No news is good news

Last Thursday, almost seven months to the day that I had completed my last radiation treatment, Jon and I headed to Boston for my six-month (more like seven-month) follow up. What we were hoping to hear was that there had been no tumor growth in that time.

The months in between radiation and now have been riddled, as I have explained in earlier blogs…with nervousness and anxiety…every symptom I’ve had over these months always stood to be a candidate representing tumor growth, but then again what I was/am feeling could be due to radiation…the annihilator of tumors and all things in between. All I could do was wait and see…ah, if I only had that MRI home version (just kidding…but not a bad idea, right?).

On Thursday Jon and I packed up for our overnight in Boston. My actual appointment was on Friday…but there was no way I felt I could make the drive up, then have the MRI, then have the appointment…that would be just too much fun for one day. We stopped to have lunch right outside of Boston with a longtime friend of ours; this was great and it kind of set the mood for all things good.

We left and checked into our hotel room…at where else but the beautiful Liberty Hotel. So good to be back where I belong. We were offered the usual entry glass of champagne, which we graciously accepted, and of course there was the entry fruit. In the summer when I stayed at the Liberty, the offering was a plum…this season at this time…it was a red pear-very good with champagne.

For dinner we decided to use our unused “Charlie cards” from the summer (for those that don’t know, this is akin to the Metro card or Bart Card…you get the idea). We took the T to Cambridge where we ate at a place called Four Burgers-the menu is as you would expect…four burgers. I occasionally like a restaurant where the choices are limited and simple…it’s relaxing. Our true reason for going to this restaurant was that it was a short walk from our favorite ice cream place in Cambridge…Toscanini’s. So, we each ate a big burger…Jon with a bun and cheese, me without a bun…or cheese. We split a big portion of fries (half and half)…this would be regular fries and sweet potato fries. We scarfed that down and made a beeline for the most important part of the meal…dessert. Yum! I had rum cocoa ice cream (dark chocolate with a hint of rum), with the best hot fudge I have yet to have anywhere…and I’ve been some places. This was amazing. Jon went for a Belgium Chocolate cone, this tasted surprisingly on the Milk Chocolate side. I would have thought it to be more like dark chocolate-it was not, but it was delicious despite it’s plus milk intrusion.

Stuffed to the brim, we “Charlied” our way back to the hotel…Friday would be the big day, and it would start early. I had to be at the MRI facility at 8:30A, and it was about a half hour away from the hotel.

The morning came quick. We arrived at the facility at 8:30A sharp. I was finished around 11A, and off to my follow-up appointment with my radiation oncologist at 11:30A. I had to wait until about 12:15P to be seen…seemed like old times. I remember how long I would have to wait in this very waiting room, sometimes up to an hour or more past my scheduled appointment time…busy place.

When finally we saw the doctor, I was feeling apprehensive (the long wait had not improved things as far as that went). I was thinking positively, but everything Jon and I had been through this last year and half, really came down to this moment. Would the MRI show no tumor growth up until this point? This result would be considered a success. I would still need to come back in six months, and then maybe I could stretch it out to a year for every year afterward…but this moment was crucial. The longer you can go without any tumor growth, the greater the chances of not ever having any in the future.

My doctor spent a lot of time catching up on how I’ve felt over these last months. What still bothered me? What didn’t bother me as much anymore? He didn’t seem concerned about anything I mentioned, he said that my body had been through a lot, and it would take a while to feel completely healed. Okay I’m thinking, but I’m also thinking, “couldn’t we have had this conversation after you gave me the results of my MRI?” “What are the results of my MRI?” Almost as though he had heard the thoughts inside my head, he said “Well, let’s take a look at the films”. He walked out of the room to view them-my heart was palpitating…he stepped back in and said “Congratulations! No tumor growth! This is good news, we’ll see you in six months.” And there you go. Can you believe it? Just like that, “No tumor growth”. Good News. We have heard so much not so good news that it takes a few minutes to sink in; we’ve had our battle gear up for so long, it’s hard to let it down. But we are really happy; it’s what we had hoped.

