July 29, 2012
Phase Two is nearing completion, with just one more cycle of chemotherapy to go before the real recovery can begin. The preliminary plan had been to continue physical therapy during this six-month chemo course, but it proved unworkable to annihilate half of Marc’s cells with chemo and simultaneously expect him to work out, so the new plan is to finish out the chemo and then focus on PT and OT. But while things are status quo on the symptom front, the medical side is looking great. Marc has had at least two clean MRIs and has tolerated the treatment better than anyone expected.
I have made fairly regular visits to see Marc and feel really good about where he is both physically and psychologically. I took this photo at my last visit and I think it captures Marc’s current status – weary, but winning. I’m headed up again in about a week, but in the meantime, I thought I’d pass along the recent comments of Erin and my mom, who have spent time with Marc more recently than I have.
Things are going well with Marc's treatments. Today (the first day of the treatment week) is always the longest. We get to the hospital around 8 and then don't leave until after 6pm. The good news is that after this week there is only one more treatment week left. Marc has been tolerating the chemo really well and hasn't been sick, it just makes him really tired.
His spirits are pretty good, it's exciting that there is only one treatment week left after this week, but it will still be a long road of physical and occupational therapy for his walking, balance, and eyes. With the agreement of his doctor he has stopped going to OT and PT until he has finished treatment - it is difficult to continue making progress while he is going through treatment.
Marc just got his first pair of glasses. I think he is still warming up to them, but they seem to help a little with the double vision.
When he isn't getting treatments he still needs to come into the city for weekly doctor's appointments, but we have also been getting out a little bit more and going to the ice cream shop on the corner and have even gone out the see a few movies.
All in all, things are going well and progress is definitely being made.
From My Mom:
"Just returned from another trip to NY...Marc almost done with 5th of his 6 cycles of chemo. He continues to amaze his doctors and nurses with his ability to tolerate a very difficult treatment regimen (his doctor's words)...not exactly sure where this is coming from, but I can't help but feel that all the good wishes, prayers and emotional support are playing a big part in his success. Thank you!
We laughed a lot today and that, too, is as good as the medicine. Once again, I am encouraged and heartened by his progress ...can't wait for this phase to be over next month."
So that’s the update for now. Keep up those positive spiritual vibes as Marc heads into the home stretch of treatment. Thanks as always for all of your love and support.
March 20, 2012
Phase One is complete. Marc finished radiation and his first round of chemotherapy at the end of February, and now he's on chemo-vacation for four weeks. During this period, he's concentrating on the physical and occupational therapy. He makes multiple visits to Sloan Kettering's new rehab facility each week, and he's working on exercises to regain his strength and coordination. He still has a lot of limitations, because although the brain tumor should now be shriveled, the radiation left a bunch of swelling in its place, and this is expected to continue for a number of weeks. The doctors had told Marc that his symptoms would get worse before they get better, so he was prepared for a slow recovery. His spirits are high and he is relieved to be done with the radiation. Round two of chemotherapy will start in a couple of weeks. He will be ready.
On the financial front, Marc and Erin are super grateful to have the fundraising money to cover the insanely-expensive travel and treatment expenses. We're still amazed by the great response from everyone, and at this point we're no longer hitting people up for individual donations. But some of Marc's friends have lined up a few events for his benefit, and it would be great to see you all at those. Union Jack's is doing a benefit for Marc tomorrow, March 21, all day and night Click Here to View the Flier. This was put together by our good friends Ben Flyr & Joy Gaither with the help of Dave Saunier and Steve Haddad, and it should be a great event – drink specials, live music, good food, and all that. I'll be there. If you can join us, come on over. Make sure to bring the flyer so they know you're there to support Marc. On May 9, there's going to be a golf tournament organized by another good friend, Susie Davis. More to come on that later.
So that's the update for now. I hope that by the time of my next post, I'll be able to report some significant improvements in Marc's condition.
In the meantime, my kids give me daily examples of the benefits of having a brother. I took the photo below on a random day after school while my boys were out playing, and I realized that they interact with each other just like Marc and I did as kids. They don't consider themselves particularly fortunate to have a brother to play with, fight against, learn from, and lean on. But they've certainly reminded me how lucky I've been to grow up with a brother. I pray my kids don't ever have to deal with a situation as difficult and serious as the one Marc is dealing with now, but it gives me some comfort to know that, whatever life brings them, they have each other to share it with.
Click image to enlarge.
Thanks for checking in. Hope to see some of you tomorrow at Union Jack's.
February 17, 2012
Query: If chemo makes your hair fall out but you shave your head before it happens, does it make a sound?
Week five of treatment is underway and a definite routine has emerged. It’s almost like a typical work day: Marc goes in for chemo around 8:30, then radiation, then physical therapy and occupational therapy, then back home by around 4:30. He has gotten used to the difficult 90-minute radiation sessions, which were moved to Mondays. He’s also got some new juvenile buddies on the pediatric ward. “Chicken Nugget,” who is there everyday like clockwork, had a particularly hard week last time I was there. I find myself pulling for him as much as my brother.
