Here is a picture of us with Karin and Lew at our graduation ceremony:
The first week we were at Kokolulu there was another guest staying there who is dealing with cancer (for the sake of privacy I am not going to give this person’s name or diagnosis), accompanied by her best friend. They were both the same age as Chuck and me, and this was the first time we were really able to meet and connect with other young people living with a cancer diagnosis. It was so nice to finally have someone we could share stories and “compare notes” with - on hospitals, procedures, medications and side effects, and what it is like to be a young person affected by cancer. We also met Ali, an incredibly sweet and caring young woman who is a summer intern at Kokolulu, and she became like a sister to Chuck and me. Ali is currently studying to be a radiation technician, and is using this internship to better understand what it is like to live with cancer. We couldn’t have asked for a better group of people to spend out time with during the retreat, and we know that we formed friendships that will last a lifetime.
The first week of our retreat Chuck did really well – he had enough energy to attend all of the sessions and to fully participate in the program (QiGong, Meditation, Yoga, Guided Imagery, Group Classes, etc). Then towards the end of the first week he developed a fever, which gave us a scare, but luckily after a few days it subsided on its own (we were of course in touch with his doctors back in Boston and he was under the care of Karin who is a RN). He bounced back by the weekend and we had a lovely time walking around the cute local town with Ali. Then on Monday we took a long day trip with the group to see the volcanoes – which was SO amazing!!
Here is a picture of us at Hawai‘i Volcanoes National Park:
On Tuesday Chuck started slowing down, and needed to take a really long nap in the middle of the day. And then on Wednesday he started to have some really bad stomach and GI problems, which really took its toll on him. He got to the point where all he was able to eat was a banana and a piece of toast (on a good day) – it was like his last bad episode with the AZD trial drug all over again. He rested as much as he could so that he would have enough strength to make the long trip home. By Monday (the day we were leaving) he felt a little more rested but he was still really weak and still not able to keep any food in his system. We said some very sad goodbye’s to Lew, Karin and Ali – and to Hawai’i, which is by far the most beautiful place I have ever been to in my life, and got ready for the long plane ride home.
Our first flight left Kona at 11:00 pm, and landed in Phoenix at 7:45 the next morning. The flight was on time and easy – Chuck and I slept almost the entire flight. We deplaned and walked to our next gate, and saw that our flight from Phoenix to Boston had been delayed two hours. We were disappointed but figured things could have been a lot worse… and then things got a whole lot worse. They had us board around 11:00 am, and then tried to take off 3 times – and all 3 times the engines failed (which was a little scary, to say the least). They finally had to tow the plane back to the gate and they told us to deplane since they were going to try and repair the engines. As soon as we got off Chuck found a place to sit down, and I ran over to customer service to see if I could get us booked on another flight. While I was standing in line they announced over the intercom that our original flight to Boston was being cancelled. When I finally got up to the customer service window a very rude man found us two seats on a flight that was leaving Phoenix at 4:00 pm, arriving in Boston at midnight. We took the tickets – and then proceeded to sit and wait for hours – by the time we boarded we had been stuck in the Phoenix airport for over 8 hours. We were both exhausted and Chuck was really weak and dizzy, since by now he hadn’t eaten anything in two days. The flight was really long and uncomfortable – and there were about 6 babies on the plane who proceeded to scream at the top of their lungs for the entire flight. We really thought we were never going to make it to Boston, but finally we did and my parents met us with open arms at the baggage claim. We collected our luggage and made the 45 minute drive home to Chelmsford. Chuck felt really nauseous on the car ride home and as soon as he got in the house he ran to the bathroom and got sick. He fell asleep in his recliner that night, and I gently woke him up the next morning and moved him into our bed. He proceeded to sleep all day, and again really wasn’t able to eat anything.
On Thursday we went to Dana Farber for Chuck’s weekly appointment, and as soon as his nurse saw him she immediately started him on IV fluids. They gave him 2 liters of fluids over a 4 hour period of time, which rehydrated him made him feel a little bit better. In one week he had lost over 15 pounds, and had become pretty severely dehydrated. While he was getting fluids his doctor came to see him, and she was concerned about how sick the AZD trial drug was once again making him. She said that if he didn’t show signs of improvement soon we might need to think about taking him out of the trial. She said it is so hard to tell just how much affect the trial drug is having on his tumor – she said it could all be the chemo and radiation keeping the tumor at bay, or it could be the trial drug – there is just no way to know. Chuck really wants to stay in the trial if at all possible, so his doctor upped his anti-nausea and anti-diarrhea prescription meds in hopes of calming his system down enough so that he could take in a little nourishment. So far the higher dose is helping some, but Chuck has absolutely no appetite and is still really tired and sleeping all of the time. My hope is that this is mostly due to the stressful traveling we did earlier this week, and by next week he will feel better and get some of his energy and appetite back. Keep your fingers crossed for us…
Chuck and I were supposed to have traveled to Watkins Glen New York this past weekend to attend the Farm Sanctuary Hoe Down, and to welcome our dearest friends who did the 300 mile walk/ride event for Chuck this week, but we sadly had to make the decision not to go due to Chuck being too sick and weak. It broke our hearts not to be there – and we miss all of our friends and the farm so much. But, we were there in spirit, and my mother and sister Jessie were there to welcome the walkers with open arms. A million thanks to Jenn, Casey, Zoe, Todd, Denise, Merrick, Greg, Bryce, Mike and Patty for completing this marathon event in honor of Chuck. We love you all so much!!