Monday, September 28, 2009
Sunday, August 16, 2009
On Friday we spent most of the day at Dana Farber, so that Chuck could get a bunch of IV fluids. He began feeling better almost immediately – the fluids helped to rehydrate his system and flush out the lingering bits of AZD. He was able to eat a little dinner, got a good nights rest, and on Saturday he felt like a new person. He was able to eat a small breakfast, and was alert enough to spend a little time on the computer and then sat outside under the shade of a tree for a couple of hours. This was the first time Chuck had been outside in weeks, and he realized how much he had missed. He does not remember the tiger lilies blooming along the walkway, or the summer squash flowers turning into beautiful ripe squash in the garden. He realized that over the past month he had become numb to everything in the outside world, and was slowly slipping away into a haze of side effects. After coming inside to eat lunch (yay!) he took a little nap, and woke up feeling good. It was the first real day he had experienced in a long time, and it helped to reinforce our decision to take him out of the trial. I have no doubt that by the end of this week Chuck is going to be feeling so much better, and will be ready to enter back into life.
Taking Chuck out of the trial was definitely a very hard decision for us to make, and it also made us take a mental u-turn – we had invested so much in this trial drug, and in the beginning we worshiped it and believed in our hearts that THIS is what was going to destroy the tumor. We invested so much time and energy in this trial, and it was very hard to turn around and decide that this was not Chuck’s magic bullet. But Chuck had given it his all – literally. He had given up his body to research, going through grueling weekly one and a half hour MRI’s, weekly blood tests, and suffered through the horrible side effects. And in the end it just wasn’t for him, he gave it his all but he wasn’t going to let this drug take his life away from him too. This entire experience has been such an incredible mental and physical journey – and we have learned to truly take one day at a time, and to be thankful for each and every day. We have also learned the value of life, a life that can be experienced and enjoyed and filled with joy – and there was no way Chuck was going to be able to experience that kind of life while on AZD. We hold fast to our decision and know that it was the right one.
Saturday, August 8, 2009
Overall we had an excellent week, with Chuck being able to take a “vacation” from the AZD and feel more like himself again. Plus we received the great MRI results, which is something to celebrate. And although we know the week ahead is going to be tough because he is going back on the AZD and the chemo, we will make the best of each day and keep a positive attitude.
Another heartfelt thanks to all of our amazing friends who sponsored the walk – Chuck and I are overwhelmed by everyone’s incredible generosity and loving kindness. We can’t even believe that we now have this amazing trust set up for Chuck, a safety net to ensure that he continues to receive the best medical care and supportive treatments.
Sunday, August 2, 2009
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!!
The 300 Miles For Chuck team has made it safely back home after a long and amazing journey on bike and on foot from Washington DC to Watkins Glen, NY. We've raised over $11,000 for Chuck and Jen, but we are still short of our goal. The fundraiser officially ends tomorrow, and I don't expect that we'll make it to 100%, but with your help, we can push the meter a few points higher. Please donate if you can and spread the word.
To make a donation, visit www.giveforward.org/walkforchuck.
To read more about the Chuck 300, visit www.chuck300.com!
With sincere gratitude,
Sunday, July 12, 2009
On Friday, July 10, we spent the day at Dana Faber and Chuck received his post radiation MRI. This was Chuck’s new baseline MRI - what the doctors will base his next round of treatment on, and the results couldn’t have been better. The swelling in his brain has gone down significantly, his right ventricle has bounced back to normal size (the ventricle is the part of the brain where spinal fluid is produced and stored – before his first surgery his right ventricle had completely disappeared because of the swelling in his brain), and the tumor was smaller in size and bulk. We are overjoyed by these results, and his doctor told us that we couldn’t hope for a better response to treatment She said that they are happy when the tumor responds to treatment by staying the same, or even growing at a slower rate – so to have Chuck’s tumor shrink is amazing. Yay!!
On Friday night Chuck also started his second round of chemo, which is double the dose of last time. The chemo can have some pretty nasty side effects, but so far Chuck is feeling ok and seems to be tolerating the drug well.
We also have some more exciting news – on Monday morning Chuck and I leave for a two week cancer retreat!! We are SO excited, and can’t wait to get away (esp from the hospital) to get some well earned R&R. This retreat, located on the beautiful island of Hawaii, specializes in retreats for people with advanced cancer, and they have a wonderful, supportive program that offers a holistic blend of ancient and modern Western, Eastern and alternative healing therapies. We want to give a special THANK YOU to all of our wonderful friends and family that helped to make this happen for us. We are both so excited and know that this special retreat is going to help aid in Chuck’s recovery. We promise to take a ton of pictures which we will post as soon as we return at the end of July.
When we return from the retreat our friends will already be on day two of the Walk! We are so thankful that we have such an amazing, supportive group of friends, and feel so lucky to have them in our lives. We love you guys!!