Last Thursday was set-up day. The day started at 8:30A and ended around 4P...I didn't do all that much and yet I was as exhausted as I might have been if I had spent the entire day running. Most of the day I found my self visualizing where else I could be at the moment, transferring my mind away from my body. During my CAT Scan (a cylindrical tube in which many x-rays take a picture of...well, in my case, the brain), I imagined alternately being in a cool, beautiful tropical waterfall, or on the edge of a perfect white beach with the ocean gently lapping at my feet. This test is actually about 40 or so uncomfortable minutes, in which hot metallic contrast is injected to make the picture..."pop". Very weird sensation...but I'm at the waterfall. The hard table starts to become really uncomfortable around now...but I had about 30 more minutes to go. From the scan, I have a small, very small haircut (shaving) made at the top of my hairline. This is made to apply small marker points so that they can know where to point the radiation beam. This is my only haircut for the day, but not my only marker points...as I will find out later. I lay on the table and have a mold made of my face...this is hot, moist, and claustrophobic...you can breath through your nose, but your mouth and eyes are sealed shut. I imagine that I'm receiving a fantastic facial, or alternately having heavy theatrical make-up applied (this must be what it feels like). This mask when it's completed will be what is strapped onto my face before every treatment I have for the next seven weeks. Next, my head is tilted back (sort of in a yoga fish pose), I'm almost positioned so that I am on the top of my head, chin up in the air...body laying on the table. This is done so that they can get yet a better picture of my brain on the scan...it only lasts about ten minutes, but that's a while to be on the top of one's head. Next, it's off the doctor's office for a very intricate physical. My neurological functions are tested...can I shrug my shoulders, lift my legs, raise my arms, walk on tip-toes? All these things I pass with flying colors. Can I follow a finger, can I grit my teeth, blow out my cheeks, stick out my tongue, swallow,...these things are somewhat challenged...but not new. I am scoped, something I've become used to...a long camera is passed down my nose into the back of my throat to see how my vocal chords are doing. Nothing new there, left one still paralyzed...this will not change...but still got the other one. Then it's off to have permanent (although small), tattoos made at various points on my face and head...it's to accurately point the beam (accuracy is way key here), during my treatments. The ink is injected with a usual syringe into these various places on my face...I imagine that I'm having botox treatments...never had them, but I'm guessing this is what it must feel like. I'm almost done, except for one last stop at a different location about a fifteen minute drive from my home base (Mass General Hospital), but also 15 minutes closer to being home. This stop is to have an MRI, with more chemical contrast injected into my body. This scan is to get a different perspective on the tumor. The MRI along with the CAT Scan is what will be used to create a three dimensional die-cut to be attached to the head of the Proton Beam to target the tumor. This took a surprisingly long 2 hours and I'm out at 4P. Long day.
Jon and I decided to eat (we hadn't all day) before we head out on the trip back home. We decide to go to a Ruby Tuesday which is directly across from the MRI center where I just had the scan. The place is empty (too late for lunch, too early for dinner). It's just us, and two other people at the bar. I look at these people...and can you believe it...one of the guys is Ken Howard. This may not mean much to many of you, maybe none of you...but it's particularly amazing to me. I know this is Ken Howard because I watched the re-runs of Crossing Jordan (which takes place in Boston) the whole time I was recovering from my surgery in November and December. Ken Howard was a mainish character on that show. I know it's stupid but watching Crossing Jordan got me through my recovery and there was Ken Howard sitting seven feet away from me. No I didn't ask for his autograph, or tell him my "uplifting story", it was just good enough to see him there, somehow comforting at the end of the draining day. I found out after looking him up on Google when I got home that he is appearing in a one-man show about Tip O'Neill at a regional Watertown theater (that's right where the Ruby Tuesday was)...guess he was knocking back a few cold ones before the show...just like Tip would do.
Life is weird. Don't you think?
Tuesday, June 17, 2008
Tuesday, June 10, 2008
The beginning of The Beginning
Tomorrow Jon and I travel to Boston, a trip one or the other, or both of us has made countless numbers of times. We went to school in Boston, we have friends in Boston, we've been on vacation there...but no trip we've taken before will feel quite like the trip we take tomorrow. Tomorrow's trip is the beginning of the beginning. On Thursday I will be at Mass General Proton Therapy Center for various brain scans, and set-up for the June 23rd proton radiation start date. I am anxious, anticipatory (this may be the same), dare I even use the word excited, I am somewhat inarticulate at the moment, I am overwhelmed, I am so hopeful. I take with me on this trip the usual "trip items", but most importantly I take with me the enormous feeling of support and love of all my friends and family. Keep sending that positive energy.
Tuesday, June 3, 2008
Believing just may be seeing
This most recent event has been both exciting and timely.
