was a great magic trick. Every time she touched my hand, I would jump and she would belt out that Janis Joplin-like belly laugh of hers. Mark was not feeling up to going with us and we were gone much longer than we expected, but when we got home we found that Mark was feeling better and Heather, Jed, and the Goldpebbles had arrived. The addition of three more kids added a lot of yelps to our sound effects. The rain stopped just about the time we all arrived, so the kids played out back in the woods. When Heather was sure they were so loud that we were going to get evicted, I walked with the Fab Five to the playground. But instead of playing on the equipment, they decided to build a damn across the adjacent stream.

In the evening, Jed volunteered to go out and pick-up the sushi feast we had ordered. Justin made the restaurant choice and he made a great one. The sushi was fantastic. After dinner we had a little birthday celebration for Ziggy. He will celebrate his seventh birthday on April 7th. We brought out the gluten-free bounty–chocolate decadence cake, brownies, and Boston crème pie. Every choice was just a bit better than the last one and I think Ziggy really appreciated having the family sing Happy Birthday to him.

We are having a sleep-over tonight. All five kids are sleeping in the extra bedroom and their parents are sleeping in the living room. It is so wonderful to have them all here with us tonight.

160402 Day 163 Cape Cod, USA–Celebrating Family

Day 162, Year 11: Drug Trial Off and Running
Date: Friday, April 1, 2016
Weather: Mostly Cloudy with Some Rain, High Temp in the 60’s F
Location: At Home in Evergreen Preserve, Lowell, MA

Since today was April’s Fool Day AND the first day of Mark’s participation in the drug trial, I was fearful that things might not go smoothly. But my fears were for naught. Mark had a great day, albeit a long one. For this first trial treatment, next week’s second trial treatment, and then once every four weeks after that, trial protocol requires Mark to be in or near his infusion room at Mass General for about eleven hours on each of those days. Today we arrived at Mass General a little early for his 7 am appointment time and left there at 6 pm. The trial requires hourly blood draws before and during the infusion time and then a blood draw every two hours following the infusion. And because it is trial with other necessary protocols, it takes three hours to get things started. But today was broken up by multiple visits from Justin, Jo, Ziggy, and Coco. They came in the morning to visit while Mark was getting the infusion. Coco arrived as Ladybug Girl and Ziggy as Minion Boy. They both looked adorable and the ladybug wings that Heather brought for Coco to wear were a super hit. Then I went with Justin and gang on the T to Park Street to walk through the Boston Commons. Ziggy and Coco made some friends and reluctantly left their new friends to walk back across Beacon Hill to Whole Foods.

160401 Day 162 Cape Cod, USA–Day in Boston

There we bought items for a picnic lunch to take back to the hospital. We had hoped that Mark would be able to leave the infusion room and come downstairs to eat with us. He was delayed, so after lunch we met him in the 8th floor outside and inside Healing Garden to spend time.

160401 Day 162 Cape Cod, USA–JJZ&C with Granddad at MGH

And when Mark and I got home after 7 pm, Justin and Jo had dinner ready for us. It was a great day and we are so grateful that Mark is finally in treatment which we hope will produce positive results.

We have cancelled all traveling activities for the weekend and will spend the next two days here with JJZ&C and Heather and company from the Cape. They arrive tomorrow afternoon. Tomorrow night we will have a gigantic sleep over. Lots of fun coming up.

Day 161, Year 11: JJZ&C Arrive—Wonderful Day
Date: Thursday, March 31, 2016
Weather: Partly Sunny and Windy, High Temp 71 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA

Justin, Jo, Ziggy, and Coco arrived a little later than expected this morning due to a flight delay, but we made the most of the rest of the day. We spent the day just doing low key things together. It was wonderful.

160331 Day 161a Cape Cod, USA–JJZ&C Arrive

The day started with an Easter Egg hunt in the woods. Evidently the Easter Bunny knew that Ziggy and Coco were coming, so she left a few eggs for them. Some of the eggs had Legos in them, so we spent a good deal of time today putting Lego sets together. We went to the playground to play, blew bubbles, walked in the woods, ate, and read stories. The day ended all too soon and the weekend is going end sooner than I expected. They leave on Monday morning, not Tuesday as I thought. Since Mark has to be at Mass General all day tomorrow, that just leaves Saturday and Sunday. So we have to rethink how we are going to spend our precious time. And precious it is. Just watching Justin and Mark walking together in the woods made my day.

