Monday, December 14, 2009

Before You Can Walk, You Have to Ride…Or It’s Off to Musa’s Slaughterhouse We Go

It’s still my intention to walk the 227 plus miles from my house to Mass General Hospital this June; that is of course once I create my Non Profit Organization (which I find out takes time…lots of time), fill out paperwork to attract and attach various sponsors, contact sponsors and wait for them to call me back (which I find out, takes time…lots of time), train to walk long distances in all kinds of weather, and drive the walk to see what neighborhoods and terrain I’ll be going through. Will I need a weapon? Only kidding. How many hills will there be? How steep are they? Will I need rock climbing shoes? Only kidding.

So on September 26th (quite a while ago now, I was hoping to blog sooner, but these have been busy times), Rachel…my 13 year-old daughter, also my navigator, as well as my cameraperson, set out to make the ride of the walk. We had to go on all the side roads…no highways-that’s not how the Google Walking Map is laid out. We had to go over only the bridges that you can walk on; that would not be the Throgs Neck or the Whitestone Bridge…this is a story for another time. After driving 20 miles we had made it just over the 59th Street Bridge. This took us about an hour and 15 minutes…not so unusual really…not so usual yet. It takes me about this long even if I was to take the highway, and not the side roads to get to the city. Once over the bridge, we have to traverse ourselves through traffic, traffic lights, people crossing…(just because they feel like it), as well as the directions themselves. My navigator was doing an excellent job. We drove about 10 miles to get to upper Manhattan or Harlem, and from here we traverse uptown to the Bronx…the South Bronx. I think that until this day, while I’ve lived in New York most of my life, I thought that the Bronx was the Bronx Zoo-it’s not…not even close. Rachel and I drove about 1 mile, when we came to another light. This part of the Bronx was filled with many burned out warehouse type buildings, and boarded up apartments. At the light, we looked over to our right, and noticed a warehouse building with a wide open space about 20 feet long and 8 feet high, there was wire gating across the lower part of the opening…and inside some very cute sheep, goats, chickens…very nice. Rachel turned to me and said “this is a strange place for a petting zoo!” While we waited for the light to change we scanned the front of the building to see more about what we were gazing upon, and then we noticed this: “Musa’s Slaughterhouse-You Pick ‘Em, we Kill ‘Em!”. Wow, this is some interesting neighborhood. Rachel was sure that it must be illegal and that we needed to contact the police; I told her that I was equally sure that they knew about it, and that’s it mustn’t be illegal. She then said “you’re going to be walking here?” I told her that I probably would, but that I wouldn’t be alone when I walk; after I said that, I thought “I’m going to be walking here?” From Musa’s it took 20 more miles before we were out of the Bronx, (can’t say the scenery improved much), until we hit Pelham in Westchester. Twenty miles though, that may be the limit to how much I will be able to walk in a single day. What if I can’t walk that far on that day? I would like to stay overnight at a place relatively close to where I stop walking for the day. Not too many places along the way to stay here. Definitely stuff to think about.

We drove 80 miles to Bridgeport, CT and it took us 5 hours, this was only one third of the total trip…we decided to hit the open road, to make up some time. I was fairly confident that the next 100 miles of terrain along the Boston Post Road would be mostly the same. We drove about two hours before we got off near Hopkinton, MA (about 28 miles from Boston), I wanted to see the hill that is often referred to during the Boston Marathon as “heartbreak hill”. How steep was this hill? It definitely was steep, but not as big an issue for a walker as it would be for a runner…but of course I was driving, not walking…not yet anyway. Again, this will be something to think about. All tolled it took Rachel and I ten hours to drive from our house on Long Island to what will be my final destination in June-Massachusetts General Hospital. We were exhausted, Rachel was in tears; I could have used a drink. We did locate a Dairy Queen at the tail end of the trip just outside of Boston…it lifted us up a bit. There aren’t any Dairy Queens anywhere closer than two hours from where we live, so this was a treat. This trip would usually take 3 ½ hours to drive, and will probably take me, depending on how many miles I walk a day, and what my ultimate route will be, somewhere around 16 days, or so. Again, there are definitely things to think about.

