The Chuck Pappas Story

New website!!

2009-09-28T16:35:00.000-07:00

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.

Farewell AZD

2009-08-16T06:14:00.000-07:00

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.

Good MRI - Bad AZD

2009-08-08T05:45:00.000-07:00

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.

Our Journey

2009-08-02T14:18:00.000-07:00

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!

2009-08-02T08:29:00.000-07:00

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

Great News, Wonderful Retreat

2009-07-12T04:02:00.000-07:00

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!!

A brief update

2009-06-26T07:54:00.000-07:00

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.

Feel

2009-06-14T08:33:00.000-07:00

Last Thursday was Chuck’s final day of radiation and we were SO excited. I baked yummy vegan cupcakes for all of his doctors, and packaged them in cute little cake boxes with pretty ribbon. Everyone absolutely loved them, plus I was introducing folks to just how tasty vegan food can be! Chuck and I said our goodbyes to all of his radiation oncology doctors, nurses and tech’s, and walked out of that wing of the hospital (hopefully) for the last time. It felt SO good.

But not all of last week was happy; Chuck unfortunately has been experiencing some pretty bad side effects from the trial drug, and has been having a terrible time with his tummy. He had a few days when all he could tolerate was a piece of toast and a few saltines, and even that upset his system. His doctor prescribed some medication for this problem (yet another series of pills to take), and while it has helped a little, he is still having a really hard time. It makes me so sad to see him have to suffer like this, especially because there is no end in sight, since he is going to have to stay on all of these drugs forever. For now I am cooking plain, bland foods for him and hoping that the new meds kick in and start working better for him. At his clinic appointment on Thursday his doctor also told us that his platelet count has dropped – which she said is totally normal when going through treatment, but that they would need to keep a close eye on him. She said that at this point all they are going to do is monitor him closely, but if it continues to drop he will need a platelet transfusion. We are really hoping that it doesn’t get to that point, but if it does then we will deal with it and be brave. Chuck of course is still in good spirits and is making the best of each day.

Yesterday I took our two little dogs Hank and Rocco to the vet – I had made an appointment with Hank’s old vet at Angell Memorial Animal Hospital in Boston, who has been seeing Hank since he was a little pup (over 10 years). I hadn’t seen Dr. Brum for 3 years – since Chuck and I moved out to the Ithaca NY. It was so wonderful to see him, and Hank gave him a bunch of happy kisses and didn’t stop wagging his tail during the entire appointment. Dr. Brum’s very first question to me was asking why we had moved back from Ithaca – he thought we had been planning on staying out there for a long time. I told him that we had, and that we were back in MA due to Chuck being diagnosed with cancer. I explained Chuck’s diagnosis, that he had been through two craniotomy’s, and just finished up a 6 week course of radiation at Dana Farber/Brigham and Women’s hospital. Dr. Brum was completely stunned, and just stared at me in silence for what seemed like an eternity. I started feeling a little uncomfortable, and to fill the silence I started talking about how well Chuck was handling his diagnosis and that even though the prognosis is poor – Chuck and I are strong and we know that we are going to fight this cancer with every ounce of strength that we have. He agreed completely and told me how sorry he was and to give his best to Chuck. We then finished the appointment, and when it was over he told me again how sorry he was and that he was so overwhelmed by the information about Chuck that he felt like that he needed to go home for the day – which of course he did not, but this is how much the information had affected him.

As I was walking back to the car with the dogs I replayed the appointment in my head, and felt funny about how “matter of fact” I told Dr. Brum about Chuck… Chuck and I have been very close with Dr. Brum over the years, since Hank was very sick when he was a younger dog and he pretty much lived at Angell under Dr. Brum’s care. He of course was going to take this news hard, but looking back at how I told him about Chuck made me wonder if I came across as unfeeling or too matter of fact. Believe me when I tell you that this has been the hardest four months of my life, but at this point I have talked about the cancer so much and have accepted it as part of our life. But I wondered to myself if Dr. Brum expected me to cry or at least have tears in my eyes when I told him that my husband has this horrible type of cancer. Isn’t this how people are supposed to react when their loved one has cancer – aren’t they supposed to be a sad, tormented ball of jelly on the floor, unable to cope or handle that their loved one is going to more than likely die from this disease? It certainly is how some people think I should be acting and feeling, including Chuck’s very first neurosurgeon. He works at Cayuga Medical Center in Ithaca, and was called in to treat Chuck the night that I brought him into the emergency room. Up until the point he arrived at the hospital the ER doctors and nurses really didn’t know what was wrong with Chuck – they suspected that he was having a stroke or a brain aneurism. But then the neurosurgeon arrived and immediately told the team to rush Chuck in for an emergency CT scan. I had been with Chuck in the ER every second up until this point, but I of course could not accompany him into the CT scan room. So I sat impatiently in the waiting room and made some calls notifying friends and family as to what was going on with Chuck. About half an hour later they brought Chuck back – the massive doses of steroids and pain killers were finally kicking in and he was sleeping fitfully. The neurosurgeon and two nurses came and brought me into a family counseling room, sat me down, and handed me a piece of paper. The doctor asked me if I knew what I was looking at, and I said yes – this is an image of Chuck’s brain. At this point one of the nurses put her arm around me, and the doctor leaned in close and said “Do you see that grapefruit size mass? Well, that is an enormous tumor growing in your husband’s brain.” I numbly looked at the scan again, my mind spinning in circles. The doctor then said “You can cry now. I have been through some serious crisis in my life, but never anything as grave as this, and I needed to cry. So why don’t you break down now and let it all out.” I looked at him and was speechless – how dare this person tell me how to feel! The feeling that was growing inside me was of determination and action – we had to do something about this horrible tumor NOW, there was no time to waste. I told the doctor and nurses that I was fine, and that I would like to go be with my husband. They looked at each other in surprise, and made me wonder if they were thinking to themselves that I might not love my husband all that much. Wouldn’t a “normal” person cry and break down? But I pushed that thought out of my head and walked out of the room, and back to Chuck.

So how am I supposed to feel? I have been through a lot of ups and downs; I have had days when all I wanted to do was cry, or sleep, or just feel numb. But at the end of the day the overwhelming feeling I have is of hope, and strength, and determination. This cancer is part of our lives now, and we must deal with it and continue to move forward, and live each day to the fullest. Chuck and I are not going to take this disease lying down, and are going to do everything in our power to beat it. And I know in my heart that Chuck is not a statistic, and that he is way stronger than your average person, mentally and physically. And I know he is going to fight and fight and never give up – and neither am I.

The Financial Impact of Cancer

2009-06-10T06:56:00.001-07:00

Why are we raising money for Chuck? Watch this:

Visit msnbc.com for Breaking News, World News, and News about the Economy

Finally an Ending

2009-06-08T05:04:00.000-07:00

Just a short post from me today… Chuck and I are both very tired – radiation and daily trips to the hospital are really taking its toll. We had a pretty quiet weekend, I did some cleaning and organizing, and Chuck relaxed, read and played a video game.

This will be Chuck’s final week of radiation – the doctors had originally told us that his last day would be on Friday, but last week we found out that Thursday is actually going to be Chuck’s last radiation treatment. We can’t even imagine not having to go to the hospital everyday, it almost seems like part of our life at this point. After Chuck’s final radiation appointment on Thursday he will continue to have to go in for weekly appointments at Dana Farber, but in June he will only have to go in two days a week instead of 5 days a week. And then in July and August it will drop down to one day per week. Pretty darn exciting. But the most exciting thing of all is that we are finally coming to an end of something – leading up to this point we were always waiting for something to start; Chuck had his first surgery so that they could biopsy the tumor and give us a diagnosis, then we received the diagnosis and decided to come to Boston so that he could have a second surgery to resect the tumor - to give the radiation and chemo a leg up on shrinking the mass. Then 6 weeks ago Chuck began his radiation, chemo and AZD treatment regimen – the chemo and AZD will go on indefinitely, but on Thursday, Chuck can finally say I HAVE FINISHED SOMETHING. He will be done with radiation, and will not have to go through it again. It is a huge accomplishment, and I am so proud of him for persevering and staying positive.