160331 Day 161b Cape Cod, USA–Father and Son

Day 160, Year 11: SO Excited for Tomorrow
Date: Wednesday, March 30, 2016
Weather: Partly Sunny, Temp in the 50’s F—Feels Much Warmer
Location: At Home in Evergreen Preserve, Lowell, MA

Mark and I are both SO excited for the arrival of Justin, Jo, Ziggy, and Coco tomorrow. They arrive at Logan Airport in Boston at 7 am. I will drive in to pick them up without Mark as all of us won’t fit in our FIT. On our way home from the airport, we will stop to pick up my niece’s car and from then on we will travel in the two different cars. The weather tomorrow is perfect for their arrival as it is supposed to sunny and 70 degrees F. But then the weather forecast falls apart—rain and even snow forecast for the next four days. Right now the forecast is for 5-8 inches of the white stuff here in Lowell on Monday and Monday night. I’m sure Ziggy and Coco will enjoy it if it really happens, but sure hope it doesn’t mess up flights for their return to Puerto Rico on Tuesday. But as we all know, it is spring in New England, and anything could happen between now and then. The forecast will probably change four times in the next four days. So we will enjoy tomorrow and worry about the rest later.

Today was my ‘free’ day since our full day at Mass General has been postponed until Friday. We had a lovely, relaxed morning and took a mile+ walk just after lunch. I then took off to do more food shopping. Somehow I thought I already had most everything we will need for the next few days, but three hours later I returned with bags and bags of groceries and other ‘stuff’. Some of the purchases were for feeding the masses, but some were made in anticipation of the Breville juicer that is supposed to arrive tomorrow. I have been making a green smoothie and a super high protein smoothie in a blender for Mark each day, but now I will be able to add home-made juice that will be jam-packed with vitamins and minerals. For the past ten days we have spent a couple of hours each day watching videos from an internet Total Wellness Summit. It reinforced many of the beliefs we already have but have not been acting on. So after four years of decision making, we finally ordered the juicer. We’ll keep you posted on how that venture plays out. But for now, our only focus is spending time with our kids and grandkids. Can’t wait.

Day 159, Year 11: Another Change
Date: Tuesday, March 29, 2016
Weather: Partly Sunny, Very Windy, Temp in the 40’s F
Location: At Home in Evergreen Preserve, Lowell, MA

Oh, my! How flexible we have to be. This morning Mark talked to the scheduler for the drug trial and was told that he was to be at Mass General at 7 am tomorrow morning. Then at 4 pm he got another call telling him that the date for the initial interview and infusion will be on Friday morning, beginning at 7 am, not tomorrow. Another change. Normally a change like this wouldn’t be so bad, but since Justin and family are arriving here on Thursday and will only be here for five days, Granddad will now be at Mass General for one of those five days. But we will make the best of it. The infusion center is on the 8th floor of a building and many of the infusion rooms overlook the Charles River. On that same floor, there is a rooftop garden that is really lovely. And just a short walk over Beacon Hill is the Boston Commons. So Mark and I will leave here very early on Friday morning and then have JJZ&C drive in after rush hour. They can visit with Mark and enjoy the views of the Charles River, enjoy the Healing Garden and its fabulous views, have lunch on Charles Street, and enjoy the Boston Commons on a relatively warm spring day. They can then drive home BEFORE rush hour and Mark and I will follow when we can. We are determined to make the best of this change. We honestly don’t know how long we have to be at the hospital on Friday. The infusion will only take three hours. But the reason for the change was that the people who have to do the initial interview are not available tomorrow morning. So Mark will meet with them first thing on Friday. We don’t know what is involved in an initial interview and how long that will take. Then, because it is a trial, there will be testing during and for a few hours after the infusion. So for this one day each week, we will just take a good book and do a lot of reading while waiting for the ‘next’ thing. But for this first day, we just don’t know what to expect.

