Wednesday, August 27, 2008

What doesn't happen is almost as important as what does happen

It’s been two weeks and two days since my last radiation treatment. I feel improved…some what. I feel relieved and I feel reflective.

What am I thinking about? I’m pondering the events of life. Why things happen? When they happen. Why things don’t happen? How what doesn’t happen is sometimes just as important as what does happen. I’m thinking about the “fork in the road”…my forks in the road.

I’m thinking about how/why shortly after Jon and I had Jamie (19 years ago), our apartment became a casualty of a Con Edison explosion, but we happened to go out for a walk on a rainy August day with a 4 month old baby right before the explosion. If we had been in the apartment we would have more than likely been severely injured. Our next door neighbor was killed.

I’m thinking about how almost exactly a year from that explosion, I woke up one morning with double vision, a week later I was told I had a brain tumor, and three weeks after that I was having brain surgery for the first time. This was unbelievable.

I’m thinking of all the people I know and how they affect my life, and why and how I met them.

I’m thinking about how on September 11th I was on the tarmac at JFK airport, ready to take off to Los Angeles on an American Airlines plane. We were delayed because two reporters from CNN needed to get off the plane, they had apparently just gotten the news before any of us, that an AA plane had just hit the World Trade Center. My plane was held up, we were deplaned and almost as though I was being swept through the airport on a magic carpet, made my way through the crowded airport with ease, and shortly afterward onto an almost empty bus that was making its way out to Long Island where I lived. What if this plane took off? This was extraordinary.

I’m thinking about how Jon worked across the street from the World Trade Center, but hadn’t left for work yet on that day. What if he had left earlier, or the plane that bulleted its way into the Trade Center left later?

I’m thinking about how I was misdiagnosed 18 years ago, and that my tumor wasn’t what I was told it was back in 1990. In hindsight, the doctor doing my surgery was probably not up to such a complicated procedure. I chose him based on the fact that I had several other doctors at the hospital he was at, and that both he and the hospital had an outstanding reputation. Reputation isn’t everything; I know that now. Because my surgeon wasn’t up for this procedure (not many surgeons, if any back then could have been…it was very complicated), he treaded lightly, not really doing what he needed to do to get an accurate pathology, but by doing so, he also didn’t rob me of too much neurological function. I lost my hearing in one ear, I had facial paralysis (which returned). It could have been much, much worse. But it wasn’t. This is lucky.

I’m thinking about how I had a doctor that examined me every year, but never looked hard enough at the yearly MRI’s to notice that my tumor was growing. It grew to the size of orange, and yet miraculously we (the tumor and I) lived alongside each other. Considering all the nerves that it was next to, it could have made it so that I needed a feeding tube, a breathing tube, lost my sight…killed me; but it didn’t. This was a miracle.

I’m thinking about how I finally met a neurologist that felt that there was something significant enough on my MRI that I should seek a consult with a neurosurgeon. This was good timing.

He referred me to three surgeons. Two of the three thought the tumor was a chondrosarcoma. These two surgeons suggested very aggressive surgery. The other surgeon thought that it was a different, more nebulous tumor, and mapped out a much less invasive surgery. I chose this surgeon because I felt it was better to have a less invasive surgery to find out exactly what the tumor was. This was smart thinking.

The surgery proved that it was a chondrosarcoma. Now I was armed with a real diagnosis. My surgeon suggested two other surgeries to remove the tumor. I was able to stay calm in the eye of the storm. I was able to stay positive. This was amazing.

My surgeon didn’t feel that Proton Therapy was effective for my type of tumor. He felt that Proton Therapy was only for small, round tumors. I was perseverant. I realized that doctors, no matter how good, or well regarded they may be, are just people, and they don’t know everything about everything. This was insightful.

I found out that Proton Therapy is not just for small, round tumors, but more specifically for large, hard to reach, irregular tumors. I found out that this radiation therapy is the best therapy for chondrosarcomas; that there is evidence that surgery actually stimulates the growth of chondrosarcomas, and that there is quite a long history of success for people who have been treated with Proton Therapy for chondrosarcomas. This was enlightening, and fortifying; this was the best chance at a cure that exists.

I’m thinking about how I was able to find my way to a radiation oncologist at Mass General that probably knows more about the kind of tumor that I have/had than any other doctor in the country, and I did it by self-referring myself. This feels like…I don’t know. Some would say devine guidance, some would say law of attraction, and some would say luck. This was amazing. This may have saved my life.