What a long, strange trip its been. I’ve spent so much time and energy towards battling this tumor; I’m both stronger and weaker because of it. It will be some time before I won’t be worrying about my next MRI, or concerned about any new symptom, but as time goes on, I suppose that will be less and less of a concern. I’m looking forward to diverting the enormous amount of energy that I’ve directed, even devoted to the elimination of this tumor, and redirecting it towards so many things. I can’t wait.

So this blog will transition from one adventure into another. Please continue to peek in on me, and thank you all for all your positive thoughts and support.

How Am I Really, Really Doing?

Recently I’ve gotten several emails from friends saying that they’re reading the blog, and like the fact that I am bringing up “life questions”, but want to know how I’m really, really doing?

What is really, really going on is that I find myself questioning most things. My life took an upside down turn, and I’m working on turning it right side up. I’m not so sure what that is anymore. I know a few things-it is no bullshit that your health is everything, without it there is little possibility of igniting anything else. I am about to visit Mass General for the first time since my last radiation treatment in August, to see that there has been no tumor growth (this will be considered a positive outcome), and I’m nervous. I am relatively certain that everything will be fine, but I have had so many residual symptoms and ailments since then, that I’m not sure what are old ailments? What are new? What is tumor? What is radiation? These thoughts keep me on my edge of everything. I’ll be glad when this milestone has passed.

Last year was the year of fighting the fight. This year is the year of recovery. They have both been difficult for their own reasons. While I am mostly filled with questions these days, I am quite certain of a couple of things, I want to feel strong…all right stronger. When I do get back to working full-time, I want to do only the work that matters to me, and brings me a sense of accomplishment…not just a living…even if it’s a great living, it just isn’t worth it in the end.

This year of recovery has also been a year of discovery. I have lost and I have found things. I find that I have friends I didn’t know I had, I also have lost a few friends I thought I had. People deal with illness differently, and my life this last couple of years has shown me this very clearly. I find that while I always knew that I had fears of several things, being sick, being homeless, being dependent to name a few, none of my fears keep me from doing what I need to do.

I find I am living a lot in my head, since my energy level is not there yet-when this is your house, you find yourself asking a lot of questions. I am doing a lot of reading about of all things, The History of Wars-The Revolutionary War, The Civil War, World Wars…it goes on. I am watching documentary films all the time…if you haven’t seen the following films, you should, they are worth seeing…”My Flesh and Blood”, “No End In Sight”, “Touching the Void” and “The Long Way Home”. I’ve seen many others, but these are the ones I’ve liked most. I’m raising a puppy to be a good dog (he became a member of our family about three months ago and he is…active). I’m also dreaming. I’m trying to create a TV show that I think is very relevant to our depressed/depressing economic times. I am pursuing several documentary ideas that I’ve had for what seems like forever. I’m imagining living in a log cabin on lots of faraway property with my family and lots of animals. I’ve read often that you need to visualize things to help them happen. I’ve been visualizing for the last couple of years…it seems to be working, so I keep visualizing.

So how am I really? I am good and I am bad…depending on the day, depending on the moment. I’ve had days where I see nothing but possibility, and then I have days that I am so low, that I can’t see anything…I hope I see less of these kinds of days as I feel more healthy. So when will I feel more healthy? There go those questions again.

Perception is Reality?