The Joy of Acupuncture

2009-06-02T19:17:00.000-07:00

Acupuncture is a beautiful thing – who would ever think that having someone stick little needles into your body would give such amazing results. But we are true believers in the magic of the needle. And not just the needle, but the acupuncturist herself, for this is truly an art form. I myself went to acupuncture many times in the past and had some not so good results – that was until I met Cynthia. I had been suffering from severe migraines and nerve pain for years, and nothing was helping. After having tried three other acupuncturists (and not receiving results), I was almost ready to give up – but decided to give Cynthia a try. We instantly hit it off, and her acupuncture treatments cured my migraines and stopped the nerve pain. So I knew right away that I had to have Chuck meet with her and give acupuncture a try. He is now on week 5 – and he has been seeing incredible results. Cynthia has been focusing on Chuck’s immune system, on his liver function (to help flush out all of the toxic treatment drugs), and to keep his digestive system on track and his nausea in line. When we went in for Chuck’s clinic appointment two weeks ago, his doctors told us that his immune system looked excellent, and that all of his blood work looked perfect. And they also continues to be amazed by how well Chuck has been tolerating the chemo, the AZD (trial drug), the steroids and the Keppra (anti-seizure drug). Most people get very nauseous and have a lot of digestive problems, but not Chuck. We attribute all of these great results to his wonderful acupuncturist Cynthia, and to Chuck’s overall good health and great attitude.

Here are some pictures of Chuck receiving his acupuncture treatment:

While receiving his treatments Chuck visualizes his brain, the location of the tumor, and a steel wool scrubby pad. He then pictures the steel scrubby pad erasing the tumor.

At the start of every appointment Cynthia check’s Chuck’s pulse, looks at his tongue, and discusses what medications he is currently on. They also discuss how Chuck is feeling and if he is having any side effects from the treatment.

If you live in the Boston area, we highly recommend Cynthia’s acupuncture practice, EastWest HealthWorks www.eastwesthealthworks.com

Beauties in the Backyard

2009-05-30T17:41:00.001-07:00

This morning Chuck and my mom and I worked on unpacking the rest of our stuff from NY, and after a couple of hours of sorting and stacking we completed this not so fun task. Chuck and I were both exhausted from a busy week of appointments and treatments, and we ended up taking a nap around lunchtime. Not long after we woke up my mom called to us through an open window “Jen, Chuck – come look at the beautiful wild turkeys in the backyard!” We both quietly ran outside, and I grabbed our camera on our way out. We were overjoyed to find five absolutely breathtaking turkeys in the backyard – a big old handsome tom and four lovely long legged hens. We sat in the grass, not more than 15 feet away, and quietly watched them go about their turkey business. My mom had just finished mowing the lawn, and I think they were after all of the bugs that she had stirred up. It broke my heart to see them, wild and free and agile – completely different than the domesticated white factory farm turkeys that we’re used to seeing. We listened to the tom gobble and strut for his ladies, and his hens gently clucking in response. They eventually made their way to the front yard, and I carefully followed behind to make sure they crossed the road safely. Luckily there was only one car coming and I signaled for them to stop. The turkeys cautiously crossed the road and entered the woods on the other side. I made my way back to the house, and Chuck and I went inside with huge grins on our faces. Seeing these magnificent animals completely made our day and made us feel a little closer to the country even though we are here in the ‘burbs.

Changes

2009-05-26T19:54:00.000-07:00

This weekend my parents and some of our closest friends packed up all of our belongings, and said their final goodbye to our home in Newfield NY. Chuck and I had already said our farewell to our house weeks ago, after making a hasty trip to retrieve our car and a few necessities. We spent the night in the yurt, because staying in the house was too much for us to take. I think we only slept an hour that night; we spent time gazing at the stars through the skylight in the yurt, going through memories like pages in a well worn novel, remembering the good times, the animals, and the first time we set foot on the property and were overwhelmed by its beauty. Laying in the dark yurt with the doors and windows open to the night breeze, a waft of earthy goat scent washed over me and brought tears to my eyes. I wasn’t there when they took my babies back to the farm; we were at the hospital awaiting Chuck’s first surgery. Knowing that our animals went to stay at Farm Sanctuary makes the burden of giving them up so much easier to bear, yet it still tears at our hearts. A week after they brought our beautiful goats Summer and Skye back to the farm I went there to visit them. As soon as they saw me walking up to the gate they started bleating and crying and jumping in circles trying to get to me. I entered their pen and sat down in the soft straw, and Skye ran over and threw himself onto my lap, just like he did when he was a tiny 10 pound kid. He gazed up into my eyes and rested his head on my shoulder, and let out a big sigh of relief. Summer waited for her turn, and after about half an hour Skye stood up and went to get a drink of water. Summer immediately dove towards me, landed in my lap and squiggled back and forth on her back like a happy puppy. I sat with them for about an hour, knowing that this was going to be the last time I saw them for a long time. When it came time for me to leave I hugged each of them and kissed their soft heads. I slipped out through the gates, and when they realized what was happening they started screaming and throwing themselves at the fence trying to get to me. I reached my hand through the fence to calm them down, whispering my love in their ears. And then I turned and walked away, tears streaming down my face. It has now been over two months since I have seen Summer and Skye, but not a minute goes by that I don’t think about them. Farm Sanctuary rescued them from horrible abuse back in the summer of 2007, and Chuck and I instantly fell in love and knew we had to make them part of our family. In the fall of 2007 we officially adopted them and took them home, and they quickly became an integral part of our farm animal family – bringing so much joy to our lives.

People often wonder how strong they will be when crisis touches their life; you never really know how you are going to hold up until you are tested. If someone told me even six months ago that my beloved husband would be diagnosed with cancer, that we would lose our house and farm, and that we would have to give up our animals, I would have never believed you. And I would never, ever have believed that I would be able to stay strong and brave and never give up hope. But life is funny like that - you never really know how you will react and how strong you will be in the face of adversity. And here I stand, my husband facing the battle of his life, without a house, without my animals, uncertain what the future holds for us. But I am still strong, and filled with so much love and hope and joy. Because in the end we have a roof over our heads, our animals are being lovingly cared for – and most importantly, I am here with Chuck.

HOPE

2009-05-21T17:10:00.000-07:00

Today was Chuck’s 3 week treatment anniversary… 3 weeks of radiation down and 3 weeks of radiation to go. It was also a surprisingly good day, after having a really tough week and a half. At Chuck’s clinic appointment we learned that his blood work looks amazing – he is not anemic, his platelet count is stable, and most importantly, his white blood cell count is high - which means his immune system is still strong even after 3 weeks of chemo, radiation and AZD. We attribute this to Chuck’s overall strength and good health going into this crisis, his positive attitude, and his weekly acupuncture treatments, which have been focused on keeping his immune system strong. We were so happy to finish this momentous day on such a joyous note.

As I said in my previous post, the power port surgery really took a lot out of Chuck, and I have been noticing a slow but steady decline in Chuck’s overall energy level – which is very normal and common for patients entering their third week of radiation. Chuck’s hair also started falling out this week, which for me was still a shock, even though the doctors prepared us for it. I think it made everything seem all the more real to me. Chuck, as always, is taking everything that comes his way in stride, and is accepting of these latest developments. I still don’t know how he does it all so gracefully, working through each and every crisis, no matter how big or small, without a single complaint or “why me”. He really is my hero.

