Tuesday, December 9, 2008

I haven’t been blogging; too busy celebrating.

October 29th was one-year from the day I had surgery last year. Rachel and I went out for ice cream sodas to celebrate, and I couldn’t help thinking what this year has been like for her. Most of last year Jamie was immersed in her first year of college; she did come home often to visit and was helpful when she did…but she was not here on a day in and out basis. Jon was here, but still tried to keep to his usual work schedule which is in at 11:30A and home at 8:30P, Sundays through Thursdays. Rachel was here most of the day when she wasn’t at school. She was here to see me in all my not so great ways. She brought me ice packs, and tea, and sat with me when I could barely get out of bed. Rachel is 12.

When I started to feel better, it was Rachel who started to schlep around town with me, and it was she who was there when I had my radiation consultation at Mass General Hospital, and she was there when I got the good news that I was a candidate for Proton Therapy. She knew what an important meeting this was, and both of us did a small jig in the middle of the street right outside the hospital.

This day on this year was a celebration for both of us…a celebration about where I had been, and how far I had come in one year.

Then there was the Election to celebrate. I was relatively confident that Obama would win, but by no means did I feel it was a sure thing. This election had been like no other I can recall…partly because it was like no other election anyone could recall, and the other part was because I spent so much of my time recuperating in front of the TV watching it unfold all year long. I felt completely immersed in the day in and day out of the election, its ups, its downs; and so accordingly my ups and downs. I have never wanted a candidate to win so badly…despite all that I have been through this year, I think that if Obama were to have lost, it would have brought me to an unbelievable depth of despair. But he won, and so we celebrated. In my mind, I’m still celebrating.

And then…
On November 16th, Jon and I celebrated our 23rd wedding anniversary. We went out to dinner, just the two of us…it had been probably over a year since we had done that, and it felt quite special. I couldn’t help thinking what this year has been like for Jon. Jon wasn’t able to be home with me as much as he wanted to; he had to work. When he was home, he had to deal with all my physical and emotional patient details; he more than anyone else rode the emotional storm with me. One day I felt useless, another day I felt hopeless, another day I would feel better, the next day I would feel worse, sick, sad, ugly. This 23rd Anniversary seemed more than a celebration of our being married 23 years, but more a celebration of all that we have been through and are still married.

And to Jamie, who may read this blog, and say “what about me, don’t you wonder what this last year has meant to me?” To this I say, “of course I do, but I haven’t had dinner or an ice cream soda with you yet…but I look forward to either or both and blogging about it afterward”. Jamie is 19.

Saturday, October 25, 2008

Expectations aren’t always what you would expect

“Our expectations were too high”. “It was better than we expected.” “It’s not everything I expected it to be”. “It went beyond my expectations”. Then there is Expectation’s brother “counting on”. “I counted on you being there”. “Don’t count on me”, or the opposite “count me in”.

During this summer when I was driving back and forth to Boston for radiation, I had much time to discuss things, much things to discuss, and somehow the conversations always seemed to touch upon expectations.

Why are our expectations so high? It may start young. When we are little and our parents drop us off at a play date; they promise to pick us up at a certain time…and they do. We come to expect that if someone says that they will be there for us, they will be. Many of our parents come from the depression era, where getting a college education seemed to be the key to success (many of them didn’t have this advantage). If you could get a college education, and you weren’t plagued with a mental or physical disability…you would automatically get a good job, and make a good living…and you would be better off than your parents and likewise, your children receiving the same benefit of an education, would be better off than you. We’ve grown up watching TV where bad guys are caught and prosecuted; where liars are realized. On TV we also saw how people worked hard, made money and bought really, really big houses, and lots of things. Our government allowed us to expect that we could borrow from the future while living decadently in the present…and that it would work out.

What do we expect? We expect that we will grow old. We expect that our kids will outlive us. We expect that we will have a roof over our head. We expect that our spouses should/will understand us…know us…but they don’t always. We expect that our government will take care of us…but they don’t. We expect that if we eat at an excellent restaurant that we will have an excellent meal, and service; but we know enough to know that this may not always happen. We expect that our family and friends will be there for us in a time of crisis…that doesn’t always happen. We expect that when we read a good movie review, that the movie will actually be good. We expect that when the traffic light is green, it’s safe to go. We expect that if we get a college education, we will get a good job…or we used to expect this. We expect that our business partners will not rip us off. We expect that if we work hard, we will make a good living. We expect that our doctor’s know what they are talking about, and if they don’t they will refer us to someone who does…but they don’t necessarily do this. We expect that when the label says “99% fat free”, or “doesn’t contain nuts”, that it has only 1% fat, and no nuts. We expect lots and lots of things.

I find/found along with all the people I discussed expectations with…that not having them be met can be heartbreaking, angering, confusing, and disappointing. I’m guessing that many more with whom I’ve not yet had the occasion to discuss expectations…feel the same way.

My conclusion. Expectations aren’t always what you expect them to be, and that perhaps the best defense is a good offense. Expect less and you will always be pleasantly surprised, grateful, even thrilled at times.


Thinking about expectations, makes me also think about what is real? Who is real? Who is being real with you? How are we supposed to be able to figure that out? Everything lately seems to be all upside down. Knowing what is real has become such a challenge.

I find myself wishing that like the bunny in Velveteen Rabbit, that the more loved you are, the more real you would become; that the older, less attractive, more threadbare you became from being loved, the more real you would become. This seems like a simple, very detectable measurement by which to judge things. What do you think?

Monday, October 20, 2008

The power of fear

Perhaps because this is Breast Cancer Awareness Month, there have been many stories on TV, in magazines, and online about cancer, of fear, of surviving …these all hit home; and they also make me aware not only of Breast Cancer, or Cancer in general, but fear…and how much of it we all have.

We have fear of our dying, fear of the ones we love dying, fear of growing old, fear of ageism, fear of separation, fear of commitment, fear of inadequacy, fear of never reaching our potential, fear of poverty, fear of losing what we have, fear of never having anything, fear of small spaces, fear of too much space, fear of heights, fear of not being seen for all we may be, fear of being seen for all that we may not actually be, fear of being alone, fear of crowds, fear of terrorism, fear of being attacked while at home, fear of being attacked when we are out of our home, fear of global warming, fear of overpopulation, fear of winter, fear of water, fear of bugs, fear of dogs, fear of germs, fear of a lack of control…so many fears.

Then there are the survivor stories; people who have been through some of the worst circumstances that a person can imagine. But they have gone through it…mostly because they had to, because lets face it, what is the alternative? You fight to live another day. There is a common thread I’ve noticed to many of these stories; these survivors often say that after having been through what may be the worst times of their lives, they are afraid of nothing anymore. They have looked fear in the face, and conquered it, and for that they are grateful and forever unchanged. I believe this to be mostly true. For me personally, there are many challenges that no longer rock me, but I don’t think all these survivors speak completely honestly. There is one huge fear that overwhelms me…that may always overwhelm me, and I’m sure that I’m not the only one; the fear of not being able to always choose the fears I wish to overcome. If I choose to jump out of a plane, or to speak in front of 10,000 people; (when at one time I would be too afraid to do either of these things), this is my choice. If I get sick again, I don’t choose this; I believe the biggest fear that I have is that I cannot choose all of what I don’t want to happen.