We all have “things”…”labels” we attach to ourselves over our lifetime. We give them to ourselves or others give them to us. We take these with us wherever we go, like a sack. Not good,…but not unusual. Our labels may be these: helpful, funny, sarcastic, neurotic, sweet, gay, straight, bitter, smart fat, thin, hostile, workaholic, rainmaker, inconsiderate, or connected. Any of these sound familiar? Or perhaps, we may be popular, a loner, talented, tone deaf, sympathetic, insensitive, self-involved, rich, poor, religious, agnostic, evangelical, republican, democrat, ecologically minded, animal lover, athletic, spastic, good with numbers, bad at math, or fun at parties. I was often called “fun at parties”. What does that really mean anyway? Have you ever been called a good conversationalist, easy to talk to, self-involved, awkward, beautiful, average, ugly, technically challenged, or good with gadgets? The list can be almost infinite. Are you imaginative, creative, dull, strange, bizarre, old, young, people lover, people hater, effective or useless? Do other people use some of these labels to describe you? We’ve heard people refer to other people as “she’s a saint”, “he’s a freak”, “she’s in her own world”, “he can’t help himself (he can’t help himself do what?), “she really knows how to get things done”, “give him an inch, and he’ll take a yard”, “she lights up a room”, or “he’s such a bright light”. Any of these ring a bell?

What happens when perception gets turned on it’s head? What happens when all your life you think of yourself as funny, but you meet someone who says that you’re not that funny? Does this mean that you’re not funny anymore, or just that one person doesn’t think you’re funny? Makes you think. For that person you are not funny, you might still have others rolling in the aisle. Are they wrong? Are you? Perception is reality.

What happens when you believe yourself to be someone who cares about someone else, but they don’t feel as though you care about them? Does this mean that you don’t really care, or just that they don’t feel you caring? Doesn’t really matter, in the end perception is reality.

What happens if you believe yourself to have a good relationship with your children, that you’ve been a good parent, that your kids have turned out to be reasonably good citizens, but they let you know many years later that you weren’t really all that good? Maybe you could have been home more, you could have been more attentive to their needs, you could have listened more…whatever it may be? It’s not possible to roll the film back on those past years. How do you defend your good parenting? You can’t. Perception is reality.

How can you fight perception? It is after all a person’s opinion. It is not right or wrong…it just is. It is upsetting that someone else may not see what you’re seeing. Perceptions are so intermixed with emotions, history, and memories that it would be difficult to convince someone that they’re perception is wrong, or for them to be convinced that yours is right.

In the end, I guess, you live, and others perceive. One person’s reality is not always another’s. It’s hard to accept this at times.

Oh what a year

This was the year that I lived to see another year. This was the year that I discovered Ben & Jerry’s Chocolate Therapy Ice Cream…truly therapy. This was the year that my relationship with my sister changed forever. It was the year that I discovered long lost friends from ten, fifteen, twenty, even thirty years ago…this was amazing. It was the year that I realized that good friends could sometimes feel just like family, and that sometimes family can feel less like good friends. This was the year that for the first time in eight years the candidate I voted for… won…Hallelujah! It was the year that the economy tanked and the housing market collapsed; hopefully no place to go but up…hopefully. This was the year that I sold my tandem kayak on Craigslist in one day. I love Craigslist. It was the year I tried Pepe’s Clam Pizza, Super Duper Weenies, and Ipswich Clams. Perhaps not the choice of champions, but it sure was good. It was the year that my inspirational yoga teacher/friend had an aneurysm. Initially her outcome was quite grim. Now after three months she is able to walk, to talk, and to read…she is still inspirational. She doesn’t remember ever teaching a yoga class, this may just be a matter of time. It was the year that I felt scared, angry, sad, hopeful, helpless, lucky, unlucky, positive, negative…sometimes all at the same time. It was the year that I tried acupuncture and liked it enough to keep trying it. This was the year that we adopted a beautiful, sweet new puppy. It was the year that I was unable to work, that my only job was to regain my health, and this felt like the hardest job I ever had…and these are just the things that I remember.

It was quite a year and I’m glad to see it pass. It’s funny about a New Year, you go to sleep and wake up and it’s a New Year, and some how it feels like a page has turned, there is a fresh beginning…out with the old and in with the new. It’s just another day, but what a difference a day can make.

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.

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.

P.S.

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?

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.