We spent a good deal of time waiting today, waiting for doctors, blood draws, his MRI, EKG, his first nebulizer treatment – and during this time I did a lot of reflection. I thought about our first appointment at Dana Farber, and remember that day vividly. I remember feeling like we stuck out like a sore thumb - Chuck’s young, healthy, and had all of his hair – and the majority of the other people in the waiting room were older, sickly looking, and bald. I thought to myself, what are we doing here? Chuck is the strongest, healthiest person I have ever known (not to mention vegan!), so why are we here in this cancer hospital?! I felt like we were invading the “sick peoples” space, and that we were imposters. But now, after three weeks of him being a patient there (and me being the wife of a patient) I pretty much feel like we are one of the gang. We see the same people everyday, the security guards, the parking guys, the receptionists, the nurses, the doctors – and they all know us. As much as I despise it, we are part of the cancer club now, and this is our new reality. It is so exciting to think that as of today Chuck is halfway done with his radiation, but this is only the beginning of a very long, very hard road. Once his radiation treatment is complete he will need to remain on the Temodar (chemo) and the AZD (trial drug) for a minimum of 1-2 years. And when the 1-2 years is up and they take him off the Temodar and AZD it will only be because the drugs are no longer working and they have to switch him to a new form of chemo and a new trial. More than likely, there will be more surgeries. For this disease has no cure – it is not if the tumor will come back, it is when. Yet Chuck is young and strong and ready to fight – and I know that together we are even stronger. And today, hearing the positive upswing in Abby’s voice when she told us about Chuck’s blood work, and how great she thinks he is doing, we really saw a glimmer of hope. And it is a beautiful thing.

May 13 – May 16

2009-05-20T15:32:00.000-07:00

To all of our wonderful followers – I want to apologize for Chuck and me being “off line” for the past week and a half, it has been an especially tiring time for us, and we were just working on getting through each day.

As Casey wrote previously, last Wednesday Chuck had surgery to implant a power port device into his chest, since the doctors and nurses were having a harder and harder time accessing his veins. The surgery went well and was uneventful, and Chuck and I are both so thrilled that he now has this device and no longer has to be poked and bruised by needles on a daily basis. The down side of the surgery is that it really took a lot out of him, and the incision has been causing him a fair amount of pain. By Wednesday night the skin numbing agents had worn off and the painkillers they had pumped him full of during the surgery were also beginning to lose their effect. Chuck spent the majority of the night in his recliner, and was too sore to lie down in bed. And to make matters worse, after having an uncomfortable sleepless night, we had to leave the house at 6:30 am on Thursday to go to Chuck’s weekly MRI appointment, followed by his blood draw and clinic appointment at Dana Farber, and his radiation treatment at Brigham and Women’s. No rest for the weary.

On Thursday morning we drove the 14 miles to the MRI research facility in Charlestown – which in Boston traffic took us an hour and fifteen minutes. The graduate student who is handling Chuck’s trial case welcomed us, and brought Chuck back to the MRI machine. I headed over to the small café that is located inside the complex, made a cup of green tea, and settled in for my two hour wait. Normally Chuck is done at 10:00 on the dot, but this time they were almost a half an hour late, and I was starting to get worried. It turned out there was a complication when they went to use his power port for the first time, the MRI contrast dye that they inject into him is forced through the iv line at 5 ml/sec, and when they first fired up the contrast injector the connector on his iv line blew and dye started spurting everywhere. Luckily Chuck caught the line and kept the dye from splashing into his eyes – he squeezed the emergency bulb and they stopped the machine and pulled him out. They then cleaned him up, tightened the connection, and the second run went smoothly.

By the time we left the MRI facility it was 10:30, which is when our first appointment at Dana Farber was supposed to be. We rushed as best as we could in the downtown traffic, and arrived at DF by 10:45 – which was a record. Luckily the blood draw went much smoother, since they were able to use the power port, and then we headed over to clinic to meet with Chuck’s nurse practitioner Abby and trial drug coordinator Mary.

Our clinic appointment went well, Abby and Mary are amazing, and always take as much time with us as we need to answer questions and review how Chuck had been feeling over the past week. We discussed how the power port surgery went and how he was recovering. There was also a discussion about what new antibiotic they were going to try Chuck on – they had previously put him on Bactrum, but after only two doses he had a reaction to the drug and started to develop a rash on his chest and back. Since the chemo puts him at a higher risk of developing a certain type of pneumonia, it is imperative that we find one that will work for him. At first they thought that they were going to put him on a monthly nebulizer treatment, but Abby learned that the nebulizer treatment can not be given to patients who are on the AZD drug trial, since there is chance of a drug interaction that could cause heart problems. So Abby then prescribed a different kind of antibiotic called Atovaquone, but when we went down to the DF pharmacy to pick it up they told us that our insurance only covers 40% of the cost and our out of pocket expense will be $600 per bottle (a one month supply). We told the pharmacist to hold off on filling it for now, and we emailed Abby as soon as we got home. She is now working on trying to get our insurance company to cover a larger percent of the drug, since it is considered a lifesaving item, but we will see if they approve it. There is also the option of going ahead with the nebulizer treatment, but that would mean additional EKG’s for Chuck to make sure that it isn’t affecting his heart – and the risk of the drug damaging his heart. Since Chuck is going to be on chemo long term, this means that if they decide to go with the Atovaquone and our insurance company doesn’t come down on the cost, we are looking at a bill of $7200 per year just for Chuck’s antibiotics. So we shall see.

Friday was fairly uneventful – I took Chuck in for his daily radiation treatment and then we came home and crashed. We were both completely exhausted and Chuck was still experiencing a fair amount of pain from the surgery. Luckily we had the weekend to recover a little, and our good friends Jim and Carla came up to see us on Saturday, which we both greatly enjoyed. Sunday was the first real day Chuck was able to sleep, and after waking up at 9 am I made him breakfast, we relaxed, and then Chuck took a long, well deserved nap.

I promise to write a new blog entry tomorrow – it is an exciting day for us, the radiation midway point!! And we also want to write about the amazing acupuncture treatments Chuck has been receiving at EastWest Healthworks - more info and pictures coming soon :)

Chuck is out of surgery

2009-05-13T08:51:00.001-07:00

I just wanted to post a quick update that Chuck had surgery this morning to implant his Powerport and everything went smoothly. Chuck will now be able to download blog entries directly from his brain.

Okay, not really, but he will be able to get IVs, blood samples, and so on without the nurses needing to do exploratory needlework on his arms. So, three cheers for that!

Thursday May 7th Loooonnngggg day!

2009-05-09T04:28:00.000-07:00

Thursday May 7th! First off I wanted to show you guys a few of the MRI's pre-op first surgery so you can get and idea on how big the tumor was and how much pressure it was putting on my brain. Here a few pre-op photos. Oh and the tumor is in my left frontal lobe:

Now remember the brain has two halves and there is a line clearly visible between both hemispheres. Take a look at the first photo and you will see how distorted that line is. It should basically be straight but see how much the left side is encroaching on the right? Nuts...

This third photo actually has dimensions of the tumor... pretty scary

Now here's the post-op first surgery photo. Notice that the line "dividing" the 2 hemispheres are pretty much back to normal and most of the pressure has been relieved. The dark spot that you see is the deflated and drained tumor and fluid. This is what they ended up removing in the second surgery.

Ok... now for my Thursday. Early start today. Woke up at 6 am took pill and got dressed for leaving at 6:30 am. MRI is scheduled at 8 am in Charlestown and we know we will hit a bunch of traffic on 93 plus the construction and it raining :(. I pack a quick breakfast that I can eat after the MRI and we are out the door. We arrive at Mass General at 7:45 am. Not too bad but the crazy thing is that the hospital is only 14 miles away from our house!