Looking ahead to the next couple of months with one car was daunting...under normal circumstances it would just be annoying, but considering the fact that I will be commuting back and forth for radiation therapy within the next several weeks for the next several weeks, the annoyance would grow larger. A week ago, I went to sleep and had a dream about getting a call that our new Prius was in and that we could come pick it up, the car in my dream was black with tan leather interior. Remember this was a dream.
While I was dreaming, we had put ourselves on two separate waiting lists, our preference was a grey metallic exterior, with a grey leather interior. We were preparing ourselves for the dim reality that we might have to wait anywhere from 6-12 weeks or more for a car. While we had a first preference, we would take almost any combination...but this would not decrease the wait all that much.
Last Saturday, around 5P, we received a call from a dealer that we had visited, but hadn't even put our name on their list. We had visited them to test drive a car, but they were too busy for us, and we were told that the wait would be months...so we didn't bother to put ourselves on that list. Not sure why we didn't, maybe because we didn't have to,...because it was that dealer that called us to ask if we were still looking for a Prius. "Yes, we are.", figuring that he was calling just to ask if we wanted to be one of the myriad of others on their list...ones still waiting. "Well, we have one coming in next week". "It's a black one, with tan leather interior, would that be okay". "Would that be okay?" "That's the car of my dreams (dream)! I am feeling quite strongly that I pulled this car in from the universe.
And so from now on...I am going to start pulling in all sorts of things from the universe. That's the plan.
Looking ahead to the next couple of months with one car was daunting...under normal circumstances it would just be annoying, but considering the fact that I will be commuting back and forth for radiation therapy within the next several weeks for the next several weeks, the annoyance would grow larger. A week ago, I went to sleep and had a dream about getting a call that our new Prius was in and that we could come pick it up, the car in my dream was black with tan leather interior. Remember this was a dream.
While I was dreaming, we had put ourselves on two separate waiting lists, our preference was a grey metallic exterior, with a grey leather interior. We were preparing ourselves for the dim reality that we might have to wait anywhere from 6-12 weeks or more for a car. While we had a first preference, we would take almost any combination...but this would not decrease the wait all that much.
Last Saturday, around 5P, we received a call from a dealer that we had visited, but hadn't even put our name on their list. We had visited them to test drive a car, but they were too busy for us, and we were told that the wait would be months...so we didn't bother to put ourselves on that list. Not sure why we didn't, maybe because we didn't have to,...because it was that dealer that called us to ask if we were still looking for a Prius. "Yes, we are.", figuring that he was calling just to ask if we wanted to be one of the myriad of others on their list...ones still waiting. "Well, we have one coming in next week". "It's a black one, with tan leather interior, would that be okay". "Would that be okay?" "That's the car of my dreams (dream)! I am feeling quite strongly that I pulled this car in from the universe.
And so from now on...I am going to start pulling in all sorts of things from the universe. That's the plan.
Wednesday, May 21, 2008
Sometimes Less is More
Went on the Chondrosarcoma Yahoo group yesterday; it's been helpful to me in the past. Kind of wish I hadn't. Many postings today about other individuals that have had Proton Radiation Therapy at Mass General...chock full of information about side effects. Of course everyone is different and every tumor is different...but I wish I didn't know what I know...think from now on I will try and stay in the zone of what you don't know, you can't now. Mostly, I just want to be well enough to take care of myself on my own if I have to while I'm undergoing treatment. Still working on finding a place to stay, although I have connected with some excellent possibilities. The car search continues. Lot of things happening at one time, feeling like I'm in the middle of a cyclone today.
Tuesday, May 13, 2008
It's all relative
So just when you think you've had as much as you can handle...successfully, something else happens...and so it did. We are a family of two cars and three drivers. One of our cars took on a strange clanking, grinding, bad sound about a week ago. Long story short, it will cost $5000 to fix it, or it's time to get a new car. It's time to get a new car. This one died, like won't work at all. After many years of dutiful service, we say a fond farewell, and move on...or should I say forward? But it's all relative.
Monday, May 12, 2008
Let the Radiation Begin
I haven't posted lately...been busy,...busy researching, busy planning, busy waiting, and busy worrying. I had started this blog a few months ago as a way to be able to read my life back...to myself. I didn't get very far. Forget all the old chapters I had yet to write, now it's about the present. The present is about the Radiation Road Trip. I will be starting Proton Radiation Therapy in Boston at Mass General Hospital on June 26th for seven weeks, five days a week with the desired optimum outcome of burning "Mr Dubenschmiemer" (as my daughter Rachel has named this tumor) out of my head. Burn baby, burn! Please feel free to chant along. My plan is to try and update this blog to let everyone know how I'm doing...that's the plan. How often I'm able to write will depend on a lot of things, but I will try and stay current.
Wednesday, February 6, 2008
I'm Going In!
It was probably about 10:30PM, almost eight hours had gone by before the service company was able to find a way to turn off the steam. And so they did. There was no hesitation on either my part or my husband’s, as soon as we saw that the steam was off, we headed back to our building to see if we could get in and get our pets.