My day started very early this morning. I picked up my niece Lynn at 5 am and drove her to a transportation center north of Boston so she could catch the shuttle bus to Logan Airport. She had an 8:15 am flight to West Palm Beach to visit with her parents, Sue and Brad. There was very little traffic, so I was well on my way home by 5:45 when I realized I had forgotten to get the keys to Lynn’s car from her. She is loaning the car to Mark and I in her absence so that Justin and Jo can use our car while they are here. Like us, Lynn has a Honda Fit—great cars, but only five passengers can possible fit (no pun intended). I quickly called Lynn and she was on the shuttle. She said that when she arrived at the airport, she would wait at the departure area until I could get there in order to give me the key. I turned around as soon as I could and found that the inbound traffic was much heavier than it had been just 45 minutes earlier. But it really wasn’t too bad and I got to the airport by 6:30, got the key from Lynn, and started the trek home once again. Whew! Really glad I remembered the key when I did. Having the extra car is going to make things so much easier while Justin, Jo, and kids are here. Thank you, Lynn.

This evening my other niece that lives in this area, Candi, came over to deliver an inflatable bed for Justin and crew. Heather and Jed brought another one on Sunday, so tomorrow we will blow these up and make a wall-to-wall bed in the guest room. Candi also brought Mark a beautiful sailboat painting and a potted tulip. Our surroundings are now much improved. Thank you, Candi.

Since we were planning on being at Mass General all day tomorrow, this change now gives us a free day. Mark is still weak from the five days on the liquid diet, but he is rebounding. He took two short walks today and hopefully tomorrow we can increase the length of those walks and soak up some of the sunshine and warmer weather that is in the forecast.

Day 158, Year 11: Who Would Ever Have Thought . . .
Date: Monday, March 28, 2016
Weather: Overcast and Rainy with Temp in the 40’s F
Location: At Home in Evergreen Preserve, Lowell, MA

Six years ago today were anchored off an island in the Addu Atoll in the Maldive Islands in the Indian Ocean. Close your eyes and imagine us there on Windbird, anchored next to Ed and Lynne on Constance, with our only conversation with them dealing with plans for leaving the next day to sail to Chagos.

160328 Day 158a Cape Cod, USA–Anchorage in Addu Atoll

On March 28, 2010, Mark and Ed traveled to another island to check-out and Lynne and I made sure all of the food for the next couple of months was on board our respective boats and stored properly. Now fast forward to today. Our only conversation with Ed and Lynne this afternoon was about Ed and Mark and how they are dealing with their respective struggles with cancer. In 2010 we were talking about how best to keep bananas from ripening too fast and today we were talking with them about which kind of juicer to buy. Bananas to juicers . . . who would ever have thought?!!

160328 Day 158b Cape Cod, USA–Bananas

But today the reality is that Ed is in treatment for late-stage pancreatic cancer and Mark is hoping to enter a trial treatment for his late-stage colon cancer this Wednesday. Yes! Today his blood tests were normal and the physician’s assistant we met with felt confident that he would begin the trial on schedule. I don’t want to be too negative, but I’m not going to hold my breath after last week’s disappointment. We don’t have an appointment time on Wednesday, and Rhea, the PA, couldn’t reach the scheduler. Dr. Kwak was not in today, so we will hope to get a call tomorrow. But regardless, we are elated that Mark’s blood count numbers that were ‘out of whack’ are now back to normal and that he can eat ‘real’ food again. But it is a documented fact that under-nutrition is a major cause of death in cancer patients as the cancer cells gobble up all the nutrition. When you have cancer, you just can’t eat enough good stuff to sustain the body’s needs. So juicing is one strategy that helps. You can juice pounds of veggies and end up with just a liter of juice that has all of the vitamins and minerals of the pounds of veggies that you couldn’t possible eat in one sitting. But you can drink a liter of juice that is jam-packed with nutrition—enough for the cancer to consume and enough left over to nourish the body. So instead of talking about ocean passages and bananas, today we were talking about centrifugal force juicers versus single-gear masticating juicers. Let me say this again. Who would ever have thought?!! But the wonderful thing is that six years later, we still have Ed and Lynne’s friendship and we can still plan together. Just the goals of the planning have changed.

160328 Day 158c Cape Cod, USA–Wonderful Friends 2010 & 2016

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.

160327 Day 157 Cape Cod, USA–Easter Sunday with Our Bunnies

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.