I am taken in pretty much at 8 am and now we get to find out if the IV is still working properly. Unfortunately there aren't any nurses here at this facility but there are some people that either used to be or something so there are people that can "fiddle" with things. So of course when they went o flush the IV it wasn't flushing... this could mean there was some clotted blood in the way or the IV had slipped in or out of my vein too far and it was hitting a valve... a bunch of things. They called in someone to take a look at the IV and I believe she used to be a nurse and she messed around with the IV pretty much just moving it back and fourth and flushing it until it finally worked well enough. There was a little pain when the initial injections started but it went away in a second or two and the contrast flowed fine. Man I can't wait to get that power port!!

Because of the IV fiddling I didn't get out of the MRI until 10:05 am and we have an appointment for a blood draw at 10:30 am at Dana-Farber. But we are pretty close and we actually make it just about right on time. I am able to wolf down my sprouted English muffin with almond butter and banana in the meantime!! Tiffany is there to draw the bloods and by that point the IV is useless... she was basically having to "milk" my arm for the blood to come out so she just decided to take out that IV and tap a vein on top of my hand for the bloods. Nothing is easy is it? So bloods are drawn (which the docs say have looked really good) I fill up the urine sample bottle and I am off for another EKG.

I check in for the EKG and am brought right in. They attach the stickers to my chest and feet and attach the wires to those and run the test. Takes about 2 minutes tops. Test came out "boring and normal" which is what the tech said I want to hear and it matched my previous EKG before I started the trial and the rad and chemo :) Good news! I'm now off to meet with my Nurse Practitioner Abigail!

Pretty routine meeting. We went over the medications I am on. I actually ended up having an allergic reaction to the antibiotic I was taking (started to develop a rash on my chest) so they took me off that and are going to do a once a month treatment w/ a nebulizer. Which will be one less pill to take (yay) and Abby said that people react much better to this drug than the pill. We talked about the port and what a good idea it was and about how I'm feeling generally which I told her "great" :) I meet with her at least once a week just so we are all on the same page with everything but obviously if I wasn't feeling right or something I could always call her and discuss it immediately and not have to wait for the meeting. We all chit chat a little more and am out of the meeting by 11:45 am and headed over to Brigham & Womens for my treatment.

Treatment (as almost always) goes off without a hitch. Took a little longer today because they took a bunch of regular x-rays too. They do this weekly basically just for positioning of my head. Like I said before it's very import that they radiate the same place every time. All done! Heading home.. and make it there by 2 pm. Not too bad. Tomorrow shouldn't be a bad day at all. Only have treatment and nothing else. Keeping my fingers crossed! Until tomorrow :)

-Chuck xoxo

Wednesday May 6th. Why IV's suck >:(

2009-05-09T03:06:00.000-07:00

Wednesday starts off like any other day... wake up take a pill, go back to sleep. Wake up an hour later take 5 pills and go to sleep if you are able to a second time. Then wait 2 hours take 3 pills and then you can finally eat breakfast at 9 am. I'm usually not a big breakfast guy. I usually skipped it and had a larger lunch or just a snack mid morning but for some reason not being able to eat before 9 am really bugs me!! So I am STARVING by 9 am and usually eat a pretty good breakfast which in the long run is a good idea. I'll eat a smaller lunch and a healthy dinner. Bing, bang, boom and all of the sudden it's 11 am and time to head to Brigham & Womens.

We arrive in good time around noon and I check in. The machine is running 30 minutes behind but I have been so lucky with not waiting that I figure at least a few times out of my 33 visits I will be delayed. No biggie. The waiting room is comfy and I had stuff to keep me occupied. So I made a cup of green tea and settled down.

At about 12:45 pm I was getting a little anxious so I went up to the check in desk and made sure that I was checked in properly. She said that I wasn't which sucked.... but she checked me in manually and I was called in 5 minutes later which they said would have been the time anyways what with the back up of the machine...

Treatment was quick and easy and was out in 5 minutes (as usual) and now am headed to Dana-Farber to get my IV put in and bloods drawn. It seems that most of my doctors now know that I have pretty deep veins and it is not that easy to get an IV in me. So today I was sent into the chemotherapy room where the nurses there are pretty much experts on setting IV's (which I am certain they are on most people). So I'm sitting in a comfy chair wit Jen sitting across from me waiting for the nurse to come in. She finally does and I explained to her my whole vein situation and she seemed pretty undaunted by it, which I liked. I showed her the spots where they have been successful (you can tell by the bruising on my arms and wrists and she goes to work. She tries the right arm and to the left opposite my elbow (in the crook). She insert the IV and then....... nothing. She "digs" around a bit which basically means she pulls the IV forward and backward to try and get some blood flow but no dice this time. So she removes the IV and puts a small bandage over the puncture and says she is going to get another nurse to try another spot. Here we go!!!

Another nurse comes over and I and the first nurse explain the situation to her and she said that she'll give it her best which at this point is all I can ask for. For attempt number two she tries the exact same place on the left arm instead. Same exact deal happens with maybe a little blood flow but not enough to take samples. So she removes the IV and puts a small bandage on it. So I have matching bandages on each arm. Yay! Think they were pink and blue...

Just to remind you all the reason I am having this IV put in is for my MRI on Thursday morning so they can inject the contrast. If this was just blood being drawn they could do that with a much smaller gauge needle and tube that doesn't need to handle the pressure of the contrast injector.

Now we have a third nurse coming over. He takes a look at my arms... and my wrists and said we'll get this thing in... something to that effect. He ended up choosing a vein on the top of my wrist. It was easier to see and puffed up pretty good when I flexed my hand and he put on a tourniquet. 1,2,3 needle in and the blood start to flow. He need to work it around a little but he got the samples he needed and they were able to flush with saline without any pain or problems. There it was, three attempts by 3 great nurses and finally on the third try they got it.

While I was still in the chair I started talking to one of the nurses, I believe here name is Tiffany about something called a power port. She said that would be a great idea in my situation and this is what I've heard from my other nurses and doctors. Here's a link to a website to basically show you what a power port is : www.powerportadvantage.com/about.html

Basically, when I get this implant the catheter is actually inserted directly into an artery and the port itself is inserted under the skin. So once in place you would only notice a little bump on my chest and nothing else. I can swim, take showers whatever normally. This port can handle IV contrast, blood draws, everything and it can stay in my for at least a year or until the docs see fit. All that need to be done to access the port is basically putting in a specially made IV needle an a few tubes coming off of it. The needle goes through my superficial layer of skin and into the port itself and that's it. When they are done accessing the port the IV needle is removed safely and easily and that's it. Much better than searching for veins and all that bruising etc :) and it will give the nurses a break too! Oh good news!!!! I am scheduled to get my port "installed" Wednesday the 13th at 3pm :) So that means no more IV's!!!!! I'll keep you posted.

Needless to say Wednesday turned out to be a pretty long day. Didn't get home til 3:30 - 4 pm but that's ok.... the thought of no more IV's is still buzzing in my head. Sorry for the all text blog for today. No pics but for Thursday blog I am going to put up some MRI pics you may find interesting :) Until then! Take care.

-Chuck xoxo

Video Treat

2009-05-06T06:32:00.000-07:00

Here's a fun little montage of clips from our 30 mile walk on Sunday - before the pain ;)

Tuesday, Cinco de Mayo!!! Day 4 of treatment!

