Jon, Rachel and I left Port Washington at about 10A for my 3:30P appointment. I went armed with ice paks, blanket, pillow and hot tea (for my cold). This is the day we’ve been waiting for…for seven weeks, but really for more like 18 years. This day will be especially long; not only will it be radiation Monday, but we are also traveling up to Boston and back in the same day…long day. Jon and I decided that we just wanted to be done, we didn’t want to have to wait one more minute for the end to end, and the beginning to begin…getting home sooner than later will make that happen.
We arrived at around 2:30P…enough time for Rachel to check out some of my blogging mentions…the delicious plum at the Liberty Hotel (she had one, and declared it definitely delicious...”maybe the best she ever had”). We went to the hospital cafeteria…where she had some French fries, and said that “it was the best hospital cafeteria she had ever been to”…this may not be high praise since I don’t believe she has ever been to another hospital cafeteria…but it was meant to be delivered as a compliment. We went to the Healing Garden…I hadn’t written about the garden…it’s on the 8th floor of the Proton Center, and if affords perhaps one of the best views of Boston and the Charles River…it was nice out, and a good day for Rachel to see this view. Before we knew it, it was 3:30P…typically, things were not running on time. We had to wait until almost 5P…I received my last 20 minutes of radiation…ever. It ends, and strangely I don’t well with emotion. I’m just still, stalled, sapped…I suspect other emotions will come later.
We walk my rather thick file over to my doctor, where all three of us sit for the last time until I return in six months. We discuss my future; we discuss my past. My doctor tells me how my tumor was misdiagnosed back 18 years ago…it was never the type of tumor that they thought it was. The biopsy taken at that time was too small to make any kind of a definite diagnosis. He tells me how rare this tumor is, especially in the skull base. He says that he has seen more than most, and that he’s only seen 400 cases in 25 years. None of these patients have had any additional tumor growth after receiving Proton Therapy. He says, “I am quite certain that you will no longer be bothered by the tumor again”…and this is the news we so wanted to hear. This is the news that makes me cry. He and I will see a lot of each other for a very long time…the road does not end here…but it is quite a different road. The tumor on all my future scans will look like it’s still there, it does not disappear; success is considered no more future growth.
It seems right that Rachel is here for my last day of radiation; she came with me to Boston for my consult to find out if I would be a candidate for Proton Therapy. She was with me when I found out that I would be, and she is with me when we find out…No more Mr. Dubenschmeimer!
It’s 6P, we all drive home; we arrive at 10P. I think...I’m so glad to be home, so glad it’s over, what a long, amazing story this has been. My doctor tells me it will take about two months or so before I feel like myself; that would bring me to about mid-October…almost a full year from my surgery on October 30th.
How lucky I feel…dreams do come true. Let’s celebrate!
Wednesday, August 13, 2008
Weekend Seven
Just waiting for the end to come…while I’m waiting I get the family cold…really was hoping to miss that…but at least it comes on the eve of my very last day of radiation.
Saturday, August 9, 2008
You're aware of what you're aware of
Does it seem like brain tumors are going around, or is it just me? Ted Kennedy was diagnosed with a brain tumor; Robert Novak has one. Bobby Murcer died of one, Heidi Gottlieb is being treated for one, and today on the news I saw a story about a 30-year-old singer/songwriter who died of a rare skull based brain tumor; her name is Katie Reider. The website is www.500kin365.org, it tells the story of what she had to endure over the last two years of her life.. Her tumor was different from mine, but its location was similar. Some of the pictures and stories remind me of my own.
The site has been created by her fans to introduce 500,000 people to Katie’s music…more specifically it is a way to download her CD for $1; the proceeds will be donated to her family to help raise her daughter, and pay her medical bills. I downloaded the CD and I think it’s great, please take a look at this site. This story touches me...maybe because a part of me thinks that if any fork in my road had been different, Katie Reider’s story could have been my story.
When you have your health anything can be possible. Check out this site.
The site has been created by her fans to introduce 500,000 people to Katie’s music…more specifically it is a way to download her CD for $1; the proceeds will be donated to her family to help raise her daughter, and pay her medical bills. I downloaded the CD and I think it’s great, please take a look at this site. This story touches me...maybe because a part of me thinks that if any fork in my road had been different, Katie Reider’s story could have been my story.
When you have your health anything can be possible. Check out this site.
Day Thirty Four
My session is at 7:30A today. Jon cleared out the apartment yesterday. We pack up our stuff to leave the amazing Liberty Hotel, we check out around 10:30A and hit the road. It almost feels like the end…but it’s not…it’s a false sense of completion. Today would have been my last day, but I need to make up the session I missed over the July 4th holiday. So I’m out, but I’m not over…not until Monday. I’m glad for the weekend, I’m glad to see Rachel come home on her last day of camp, I’m glad to be in my own bed, I’m glad to see Jamie, I’m glad I have only one more day left.