So ultimately, what’s behind any good fear? The lack of control…this is the hardest one to beat.

Sunday, October 19, 2008

Two months after radiation-I’m so tired of being me

When you’re sick in bed, what might you be doing? What might I be doing? Watching TV. What’s on? Not much. What’s worth watching? Not much. It’s too depressing to watch Jerry Springer, Steve Wilkos, or Maury Povich. There’s Oprah, Ellen, Tyra, and for a short while…Wendy, this is occasionally good...but mostly there are movies (some good, some not so good, many bad), and the NEWS. The NEWS now is especially tormenting. You want to watch, you need to watch, you shouldn’t watch, you have to watch. What difference does it make if you watch? So is it NEWS or a bad movie? Oh, all the decisions for a sick person.

The world seems to be imploding…and so am I. A week after I consulted with Dr. ENT and received his clean bill of health, I felt really awful. So off I went to Dr. Ear. Dr. Ear sits at the bottom of the Ear, Nose and Throat pyramid. While my Dr. ENT deals with life saving surgeries, Dr. Ear deals with abscesses and wax…gross. So he does his Dr. Ear thing and proclaims that I have an ear infection, and…a sinus infection…something Dr. ENT emphatically denied I had…in fact he said that any irritation I had was most likely due to radiation, and that I would have it forever. When I tell Dr. Ear what Dr. ENT said, he says this “well, I don’t know what to tell you, this is what we do here, and you have a huge infection”. I like how he says that that is what he does…proudly he pronounces that this dripping, waxy, oozing territory is his…Dr. ENT would not get close to this stuff…too beneath him. So beneath him I guess, that he was even unable to see it.

This was a happy day for me; finally I had someone who concurred with what I was feeling about myself…that I was infected and needed modern day medicine…something more than hope and saline spray. I went to the pharmacy, filled my prescription, took it, and started down a sad and sick path that I had not visited since last October right after I had surgery. Not even during radiation did I feel this bad. I began to hear a whooshing noise in my hearless ear, I ached all over, I was dizzy, my ear pounded with pain, I was nauseous, sick, and did I mention extremely sad?

I called Dr. Ear and he told me to stop taking the medicine, that I was probably having an allergic reaction. He prescribed medicine #2…I started to take that…I felt worse…as though that was even possible. As elated as I was initially with Dr. Ear, my enthusiasm had waned completely; it made me start to question his bold statement “this is what I do”. For me, he wasn’t doing such a good job. Besides the fact that I was now feeling sicker, I was confused about what was wrong with me. Was this an allergic reaction, was it radiation, was it tumor? And the whooshing was just driving me nuts. I have such a stew of doctors at the moment…neurologist, radiation oncologist, PCP, neurosurgeon, ENT, head and neck surgeon…I just wasn’t sure to whom to tell my story. I called my PCP…always a calm guy in the storm. He listened and decided to prescribe a regular broad base antibiotic…nothing to 21st century, and said to give it a few days and see how I feel. He also added that if the whooshing continued that I should call my neurologist.

I took the broad base antibiotic, the whooshing started to recede, I do feel better, still have an earache…but I’m relieved to have dropped some of the other symptoms. No more whooshing.

What can I say; it was a setback I could have done without. As I approach the one-year mark from my surgery last year, I feel so tired of this, so tired of being this me.

Monday, September 29, 2008

Esmie Woodhouse

Some things, no matter how much you may try…just don’t make sense.

My yoga teacher suffered an aneurysm last Sunday, a day after our Saturday morning class. The word unbelievable doesn’t describe what this is…I can’t find a word.

The fact that this happened turns sense on its ear. Esmie is inspirational. She is 65 years old and looks and seems like she is twenty years younger. She sees the world as a connective whole; she believes that we all have an influence on each other and that we are at our best when we are centered, calm and positive. She believes in a higher power, and that that power will take care of you; she has been one of my biggest supporters during this very trying year, and she is my friend.

Her class has become more than just a yoga class for me over the eight years that I’ve been going; this year especially, it has become a barometer of sorts. I would try and get to that class if I had even just the smallest amount of energy; if I could make it to the class I would feel better afterward for having been there, and a sense of accomplishment in having gone.

Out of control is what this feels like, there isn’t very much I can do right now, so I will do what I know she had done for me during this last year; I will think of her every day. Through thought I will send her healing energy, and I will hope that not only her physical strength, but that her spiritual belief will restore her to a happy, healthy life.

Saturdays will be different for a while.

Sunday, September 28, 2008

Last week was quite a mixed bag

My world:

I remember something a friend of mine said to me a few years ago. We were in the television production business together, although not exactly together. He was in it and I was in it, but we weren’t working together at the time he made this comment; this comment wasn’t, by the way, something he crafted on his own, (I had heard it before), but it was strange because of when he chose to say it. The commercial business at the time was weathering a “kind of a storm”. It was changing; there was a lot less commercial television work, but many more people wanting to do it. As a result, there was a lot of underbidding on the available projects. If you wanted to work, you often had to underbid. If you stood your ground and refused to low ball jobs, you’d eventually be out of business, and many did just that.

So it was during this time I asked my friend that age-old question “how’s business?” He replied: “If it’s good for you, then its good for you”. I knew what he was saying…he was glad that he was working. He had a small company and was able to underbid jobs and still make a profit. He was working; it was good for him. I couldn’t help thinking though of all the other people I knew who weren’t working…not so good for them. Not so good for those whom either couldn’t afford to bid a job for less, or refused to underbid for what they believed to be ethical reasons, and in their mind what would bring about the eventual diminishing or demise of the business as we knew it. That was in 2001, and the business did change, it will never be what it used to be. If the industry had taken a stand together to refuse to underbid commercial productions, recognizing that while a few would be able to do this and still make money, that generally most companies would not be able to do this, bringing about less creative options in the end, and a business that to this day is extremely hard to make a profit in. Today everyone in the TV commercial production business lives the results of those decisions in 2001.

Greed is what changed things. For a short period in time, a sector of the business was grabbing the cash. In doing so, they helped dilute the overall strength of the industry, and in the end everyone in the industry paid the price.

There is always a fork in the road, the fork for the television production industry was to decide to band together and support each other, and not to bid jobs beyond a certain low, or allow price to become one of the most important criteria on which to judge which was the best company/director to produce a job. If the industry had come together instead of fracturing, the outcome might have been quite a different one.

The Lesson: One, when it seems like it’s so good for you but so not good for others, it may not be that good. Two, beware of things that seem too good to be true, they probably are just that…too good to be true.

Sound like something familiar?

This is such a confusing time. This election, this financial crisis, this war, all of this…is not good for my health.

I’m thinking of the dawning of a new day. Aren’t you?

My Health:

I had an appointment with my Head and Neck surgeon (Dr. ENT); he was part of the surgical team that operated on me last October. It’s been almost a year since I had surgery and I’m still having a lot of…lets just call them issues with my sinuses. My sinuses were the road, on which my surgeons traveled to get to my brain…a road is not traveled without leaving any sign of passage. In my mind I thought the conversation would be something of a casual chat about all that I had been through since we had last seen each other, he would look into my nose and ears…notice that I had a raging sinus infection, prescribe me an antibiotic. I’d be off on my way, and in a week or so, all my sinus “issues” would be gone…forever.