When it was time to go to Mass General Hospital in Boston for seven weeks for treatment, I was able through the help of friends to find an apartment. A friend of a friend was leaving her apartment in Boston for almost exactly the time period I needed to have one, and she refused to accept any payment for the apartment. The apartment was only three blocks from the hospital. This was good fortune.

Friends and family moved their own schedules and commitments to help me out, which made things so much easier than it otherwise would have been. This was so appreciated.

I’m thinking about how much more experienced and confident I am now, than I was when I was first diagnosed. That very little trumps age and wisdom. I don’t think I would have found my way to Proton Therapy 18 years ago (it did exist back then, but in embryonic form). The internet didn’t exist, I still lived in the belief that doctors knew everything, and if they didn’t, they would say so. I wouldn’t have questioned my doctor back then. Always feel like you can question your doctor. I’m thinking about how incredible it is, that even though my tumor was growing, it grew so slowly, that Heidi was able grow up enough to find a way to its end.

And then there were the other things that have happened recently…meeting a woman randomly in front of a hotel near the hospital that had had brain surgery two months before I started radiation, five months after I had my second brain surgery…we met and we talked and that was timely and comforting.

When our car died three weeks before we were going to need it most, we were already resolved to the fact that we might not be able to find the car we wanted before I started radiation. Then I had a dream on a Tuesday, and on the following Saturday a salesman we met for five minutes, two weeks previous, called us to say that he had unexpectedly come into possession of precisely the car we were looking for, were we still looking? We were. This was clairvoyant! The next call we got asking us if we still needed a car, was a week before my radiation treatments were ending. We didn’t need one anymore.

Just when I needed to stay in a place that didn’t have stairs to climb, and was a bit closer to the Proton Center, I lost the keys to the apartment I was staying in and had to stay in a hotel until the locksmith could come and change the locks…these things make me wonder. What is luck? What is timing? What is planned? What isn’t planned? What is the power of positive thinking? What is a miracle?

I cannot stop thinking about the idea that what happens is just as important as what doesn’t happen. I can not stop thinking about how many other things that have happened to me in my life that I haven’t mentioned here seem driven my some other force. What is that?

Tuesday, August 19, 2008

I Had a Dream About a Cinnamon Babka

I find myself having cravings for very specific foods, which is funny because I really don’t have that great an appetite yet. So when I get a craving, I do like to yield to it.

The other night I dreamed about a cinnamon babka. For those of you that don’t know what a babka is…Webster’s says it is a loaf shaped coffee cake of sweet yeast dough to which raisins, chocolate or nuts can be added. Trust me this description doesn’t do a babka justice. I will take a moment to say that while all babkas are good…the most available variety seems to be chocolate, but the one I love the most is the cinnamon. There is a really good Jewish bakery about 25 minutes from my house; but this does sometimes feel like quite the trek to capture one’s babka…but on the morning I woke up from my babka dream, Jon needed to get a ride to Great Neck (home of the babka), because there was track work on all stations up until Great Neck. How funny is that? So off we went. He drove to Great Neck and went into bakery to get the babka before I was to drop him at the train station right next door. I was specific about the fact that my first choice was a cinnamon, but that I would take a chocolate. I’ve been to this bakery many times over the years and I have not in all that time spied a cinnamon babka, I was even wondering on the way over to the bakery, whether they even still made the cinnamon variety. I was expecting a chocolate one…a cinnamon would be a real prize.

The story goes something like this…I wasn’t there, so I only know what I have been able to piece together from the different accounts of this convoluted babka story. Jon went into the bakery and pointed to what he thought was a chocolate babka. He then asked what kind of babkas they had that day…he heard the man say that there was one cinnamon one, and feeling that he had also just seen and pointed to a chocolate one, called me on my cell to find out which one I would prefer…and why did he even have to ask? Let’s just say these things do tend to happen. In our mad dash to get out of the house to the bakery, and to make Jon’s train on time, I had left my phone at home. When he couldn’t reach me, he opted for what he thought was the safe decision...and purchased a chocolate babka…or so he thought. He happily left the bakery with cake box in hand…and a delicious Great Neck pastry for himself for the ride into the city. I dropped him at the station, (I should say we dropped him, Rachel was with me), and we proceeded home. All the way home, I was imagining how good this chocolate babka would be…it wasn’t the cinnamon one of my dreams, but it was still going to be good.