This ride in, was different than the ride from the city that we had taken earlier. The reality of our situation had started to seep in, we were not as numb as on the way to Long Island. We were worried, angry, sad, we felt helpless and lost. We were homeless, all our things were probably ruined. All of our daughter’s baby gifts and toys had been innocently snuffed out. But please just let our animals be okay I remember thinking.
We arrived in the city just before midnight, the traffic getting in had been especially insane on that evening. The closest we were able to get to our building was about four blocks. The streets had been barricaded. I located a policeman and asked if we could get by, I told him that our building was the one right next to the explosion, and that our pets were still in the building. He let us pass. When we got to the building, we strode up next to it, and were just going to walk right in…no such luck. We were stopped by a Fire Chief, who was as determined to not let us into our building, as we were to get into it. I told him that our cats were still inside, and if there was any chance that they could be alive after all this, that I wanted to get them out. They could be injured and if that was the case, time was of the essence. He escorted me up to our third floor apartment, they would not let both my husband and I up at the same time…too much risk…he didn’t want both of us to get hurt. The building looked like a burned out tenement. All the doors had been hacked off their frames, so as to gain access for rescue, the electricity was out, you could only see via flashlight, there was mud everywhere, pets were whining and crying in the halls as they blindly wandered around trying to find their people, or at least a way out.
The Fire Chief walked me into my apartment; I did not recognize it, except by its layout. I knew the path to the bedroom, I looked here first…the cats were always on the ledge at the bedroom window…this window was in the main trajectory of the blast, only three floors above a 100 foot wall of 400 degree steam. My mind was crowded with scary thoughts. My escort shone his light at the windowless window, and then down to the floor. I noticed what looked to be a round cat-sized lump on the floor. I nudged it with my foot, hoping to see some movement, nothing moved. I bent down to touch this lump; relieved, I discovered that it was a pillow that had been on the floor and was covered with mud.
This felt strangely encouraging…I had not discovered them dead yet. Could they be one of the animals crying in the hallways, and if they were, how would I ever find them. Our building was 18 floors, with 15 apartments on each floor, all with no doors. They could be anywhere or no where. We continued to look around, moving towards the front hall closet, right next to the front door, or at least what used to be the front door. The cats sometimes liked to hole up in this closet. I opened up the closet, shined the flashlight in toward the back, and four green globes shined back at me. My cats were scared, they were wet from the steam I guess, but they were alive, and I couldn’t believe it…they were okay.
This ride in, was different than the ride from the city that we had taken earlier. The reality of our situation had started to seep in, we were not as numb as on the way to Long Island. We were worried, angry, sad, we felt helpless and lost. We were homeless, all our things were probably ruined. All of our daughter’s baby gifts and toys had been innocently snuffed out. But please just let our animals be okay I remember thinking.
We arrived in the city just before midnight, the traffic getting in had been especially insane on that evening. The closest we were able to get to our building was about four blocks. The streets had been barricaded. I located a policeman and asked if we could get by, I told him that our building was the one right next to the explosion, and that our pets were still in the building. He let us pass. When we got to the building, we strode up next to it, and were just going to walk right in…no such luck. We were stopped by a Fire Chief, who was as determined to not let us into our building, as we were to get into it. I told him that our cats were still inside, and if there was any chance that they could be alive after all this, that I wanted to get them out. They could be injured and if that was the case, time was of the essence. He escorted me up to our third floor apartment, they would not let both my husband and I up at the same time…too much risk…he didn’t want both of us to get hurt. The building looked like a burned out tenement. All the doors had been hacked off their frames, so as to gain access for rescue, the electricity was out, you could only see via flashlight, there was mud everywhere, pets were whining and crying in the halls as they blindly wandered around trying to find their people, or at least a way out.
The Fire Chief walked me into my apartment; I did not recognize it, except by its layout. I knew the path to the bedroom, I looked here first…the cats were always on the ledge at the bedroom window…this window was in the main trajectory of the blast, only three floors above a 100 foot wall of 400 degree steam. My mind was crowded with scary thoughts. My escort shone his light at the windowless window, and then down to the floor. I noticed what looked to be a round cat-sized lump on the floor. I nudged it with my foot, hoping to see some movement, nothing moved. I bent down to touch this lump; relieved, I discovered that it was a pillow that had been on the floor and was covered with mud.
This felt strangely encouraging…I had not discovered them dead yet. Could they be one of the animals crying in the hallways, and if they were, how would I ever find them. Our building was 18 floors, with 15 apartments on each floor, all with no doors. They could be anywhere or no where. We continued to look around, moving towards the front hall closet, right next to the front door, or at least what used to be the front door. The cats sometimes liked to hole up in this closet. I opened up the closet, shined the flashlight in toward the back, and four green globes shined back at me. My cats were scared, they were wet from the steam I guess, but they were alive, and I couldn’t believe it…they were okay.
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