Stiff Neck & Headaches

Radiation has become my preferred method of treatment. Not because I believe it's the most efficacious or that it particularly feels good or bad, but really because it's quick and easy. Every morning I report to the Proton Therapy Center in the lower level basement of MGH, a team of technicians align me to a table using this odd face mask and tatooed marks on my chest and for 5 to 10 minutes I hear some weird noises as invisible laser beams heat up and destroy the tumor cells within my neck.

So far I cannot tell if there has been any constructive change in my disease. My shoulder still hurts maybe worse then before, however I have been walking with my cane a lot (putting pressure on my shoulder), and my neck has been becoming increasingly tight, particularly at the end of the day and before bedtime. This neck stiffness has been accompanied by headaches, as one could imagine with any pain in the neck (pun implied), and this morning my radiology oncologist thought it prudent to get an MRI of the brain.

I guess you find what you look for and we found tumor progression thoughout my sinuses, which is likely contributing to these headaches. It's like this nightmare never ends. I used to think I got headaches because I was overwhelmed in thought or had too much on my mind. Now it seems that every little ailment, as large or as insignificant as it may be, finds some deep routed causality from this terrible tumor progression. There's never a break and when I feel I'm making progress in one part of my treatment (physical therapy for instance), I still have this aweful disease tearing itself through the rest of my body.

So under my doctor's recommendations, instead of waiting for side effects to continue to surface (like what we did with my shoulder which i now have limited function), we're going go extend my radiation plan to include treating this new tumor progression in my sinuses.

Navelbine & More Radiation

Yesterday was a pretty hectic day starting early in the morning with a physical therapy treatment at home. After PT I had just enough time to take a shower and head over to MGH for a series of afternoon appointments and the day concluded with a second round of Navelbine.

The first set of appointments investigated the shoulder pains I started to notice last Tuesday and to review the results of the MRI Scans from last Sunday. The doctor's weren't exactly surprised that I had symptoms in my shoulder and they all unanimously agreed to treat these new pains with radiation. Unlike my last round of radiation there didn't seem to be any spinal cord compression but rather tumor interaction with the exiting nerve roots. As this is a very difficult place to operate, let's hope this round of radiation works better.

Between appointments we barely had time to scarf down a pizza for lunch from the downstairs Yawkey cafeteria, which I must say is amazing, before we were expected at another doctor's appointment to start my next round of chemotherapy. All blood work looked great and they sent me upstairs to the infusion room for a little stronger dose this time: last round was 1/2 dose, this round was 2/3 dose. All was well received and we returned home around 5ish after a very full day of therapy and treatments.

For the rest of the week I'm setup for 10 rounds of radiation, the first of which was just completed today (Tuesday)!

Team Jaguar Launches "Cycling Against Sarcoma"

This year to raise money for Sarcoma Research some very close friends of mine have arranged a series of bicycle rides. There are two rides but three ways to participate: join the “Head to the Hills” ride in Dallas, Texas; participate in the “Ride To Montauk” out of New York City; or support the team as a virtual rider.

Here's how to participate:
1.) Register for the ride(s) for which you wish to participate.
2.) Setup your personal fundraising page through pmc.org.
3.) Email zacbleicher@gmail.com your PMC registration ID.
4.) Start Collecting Funds and Start Riding!!!!
* NOTE: If you are participating as a virtual rider, then skip step 1.

For regular updates please "Like!" my facebook page below and visit often.



Choosing your BICYCLE RIDE
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1.) "Head to the Hills" Cedar Hill, Texas - May 7, 2011
http://www.headforthehillsrally.com. Follow links to register.
Choose from 10-, 20-, 40- and 60-mile rides.
Sign up as a "Team Member Rally Participant" for only $20.
Be sure to designate you are with "Team Jaguar."
Registration closes March 31st 2011 so register now!

2.) "Ride to Montauk" Long Island, New York - June 18, 2011
http://www.ridetomontauk.com
Choose from 30-, 70-, 100-, or 145-mile rides.
Sign up as a single rider for $82. This ride is more expensive, but includes more amenities. Follow prompts regarding how to get back from Montauk. The ride organizers offer to take you and your bike back to your starting point, as no bikes are allowed on the LIRR this weekend (this is the easiest option); however, we are working on a possible cheaper option for those of you with inexpensive bikes. For now, if you aren't sure which method you want to use, put "I am getting my bike and me home on my own." You can always change it later.
Register as soon as possible as the price increases after June 8th 2011!

Setting up your PERSONAL FUNDRAISING PAGE
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Regardless of how you choose to participate with Team Jaguar, you will be registering through PMC as a “Virtual Rider.” We are NOT participating in the actual Pan-Mass Challenge ride.

1. Go to www.pmc.org/register and select "Virtual Riders, Just Click Here" at the top of the page.
2. Setup your personal fundraiser page and goal. Set your goal within reason according to your best estimate, but don't sell yourself short. Ideally, pick as your goal either $500, $1000, or $1500. At minimum, we ask that you please raise $350.
3. Email zacbleicher@gmail.com with your PMC ID so he can add you to our team page. This is very important to keep track of all Team Jaguar Participants and allow us to build team spirit as we watch our fundraising numbers grow. This also ensures all the funds raised go specifically to sarcoma research.
4. Start raising money by sharting your “eGift” link with friends and family that would like to sponsor you.

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Thank you all for your support and your enthusiasm. The sooner you register for a ride and get your virtual rider page up and running, the sooner you can start asking your friends and family to support you and help you reach your goal. Please contact Zac Bleicher with any questions or comments you might have (zacbleicher@gmail.com or (312) 650-9222).