It went more like this…he asked me how I was doing. He didn’t seem to know that I had had radiation. I’ve been keeping in touch with my neurosurgeon (Dr. IAmKing), but I would have thought that they somewhere along the line in this past year had discussed my case. I let Dr. ENT know I had radiation…he said “oh yes, I do think I remember hearing that”. Hmmmm…he seems to remember. What playing field did I just step on to? What game are we playing? He said that he was glad to hear that I was doing well. He looked into, or should I say up my nose and said that I didn’t have an infection. That the symptoms I was suffering, were probably due to the radiation. I said that these were problems I had before radiation. He seemed to ignore that, and went on to elaborate that radiation near where I needed to have it changes the function of the sinuses…forever. “FOREVER?” I say. “Yes, forever”. “What about antibiotics?” I continue to ask. “No, you don’t want to start taking antibiotics, it won’t help, you will gain a tolerance to the antibiotics, and if taken too regularly, could change an infection into a fungal infection…which you could die from. But you should keep on using the saline stray, and use it about 15 times a day”. I asked half joking “is there enough time in the day for that? You mean to tell me in 2008, the best there is to offer is salt water?” He chuckles “yep, best thing”.

He checks my ears, looks down my throat, tells me I look good, then tells me to stay in touch and keep him posted on my progress. He tells me that they (doctors I guess) hear about how wonderful Proton Therapy is…that it is being touted as good for everything from cancer to radiating your food. Is this a Proton joke or is it a Proton snub? He goes on to say, they hear about the success cases, but not about the failures. Oh, I get it now. This was the game of Radiation vs. Surgery, and he is routing for the home team…but of course he wishes me the best.

This was so not the way I hoped things would go, but I wasn’t all that surprised. If my surgeons had seen the value of Proton Therapy they would have suggested it. What about the patient’s role in this game? I felt a bit like the ball. Depressing.

Time to go to the drugstore for a year’s supply of Saline Spray.

On the brighter side:

I ran into a grocery store last week in pursuit of a bottle of canola oil, I felt a need to make a pumpkin bread…yes, a need. Fall brings on a craving for a pumpkin bread. This was ambitious of me, given my energy is still not all there…but a craving is a craving. I grabbed my oil and went to stand on line. There were three cashiers, each had at least 4 fully packed carts already standing alongside their people on line. I picked a line. Let the positive thinking begin. I stood behind a woman, who looked at me and my one item. I could see her thought process. She thought, I’d ask you if you want to go in front of me, but that won’t really help you out, since you will still need to wait behind two other wildly packed shopping carts. She said to me instead “can you believe they only have three cashiers?” I said, “It’s unbelievable”. I also knew that I was not leaving without my oil. If I had to wait it out, I would. The thought of this though does start to daunt me. I begin to think what I can lean on, since I don’t have a cart. “Should I try and grab a stray cart to help prop me up as I wait out this line?” In my scanning, I catch the eye of a man who works at the store. “Could this be a possible cashier?” We make eye contact; I nonchalantly wave my one bottle of oil, while also trying to convey my lack of stamina. It worked! The man motioned me over to the empty register, to pay for my one item. He also invited the lady in front of me to come over. The woman behind me (who had been the woman in front of me) said, “I’m sticking by you, you bring the luck”. I thought to myself “you have no idea”. This day had the earmarking of a great day.

Then on Friday of last week I decided that I would sell my tandem kayak (a two person kayak). I had bought it for Rachel and I to kayak in together, but she is more of a solo gal now, and so am I. I would buy a new or new/used single as well as a new roof rack with the proceeds from the sale of the tandem. I decided to list it on Craigslist. Things went smashingly. I got several inquiries right a way. On Sunday someone came with the cash, paid me what I wanted for the boat, and off it went with it’s new happy owner. All things should be that easy. I love Craigslist! Now I’m thinking of all the other things that I can sell.

Last week was quite a mixed bag.

Tuesday, September 16, 2008

A month after radiation...I wait

In the poem “If” by Rudyard Kipling, there is this line…”If you wait and not be tired by waiting… yours is the Earth and everything that's in it”.

And so I wait.

It’s been a month since my last radiation treatment. I feel better than I felt a month ago, but I have a ways to go until I feel the level of zippy to which I am accustomed…before all this started. In the last few weeks I’ve kayaked for a short while on a beautiful day with a group of friends, I’ve picked peaches for a bit with Jon and Rachel, I‘ve partaken of various ice creams establishments across Long Island (always good), I’ve been to the beach, and I’ve had several friends visit from out of town. These events have helped to assuage the otherwise boredom and loneliness I feel. Most everyone is doing, and I’m in a sort of limbo place.

Before I had surgery, I was doing, I had a goal…it was to finally find out what kind of tumor I had. After surgery, I was researching my post surgery options, and then organizing my treatment schedule. Every day felt purposeful. My radiation treatments while debilitating were very goal oriented. I was not waiting, I was doing. I felt a sense of control.

These days I don’t really do…I wait…unless waiting is a form of doing…it is according to Rudyard Kipling. I’m supposed to relax, rebuild, regroup, mend, get stronger…this is so passive…not really something that comes naturally to me. While I try to get comfortable with this new form of doing, I feel frustrated that my tongue, which felt better before radiation, feels worse. What can I do? Not much, I’m supposed to relax, rebuild, and wait. My sinuses hurt, my head aches, my swallowing is challenged, by head is bald in places. What can I do? Not much, just wait. So I think while I’m in my waiting state…what can I do? And this thought comes to me…I may not be able to physically control what happens to me, like how long it takes to heal, what heals when…but I can control the thoughts in my head…and this realization makes me feel better.

I tell myself that my tongue, which to my ear makes me sound like I’ve had too much to drink at lunch, is temporary. I tell myself that my sinus pain and headaches are merely the indication of healing and nothing else. I tell myself that all that has been, will be worthwhile. I tell myself that I’ll heal quickly, totally, and finally.

And then I wait.

Scorched Earth

Wednesday, September 10, 2008

Just Three Little Words...I Don't Know

I’ve mentioned my neurosurgeon before, but hadn’t given him a name for my blog…he’s not to be confused with Dr. Do Nothing who was the neuro-opthamologist I saw for fourteen years that didn’t notice my tumor was getting bigger every year. He’s also not to be mistaken for my first neurosurgeon, Dr. OverMyHead; he did surgery, but didn’t really get to the tumor, so instead he manufactured a diagnosis. I didn’t know this though until I had my second surgery last Fall with…I’ll call him Dr. IAmKing.