Tuesday, October 13, 2009

The Tide is Turning

About a month ago I was feeling a clear sign that what had been stuck for so long, was becoming unstuck...that what was miserable for such a long time, was becoming less miserable..and what has been unfortunate, was turning towards fortunate.

Within a single week these things happened:

We went to see a Mets game and our tickets which had been located in the bleachers, were upgraded by the “Met Guest Services God”, who apparently takes bad seat tickets and swaps them for good seat tickets…just because; just because he likes you. I was wearing a classic Mets t-shirt that day...that couldn’t have hurt, and perhaps also because they wanted the stadium to look fuller to the TV audience. There were no shortage of tickets I’m sure (the Mets are having an awful season), but their loss turned out to be our gain. We were given tickets two rows back from the field, behind the Chicago cubs dugout. Nice! Another clear sign of good fortune, was that on that special night, the Mets actually won.

A week or so later, I was celebrating my birthday (just damn glad to be here), and Jon bought me a scratch off Lottery ticket. I scratched...these things almost never return more than the dollar or two I spend on them…but today, on my special day, I won $25. This was definitely a sign, and I hope a trend.

And then, when things could hardly seem like they could get better…we sold our house (a relief). This isn't a good market to sell a house. But we did. We have to be out in two months, that's an ambitious schedule-it's a part of the price one pays to sell a house in this market.

So last week, when it looked like the house that we needed to find to move into was being shy, we were not seeing anything…not a house to buy, not a house to rent (we have two dogs, two birds, and a bunny-not many renters are looking to have a small zoo move into their house), we were considering a house that was half the size we needed (no that’s not right, half the size we could fit into), when the right house came on the market. Today as I write, the right house is our house. We are set for a December move out/move in day.

I am a fan of the way that the Tide is Turning.

Tuesday, August 25, 2009

Some Words About Walking

From Here to There and Back, to There and Back, to Hell and Back, Back and Forth, to Here and Back Again, It’s a Rough Road, Long and Winding Road, Road to Nowhere, Let’s Get on the Road, Hit the Road, Road Warrior, Walk until you Drop, He Who Limps Is Still Walking, Walk This Way, Walking On Sunshine, No Walk in the Park, These Boots were Made For Walking, Walk On, Take a Walk on The Wild Side, We Must Walk Before We Run, One Step At a Time, Everywhere is Walking Distance if You Have the Time, Dream as If you’ll live forever, live as if you’ll die today

The Road Back

August 11th was one year from the last day I had radiation. Last year was the year I was sick, this year has been the year of recovery, and this next year is the year I’m moving forward. I can feel it.

Last year at this time I could hardly walk the two blocks to the hospital for treatment, today I can walk two miles, next year (June of 2010), I’m planning to walk 227 miles from my house to Mass General Hospital to raise money and awareness for Brain and Skull Base Tumor Research.

Some information about Brain Tumors...they are relatively uncommon, especially when they are compared with lung cancer, breast cancer, and prostate cancer. These “big three” cancers are responsible for 44% of all cancers diagnosed in the United States. Brain tumors constitute less than 2% of the total number of cancers diagnosed. My particular type of tumor, a chondrosarcoma (is a cancerous tumor, and difficult to treat-I’ve been quite fortunate). Because of the effective screening for breast and prostate cancer, these diseases are often diagnosed at earlier stages, and less than 20% of the patients die of their disease. In contrast, 77% of cancerous brain tumor patients will die of their tumor or complications related to their tumor. Non-cancerous brain tumors can be just as deadly. There are no effective screening strategies for brain tumors, even “early” diagnosis of small, operable tumors may not be associated with favorable prognosis. Fundraising for brain tumors is very minimal, a few afflicted celebrities have come out to support the cause-but have not lived long enough to make much ground.

The decision to “Walk”, was spiritual…strangely guided. I’ve never felt this way before. I woke up about three weeks ago, feeling that this was something I had to do…not could do, not like to do, but had to do. I feel I’m on an important path, one with grand meaning and purpose…after these last two years where I could barely find the path…this is amazing.