Rachel and I got home, opened up the box. It didn’t look like a babka…it had the delicious streusel topping of a babka, but it just didn’t look right. I cut into it…it looked more like a pound cake, but perhaps they had changed their recipe. I had to eat it to know for sure…nope, definitely not a babka…a chocolate pound cake for sure. Buzz kill!

I could have let this go, and enjoyed the pound cake…but a pound cake is no babka…and I had had my heart set on it. I couldn’t head right back over to Great Neck (I had things to do)…but an hour later Rachel and I took the journey back to the bakery. I walked up to the counter and said “I have a sad story to tell, my husband came in here about an hour ago, and wanted a babka, and you gave him a pound cake…here it is, you can see it’s not a babka”. The guy at the counter, said “Yes I remember that guy, he pointed to a chocolate pound cake and said he wanted a babka. I told him that that what he was pointing to wasn’t a babka, that we were all out of chocolate babkas, but I had one cinnamon left”. This must have been when Jon called about the cinnamon babka, but didn’t hear the other part about the fact that there were no chocolate babkas left. When Jon couldn’t reach me, he pointed to the streusel pound cake that he believed was a babka…and the rest is history. The counter guy, asked me what I wanted to do and I said “well, what can I do, you have no more babkas, I guess I’ll just keep the pound cake”. And then he said the most marvelous thing…he said “we still have that one cinnamon babka left if you want me to exchange the pound cake for that?” Oh my god, my cinnamon babka was still there…like it had been waiting for me…on a busy weekend morning when all the rest of the babkas had sold out before 10A…there was my cinnamon babka…the first one I have had in years, perhaps one of the few they even make in a day, or even a year…the one of my dreams. Dreams coming true again. It may not be the Prius of before, but on this morning it may as well have been.

Monday, August 18, 2008

First week after's over, but it's not over

Before I had surgery last October, my voice sounded like Minnie Mouse, and I felt as though I spoke a bit like Elmer Fudd. I had difficulty swallowing which made every meal an adventure. Seven months after surgery I felt as though I had made quite a bit of improvement. I knew that the tumor was still a big problem, but I felt better on a day-to-day basis than I had felt in months.

Today, a week after my last radiation treatment…I’m sad…so crazy, I know. I’m happy that radiation is over, but my tongue seems back to ground zero…I’m having trouble enunciating again, my voice is hoarse (although not as bad as pre-surgery), swallowing is difficult…I need to think about it, its not so automatic. My head hurts, my sinuses hurt, my throat hurts, and my memory, which I was warned could be affected…feels affected. I feel myself phumphering for words. I’m told this is due to a combination of total body exhaustion and swelling from the radiation; it will take a few months for things to normalize. It took seven months for things to improve after surgery, and it could take about that long for things to improve on this go around.

I was told that some things might be permanent. I’m thinking what things can I live with, or rather what things can I live without?

It is disconcerting that while the radiation may be over…the side effects are not, and that what I need most right now, is something that I possess the least of…patience.

Wednesday, August 13, 2008

Day Thirty-Five

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!

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, 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.

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.

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.

Day Thirty

Rachel is too sick to go to camp and I feel bad to leave her, but Jamie and my parents will watch over her and hopefully she will feel good enough tomorrow to resume her normally scheduled program.

Right before Jon and I are about to leave New York to travel to Boston, I got the call…”Heidi, Proton is down today, you’ll have to go to Photon at 4P”. I’m not thrilled about this (I was looking forward to having my second to last Proton session, and then putting that part of radiation behind me), but at least the appointment is only a half hour earlier than my originally scheduled 4:30P Proton…so no big hiccup in the travel plans.

We arrive in Boston at around 2:45…too early to check into the “fabulous” MGH Beacon House and still make it back down the hill for my appointment; we instead opt to park our car and check out the truly fabulous MGH cafeteria. This is no joke, a better hospital cafeteria I’ve never seen, perhaps not a better cafeteria period, except maybe the one at the Museum of Natural History in New York. Been there? If you have, you know what I mean. We’re talking goodness…anything a person might want foodwise…is here. I opt just for a delicious Berry Smoothie, and Jon has a fruit salad…which is unfortunate…one should really come with a bigger appetite than either of us had at that moment.