Dr. IAmKing, like most neurosurgeons I’ve met, came with an attitude. He’s the Chairman of Neurosurgery at a highly prestigious hospital in New York. Neurosurgeons carry themselves with a great deal of ego and stature. They wear an air of “I Know Everything”. When I first met Dr. IAmKing, he looked at my MRI’s from years past and proclaimed my tumor to be a certain kind of unusual aqueous tumor. “This is definitely liquid” he said, “We can put a drain in there, and drain it out”. I know now in retrospect, that my tumor was not liquid; it was hard like a rock. Oops! Did he admit to not getting this right? Nope. Following my consult with Dr. IAmKing, I consulted with two other surgeons who thought the tumor was rock hard, definitely not liquid. They were right, he was wrong. These two other doctors showed as much confidence and bravado about their diagnosis as Dr. IAmKing did about his. How to choose, how to choose? The difference was that Dr. IAmKing had a much less invasive surgery…I decided to go with
Dr. IAmKing.

After surgery, Dr. IAmKing, said that the tumor was rock hard, and that he could not get it all, I would definitely need more surgeries. Did he admit he was wrong? Nope.
Six weeks later when I came to see him for follow-up, he said that he could see from the MRI I had just had, that the tumor had grown quite a bit and that we needed to act quickly. He also went on to say that I would need to have a test to see if one of my carotid arteries (we have two-the one in our neck branches off when it gets into our brain) could be tied off. He hoped that the results of this test would be positive (meaning I could do with just one carotid artery), this would give him better access to the tumor and more room to move around in…he would need as much room to move around in as possible. This procedure is a big deal, once the artery is tied off, you’re watched as an out patient for six weeks to see if you have a stroke or not, it’s not something that should be rushed in to, and yet I was feeling rushed. When I went for second opinions, not a single other doctor believed there to be any demonstrative change in the size of my tumor from my pre-surgery MRI to my post-surgery MRI, nor recommended the artery be tied off. So what was Dr. IAmKing seeing? Dare a say the house payment he stood to make by performing another surgery so quickly? Yikes! Let’s face it doctoring is a business too. I would question him about this later, and he stood his ground, saying that there was definitely growth. His hospital’s own radiologist did not see any growth. Would he admit that he was wrong? Nope.

I needed time to think and research other possibilities.

And so I did. I found Proton Therapy, I asked Dr. IAmKing if he was familiar with this type of radiation. He said that he was, but that I wouldn’t be a candidate; that it was for small, round tumors, which mine was not. I consulted with Proton Therapy Center at Mass General. They not only told me I was a candidate, but that Proton Therapy is particularly effective for large, irregular, hard to reach tumors. I let Dr. IAmKing know that I was pursuing this therapy. He said, “I do not disagree, and I support your decision, and please keep me posted on how you’re doing”. Did he say he wasn’t aware that Proton Therapy was for irregular, large tumors? Nope.

The rest of this story has already been told in earlier blogs. I went, I radiated, I’m still recovering.

I have to say that despite his seemingly deep well of misinformation, I liked him. He was always available to answer my questions (not always easy to find in a doctor of such stature). He sent me an email while I was in Boston to find out how I was doing (again, not the usual procedure from a doctor of such stature). Lastly, while his impression of my tumor before surgery was wrong, his surgery left me walking and talking pretty much the same as when I went in…this is not to be underestimated when you’re in and around what neurosurgeons call “lion’s country”, or “high-priced real estate”. I excused the fact that he did not read MRI’s very well, by saying “well, he’s a surgeon, not a radiologist”. I dismissed the fact that he wasn’t as aware of Proton Therapy as I would have liked him to be (considering he is a doctor of such stature), by saying well “you can’t know everything”.

Yesterday I sent an email to Dr. IAmKing. My case is unusual, its had a lot of twists and turns, I felt he would find my post-play findings worthwhile, and remember he had sent me a previous email inquiring as to my health. It was an outline of what I had learned after he had performed my surgery on October 30th of last year. I listed that his surgery confirmed the fact that the tumor had been misdiagnosed in 1990, that he had suggested other surgeries, that I asked him about Proton Therapy and that he felt I was not a candidate. That I had consulted with Mass General and Sloan Kettering and that they felt more surgery would be a detriment, that radiation, particularly Proton Therapy would be my best option. Lastly, I wrote that I hope that by my writing this e-mail, that other chondrosarcoma patients would benefit; Proton Therapy is a very viable treatment for this kind of tumor. He responded. Did Dr. IAmKing say he was wrong? Did he say I didn’t know? Nope. He said this:

“Thank you for your thoughtful notes and for keeping me informed of your progress. Of course I was aware of the reports of the MGH group about proton beam therapy, as well as reports of other types of image-guided XRT for chondrosarcoma. My recommendations for you naturally incorporated my interpretations of how well these therapies work, their complication rates, the alternative treatments, and your medical history.”

I am thinking if he knew that these therapies were available, he owed it to me the patient to offer them up as possibilities, and to let me make the decision as to whether they would be right for me or not. If he didn’t mention them because he made a decision in his own head on my behalf, this not telling me everything, is sort of like lying. More importantly he has seemingly remade our history by saying that he was aware of these therapies. If he were aware, he would not have said that Proton Therapy was only for small round tumors. He just didn’t know, but he couldn’t say it. His ego wouldn’t let him admit it. In the end I find his response disappointing, but sadly predictable. I thought maybe he was different. “What was I thinking?”

Thursday, September 4, 2008

Happy Anniversary

Nineteen years ago on August 19th, 1989 this happened: (http://cityroom.blogs.nytimes.com/2007/07/19/the-last-big-steam-blast-gramercy-park-1989). This blew up our apartment, and blew our minds. Jamie was four months old. Everything we owned was in our apartment…but we were out for a walk, miraculously our pets…2 cats and a turtle lived to talk about it…our fish…not so good. In the next seven months we moved from my parent's house, to a corporate apartment, to a temporary rental, to a less temporary rental. In March of 1990 our lives started to feel a bit more normal, and this happened:

I remember a very pivotal moment, although I didn’t know how pivotal it was at the time. I knew that it was memorable, but I didn’t know for how many reasons.

It was July, Jamie was 15 months old; we were out for a walk, communicating non-verbally mostly, when she looked back at me from her stroller and said, “ Hi Mama”. This was amazing. Dada had been uttered, Hi was a bit old news by then, but “Hi Mama”, this was not only great because it was the first time anyone had called me Mama, but because it actually came in the form of a sentence…there was no doubt in my mind that my fifteen month old child was a genius. This simple, happy moment was almost the moment at which everything became a lot less simple. A few days later I woke up and noticed that what at first just seemed like blurry vision, was actually double vision. This was the first sign that something was seriously not right. A few days later, and a few doctors later, an MRI showed that I had a “lesion” (doctor speak for tumor). Then this happened:

On August 29th, 1990 Jamie woke from her afternoon nap, I went into her room to see her as I usually would, but instead of taking her out of her crib to play with her, or feed her, I kissed her goodbye, and I wasn’t sure when I was coming back. I was heading to the hospital to have brain surgery. As I write this on September 3rd, 2008, I still remember that scary sad feeling…I wondered if I would see her again. I wondered if when I did, in what condition I’d be. My Mom came with me to the hospital, and as soon as I walked over that hospital threshold, I went from a person to patient; you immediately feel different. You become a number, you’re issued a paper patient bracelet, you’re asked to change into hospital attire, it’s requested that you fill out your meal plan for the length of your stay, (like you know what you’d want to eat…like you’re going to be eating), nurses come to pinch you and prod you for this and that; doctors, residents, and interns come to your room and continuously ask you the same questions about your medical past and present...and within the span of a very short time you become a part of a new neighborhood…one in which you’d rather not be living. After my Mom left, Jon arrived, and when he left around 10P, that was the end of my company. I remember feeling scared, sad, and a degree of alone that I can’t describe, and that even to this day, have not felt since…I wondered if I would see him again. I wondered if when I did see him, in what condition I’d be.