2009-05-05T18:03:00.000-07:00

Well today was day 4 of treatment and it went off without a hitch. But I guess I'm getting ahead of myself... what about yesterday?!?! Day 3 of treatment!! :)

The best thing going right now is that we finally have a set schedule!!! Yeah! All of my treatments are Monday through Friday at 12:15 pm. So we need to leave the house by 11:15 and we are usually home by 2 pm. Not too bad. Thursdays will be my longer days since I am part of the AZD2171 drug study. I need to be at the Mass General Hospital Navy Yard "branch" at 8 am for and MRI. As I've told you before these MRI's are pretty intense and last for one and one half hours to two hours with contrast. So now that I'm thinking about it, I guess Wednesday will be a little longer of a day too since Dana-Farber will insert an IV for me and then most likely take bloods and urine at the same time.

So, my last radiation treatment will be June 12th... mark that on your calendar! I know I'll be crossing off the days :) the MRI's will also be once a week until the end of radiation then they will space out to once a month. After the radiation I will still be on the trial drug and the chemotherapy for a year of more. From what I gather I will be taking the AZD2171 daily and the chemo once a month.

Back to Monday the 4th... woke up early... around 6 am ... I think I was actually excited to get this week started. Jen and I had a nice relaxing weekend (which we desperately needed) but I was definitely ready to get going. First things first... meds... and there are a bunch. Here's a schedule of what and when:

6 am - Take anti nausea pill on empty stomach
7 am - Take chemotherapy pills and AZD2171 pills (need to fast 2 hours after taking pills)
9 am - Take anti seizure pill, steroid pill, antacid pill, and stool softener and or laxative
2 pm - Take steroid pill
6 pm - Take anti seizure pill and antacid pill

Now that's everyday. I also take a gigantic antibiotic pill on Monday, Wednesday and Friday. I guess compared to other people this is no big deal but coming from a guy then never took any medications or whatever... taking 14 pills a day is a lot.

So after taking my 7 am meds Jen and I and our dog Hank decided to go for a walk around the neighborhood. It was a cool and calm morning and perfect for a stroll. Hank was a good boy and didn't stop at EVERY tree but maybe every third and we probably did a little more than a mile and that's up and down hills. Now I know this doesn't compare to anything that Jenn, Casey, Robin and Zoe are doing but I'm feeling pretty pumped about it!

We got back around 8:30 and I am absolutely starving but need to wait 30 more minutes (which I of course did). Breakfast was a small bowl of cereal with a sliced banana and soy milk and a sprouted wheat bagel toasted with almond butter. Oh and a nice cup of Japanese green tea to wash it all down. We were out the door and in the Jeep by 11:10 AM.

We hit a little bit of traffic but not too bad. Seems like Mondays might be a busy appointmet day at Brigham & Womens, lots or cars and people but all in all no problemo. I had actually forgotten my wallet (duh!) which had my check in card to the treatment center and my blue Dana-Farber patient card which helps out w/ the parking fees. Luckily we were able to get copies of both so now Jen has one of each in her wallet just in case! Checked in by 12:05 pm and I was in the treatment room 5 minutes later. Treatment was a breeze. Took a total of maybe 5 minutes. So, I took more pictures of my mask and the actual machine that does the treatment. Pretty cool stuff.

So here you can see some of those "x's" drawn onto the mask. Those are used in conjunction with lasers to make sure the mask is in the same position each and every time.

Same deal here just the opposite side :)

Here's a top view. Notice the "x" on the solid part of the mask? That is where the tumor site is. Left frontal lobe. Next is a photo of the machine that performs the radiation treatment.

This machine is amazing. It completely rotates around my head. It takes 3 "shots" at the tumor site. First one is on the right side of my head then left then directly above. During the directly above shot the table I am lying on also rotates to put me in the correct position.

Treatment is done for today and I had a meeting with my Oncologist just to make sure everything was going along well. We went over what meds I am taking and I told her about a small rash I was developing on my face and she determined that I may be having a reaction the the antibiotic so she decided to switch me to a different type and that the rash should go away but to just obviously keep an eye on it. I also had my blood pressure taken just to make sure all was good. The trial drug I am taking tends to raise blood pressure since it is a blood vessel blocker. I take it twice a day at home but just want to double check while I am there since they have more accurate machines and I am in there everyday. So far everything has been hunky-dory :) Off to home we go!

On our way home we head to Whole Foods for much need supplies but boy they sure don't give those organic veggies and fruits away for free do they? Then we were home by 3:30 or so. I took a short nap after lunch and was ready for my second acupuncture appointment at 6:30. I am super pumped for this. But alas... this story will have to wait. I want to tell you all about this separately form my daily routine. I believe it's very special and want to explain fully what I am putting into it and getting out of it. I also want to get some photos too so I should have the acupuncture blog up by next Monday (which is my next appointment). Monday ends and...

Tuesday begins! Day 4 of treatment. Looking forward to a nice easy going day. Slept til 8:30 am this morning (other than Jen giving me my meds at 6 and 7 :P) Breakfast same as yesterday (yum!) did this and that and we were out the door by 11 am. It was rainy today but traffic was good. Not as busy as yesterday and was checked in by noon. Machine was running a little behind and was not seen until 12:45 but still the waiting room is comfy and I had Jen with me and a book so all was good. Treatment went well. Had my bp taken and that was good 131 over 82 and then off to home we went. All in all today was a very uneventful day which is definitely nice for a change.

I also want to take a second here and send out some thanks... well maybe a whole hell of a lot of thanks... I have setup a wish list on Amazon.com and had a list of integral items on it and they were basically all purchased by various caring people. Some remained anonymous but most I knew who purchased what. I just want to thank ALL of you from the bottom of my heart how much I appreciate how much you've done for me and Jen. In these weird economic times I know things are hard and "extra" money is hard to come by. Jen and I just appreciate each and everyone of you so much. I know that it is all of our friends love and prayers and positive energy or whatever you are beaming our way that is going to help us beat this: no if's, and's or but's and that's the truth. No doubt in my mind... only a tumor.... and that tumor doesn't stand a chance. Until next time..

Love Chuck xoxo

A little help from our friends

2009-05-03T15:47:00.000-07:00

One can never really plan for a life changing event, one that involves your partner, lover, best friend being diagnosed with cancer. You always think it is something that happens to other people, but that it will never happen to you. In my case, I never in a million years thought that something like this would happen to Chuck. Chuck has always been the healthy one, the one that everyone else can lean on - our rock, or as I lovingly call him, my ox. So I was very unprepared for this diagnosis. Working so closely with the animals at Farm Sanctuary, Chuck and I are very familiar with life, death and illness. We have nursed countless animals back to health, like our precious little goats Summer and Skye, and have provided hospice care for others, like our beloved baby lamb Joy, who passed on before we were ready to say goodbye. So Chuck and I are probably more familiar with life and death than the average person. Yet Chuck's diagnosis caught us all off guard, and took our breath away. But through it all, we have been able to stay strong, thanks to the love and support of our family and friends. Tonight, I would like to write a few words about some very special people.

On the night of March 23rd I rushed Chuck to the hospital just after midnight. At first they feared that he was having a stroke, or that a blood vessel had burst in his brain. They then performed a CT scan, and we learned that he had a massive brain tumor. It was a frantic, terrifying time, and I felt like I was underwater or in a dream. I was all alone and knew I needed someone with me - so I called our dear friend Susie, who also happens to be Chuck's boss at Farm Sanctuary. She rushed to be by our side and spent the night with us in the ER and ICU, helping me to comfort Chuck, and to give me a shoulder to cry on. She was my guardian angel that night, and is the reason I was able to stay so strong for Chuck. In the morning I wrote down notes on scraps of paper for her, instructions on how to feed and care for our 19 animals at home. She drove out to our house, fed our dogs, cats, chickens, turkeys and goats - and made sure that they were comfortable and taken care of. She then came back to the hospital to sit with us. Susie has always been an incredible friend and mentor to me and Chuck, and this experience has tightened our bond even more. We love you Susie.