The Return Home / Navelbine / Shoulder Scans

It's been harder to adjust to home life than expected; I've been home for one week now. Transferring from a fully handicap compliant living environment to probably the furthest from such a place (my home) has been a huge adjustment, but I'm starting to get more comfortable and slowly reclaiming my old life. The video posted above is actually from my first evening back from Spaulding.

The stairs at our apartment have proved to be easier than expected and the largest hurdle has actually been navigating off Beacon Hill to the rest of the world. The terrain outside our apartment is very steep and studded with cobblestones and un-matched brick. Need-less-to-say once I am able to navigate the neighborhood I should be ready for the Ironman or Navy Seal Training.

All of our apartment handicapping has paid off well too. Autumn, Mom and Sister Kim installed handrails on the toilets, assembled a shower chair, installed a handheld shower head downstairs and put rails on the bathtub. Everything works great and does make our place more handicap accessible, at least in the bathroom.

Last Monday I started up chemotherapy again. Just when I was starting to get comfortable with my daily routine and workout schedule, they threw chemotherapy back into the loop. This new drug is called Navelbine. It's given weekly, every Monday, intravenously through a 20 minute infusion using my port. So far, after round one, the side effects are minimal and it is very tolerable. Unfortunately due to my platelet counts I was only able to receive a half dose which is maybe why its was so tolerable; however, the hope is that in the future, as I heal, we can increase the dose hit the tumors harder.

As a chemotherapy drug, Navelbine, is an off-the-shelf medicine that is known to be gentle on platelets. It doesn't have the best track record with my specific disease and is no way considered a targeted therapy but if it works for me, then it works. We have entered what I like to call the oncology guessing game and is why sarcoma research is so important. There is no crystal ball for sarcoma so our plan over the next couple months is to keep on trying drugs until one bites.

I've been hanging in there. Everyday brings a new struggle and a new seemingly life threatening pain. I developed this weird shoulder pain last Tuesday which we're investigating with MRI scans this Sunday and following up with several hours of doctor appointments on Monday. Should be fun! I really hope I just slept on my shoulder wrong.

Otherwise my days are filled with home-visits from a physical therapist (3x a week), self-guided physical therapy and relaxing at home with family, friends and of course Benson. Progress has been a little slower then I'd like which has been frustrating but we've been able to fit in the occasional adventure which is nice. Last weekend we went to the Boston Garden which was such a treat!

6 Weeks in the Hospital

After six weeks of hospitals, hospice care, rehab centers, another round of hospitals, and more rehab, I finally got discharged to go home.

The last week and a half of therapy was extremely productive. I went from being confined to a wheelchair to using a walker to walking with a cane (well that's a little stretch). It's been an amazing experience to witness the effectiveness of a systematic physical therapy regime and how one can retrain their bodies / minds to learn how to walk again even though I don't have the same strength or sensations I once had in my legs.

I'm still not 100% and probably won't be there for a while. Walking with a cane is reserved for well supervised situations but the hope is that this will one day come easier and one day I will be able to get rid of the cane as well.

This week I also got to try acupuncture which was pretty interesting. Instead of getting 1000+ needles in my back, 12 carefully placed needles were placed in all my limbs and left there for 20 minutes. I'm not sure if it was the needles that felt relaxing or the fact that I was scared sh*tless to move and thus interrupt the needles so I had to keep very still for an extended period of time; either way, though, the process was interesting. My motto is to try anything twice and hopefully the acupuncture will eradicate all the cancer from my body.

As my parting gift to Spaulding I painted a ceiling tile (pictured above) of our family mantra and my beacon of hope. Mom and Dad were very jealous.

World Got My Head

When I woke from my surgery two weeks ago, gaining consciousness from anesthesia, this song was waiting for me in my inbox. Still recovering from the dreamlike state after the operation I listened to this song; it was very moving. My childhood friend Barton David wrote this song for me, inspired by my fight. I couldn't figure out how to post an mp3 by itself so I made a photo collage of my journey thus far. I hope you all enjoy the song as much as I do (and the photo collage).

"World Got My Head"

Hopeless to hope I go, and then I circle back
Running from these thieves, they're chasing hard down my own track
And I don't know what they want from me
Or who they see
And just what I've got left for them
And me

World got my head uptight
It's too much to take sometimes
The street lights glow every night
But the shadows don't stay

Lowest to low, I'm reaching out for something new
I keep up with the times, but stay a drifter through and through
Don't no one take a thing from me
That I don't give
Except this little life I put aside
To live

Life at Spaulding

My new room is located directly across the hallway from my old room. It's a double room on the wrong floor; however, we were promised that the vacant bed would not be filled and that I would be monitored by the doctors / therapists from the ninth floor, which handle the spinal cord injury patients. So all is well, and I quickly settled back into my new home away from home.

Monday was mostly a skills assessment / therapist introduction day and Tuesday we jumped head first into my therapy. I've been walking, using exercise machines, lifting weights, practicing balancing exercises and learning various other techniques to either compensate or strengthen muscles that have become de-conditioned. All I can really say is that I am extremely sore and have been able to really push myself with very little pain.

It's truly amazing at how much you can push your body in the absence of pain. In my first visit to Spaulding I was in so much pain that I couldn't do anything. It's a great feeling to make progress in my therapy and everyday the exercises get a little easier, I can walk a little further and my legs can carry a little more weight. I've even started to practice stairs (one of the major bottlenecks to returning home) and today I climbed 120 steps!