The next day, on the morning of August 30th (surgery day) a nurse came in at 5A to wake me up. I was asked to get out of bed and wash…like why is that important…where was I going? In those days you checked into the hospital a day before surgery (now you arrive the same day and walk into the operating room). Having done both, I can say neither one is better than the other. After washing, you’re rolled into a holding room on a gurney and there you lay like an extra in the movie Coma, until your number is called. There I was…I was 30 with a 16 month old baby and I was having brain surgery the day before Labor Day weekend. It was at this time that I learned one of my first hospital lessons…don’t have any major procedures performed on any national holidays. My doctor did the surgery, I went to Intensive Care, and the next time I saw him was five days later. The remaining unlucky staff is what makes you an unlucky patient. No procedures on holidays…if you can help it.

Since that day, I have always been particularly aware of where I am on its anniversary. I’ve been outdoors camping, I’ve been bobbing around at sea on a cruise ship during hurricane Charley, I’ve seen U-2 at Yankee Stadium on a beautiful moonlit night, I’ve seen Pearl Jam in a torrential rain storm at Randall's Island Stadium (when they still called it Randall's Island Stadium), I’ve been kayaking, I've been pregnant with Rachel, I’ve watched the sun set at Westhampton; last year I was in Toronto after just having left Jamie at the University at Buffalo to start her first year of college, and this year I lay in bed recovering from last year (a few days after leaving Jamie at college to start her second year of college). Every year on August 30th, no matter where I am I have a moment of silence with myself…I think the same thing…“it’s good to be here, because there have been times that I wasn’t sure I would be”. This year feels especially different given all that has happened, and also because this may be the first year Mr. Dubenschmeimer may not be celebrating as well.

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 radiation...it'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 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.

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 that...you 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 experience...so 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.

Thursday, July 31, 2008

Day Twenty-Six and Twenty Seven

Jamie I ended up at the last minute staying at the Liberty Hotel on Monday night (Day 25) and Tuesday night (Day 26). I couldn’t face coming into the apartment and finding out that maybe the smell hadn’t evaporated, and then having it be too late to find another place to stay…so on Monday morning Jon booked a room for us for two nights.

On Tuesday I sent Jamie over to the apartment as a neutral nose. She sniffed it out. She called and said that as the neutral nose, she could safely say…”it still smelled, and that for her it was not so good, but not so bad... but because ever scent is seemingly sending me this way and that, that she didn’t think I should stay there”.

Now what? We couldn’t continue to stay at the Liberty, although it was the easiest solution, I just couldn’t justify the extra money. The other alternative would be Mass General Hospital Housing (I had stayed here when Jon and I came up to Boston for my set-up day). It’s fairly close to the hospital (although at the top of a very, very steep hill-we’d have to take a taxi), it’s clean, and it’s cheap. I made a call to find out if they had a room available for Wednesday and Thursday night…which they did. So that will be our digs for the next two nights. Jamie is very excited. Just kidding. What can I say, once you’ve been to the Liberty Hotel, it’s hard not being at the Liberty Hotel.

My friend from college, who lives in Seattle, but is vacationing on the Cape, drove into Boston for the afternoon to have lunch with Jamie and I…she hadn’t seen Jamie in 12 years…big change. It was a lot of fun; wish it could have been longer. She helped move us from the Liberty to MGH housing, and then was even able to take us to Proton at 3:30P. Had my 27th treatment. Down to single digits now, only 8 more to go.

Tuesday, July 29, 2008

Day Twenty-Five

I’ve thought many times during this process about how lucky I am that I’m having radiation in the summer. I don’t have to deal with the inclement weather conditions. Traveling by any form of transportation would be more difficult, if instead I were having treatment during the winter. I can pack fairly lightly. Jamie is home from college to help out. Rachel is in camp until 5P and is able to go over to her best friend’s house after camp (they go to the same camp, but different schools). My friend’s have slightly more flexible work schedules in the summer so they’re more able to help out. Spiritwise I’m stronger in summer…always have been, and lastly I’m kind of tan (not the kind of tan I’d be if I were really concentrating on it, but tan enough). The power of tanness is not to be underestimated, when you feel like crap, but are tan, you just feel better. It is not easy feeling green…but looking green just makes it that much worse.

Jamie and I (Jamie is my chaperone this week), were dropped off in Boston by my friend Renee and her daughter at about 2P; they ate a quick lunch with us, wished us a good week, and an hour later were back on the road to go home…hopefully avoiding much rush-hour traffic. Thank you, thank you Renee. At 3:30P Jamie I were at Proton. The waiting room can be a tough place to be; there are many patients who are having chemotherapy as well as radiation, and others are receiving radiation twice a day. This is my sixth week, and I seem to sit with the same group of people every day; we started at the same time, and we will finish more or less at the same time. I have watched as we’ve outwardly changed. We’re all a lot less conversational and zippy than when we first started…some of us have had some hair loss, some are swollen from taking sterioids, other thin from lack of appetite. I particularly notice that some of my co-sitters have turned a deep crimson color, these people are receiving radiation for eye tumors, and they wear their radiation on the outside. It was yesterday when I was looking at them, that I thought that must be why my head hurts so much…the inside of my head must look like the outside of theirs. Tan on the outside, crimson on the inside.

Sunday, July 27, 2008

Night Twenty-Three/Day Twenty-Four...Oh that Smell

I left the hotel around 1:30P, got to the apartment around 1:35P. I’m renewed, still tired, but I feel at the lower ebb of horrible. I open up the front door and I’m immediately attacked by that highly potent vanilla candle smell. I hold my reserve and my cookies…and make way up the stairs to the apartment. I open the front door…yuck, old apartment smell…but I’m dealing…and then I climb the last set of stairs into the apartment…and I can’t deal. It’s overwhelming, indescribable, and awful. What is this? Did it always smell this way, and I was less sensitive? Did it only start to smell this way, and I’m too sensitive. Did it always smell this way, and I’m too sensitive? What to do? I’m thinking heavy artillery, but not too heavy, that comes with smells of its own. I decide to go to Whole Foods for options. Just being inside a grocery store right now is not what I need, but I persevere. I decide to buy some eucalyptus branches…can’t hurt. I look for other options, but can’t find them. I return to the building, breathe through my mouth and break out those branches. Not really the immediate solution I need…maybe in time, but not helping so much at the moment.

It wasn’t much longer, and Jon arrived. He had driven up to Boston as planned, to spend the night, and drive me home on Friday. He comes armed with a plumber's snake and some Liquid Plumr for the stopped up kitchen drain. He also does a “just in case” mass cleanout on the fridge. He appoints fresh smelling chemical devices throughout the apartment. He Fabreezes things...he is most active on “smell elimination detail” but there is no real improvement. How upsetting.

