Monday, September 28, 2009

New website!!

Check out our new page and blog on the CaringBridge website!! :)

http://www.caringbridge.org/visit/chuckpappas

Please note - we will only be using the CaringBridge website from now on.

Sunday, August 16, 2009

Farewell AZD

Chuck felt pretty rotten earlier this week, he was sleeping over 20 hours per day, had absolutely no appetite, and when he did try to eat he would get very sick. He had lost over 20 pounds since returning from Hawaii, and was very very weak. By Tuesday night he was very frustrated and completely exhausted, and was mentally prepared to tell the doctor that he wanted to stop participating in the AZD trial, since he knew that was what was causing the majority of the side effects that he had been experiencing. I felt the same way - it was so hard watching him suffer and waste away and it was totally breaking my heart. So, we paged his doctor and Chuck told him how much worse the side effects were, and that he really wanted to stop taking the AZD. His doctor told him to stop taking the drug for now, and that they should plan on talking again at the end of the week so that they could decide if he did indeed want to go off the trial drug. At that point his doctor felt like Chuck should try one more dose reduction in the AZD, and that all he needed was another “drug vacation” in order to give his system a rest. But by the time the end of the week rolled around Chuck and I both felt like it truly was time for him to get out of the trial once and for all. There was no way he was going to be able to last another 7+ months on the drug, we couldn’t even imagine what it would do to his body. Chuck had absolutely no quality of life; he spent all of his time either in bed or in his recliner, and had stopped eating solid food. With this type of aggressive cancer there are no guarantees as to when the tumor will start growing again, and Chuck did not want to be risk being extremely sick for the duration of the trial only to have the tumor start growing again after the trial was over. He and I both care very much about quality of life, not just quantity, and we felt like the AZD was completely taking away his quality of life – with no guarantee of success. After only being on the drug for 3 months Chuck was completely ravaged by side effects, we couldn’t even imagine what his life would have been like after a year on the drug. So on Thursday we spoke with his nurse practitioner, who we respect and trust very much, and the three of us agreed that it was time to take Chuck out of the trial. No more AZD, ever again.

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

Good MRI - Bad AZD

Yesterday was hospital day; Chuck went in for another MRI and then we met with his doctors, he had some blood work done, and he got some IV fluids. MRI results looked great – no change since the last one in July. The tumor looks less bulky and less defined, which is what they want to see – and the results are typical of someone on a blood vessel inhibitor (the AZD trial drug is a blood vessel inhibitor). The problem is the AZD is making Chuck REALLY sick, so we had a long conversation with the doctors about quality of life vs quantity of life. When Chuck is on the AZD he is so sick and out of it – his personality disappears and he sleeps all of the time and has horrible GI problems. Because of all of the nasty side effects he was experiencing his doctor decided to take him off of the AZD this past week – last Sunday was his last dose, and each day I saw his personality come back more and more. He started feeling better by Wednesday, and by Thursday he was pretty much back to normal (the new normal). So, we discussed all of this with his docs yesterday, and they asked if he would be willing to try the AZD one more time at a slightly lower dose, and as soon as he starts having any bad side effects they agreed that it will be time to take him out of the trial. He also started the double dose of chemo again last night – so we know that by the end of the weekend he will be feeling pretty crappy again. Another side effect he has been experiencing is a change in his taste – which I guess is pretty common for people on Temodar (his chemo). He hasn’t been eating much at all over the past month – I would say he is taking in maybe 500 calories on a good day. We discussed with his docs and they are of course concerned and told him that he needs to start taking in more calories. They scheduled an appointment with a nutritionist that works at DFCI and has experience with people having issues b/c of chemo. We are a little nervous about this appointment since we have never met a nutritionist that embraces a vegan diet, but are hoping she has some good suggestion as to other types of foods to try that might taste good to Chuck.

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

Our Journey



Words can not describe how amazing our retreat at the Kokolulu Cancer Retreat Center was… Chuck and I both gained so much from the experience, and made some incredible new friends. The proprietors Karin and Lew were so knowledgeable and kind and caring and provided us with some incredible new tools that we can use in the fight against Chuck’s cancer. We also formed a special bond with them on a deeper level, and are now part of their family and they are part of ours – in Hawai’i this is called hani. We also felt a really strong bond with the island, and were amazed by her beauty and healing energy. We can’t wait for the next time we are able to go back to visit this amazing place and our wonderful new friends!!

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!!

Chuck 300 Ends Tomorrow!

Hello dear friends and supporters of Chuck and Jen,

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,

Casey Martinson

Sunday, July 12, 2009

Great News, Wonderful Retreat

I have much, much better news to report this week. Giving Chuck a one week hiatus from the AZD (the trial drug) and then reducing his dose made all of the difference in the world and Chuck is starting to feel much, much better. He is still pretty weak and needs to eat a plain diet – but all in all is feeling like himself again.

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!!

Friday, June 26, 2009

A brief update

Sorry I haven’t posted to the blog in a while, Chuck has been having an increasingly hard time tolerating AZD, the trial drug. He hasn’t been able to eat more than a cup or two of food every day and the only food that his body can tolerate are plain, white carbs (white bread, white rice, etc). And because he has been getting so sick every time he eats he has become dehydrated – so when we were at the hospital yesterday they gave him 2 liters of IV fluids, which made him feel a lot better. The other side effects he has been experiencing are extreme fatigue and his gums have started bleeding – both common side effects from the trial drug and radiation. After meeting with his doctor’s and the trial coordinator yesterday afternoon it was decided that Chuck will take a short 1 week break from the AZD, to see if we can get the side effects better under control. They will then see how he is feeling next Thursday and will decide whether or not to put him back on the AZD, or if they should lower his dose, or put him back on his original high dose. At this point we are weighing quality of life – being able to eat and be awake and feeling ok, with the benefits of being on the AZD – hopefully slowing down the growth of the tumor. It is incredible frustrating and heart wrenching, and it kills me to see Chuck suffering. He has been a trooper through it all, but I know he is getting tired of all of the stomach problems, the sleepiness, and not being able to “do anything”, like go for a walk or go out to eat or visit with friends. Hopefully taking a break from the AZD for a little while will bring his body some relief, and he will be able to get back into living his life.