Over the next ten months I’ll be reaching out to corporate and medical sponsors, as well as friends and family. I plan on filming the process of creating the “walk”, as well as the walk itself. I’ll be blogging about the project’s progress.

I’m a believer in “strength in numbers”. Last year I couldn’t even consider such an undertaking, but it’s because of everyone’s contributions that I will be able to make this come true. Thank you. Let the Walking Begin!

Saturday, July 11, 2009

Best Laid Plans

I preface the next blog. I think because of all that has happened that hasn’t been planned, having plans is that much more important to me; that, and the fact that I’ve spent a career making plans, a Producer is a planner. Having the right plan, within the correct time frame can be a beautiful thing. To me, having the right plan can bring a sense of purpose and peace. Should either of those aspects go awry, the result is quite the opposite of a beautiful thing. And so how does it go? We plan and God laughs. A little less laughing please.

Strange how reading over my blog from last summer makes me feel as sick as the day I was writing it. It’s all too easy almost a year later, to remember exactly how I felt driving back and forth for treatments, the food shopping when I got there, the heat, the fear, the nausea, the slurpees, the old lady downstairs. Seems like yesterday. When will that go away? When will “it seems like yesterday?” become “it feels like a million years ago?”

Last year’s July 4th weekend was the first weekend I started to really feel the effects of the radiation. This July 4th weekend I really wanted to have a good time. What can I say…the best laid plans.

Jon took off five days from work to participate in this year’s “fun filled July 4th holiday”. He prefaced this occasion by saying “these next five days will be fun; I will take care of you”. All I can say, is it’s best not to set such high goals. Thursday came and Jon wanted to engage me in such fun-filled things as going to the hardware store, going to Home Depot for new basement ceiling tiles, going to the supermarket. Are we having fun yet? Friday was even better, it included a trip to the dog park with our puppy Max…and something else, something so amazing that I can’t even remember what it was. On Saturday, the day of July 4th we had big plans. Last July 4th we went to the beach, I was too sick to eat out, too hot to be outside for long; this year we planned to go to Pennsylvania to visit relatives, Jon had called ahead to let our relatives know we were coming up to visit, it’s a two hour ride. We, (the kids, Jon, myself and our puppy Max), took a beautiful two hour ride. My parents helped to take care of our other dog Chloe (she did not come on the ride). Our intention was to visit, partake of some lunchtime barbeque from my brother-in-law’s new BBQ venture, and then have dinner with them. Well the ride was terrific, the BBQ was delicious, complete with an authentic traveling smokehouse, but they apparently did not know we were thinking of staying for dinner. Awkward. So we chatted, and drove back two hours…scrambling afterward to seek out some 4th of July fireworks. We were exhausted from traveling so much so quickly, felt a bit like we were truckers that day. We drove around looking up at the sky for any sign of patriotic light displays we could find, which we were able to locate. This day was fun, but not what we thought it would be. Jamie in particular was wondering why she took off a day of work for this day. Three days down, two more to go. On Friday, we were supposed to go to the beach. I wanted to leave early, it had been raining for days…and days the week prior. I wanted to catch the best part of the day shoreside. The drive out to the beach is over an hour. By the time we discussed who was coming (Rachel was not interested in having a beach day, Jamie was working, but getting off early for her (around 2P), someone needed to be with Max for a certain amount of the day; he couldn’t be in the crate for more than four hours), by the time this was all figured out, I felt like my head was going to explode, and we were definitely not leaving early. I was in tears from all the negotiating and deciding. Jon and I ended up leaving around 1P, getting there around 2P. Jamie and Rachel stayed home. The highlight of the day, and perhaps this five day vacation where Jon was “going to be taking care of me”, was when we went for appetizers and the best Bloody Mary I may have ever had at a seaside restaurant that we love to go to. We stayed while the sun went down…it was beautiful, and this felt like what I had thought about wanting it to be like. If only it had ended on that note, but we still had one day left of “pampering”. I had wanted to kayak, Rachel went back to day camp, Jamie went to work, and Jon and I went to a great place to kayak. It was another beautiful weather day, it was good to be in our boats. The sun was bright, and extremely hot…this was looking good. Then hunger struck, I had cookies, I could not get to them unless I paddled up to some land…which I did. Jon was concerned that the “Nature Preserve Police” were going to come and get us (this was an unfounded worry); he did not approve of my paddling up to land. Convinced that the whole cookie operation would take only two to three minutes, I calculated the danger and decided it was worth a chance. Jon did not paddle to land, he stayed out about fifteen feet or so…he decided to take pictures while I pulled off the cookie caper. No sooner did I get up to land, when the shoreline splash came at me with quite a clip, and kept coming. Are you visualizing this picture? I was soaked, the boated filled with water, the cookies were doused, and I was pissed. As I called out to Jon to help me, as the water kept coming and coming, and I couldn’t undig myself from the shore…I could hear in the not too far distance, “I’ll be right there, I have to put away my camera”. By the time his camera was safely stowed, I was soaked. I asked Jon why he couldn’t help me sooner, and he said that he was getting there, and then he said what I know this situation definitely didn’t need. He said “I told you I didn’t think it was a good idea to go up on the shore.” I said “there will be no wet cookie for you”. I was shouting so loudly that a guy who had been napping in the bottom of his small motorboat on the way out, was aroused from his slumber to try and see what aquatic emergency was developing. It was me, I was the aquatic emergency. This is not the day I had envisioned, kind of, but not really…and this did not feel much like “being taken care of”. Plans!