I start to come up with “what next” solutions. I could leave the apartment and stay out until I absolutely have to come back. I can look into other housing solutions…I do the math about how much it would be to stay in a hotel for the remainder of my treatment, and that just seems prohibitively expensive. It depresses me to think I may not have that many options, and how am I going to live with this odor. Thinking too much about what the odor may actually be, only makes me feel worse, and yet I can’t seem to help myself from thinking about this. Stop the madness.

Jon and I go to Proton at around 4:10P. I’m not done until 5:30P. I can’t bear going back just yet, so we decide to go over to my home away from home…the Liberty Hotel…for a beverage and a small snack. We finish up around 6:30P…maybe this is enough time for all of Jon’s efforts to have taken effect…not to mention the eucalyptus. We head back, we head up, we head in…Nope…no such luck.

This was a most miserable night, couldn’t wait to leave. The only favorable thing I could tell myself is that I will only have another 8 nights here, and that maybe over the weekend when I’m away, things will improve. Wish this with me.

P.S.-Proton was unusually late in the day on Friday…it was 2:30P. Jon and I didn’t get on the road until almost 4P. We hit traffic everywhere, and didn’t get home until 9P. I was beyond toast when we got home. It was so good to smell the non-smell of home. Twenty-four treatments down, 11 more to go.

Friday, July 25, 2008

Day Twenty-Three...A Moment In Time

It was time to check out of the hotel. I went downstairs to the front desk, I was carrying my 30 lb knapsack with all my electronic gear, and a pillowcase stuffed with all my clean laundry for the apartment (sheets, towels, etc), a classy look to be sure. I checked out and grabbed one of the hotel’s delicious free plums for the road…the road up the block to the apartment. It was pouring, so I decided to sit a while in the hotel lobby. I parked myself on a couch, I was not far from the hotel bar (a good place for viewing)…and there I stayed for about twenty minutes or so. A couple, in their mid-50's walked up to the hotel bar after apparently just getting caught in the downpour. She was tall, fairly fashionable, wet, with very short silver hair. Her husband was tall as well, heavy-set, wet and had a t-shirt that said Harley Davidson California, they both seemed like they could come from California, but he didn’t really seem like the Harley type. I watched the both of them at the bar, the way you just do when you’re in a hotel lobby. I was not so far away, and the lobby was not so quiet that I couldn’t hear the bartender ask where they had been when they got stuck in the rain. She said that they had walked all the way to the Boston Common, that they wanted to go before their flight this afternoon. I was struck a bit by the way she said all the way to the Boston Common. The Commons are no more than seven blocks from the hotel, not such a long walk really, and they looked like they were up for a lot more walking than that.

They finish their iced teas at the bar and leave. Shortly after, I decide to saunter downstairs to catch a cab to the apartment…I’m not going to walk that five or six block walk again, not after my experience on Tuesday. I’m not going to walk all that way again. When I get downstairs, I see that the California couple is also waiting for a cab at the hotel taxi stand. It’s like a monsoon now, and she ducks inside the hotel. Her husband stays outside to assure that they don’ lose their place in the taxi queue. I stand outside for a few minutes more when I start to feel way more moist than I want to feel…I duck inside the hotel and find myself standing near the California lady with the really short silver hair. She asks me “if Boston is home for me or am I going to the airport?” I say, “No, I’m not from Boston, and I’m heading to an apartment just up the block.” She then says “but you stay at the hotel?” I tell her that I’m a patient at MGH, and that I’m staying at a friend’s apartment while I’m here for treatment, but that the stairs had started to become too much. She said, “I’m a patient also.” “What kind of treatment are you having?” I tell her “I’m here for radiation.” She says “for breast cancer? You look great, nobody would ever know that you were undergoing treatment. I’m sure you don’t feel great, but you look really good”. This makes me feel terrific. A non-friend, non-family member, that doesn’t have to say I look good, but says so because she really thinks it. An unbiased compliment from outside my inner circle perhaps stupidly carries a lot of weight. The fact that the world does not gaze upon you with curiosity is key when you are going through an illness. It makes you feel like you fit in. I tell her, that I’m receiving radiation for a skull-based brain tumor (don’t know why I feel comfortable enough to tell her this), but I guess I feel closer to her because she’s been so complimentary. She says “Me too, I had surgery two months ago, that’s why my hair is so short”. She went on to say “she was just back for her first follow-up since surgery, and that they’re holding off on radiation for her at the moment”. I tell her “You look great, no one would ever know”. She said “really?” I said “really”, and I wasn’t lying, and I wasn’t in her inner circle, and I could tell it meant as much to her as it did when she complimented me. Her cab arrived, we wished each other good luck, and I know for both of us, we would think about this mutual exchange all day, and that we would feel just a bit better because of it. After she left, I thought back to how I heard her talk to the bartender about how she walked all the way to Boston Common…only seven blocks from the hotel, and then my taxi pulled up to take me the five blocks back to the apartment. It made sense. We may look okay, but we’re not…not yet.

Wednesday, July 23, 2008

Just a Thought

I had dinner, well more like a snack with a friend this evening. We’ve known each other thirty years. Our conversation started simply enough, but some how took a familiar turn for me, and it made be think some things. The conversation pinged on my somewhat sensitive patient Achilles heel. I offer up the following thoughts.

Being sick sucks, having a great family and friends, a job you love, a life you appreciate doesn’t mean that being sick can’t still suck. These things can mutually exist, acknowledging one does not mean you are denying the other.

I am very much a believer in positive thinking, but acknowledging that something is hard or bad, does not mean that you are not thinking positively. Not thinking positively in my mind is thinking that the hard times are unchangeable, not that they don’t exist.

So I offer up as the patient who over the years has been read a long laundry list of the gifts in my life that I need to remember and concentrate on during hard times…I do not forget what I have, but I can not forget what I don’t have. It is this unrest that makes change happen. There shouldn’t be any guilt in feeling and saying that something that is bad…is bad, but always believe it can change.

Day Twenty-Two, Best Laid Plans

Got a call from Proton Center at 9:30A to let me know that the Proton machine is down, could I get to Photon at 10A? I was actually sleeping when they called (that’s what I am supposed to be doing according to my doctor…resting), and no way was I going to be able to make it over there in a half hour. Second choice please? They tell me that they have an 11:30, and if I can’t take that, they’re not sure what they can do for me. I had no real reason for not being able to make the 11:30…except this…I had made plans to have a friend come by the apartment (where I had planned to be shortly after check-out time at the hotel), at around 4P. My original appointment before the shuffle, was supposed to be at 4:10P. Oh, best-laid plans. I definitely wasn’t going to be able to find someone on such short notice to come with me to an 11:30, so I would have to go alone...this was the first time since I started radiation that I had to go by myself. The other thing was that I didn’t know how I could go to Photon, which I had already been warned might have an hour and half wait, lie down afterwards, and check out of the hotel by 1P (which would already be an extended check-out, normal check-out is at Noon).