We pass the time, and an hour later we walk over to Photon. If I didn’t mention it before, Photon is the radiation that creates a firewall around my tumor. Its intention is to kill any stray cancerous tumor cells that may have moved into normal tissue around the tumor itself. I don’t think it’s my imagination, but I generally feel worse after Photon sessions…more tired, more dizzy, more sick…but I tell myself…after this one I only have three more Photon sessions left, and this makes me feels a bit better.

Afterward, we check into Beacon House. Jon has experienced this fine establishment once before, but does't really remember it that well (we were only in the room for about 8 hours when we/he stayed here the last time). We are greeted by both resident dogs, Snowball (I call this dog Meatball), he is a rather rotund all white chihauhau, and Kenya, a very friendly Cockapoo. It’s nice having dogs around…feels more like home. We check into our room, and Jon thinks that my description of the room does not disappoint.

Weekend Six

Rachel sprouted a cold and I have to try every incantation in the book to see that I don’t get this cold. We spend most of the weekend trying to stay clear from each other…this is sad for both of us…but necessary.

Sunday, August 3, 2008

Day Twenty-Eight and Twenty-Nine

MGH Beacon House is no Liberty Hotel…but it does get internet service, it has over 100 channels on TV, the air conditioning works, it has a fridge with a freezer in wich I can keep my most needed cold paks (for my post-radiating headaches), the shower head is high and strong, and it has an elevator. It also has twin hospital beds complete with plasticized mattresses and pillows…in case one is to have an accident. There are “I’ve fallen but can’t get up” buttons near both the bed and the toilet. The towels are more to the exfoliating side than the luxuriating side…as are the sheets. The curtains and bedspreads are the kind that shouldn’t get too close to an open flame (no danger of this though…the stove is quite far away). The building is an elderly apartment building, (an old building with old people). MGH owns 16 of the units for outpatients and/or their people, to use at a defrayed cost. The building is at the top of perhaps the steepest hill in Boston…so walking after radiation is not an option…have to take a cab. I can walk down though. What is most agreeable about this most recent housing is that it is cheap, and it is relatively odorless…and for the next four days it will be fine. Jamie, however, is glad to be staying only two days. Friday will be her last day. Jon will be with me all next week, the first two of which we will spend at this Motel 6 with a twist, the next two and final days we will stay at the Liberty Hotel.

On Wednesday, the first night we spent at Beacon House, Jamie swears she didn’t sleep more than a few hours…I don’t think I did either…the squeaking of the plastic mattress and pillows was distracting.

My sister-in-law Rona drove up on Thursday, she arrived about 6P. We decided to eat dinner at Faneuil Hall, eating a bit of this and a bit of can do this at Faneuil Hall; there are lots of food vendors from which to choose. This is actually a preferred way of eating for me at the moment. I can eat whatever suits me at the time, whatever my stomach thinks it may be accepting of, and I can eat as much or as little of it as I want. It was a nice night, and it seemed like the perfect thing for us all to be doing. Rona stayed in the apartment that night and was happy to do so.

Jamie and I went back to MGH Beacon House. We might have slept well on Thursday night but there was a fire drill in the middle of the night…that’s something that you wouldn’t have at the Liberty (unless of course there was a real fire). At first we didn’t know what it was…actually we still can’t figure out what it was. A bell rang at 5A, it sounded like a fire drill bell. I got up, looked through the peephole, checked the door to see if it was hot, waited to hear if there was any commotion or instructions, and then decided that we would wait for another sign…perhaps a knock at our door or a fire truck. Nothing. We later thought that maybe what we heard was the sound of the alarm being pulled after one of the elderly tenants had fallen off the toilet seat. Exciting times at Beacon House.

Jamie and I got up early on Friday morning after our “fire drill”,...actually I don’t think that either of us was really able to go back to sleep. My Proton appointment was at 8:30A, they took me surprisingly right on time…love when this happens. We took a taxi up to the top of the hill to get back to our “hotel”. Rona was ready to hit the road at 11A, we got home at 3:30P...early enough for me to be able to greet Rachel getting off her camp bus after having her first sleep-away camp glad to have not missed that, it was a big event in her life...she's been talking about going for years. I feel like I've missed a lot of the summer, I was so glad not to have missed this moment.

Friday was my 29th treatment, 6 more to go, only two of which will be Proton; the last four will be Photon…no mask at Photon…no more mask. I'm getting there.