Marc’s side effects are basically under control, although he gets very fatigued and generally goes to bed before most of us have dinner. But that’s okay – healing supposedly happens best when you’re asleep, so sleeping seems like the right approach.
The neurological symptoms have not yet improved significantly, but Marc has noticed subtle changes that are keeping him motivated to continue with the difficult PT and OT. A little more strength in the left leg, a little more coordination with the left hand. He knows it is going to take time, and he’s putting in the effort. We expect to have more information about how the treatment is impacting the tumor in a few weeks, and hopefully that will serve as more positive reinforcement.
Speaking of positive reinforcement, we received a nod of encouragement from the guys at Jackass, including Johnny Knoxville, Jeff Tremaine and Shanna Zablow. Apparently, they heard about Marc’s diagnosis from some people at MTV, and they not only sent donations but also posted a call for help on their website. http://www.dickhouse.tv/dickhouse/2012/02/please-help-out-our-friend-marc-nesbitt.html And I also have to give a shout-out to Peter Banks, a good friend of Marc’s, who organized the Marc Nesbitt Supper Bowl Slamma Jamma, which was a huge success. The examples of people’s generosity and good-heartedness just keep coming, and it is so amazing to see support coming from these crazy unexpected sources.
Finally, I have to say a few words about Marc’s biggest source of love and support, Erin. Those of you who know Marc are aware that he can be intense, especially when things are not exactly going his way. And in a situation like this, it’s hard not to let negativity rule, regardless of the kind of person you are. But Erin projects this certain, calm optimism. Her life has been completely turned upside down, she has all of these new responsibilities, and her and Marc’s future is a web of uncertainty, but she is a total rock. I cannot imagine a more perfect fit for my brother or for this situation. The bond between those two is palpable, and I have no doubt that their mutual love for each other is pulling them through the fire. Erin, thank you.
Click an image below to enlarge.
Thank you to everyone who was able to make it out to the coho grill last night, and thank you for continuing to follow Marc's progress.
January 29, 2012
The battle is in full effect, with week 2 of treatment wrapping up.
The process had a bit of a rough start. First of all, Marc's chemo sessions are in the pediatric ward because his is a childhood cancer. Seeing little kids with cancer isn't exactly a spirit-lifter. But then again, seeing little kids fight cancer is inspiring, so we'll choose to look at it that way. The radiation presents its own challenges. Monday through Thursday, the radiation sessions are about 20 minutes long, but on Fridays, the session is 90 minutes long. During radiation, he has to remain completely still in an awkward position with a hard mask over his face. This is challenging for him both physically and psychologically. As an extra bonus, he now has a radiation burn on the back of his head that looks like he was Hassan Chopped. All of that being said, Marc's treatment team has worked hard to make adjustments to the medications to offset the side effects, and he's now tolerating the treatments well.
The symptoms of the tumor are still significant, and we're told that they could worsen as the radiation causes swelling in his brain. Marc has had to outfit his apartment with all kinds of safety gear, with rails in his living room and hallway and a seat in the shower. We are hoping that after a while, these symptoms will start to get better, especially once he starts regular physical therapy. The team is still trying to put together a physical therapy regimen for him. That part will be critical.
I think Marc's mood is still pretty positive, although it's hard to tell. We all knew this part of the process would be hard. The treatment is rough and there's no tangible benefit yet, so it's easy to get discouraged.
So, we move into week three of treatment. I should mention that the car service has been fantastic, so thanks again to all of you who helped make that happen. Also, I wanted to let everyone know that CoHo Grill
is sponsoring a benefit for Marc and Erin on February 16 at 5:00 p.m., if you're interested. Don't worry; there's no need to make yet another donation – CoHo has graciously agreed to donate a portion of the food and beverage sales to the fund. I'll be there and would love to see all of you there, too.
On a more spiritual note, I wanted to share an interesting experience I had yesterday (Friday). As I mentioned, Fridays are the hardest day of treatment for Marc. Yesterday, I walked down to the lake with my camera because I could see there was good light. I went down right about the time Marc's treatment would be starting, and it was foggy, grey and dark. Over the next hour or so I waited for the light to change. After 60 to 90 minutes, about the time it takes for treatment, the light finally broke through and cleared the sky. I'm not overly religious, probably more spiritual, but I couldn't help but notice the time on my watch and the symmetry between my thoughts, Marc's situation, and the sky. I have documented the change over that 90 minutes. Maybe it will lift your spirits like it did mine.
Click an image below to enlarge.
Thanks again for your continued support. I'll update again soon.
January 13, 2012
The past week has been one of the most emotionally charged of my life. I have wrestled with anger, sorrow, and guilt in seeing my brother struggle with a power that seems at the moment to have the upper hand. But these emotions have been more than offset by the tremendous support we have received from Marc's family members, friends, former classmates, co-workers, employers, and even total strangers who have heard about the situation and just want to help. Harmonix, MTV and Rock Star Games (where Marc used to work) have rallied behind Marc in a totally unexpected way - donating money, sending care packages, and encouraging their fans and followers on twitter to support Marc even though they have no idea who he is. Incredible.