All this re-jiggering put me in quite a state; too much for first thing in the morning. I called Jon and told him my story…really more like cried my story. I was thinking along the lines of I’ll need to check out early, run my stuff over to the apartment, and then get back for Photon at 11:30…never mind the fact that I won’t be going with anyone, which was a sadness all on it’s own. Then Jon said a most wonderful thing…he said “why don’t you just extend your stay at the hotel for another night, and not worry about having to check out. Things are hard enough as it is, just stay.” My initial thought was concern about the additional cost, but after I got over that, I just was so glad for Jon’s clarity”. One more night in this sanctuary. This may not have been how things were supposed to go, but I’m actually really grateful how things turned out”. “The best-laid plans of mice and men often go awry”…and that can be okay.

Day Twenty-One

The locksmith called at 10:45…”could I meet him at the apartment building in a half an hour?” That seemed like a no-brainer. ”No problem” I said, “and while you’re changing the locks, I’ll wait at the Starbucks”. I packed my laptop and about 15 minutes later we (me and my laptop), are off to the apartment. It’s a quick jaunt or so I thought. This short six block walk with my laptop totally evaporates my energy reserve to the point that I thought I was going to be sick before I even met the locksmith. We get to the apartment building at the same time. He gets out of his truck, at which time (probably after seeing what color of ashen I am), says “You don’t have to climb the stairs, I’ll call you when I’m done, and meet you down at the corner Starbucks”. And so he did. He finished in about a half hour, and brought with him, two sets of keys, presumably one to lose, and one to lose later. Just kidding. He gave me the keys; I gave him a check. After finishing my fortifying Chai Latte, I head back to the hotel. I missed it already.

Later in the day, my friend Karen came by the hotel to accompany me to Proton at 4:30P. We wait until 5:30P before I'm taken…what’s new? Afterward, I rested, she did some nearby window-shopping, and then we went to dinner. It was a lot of fun, she and I haven’t spent that much time together in maybe twenty years.

I devise a plan before we go to dinner, to take one of my three luggage bags with me; and then after dinner Karen would carry it to the apartment,.. which is only four blocks from the restaurant. This would make it easier for me the next day when I’m checking out; I would have only two bags to walk up the steps, instead of three. And so we followed this plan.

We get to the apartment building and I open the lock with my brand new key, step into the foyer, smell the combination of the now all too familiar fragrance of watermelon lollipop, and the most potent vanilla candle in the universe (under other circumstances, this may not be stomach-turning, but now it surely is). I mount the stairs, open the door to the apartment with my new key, and smell that other less describable smell of "old building"…we walk up the last flight of stairs into the apartment, lay down my bag, and I feel all those familiar feelings from last week flood over me, and I think , “I’m not so ready to come back here again tomorrow, I need to find a way to move past the smells, or have the smells pass me by. Maybe if I just had one more day at the hotel?".

Tuesday, July 22, 2008

Day Twenty

This is the best ceiling ever. Over the last 18 years since I had my first surgery in 1990, I have stared at many ceilings. Some ceilings cracked, some not, different colors, acoustic tile, fans, beams, moldings, air-conditioner vents, recessed lighting, all different types of lighting fixtures. I’ve thought about taking pictures of all the ceilings that I ‘ve had to stare at over the years…thought it would make a funny coffee table book. I’ve stared at these ceilings in different stages of my repair and recovery…to the point where it’s become a thing, sort of a Pavlovian thing. I cannot lie in bed and stare at a ceiling without having all those sick feeling memories flow over me. If I’m well, I’m not lying in bed too much; I have to get up and out.

I checked into the Liberty Hotel yesterday (Monday)…I love this place. I love that they offered me a glass of champagne (which I declined-but loved that they offered). I love that they offered me a beautiful ripe plum; I love the cool neutral tans and browns that decorate and adorn the room. I love that it was a former jail and that they’ve kept all the original brick and architecture. I love that the hotel restaurant is called the “Clink”. I love the fluffiest of down pillows and comforter. I love the shower that sits above my head (not at my chin). I love the Molton Brown bath products, I love the smells, and I even love the ceiling. It’s a tray ceiling, painted a calm linen white…there’s not one thing off-putting about it. I love it here in this spa-like room. I feel better just being here, certainly improves radiation Monday. I could live here.

When it was time to go to Proton, it was just a quick fifteen giant steps to get there and to get back. Being able to skip the stairs at the apartment, and the usual buying and unpacking of Whole Food items on this day, gave me a bit of an energy reserve. After radiation, I was acutally up for dinner in the North End with my friend Sandy. Sandy drove me up to Boston, went with me to Proton, ate with me, and incredibly drove back the same day. It was, I dare say, as these days go...a good day. I felt a bit more like me.

I wish every day was Monday at the Liberty Hotel.

Weekend Four

The ahness of home. I think about going to the hotel on Monday and it makes me giddy.

Sunday, July 20, 2008

Day Nineteen...Oh those keys

I walk up to the third floor, walk down to the ground floor, walk to Proton, walk back, shop, unpack, travel to and from Boston, and radiate…. this is what I do.

My doctor told me after my session on Friday, that I may be doing too much, that I should consider staying in Boston on the weekend…that the traveling may be contributing to my exhaustion and my general state of unwellness…that what I’m going through is tiring on its own. But what am I really doing? I’m existing. I’m not engaging in any high impact activities, not even low impact activities, unless you consider walking from here to there. I have to go home on the weekends...it's what I look forward to all week long. The thought that I couldn’t/shouldn’t do this, makes me feel like crying. I think the weekday routine is more of what is wearing me out, not the getting here and back. I think to myself…”I need a break from the energy sapping midweek routine. But what would that be?” I need to radiate, (can’t skip that), I need to get to and from radiation, and at this point most of my friends who are accompanying me to Proton, are also driving me (so not much more I can do to make that any easier), and I need to shop and eat. Oh those apartment stairs though. I’m grateful for the apartment and it’s location, but like any living space, it comes with its own set of responsibilities and quirks. I have to take the trash out (note to self: buy ant traps, and snake kitchen sink, so water doesn’t back up into bathroom sink,); I have to look after its tidiness, etc. An apartment is not a hotel. It would be great to stay at a hotel for a couple of days, but the additional expense would make me feel guilty. I continue to think.

And then something happens…

My friend Pat drove up to Boston to take me to radiation and drive me home on Friday. I packed up my stuff as usual. I stripped the bed, took home the dirty towels, packed up my computer equipment, and made sure the kitchen was free of any ant attracting items. I locked the door and then I put the key to the apartment in my pants pocket. I thought about putting it into one of my carry-home bags, but it just seemed a step too far (I was anxious to get out of town)…I felt it would be fine in my pocket. I lugged my three large bags down the stairs. Pat and I hit the road and didn’t stop until we hit a Subway shop about and hour and half away from Boston. I checked my pocket…still had the key. Pat went to Dunkin Donuts, I stayed in the car…I still had my key. We got back on the road, and about thirty minutes into this part of the drive, we both heard a clinking sound. It sounded like it could have been my key. I checked my pocket…no key. One and one is two…the sound must have been the key. We continued to drive home; we did not stop again. We did not open the door to the car until we got to my house…(all the time I’m confident that when I get home, I’d look under the seat and find the key). We pull into the driveway. I open up the door and immediately start to look for they key. I look, she looks, Jon looks, Jamie looks, Rachel looks…we look everywhere…in every nook and cranny. We check my bags…we check Pat’s bags…NO KEY! It’s an out of this world mystery. Through what void did this key exit? I start to worry about the logistics. How will I get another key? When will I get another key? Where will I stay?