Wednesday, July 8, 2009

What a difference a year makes

My hope was that I would be able to start writing this blog again from the anniversary of the first day of radiation last year (that would have been June 23rd) through to the last day of radiation (August 11th), to see what a difference a year makes. Well, much of like what I’ve planned this year, that didn’t work out. This is the year of making plans and not having them happen, or at least at the time I’ve wanted them to. This year has been exhausting and overwhelming for different reasons than last year, and for different reasons than I had thought.

Last year, I was uni-focused on finding the best doctor and treatment I could. Once I felt I did that, I focused completely on getting better. I felt physically awful, but mentally in charge to a great degree. This year, I have felt both physically awful, and in charge to almost no degree. This year is the year I felt I was supposed to be getting back on my feet, and to do that, I needed to find work that I would like doing, was able to do, and could do part-time (not so easy). This year was also the year that we had to sell our house; we bought our house five years ago based on both of us working, and only one of us has been working for the last two years. This is not the economy to sell a house. I really love this house, it makes me sad to leave it, especially given all that has gone on in the last couple of years, it’s seems important to me to have what feels a bit like a safe haven. We don’t want to move Rachel out of school, or Jon too far from the city where he works, so it just makes this puzzle that much more challenging. Anyone who has sold and bought a house at the same time knows what this is like…not easy, even under the best of circumstances.

Having all these things going on at the same time has been too much to handle at times. I have spent a career being a person who solves problems, who turns the no’s into yes’s, and yet I’m unable to solve these problems. This makes me question my strength and abilities at a time I need them most. It also makes me feel like a drain to my family. Last year I was undergoing radiation dreaming of how it would be when things weren’t upside down, but they are more upside down than ever. Not knowing when things will improve feels like running a marathon, but not knowing that the finish line is just a mile more up the hill, but instead it could be anywhere…this makes a difference when you’re running.

This year feels more lonely than last year. Not unlike when someone dies, and everyone comes to the grieving family’s immediate needs, but soon afterwards they get onto their lives, and the sad family is left to deal with their sadness; my situation was similar, in that last year during the time of crisis, many people helped me and my family to get through that time, but once that time had passed and I was supposed to be better, most of everyone went back to their own lives. This is the way of things, but difficult non-the-less because I still felt/feel like I could use the help…but unlike last year what I need this year is not as easy to figure out. Last year I needed a ride, or a babysitter, or someone to keep me company; this year is much more complicated.