Thirty Third Day
Thursday...the thirty third session...the second Photon session of the week (I still have another one to go this week…universe give me strength)…these firewall creating sessions are especially tough. I do very little today because little is all I can do. I want this week to be over. I want this to be over. I want to be home.
Day Thirty-Two
Jon and I checked out of Beacon House and into the Liberty Hotel for the last two days of the last full week of my last few sessions…and today is my last Proton session ever…a day to celebrate. No more mask.
As I lay on the table in my usual immovable strapped to the table way, counting down the four classic rock songs on the radio it takes for the session to end....end forever, I start crying; I’m not entirely sure why…it just happens. I guess I’m relieved, I’m thankful, I’m so tired, and maybe because as happy as I am about this day, I still need to find the strength to make it through the last three Photon sessions.
After my last Proton session, Jon and I decide to celebrate by heading over to Cambridge to Toscanini’s for some of the Boston area’s best ice cream. I’m not sure about my energy level for this adventure, or how my stomach will receive it, but this day deserves a marker. We decide to take the T two stops on the Red Line, and walk what is supposed to be only three blocks. I think I’m up for this…Oops…we walked in the wrong direction and then had to walk back in the opposite direction. Four blocks turned into more like twelve…not so good for me…this wiped me out. Before radiation , twelve blocks was nothing, now it feels like the 5K. I did not let this energy-sapper dampen my enthusiasm for the best of the best ice creams. I had the Peppermint Stick with the Hot Fudge. It was good in my mouth. My stomach? This was a slightly different story…but it did feel like a small celebration… which was important.
Three more to go.
As I lay on the table in my usual immovable strapped to the table way, counting down the four classic rock songs on the radio it takes for the session to end....end forever, I start crying; I’m not entirely sure why…it just happens. I guess I’m relieved, I’m thankful, I’m so tired, and maybe because as happy as I am about this day, I still need to find the strength to make it through the last three Photon sessions.
After my last Proton session, Jon and I decide to celebrate by heading over to Cambridge to Toscanini’s for some of the Boston area’s best ice cream. I’m not sure about my energy level for this adventure, or how my stomach will receive it, but this day deserves a marker. We decide to take the T two stops on the Red Line, and walk what is supposed to be only three blocks. I think I’m up for this…Oops…we walked in the wrong direction and then had to walk back in the opposite direction. Four blocks turned into more like twelve…not so good for me…this wiped me out. Before radiation , twelve blocks was nothing, now it feels like the 5K. I did not let this energy-sapper dampen my enthusiasm for the best of the best ice creams. I had the Peppermint Stick with the Hot Fudge. It was good in my mouth. My stomach? This was a slightly different story…but it did feel like a small celebration… which was important.
Three more to go.
Wednesday, August 6, 2008
Day Thirty-One
Sick, sick, sick…just feel like I’m slogging through. I’m worn out. The travel, the sessions, it’s Tuesday (always tough), I feel nauseous almost all the time, and all these things combined, make me depressed. I hope Mr. Dubenschmeimer is feeling as horrible as I’m feeling.
After a slow moving, crappy morning…Jon and I go out for the smallest of walks around the block just so that I can get an airing; shortly after which we head over to Proton for my second to last Proton treatment.
Knowing that I’m so close to the end of the road renews me a bit, and Jon and I decide to check out the 3D Grand Canyon IMAX film; we got free tickets from the Cancer Resource Center…nice perk. The film was great; it was fun to go on a short trip to the Grand Canyon and get out of Boston.
Back to Beacon House, tomorrow’s Proton appointment is at 7:30A…it’s really too early for me…I’m not jumping out of bed these days, but they give, and you take…that’s the way it is over here in Radiationland.
Nighty night. May there be no fire drills and may neither Jon nor I slide off of the plasticized mattress during the night.
One more Proton, and 3 more Photon to go.
P.S.-In case anyone was curious, Rachel was able to go to camp today.
After a slow moving, crappy morning…Jon and I go out for the smallest of walks around the block just so that I can get an airing; shortly after which we head over to Proton for my second to last Proton treatment.
Knowing that I’m so close to the end of the road renews me a bit, and Jon and I decide to check out the 3D Grand Canyon IMAX film; we got free tickets from the Cancer Resource Center…nice perk. The film was great; it was fun to go on a short trip to the Grand Canyon and get out of Boston.
Back to Beacon House, tomorrow’s Proton appointment is at 7:30A…it’s really too early for me…I’m not jumping out of bed these days, but they give, and you take…that’s the way it is over here in Radiationland.
Nighty night. May there be no fire drills and may neither Jon nor I slide off of the plasticized mattress during the night.
One more Proton, and 3 more Photon to go.
P.S.-In case anyone was curious, Rachel was able to go to camp today.
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