While Chuck was in various hospitals and we had to be away from home, our other close friends Karen and Chris came to our house daily to care for our animals, and to give them extra special love and attention. We were able to sleep at night knowing that our critters were safe, happy and loved, which was such a gift. After Chuck came home from his first operation, Karen and Chris had lovingly filled our fridge with groceries and had a delicious pot of soup waiting for us on the stove. We could have never done it without you ladies, and are forever grateful for your help and support. We love you Karen and Chris.

Our good friends Natalie and Bryce have supported us in so many ways - Natalie has been helping me with work so much, and Bryce has been helping me with my various computer issues... but more than that, they have been there for us since day one - helping Jenn and Casey get our house and barn in order, bringing comedy CD's for Chuck to listen to in the hospital, and welcoming our beloved chickens Mama, Feather, Messy and Moxie into their home. Thank you so much for everything Natalie and Bryce, we love you guys.

At Farm Sanctuary we are like a big family - and never before has this been more clear to me. The farm has been so incredibly supportive of both me and Chuck, and we are so thankful for everything that they have done for us. I especially am thankful for the support and love I have received from my team - they have made this stressful time easier to bear, and have all helped to lighten my burden. So thanks to all of my friends and colleagues at Farm Sanctuary, and especially to my staff, who has been holding everything together in my absence - thank you from the bottom of my heart Annie, Shannon and Zoe. And to Samantha, for all of the love and support you have shown to us.

And now I come to two very special people, the kind of friends most people only dream of having. Never in my life have I met two people who are as giving and compassionate as this couple - they have completely rocked our world, and have kept Chuck and me afloat during this difficult time. Jenn and Casey have sacrificed so much for us - they have cleaned our house, taken care of our animals, made our meals, acted as our "secretaries", slept on the couch with our dogs, you name it, they have taken care of it for us. And now they are planning on walking 300 miles for Chuck, which is the ultimate show of love and devotion. Jenn and Casey - we owe everything to you, and love you both so much.

And I can't leave out our family - the love and support they have shown us knows no bounds. They have sacrificed for us, cried with us, laughed with us, and loved us beyond reason. We love you all more than life itself.

Finally, I want to thank every single one of you - for reading Chuck's blog, for your support, and for caring. We could not do it without you.

May 1st 2009. Day 2 of treatment and yet MORE mri's!

2009-05-01T15:14:00.000-07:00

Well, here we are at day two. Made it through yesterday without any issues which makes me feel more and more confident with each passing day. I know that it's only day two of treatment but I have been living with the knowledge that I have brain cancer for over a month now and that can really weigh down on you. I am actually using that knowledge to fuel my fight against this cancer and I KNOW that I can and will beat it... no question. It has never crossed my mind that I wouldn't... so let's just take that idea and bury it :) Ok.... Day Two!

6 am - Woke up and ready to face the day. Today won't be that bad. Radiation is at 9:15 and then I have a 10:30 blood draw and urinalysis. Then we need to head to MGH for the trial study mri's at 12 pm til 2pm. Then, it's the whole weekend off! Boy that sounds good (and Jen seconds the thought!) Out the door at 7:45 am. All fed and clean and brushed and polished. Jen's mom Cheryl came with us today. We've been having trouble navigating through downtown Boston getting to the Mass General Hospital Naval Yard Research Facility for the mri's. She knows the roads down there so hopefully we won't get lost again today!

We arrive at Dana-Farber at 8:45 am and park. (This is the stinker... at least 5 bucks a day to park.... 25 bucks a week and need to do this for six weeks... so 150 bucks just in parking over the time of treatment and that's not including the 50 miles per day cost for fuel... man it adds up fast!) We walk over to the radiation treatment center and I check in at 9 am. I am called in promptly at 9:20 and head into my appointment. Actually I shouldn't really call this an appointment... it's more like a mini meeting... it takes like 5 minutes tops... but for clarity, I'll refer to it as my appointment.

I was able to get a photo of the set-up today!! Yesterday there was a glitch so the photo didn't turn out. Here's what I look like waiting to get the radiation. That machine to my right is the actual device that delivers the radiation.

The "mask" that you see over my head is pretty cool. When I went in for my pre-visit last week they fitted me for it and took a bunch of measurements. The mask is made out of some sort of semi rigid mesh.. kind of a cross between plastic and cloth and gives a little when you push on it but it keeps my head very very still which is what they want. Basically this mask keeps my head in the same exact position every single time I get treated, so the radiation hits the same exact spot every single time.

In order to mold this mask to my face they somehow warmed up the mesh and then when I was in position on the table they brought the warm gooey mask over to my face and placed it on and kind of let it drape over and fill all of the curves of my eye sockets, chin, nose etc. It dried rigid in about a minute. Then they used lasers to plot the exact coordinates of the tumor site and marked those onto the mask. Now my mask sits in one of their cabinets waiting for me every Monday through Friday. The cool thing is... I get to take it home with me after radiation is over! Creepy but cool... I'll get a good photo of just the mask on Monday to show you close up.

9:30 am - We leave the radiation treatment center and head to the Dana-Farber cafeteria for a breakfast/early lunch. Since I am getting an mri done today at noon I need to hold off on taking the trial drug and chemo pills until after the scan. So I need to eat now so I will have fasted 2 hours prior to taking the pills.. fun.. fun. They didn't have much of a choice this morning so I went with a whole wheat bagel with peanut butter and some potatoes. Washed it all down with a Naked Juice called Red Machine (I believe) which is da bomb. We are out of the cafeteria by 10:15 and checked in for my blood test by 10:20.

10:25 am - Called into exam room to have an IV put in and bloods drawn and also urine collected. Everything went without a hitch. IV stays in until after mri is completed. Unfortunately, all these trial study mri's need to be used in conjunction with contrast so I need a line put in each time I go which is now going to be once a week. Not too bad. So, we pick up our car and are on the road to Charlestown by 10:40 am for my 12 pm mri appointment.

11:10 am - Yup, we got lost again!!!! Again!!!! I tell you... ever since the big dig Storrow Drive has not been the same.... our GPS gets all crazy when we drive down there... the google maps don't seem to jive... it's like the Bermuda Triangle of Boston!! But we do finally make it with plenty of time to spare. Check in at 11:15 am and read some magazines and was ready to go right at 12 pm.

12 pm - MRI setup. Here's a photo of the room and one of the mri machines they use on me.

So here I am on the mri table. This is before I am actually hooked up to anything or have the foil over my head to keep it in place. What they will do first is flush my IV with saline to make sure all is working properly. You can just see the purple gloved hand with the saline in it on the right hand side of the photo. I will also insert earplugs at this time cuz mri machines are VERY noisy!

Here my IV is being flushed and they are preparing to connect the contrast solution tube to the IV. Contrast is used so they can get a better image of the blood vessels in my brain while taking the mri. Here's a photo of that below:

Now with the contrast hooked up they are able to adorn me with an oxygen mask and a head foil to keep my head stable and in the same position for the 2 hour mri session. Here are a few photos of that...

These are pretty much the same photo but I figures I'd put them both in. So, mri goes off without a hitch. They take me out at 1 pm so I can take my anti nausea medication (which needs to be taken 1 hour before my chemo and trial drug) and send me back in to finish up. Out by 2pm, take my meds and we are on our way home. We are back by 3pm and I am taking a nap by 3:30.

We are so looking forward to this weekend of doing NOTHING!!!! It has been a long crazy past week and I think we deserve the rest. So enjoy your weekend everybody and check in again Monday for treatment day number three!! See you then! Love -Chuck

Thursday April 30th 2009. First day of treatment!! Woo Hoo!