And then it hits me…I will stay in a hotel…I’ll to stay at a hotel. I’ll have that break I so badly need. Jon called and booked a hotel room at a hotel directly behind Mass General for Monday and Tuesday. Until I’m able to get duplicate keys from the building’s landlord on Tuesday…I will use the elevator, order room service, watch TV (no TV at the apartment), bask in calm, cool neutrality, and just happily do very little. The Universe took the apartment key, and delivered me just what I needed…a hotel room.

Thursday, July 17, 2008

Day Eighteen...only Seventeen more to go

I've peaked,...I'm able to look over the mountain and see the other side. It's downhill from this point on; from now on I will have completed more Proton sessions than I have left to complete. On the other side of the mountain, I've found my energy. Knowing I have less distance to go than I've already traveled has renewed me. I even feel slightly less sick today, don't know if it's the psychological mood lifter, or I have turned the tide. This is a good day, day number Eighteen. I can see the Finish Line ahead...really see it. A round of Slurpees for everyone!

Day Seventeen

Today was my worst day yet. Today was the first day since I've started Proton Therapy that I found myself wondering if I could make the walk to the hospital. It's three/four blocks away and yet it may as well be a mile. Three/four weeks ago, three/four blocks was nothing. The only thought that rallies my spirit is that Mr. Dubenschmeimer must be feeling as lousy as I'm feeling.

My friend Eve and her daughter arrive around 12:30P, we go to lunch,...I wish I hadn't eaten. Afterward, she drives me around a bit to see some scenic spots, I really wish I hadn't eaten. She dropped me off at the apartment to rest while she parked her car. By the time she got back it was almost time to go to my 3:50P Proton session. We all walked there, and I felt every step of that walk. We were kept waiting at Proton for almost an hour. I'm thinking they really should provide beds for waiting patients. They call my name, they do their thing, I do mine. It's 5P, and I'm done...so done.

Fortunately, (Eve being the forward thinker she is), has parked her car very close to the Proton Center, so all I have to do is sit on a bench until she pulls the car around...no walking. So glad! She drops me off at the apartment and I slowly make my way upstairs.

I plug into some music and try and transport myself away from the day, but very often this thought keeps popping into my head..."where am I going to find the energy to make it through the rest of these days?"

Wednesday, July 16, 2008

Day Sixteen...A Day to Drink

I’m thinking as hard as Mondays are, Tuesdays are the hardest days. Even though Monday is a travel and radiate day, I’m coming off Sunday, which is a day of resting, and relaxing in my own home, which does make it a bit easier. On Tuesdays I feel sick because I’m lonely, and lonely because I’m sick. I have friends that are with me, and who visit…it’s not about that, it’s about not feeling like I have the energy to do for myself. On this Tuesday, I feel like a sick person , not like a person who is sick…but a patient…this is feeling I know very well, and it puts me in a funk.. I have three more weeks of Proton after this week, but only three more Tuesdays. Yayy!

Proton is at 5:50P today, another late one…this is good, maybe they even plan it this way. When you’re this far into treatment, you need more time to rest. All I can think about since I got up in the morning is the Magical Slurpee. At around 3P, I decide to venture out to the 7-11…it’s about five blocks away. It’s hot, it’s sunny, but I feel good about being able to get myself out and about. I arrive, pay my $1.59 (so worth it), and almost immediately I start to feel the Slurpee's restorative powers. I enjoy the walk back while sucking on my Coke fluff. I mount the stairs to my apartment (I’m looking forward to lying down in air-conditioning), I put my key in the apartment door lock, and realize that the bottom knob lock is locked. Uh oh, it’s never been locked before (I purposely keep it unlocked), but somehow inadvertently the lock on the knob must have been turned. I try the top lock key in the knob and it doesn’t work. I don’t panic, but my mind starts to race with possible solutions. The Building Manager? I don’t have his number. My friend who usually lives in the apartment? She’s in LA, but may know something about the lock that can help me. A locksmith? Too soon for that? The old lady downstairs? “Yes”, I think “Why not her?" She seems to know everything, she must have a key or at least the Building Manager’s number”. As I trudge down the stairs to her apartment, I worry if she still may think I am a paper-stealing suspect. I knock on her door. She appears in a fuzzy pink bathrobe, but looking perky enough. I explain my key story to her. She asks me into her apartment and tells me that she was just about to pour herself a Gin and Tonic., “Would I like one?” “No thank you” I say. I think to myself it’s a little early for drinking ,… it’s 4:00 in the afternoon; but I also think that this convivial offer is one that she would make only to an innocent person, not a criminal. This seemingly casual, matter-of-fact way in which she offers this mid-afternoon drink may explain a couple of things about her behavior,... if maybe lets say she starts drinking earlier in the day and perhaps drinks until later in the evening….just a thought.

She offers to call the Building Manager for me, but qualifies this by saying he never picks up his phone. I’m wondering if he doesn’t pick up for everyone, or does he just not pick up for her? Doesn’t matter, it’s worth a try. She calls,...no answer and no way to leave a message. I call my friend who usually lives in the apartment. No answer, I leave a message. The old lady suggests that I try a credit card on the door. She even is willing to demonstrate on her own door, until she realizes that she doesn’t have the right door for this MacGyver technique.

After a few more minutes, and just short of calling a locksmith to help me, I decide to go up and try the door again…maybe there was something I could have done, but didn’t. I try one key, no luck. I try the second key. Bingo! The door opens. Can’t tell you the relief that pours over me. I must have tried the same wrong key twice the first time around. I yell downstairs to the old lady to let her know. I thank her for her help. Proton in an hour. I'm exhausted. I need another Slurpee!

Tuesday, July 15, 2008

Day 15

Oh boy, it’s radiation/traveling Monday again. My friend Lauren has volunteered for service this morning. My appointment at Proton isn’t until 6:10P, that’s the latest its ever been, and I’m going to take advantage of this by deciding to leave home a bit later in the morning. Lauren and I leave at 11A. I’ve only known Lauren for a year or so, but she’s one of those friends you meet and feel as though you’ve met them way before you met them. We don’t know everything about each other, and the four hour ride up is a filled with lots of time to talk…which we do. Among many things that we learn about each other, is that we both need to make frequent trips to the Rest Area restroom. This is a relief (no pun intended). I’m mostly used to driving myself, so if I need to stop, I stop; but driving up with someone else…I know it may sound ridiculous, but I wasn’t sure what proper passenger etiquette would be indicated. I didn’t want to become a nuisance, figured I’d do whatever she decided to do. But no worries, we have the same needs.

We got to Boston about 4P, we shopped, Lauren carried. Afterward, Lauren unpacked and I rested. We talked some more, and then it was time for Number 15 treatment…only 20 more to go. Yikes! We go back to the apartment, Lauren and I say goodbye and she heads back to her hotel across the street…she’s driving home to Port Washington at 6A tomorrow. I think about eating, but I’m not hungry, could use a Coke Slurpee. Too tired. I collapse into bed. Oh boy, radiation Mondays always get me down.