I feel like I’m living in a Rubik’s cube, if I had one space in that cube I would have a bit of movement, but every space is filled, and all I can do is slide them around until I can figure out the puzzle. The combination of still not feeling that great, selling of the house, finding a job, and the rest of life’s normal challenges when you have a family in this economy is quite the puzzle. What a difference a year makes? Yes, but not for the reasons I thought it would be different. I will continue to blog for the rest of the summer.

Monday, April 6, 2009

How To Be a Smarter Patient-Part Two

Lesson 11
Over my 19 years as a patient, I have had a doctor strangely come to my bedside and cry, I had another only return my calls at 11:30 at night, another told me we would be seeing each for the rest of my life, only to then have a follow up conversation with him several days later where he told me that he wished me luck, but that I should be seeing another doctor for follow-up. All these things at the time seemed strange, but looking back now with hindsight, I know that all of these responses were indications of either things that were not right in their own lives, or in the most egregious cases…negligence on the part of that doctor…so listen to your gut. If it doesn’t feel right, it probably isn’t.

Lesson 12
Request and read all your test results. You may think you won’t understand them, but in time you will know them better than any doctor you see. When you know them, you will be able to notice even the slightest changes in them…this can save your life. Don’t trust that your doctor will be reading everything that is sent to him. The best doctors do, not all doctors are the best doctors.

Lesson 13
If you know there is something wrong with you, there most likely is something wrong. For years in between being diagnosed wrong, and being diagnosed right, I complained of various different symptoms. My tumor was fairly slow growing; the yearly MRIs indicated that “it may be larger due to angle or technology”. Instead of this being an alarm bell, or at the very least an indication for further testing, my doctors were lulled into a state of complacency. I had been seen for years, looked quite healthy, and so I was probably just overreacting. I wasn’t. The tumor that looked slightly larger every year, was slightly larger; by the time I found a doctor that listened to me, and didn’t just look at me…this tumor had grown to twice the size that it was when it was originally diagnosed. None of these previous doctors had compared the most recent MRI with the original MRI to see that it had grown. Listen to your gut, and campaign heartily for it.

Lesson 14
Don’t be wowed and wooed by credentials. Just because a doctor has graduated from an Ivy League school, and has been a resident at a top-notch hospital, does not mean he is the best doctor, or for that matter the best doctor for you. I have heard it said that a doctor can graduate from a highly regarded school and be the last in his class (barely passing), he still gets the same degree. Think about that. Don’t be blinded by credentials. I have found that the best doctors will out. When you immerse yourself in improving your health and start to research doctors, you’ll find that the same names will start to come up again and again…they will be mentioned by patients and doctors alike, and they may not all have Ivy League diplomas.

Lesson 15
Likewise, beware of the paper-writers. Doctors write papers to get published and be noticed. More papers do not translate to better doctors. Also not all papers that are written by a doctor will pertain directly to your situation. A doctor may be well versed in one area, but not in the one you need. For instance, I found out much later (when the internet was available), that the neurosurgeon that did my first surgery was very well known for epilepsy. He had written many papers on the subject, and so because of these papers he was a well-known neurosurgeon. I don’t have epilepsy. Even though epilepsy is a neurological disorder, and he was highly regarded in this area, he knew relatively little about what I had…did he say so? No. He was a highly regarded Ivy League neurosurgeon, at a top notch New York City Hospital…he had so much…but he didn’t have what I needed. Unfortunately, I didn’t know this until it was too late.

Lesson 16
When you are seriously ill, look everywhere…as though your life depends on it. Many insurance companies will pay for a doctor who is in the plan even though they may not be near where you live. Often we choose a doctor near us, not because we’re unable to go to a different doctor, but because we don’t know that another doctor may be better suited to our problem that is located not so near to us. There is no substitution for research. Research, research, research. We will comparison shop for almost everything in our lives, why not our health? If there is a doctor you think would be worth seeing, do know that you can do what’s called “self refer”; the doctor of course must be in your insurance plan to do this. To self refer you ask you PCP to give you a referral to a doctor you want to see. This follows the rules of the insurance plan, and gives you the freedom to see whom you think you should see. If the doctor is not in the plan, you’ll need to ask yourself how important it is to see that doctor; if they’re not affiliated with your plan, you don’t need to be concerned with referrals. If a doctor is not in a plan, keep in mind that with all likelihood neither will any test, or follow up care that this doctor recommends. This needs to be considered carefully…without the insurance, getting better can be even more expensive than if you don’t have it. This may seem obvious, but many people don’t know this until they have to deal with a life threatening illness. Insurance plans can be frustrating to say the least; I have had my problems here as well. Most...not all of the conflicts that arise during medical care can be debated and approved. Which brings me to Lesson 17…