2009-04-30T13:55:00.000-07:00

Long but exciting day today!! Finally the first day of radiation/chemotherapy and trial drug. It feels like a giant weight has been lifted off of my chest. All these past weeks of tests and waiting and tests and waiting.... finally something is happening.

First things first.. I have to say that I would not be where I am in this stage of healing ... with the surgeries, fantastic doctors, hospitals, the drug trial, everything ... without my wife Jen. She has been MY everything.... From making sure I take my meds on time to getting me to my appointments on time. From cooking dinner to cleaning the house .... you name it... she does it. She has a beautiful soul and am so so lucky to have her. I love you Jen.

4 am - Jen wakes up to wake me up to take my first dose of Kytril (an anti nausea drug for chemo)

Back to sleep.

5 am - Jen wakes up to wake me up to take my first 165mg dose of Temodar (chemo pills) and
AZD2171 (blood vessel inhibitor (trial drug))

Back to sleep

6 am - Jen wakes up to wake me up and we both get up for the day :) I must fast for an additional hour after taking the chemo. So I make some Teeccino and a sprouted grain bagel w/ raw almond butter and a bananna for the ride into the hospital. Jen feeds the dogs and does what she does in the morning and we are out the door by 7 am.

We arrive at Brigham & Women's at 8:15 and make our way to my suture removal appointment!! I am very excited about this... these things have been dang itchy! The pic up top is what it looked like w/ the sutures in. The Doc's used staples on my incision for the first surgery but I liked the sutures by far. Much less scarring and "bumpiness" :P

Anywho... I check in for my appointment and am taken into an exam room to have the sutures removed. Now believe me... this was by no means painful but anytime you are dealing with stitches and scabs and yer cranium.... you know what I mean. But my nurse Nancy had an expert hand and great bedside manner and we got through it in like 2 minutes :) Here's the tray with my used up sutures. Thank you for holding my head together sutures!!!!!

Here's a quick pic of post suture securing :) Ahhhh... relief

Now to the good stuff. With my sutures finally out I can now get my first radiation treatment which to most people probably doesn't sound that exciting but it is music to my ears. We got to the appointment about 30 minutes ahead of time and so we did what we do best..... waited :)

A little after 10 am I got called in (not too bad) and was on my way. Today's appointment is to be a little longer than usual since it is my initial appointment. I had asked the nurses to take some pics and some of them were bad ass but for some reason the setting on the camera was off kilter so they didn't make it onto the media disc.. but I will ask them to take more tomorrow so you guys can see the mask and the whole get up.

They took a few extra x-rays that they will use for plotting exactly where my head sits so it will be in the same position every single day I go in for radiation... makes sense to me. Then they say "OK, we're ready to start the treatment" and before I knew it "OK, you're all set". I mean it was really almost that quick. Maybe 3 minutes tops. All the techs and nurses were so nice which is great since I'll be seeing them 5 days a week for a little over a month. :) My last radiation treatment will be June 12th, 2009. Yet another goal to look forward to! Goals are good :)

Now time for lunch. Luckily Dana Farber has a pretty nice lunch menu in their cafeteria. We had some kick ass salads and fresh fruit and cheated a little with some veggie "meat" balls and sauce with a little bit of pasta. Wash that down with some good ole water and we were satiated. It was now about 11:30 am and I had a prompt 1 pm appointment to have bloods drawn and a urine sample.

We spent some time in the patient services library, surfing the web and checking out some books and an hour passed in what seemed like a blink of an eye and we decided to go check in for the blood draw. 1 pm sharp (I have been so lucky) I was called into the exam room and bloods were drawn... went to the rest room and urine was provided :P and then we were on our way home by 1:30.

All in all a very eventful day but in my eyes a very positive one and a giant step in the right direction. It feels so good to be proactive instead of just waiting for things to happen. A,lso, no side effects to the new medications/chemo today!!!! Feel like I did yesterday but may just a little tired due to our long day and me getting up all hours of the morning! :P

Well thanks for taking the time to read about my day. More to come tomorrow and will have some cool pics of the x-ray - radiation machine. Thank you all for your love and support!!! It means the world.

Pig rescue featured on Weather Channel Storm Stories

2009-04-29T08:17:00.001-07:00

The Weather Channel's Storm Strories will be featuring the Midwest floods of 2008 this Sunday at 8pm ET. There will be at least one segment on the pig rescue, and you can see a preview of that here. I didn't see Chuck in the preview footage, but Jen is on camera for a bit at the end, feeding one of the rescued pigs at Farm Sanctuary. Good stuff.

You can help!

2009-04-27T07:02:00.000-07:00

DONATE ONLINE!

You can now donate online to the 300 Miles For Chuck walkathon! Just click the link or go to:
http://www.giveforward.org/walkforchuck

You have to register on the GiveForward website to make donations, but it is quick and easy!

Information on donating to the Chuck Pappas Trust will be available soon!

WISH-LIST!

For people who are in a gift-giving mood, we have also set up a wish-list of things that Chuck could really use. One of the things on this list is a digital camera to help him document his experience and keep us all up to date right here on this blog. As an alternative to buying a new camera, if anyone has a used one they no longer need, please let us know.

The Story Begins

2009-04-27T06:56:00.000-07:00

The Chuck Pappas Story

This is a blog to tell the story of Chuck Pappas. He is one of my closest friends. He is a man of amazing talents, huge heart, astounding strength and incredible compassion. Chuck and his wife Jen moved the country outside of Ithaca (Newfield to be exact) in December 2005 when he got a job as the Fulfillment Coordinator at Farm Sanctuary. My wife (Jenn with two “n”s) worked in the same office, and the four of us soon became good friends. I was impressed first by his great sense of humor and his seeming ability to build, fix or craft anything. The coffee table in their living room, which he had built from salvaged lumber and hardware, was a work of art. He also made these wooden boxes that hung on the walls, pieces that my art vocabulary is woefully underdeveloped to describe, but something like folk art meets Modernism meets Lewis Carol to build a birdhouse. I didn’t know what to call them (still don’t) but they were super cool. He was a real renaissance man.

I also thought it was cool that Chuck and Jen had chickens. Being vegan like us, they did not keep these chickens for their eggs but for their companionship, for the sheer pleasure of caring for them. In November 2006, they expanded their miniature sanctuary by adopting three turkeys from Farm Sanctuary as part of the annual Thanksgiving Turkey Adoption. Most people “adopt” turkeys at Farm Sanctuary in the nominal sense only: you send in a contribution; you get back a nice card featuring the picture and biography of a turkey whose lifelong care you have helped to sponsor. But Chuck and Jen, never short on commitment to animals in need, were glad to make actual space on their homestead for Karma, Cloud and Butterfly. Like almost all turkeys who began their lives on factory farms, these three were destined to suffer health problems. Particularly, they suffered chronic and debilitating foot problems because their toes had been cut off (a standard industry practice) and they had been bred to grow enormous. But Chuck and Jen dutifully did everything they could to provide a quality of life that made life worth living: changing foot wraps, cleaning stalls out daily, building better ramps to help the birds go in and out of their coop, paying for vet bills that never end. Most people don’t have room in their circle of compassion for a turkey, “a mere farm animal.” But Chuck and Jen aren’t most people.

The next additions to the Pappas animal sanctuary were Summer and Skye, two rambunctious sibling goats that had been rescued from an abusive situation in NYC. If building a turkey coop had been challenging, building a goat barn and pasture was a major undertaking. My Jenn and I were actually living in a yurt on their property at the time, so we saw first-hand the amount of work, love and money that went into giving those beautiful goats the best home a goat could ever want. By this time, Chuck had moved from his original job in the literature and merchandise fulfillment office to become the Shelter Projects Manager at Farm Sanctuary. So his work at home became like an extension of his work at work. For some folks, that would be a nightmare. But it seemed to me like this was what Chuck was born to do.