But the encouragement we've received from the Columbia community has been especially astounding. My family has always been proud of our connection with Columbia for a lot of reasons. But none of us had any idea just how loyal the people of Columbia could be to one of their own. Marc and Erin are incredulous over the heartfelt messages and offers of help - these things have turned despair and anger into gratitude and resolve. You cannot underestimate the power of having a community of people pulling for you.
On the donations front, my goal had been to raise enough money to hire a car service to take Marc to and from his radiation and chemotherapy sessions. Thanks to the incredible generosity of Marc's supporters, we have met that goal, and we could not be more grateful. I discussed with people at Sloan Kettering and the Ulman Cancer Fund our interest in making a donation. They welcome our support, obviously. But interestingly, they have suggested that we wait a little while to get a better handle on the expenses to come. We have received similar feedback from numerous cancer survivors who have offered their experiences. The collective wisdom of these people is that (1) Marc's medical expenses are going to exceed whatever we currently think they are going to be; (2) the logistical expenses go far beyond a car service; and (3) the financial obligations continue well past the radiation and chemo stage. That's a little overwhelming to consider at the moment, but their candor is appreciated and the point is well taken.
Right now, the focus is on starting treatment. Marc has completed the pre-treatment activities that were recommended by his doctors, and his first session of radiation and chemo is today, Friday the 13th (you can't double down on bad luck, can you?). Marc is totally zen about the whole thing, ready for combat. There will be 31 sessions of this combo before he gets a short break and then starts phase two of chemotherapy. One day at a time.
Meanwhile, I want to thank everyone who has donated and helped spread the word about Marc's situation. I hope that the support, monetary and non-monetary, can continue, because this momentum has changed our whole outlook for the better. By helping to ease the financial burdens to come (which apparently I have underestimated), the monetary support allows Marc and Erin to focus their energy on getting better. More importantly, everyone's kind messages give them the faith and strength to fight. Thank you, thank you, thank you. Please continue to pass the word onto others you think may be interested in what I can only describe as a movement to help my brother beat cancer.
I will keep you posted.
January 4, 2012
As many of you know, my brother, Marc, has been diagnosed with a rare brain tumor called a medulloblastoma. It accounts for only 1% of all brain cancers and occurs mostly in children. The tumor is located at the base of his brain, on the cerebellum, which controls motor function. Marc's symptoms began with dizziness and vertigo, which initially were attributed to a sinus infection. When Marc started to lose the use of his left arm, he underwent an MRI that was read as clean, but further follow-up with a neurologist led to another MRI, which showed the tumor.
Currently, Marc's neurological symptoms are pretty severe. It is difficult for him to walk, he does not have meaningful use of his left arm and hand, his left leg is weak, and he suffers from double vision. Fortunately (or unfortunately, depending on how you look at it), he has no cognitive problems, so he's still at the top of the leader board on all of his Words With Friends games. And, more importantly, he has a positive outlook and is ready to go to battle with this disease.
The cancer is aggressive but treatable with a vigorous course of chemotherapy and radiation. Because medulloblastomas are so rare, only a handful of oncologists specialize in the treatment that Marc will need. Fortunately, one of the best cancer centers in the U.S., Sloan Kettering, is located in NYC and has an oncologist who specializes in treating adults with childhood cancers. That is where Marc will undergo his 6-8 months of treatment. He will start with 6-8 weeks of daily radiation with intravenous chemotherapy and physical therapy. The second phase will be a continuation of intravenous chemotherapy coupled with more physical therapy.
At this point, one of the biggest difficulties that Marc and Erin are facing is the logistics of getting Marc to his treatment sessions. Marc and Erin live in a walk-up apartment in Jersey City, across the river from downtown NYC where Sloan Kettering is located. Because of Marc's motor issues, he cannot take public transportation safely, at least not without considerable help. Erin works full time and cannot get him to and from his daily treatment sessions. Therefore, he will have to engage a car service to take him to and from Sloan Kettering and NYC for his treatment, physical therapy and follow up appointments, which adds a tremendous expense to the already costly medical treatment he will be getting.
With Marc unable to work, these expenses are daunting and create yet another level of stress and worry to the situation. So, since I can't fix Marc's symptoms, cure his cancer, or undergo his treatment for him, I decided to try and help with the financial aspect of things. And because many of you have asked if you can help in some way, I am requesting your assistance.
The transportation and other logistical expenses related to the treatment amounts to roughly $10,000 for the first 4-5 months of treatment. I have created a paypal account that can accept donations. My goal is to raise $10,000 to help cover these expenses, which is only a fraction of the overall costs he and Erin will incur over the next year or more. But it's something, and it will really help ease the burden. If we end up in the fantastic position of raising more than this amount, any excess will be donated to Sloan Kettering or the Ulman Cancer Fund to help others with similar burdens.
I cannot express how grateful I am for all of your expressions of hope and your willingness to help Marc through this difficult time. Even if you are unable to make any monetary contribution, keeping Marc in your thoughts is greatly appreciated. Thanks for listening. I will keep you all updated.