As the Shelter Projects Manager, he made sure that things on the sanctuary end of Farm Sanctuary all worked the way they were supposed to. If something needed to be installed, repaired, built or remodeled, he made sure it got done – often by doing it himself. Plumbing, electrical work, carpentry, fencing, landscaping, and even dredging the duck pond were all in a day’s work for Chuck. He also helped where needed with animal care, whether that meant feeding the cattle or transporting animals to and from the vet hospital. Right after I joined the Campaigns Department at Farm Sanctuary in 2007, I had the opportunity to drive with Chuck to Ontario, Canada to pick up half a dozen ducks that had been rescued out of the trash at a foie gras farm. We got lost along the way and had some trouble at the boarder – a long and entertaining story, I assure you. But in the end, the ducks arrived safely back in Watkins Glen where they now enjoy a life of ease.

Then last summer, Chuck was sent on a very different kind of rescue. Rains had been piling up on the Mississippi in late July, and before long there was major flooding all along the banks in Iowa, Illinois and Missouri. This happens to be an area where there is a lot of pig production, and when the waters rose too high, many farmers abandoned ship. Or more accurately, they drove off down the road, leaving the pigs to fend for themselves. Suddenly, pigs could be seen paddling for their lives through the swollen muddy currents, many desperately scrambling onto levies to avoid drowning. Unfortunately for them, their hooves tended to endanger the integrity of the sandbags that held back the river. Local law enforcement, among others, decided it was better to shoot pigs than risk a leak. Amidst all this chaos, a multi-organizational team was formed with representatives from the International Fund for Animal Welfare (IFAW), the American Humane Association (AWA) and Farm Sanctuary. They went to Oakville, Iowa, an area that was particularly hard-hit. Chuck was one of the first on the scene from Farm Sanctuary, along with Dan D’Eramo (SP?) (Chief Cruelty Investigator) and Julie Janovsky (Campaigns Director).

For the next 21 days, Chuck and the others braved toxic-sludge-laden flood waters, scorching sun, poison ivy and more as they fought to save as many pigs as they could. While many locals were supportive, others saw the pigs as nothing more than meat or money, and they greeted the team with deep suspicion or outright hostility. Chuck and Dan had left New York in such a hurry that they barely had time to pack. For about the first week, they had almost no spare clothes to change into and little more than Cliff Bars and PB&Js to keep them going. They slept a scant few hours each night and woke before dawn to keep the rescue going. It was hard, exhausting and heartbreaking work. One day, Chuck found a pig who had been shot in the stomach. By who? For what? He soon realized that the pig was still alive, but she was beyond saving. All he could do was offer soothing words and a little kindness as she slowly slipped away. In the end, 69 pigs were brought back to Farm Sanctuary, thanks to the efforts of the rescue team. Everyone I’ve talked to who was on the ground with Chuck in Oakville has spoken of how impressed they were by his courageous and tireless performance. Chuck would never call himself a hero. But to everyone else on that team, and to the pigs whose lives were saved, that’s exactly what he is. There were other heroes in Oakville too, but we’re talking about Chuck here ;)

Summer faded into fall, and fall into winter. I guess that’s when Jen started to notice that Chuck was slowing down. Granted, working outside on the shelter in sub-zero weather is hard work, but even allowing for that, he seemed to be more tired he should be. He started craving junk food. He started forgetting to do his chores around the house, and some at work. But none of this seemed particularly alarming, just the ebb and flow of life.

On Saturday, March 22 this year, a few of us hung out with him all day and he seemed his usual self. But he spent all day Sunday with a monster headache. He’d been suffering from migraines since he was 12, so he took some pain killers and stayed in bed. On Monday, he still didn’t feel well, and Jen went to work at the Farm without him. She got a call in the middle of the day from someone on the shelter, asking where Chuck was. He hadn’t called in sick, and that was very odd behavior. He was still in bed when she got home, and by late that evening, she knew that something was wrong. He was becoming increasingly incoherent, and she decided to take him to the emergency room. After some undue delay in the waiting room, the doctors took a CAT scan and found a dark mass on Chuck’s brain. Suddenly the emergency room started acting like there was an emergency. As his vital signs went into a downward spiral, steroids and other medications were administered to keep him alive. Jen and Susie (Chuck’s boss) spent the night at his bedside in the Intensive Care Unit, doing everything they could to keep him awake and keep his pulse from dropping too low.

By the time my Jenn and I found out what was going on the next morning, his condition had stabilized. Jen’s mom Cheryl arrived from Boston, and Chuck’s mom Nancy from Connecticut, and we all waited together to see what would happen next. The steroids seemed to have relieved enough pressure on his brain that he was able to see us. He seemed relatively fine for while. We joked with him a bit while he waited to be taken for another MRI. But by late morning, Chuck’s pain was coming back and his condition began to deteriorate. The next thing we knew, he was being flown to Rochester by helicopter for emergency surgery. While Jen, Cheryl and Nancy drove at top speed to Rochester, the rest of us stayed behind and waited anxiously by our phones. I spent the night sleeping fitfully on their couch with their two Chihuahuas (Hank and Rocco), trying not to think about the unthinkable. When I awoke before dawn the next morning, the fire was out in the woodstove, Hank was sitting on my chest, and I didn’t know if Chuck had survived the night.

It was a terrifying time for everyone. Of course, Chuck did survive because he is as tough as they come and his medical team was at the top of its game. But what next?

We now know from the biopsy and other tests that Chuck has a grade IV glioblastoma multiforme, a particularly aggressive form of brain cancer. To date, he has spent over two weeks in the hospital, had more than a dozen MRIs, been operated on twice, given six prescriptions, and he’ll have titanium plates in his skull for the rest of his life. He and Jen have consulted with doctors in Ithaca, Rochester, Boston and New York. These doctors have concluded that Chuck will not be able to return to work, probably ever. And the medical bills are piling up fast. His emergency flight from Ithaca to Rochester was not covered by insurance, and the bill for that single item is about $10,000. That’s just the beginning.

Other than their two dogs who are relatively low maintenance, they are now unable to care for their animals. Fortunately, the Farm has been able to re-adopt their turkeys and goats, while Bryce and Natalie (two other friends from the Farm Sanctuary family) will be adopting their chickens. Their two cats have been placed in wonderful homes as well. But knowing that their adopted kids are being well loved under new roofs does not erase the pain of their absence.

Chuck is extremely fortunate in many ways. He is relatively young for his diagnosis. Aside from the tumor-induced slide into junk food that preceded his emergency, he’s been enjoying a relatively healthy vegan diet for more than seven years. He’s got an incredible team of doctors working on his case. He has an amazing and devoted collection of friends and family. He is getting a rapid education in alternative and complementary therapies that we know will work wonders. It is a simple matter of medical probability that he can expect a better outlook than anyone who was diagnosed last year, or two years ago, or at any time in the past. And as already mentioned, Chuck is no pushover. I am convinced that he is going to make medical history and have doctors scratching their heads.

All that said, I think it’s fair to say that Chuck and Jen have a long, hard, expensive road in front of them. They need all the help they can get. And they deserve every bit that we can give them. This is a blog to tell the story of Chuck Pappas. I have taken it upon myself to write this preamble, because I know that Chuck is too self-effacing to represent himself the way he deserves to be represented, as a truly remarkable and inspiring guy. But now the preamble is done, and the real story telling begins now, with Chuck and Jen. Please keep them in your thoughts as they journey forward.

-Casey Martinson