Lesson 17
Sadly it is the sick person who often ends up having to be the one to keep track of the medical bills, negotiate the bills, argue the bills-this is so unfair. Having someone in “your village” to do this for you, will be absolutely invaluable. Knowing that you need this person a head of time will save you so much anxiety. Arrange it with your insurance company.

Lesson 18
As a patient, be careful about what/who you let into your “cone”. I created this blog to allow people who had Chondrosarcoma to read about my experience, and hopefully learn something from it. I also created it to let my family and friends know what was going on with me when I didn’t have the time, energy, or voice to tell them all individually. Other people walked through the door however, people who felt compelled to tell me their stories, not always positive stories…in fact the opposite. I needed to develop a bit of a tough skin for this, I had to remind myself that everyone is different, that no two medical situations are exactly the same, and that what may be the case for one person, did not mean it would be the same for me. In the end, the good outweighed the bad. This Lesson is not only about the Internet, but for all of what you allow in…staying positive is so important, don’t let anyone rock that boat.

Lesson 19
On the other side of that same coin, you will find friends and family members that will put a different spin on things. There are the “gloom and doomers”, and there are the other people that will tell you not to be depressed when you’re depressed (it will be hard not be depressed some of the time), to be appreciative instead for all that you do have. I get the intentions of these souls, but the patient needs to have the freedom to feel what they feel…and it doesn’t mean they are not appreciative of what they do have, they’re just miserable about being sick.

Lesson 20
Do not forget the power of the word of mouth. If you’ve had a bad experience with a doctor mention it. A most random thing happened to me, I was having a conversation with a friend about a doctor that I had been seeing for years, but had since stopped going to him. He was dismissive, surly, but supposedly knowledgeable. Ultimately, this doctor turned out to be a nightmare. He didn’t read my MRI’s, and missed the opportunity to truly help me. I saw him for 14 years. I know now that he was too busy thinking about him, to ever think about me. I was telling a friend about this doctor, and they said wait a minute “What is your doctor’s name?” I told him. He said “I saw that guy, he was the worst doctor I had ever met, I almost got into a fight with him”. We need to let our friends know when we’ve had a bad experience with a certain doctor. Doctor’s need to be made accountable for their actions. Not too long after that conversation, I was discussing the same doctor with another friend, and they too had seen him, and found him to be all the things I just mentioned. We all could not have been wrong. There are a few websites, for instance that allow you to speak out about a bad doctor…or a good one; but generally, there isn’t enough information out there about the “bad doctors”. The ones that cause serious harm or death, are sued, and their licenses taken away. The statute of limitations to bring suit against a negligent doctor is 2 ½ years from the date that you last saw that doctor; often you won’t even know if you’re doctor has wronged you until way after that amount of time. The doctors that may almost kill you, or the doctors that have caused harm but you don’t come to realize that until 2 ½ years later may still be out there. Talk to your friends.

Lesson 21
I just had lunch with a friend of mine, she admitted she didn’t have health insurance. I couldn’t believe it. Let me say it…and then let me say it again. Health insurance is not the place to save money. Being sick is difficult for all the reasons you think it would be, and for the ones you haven’t thought of yet. Being sick without insurance, can be devastating. If you are reading this and don’t have health insurance…don’t wait any longer to get it.

Lesson 22
Beware the pre-existing ailment clause that may be in your policy. Large companies who offer insurance to their employees are able to waive this clause; they’re able to do this because large companies are big business. However, for the individual it can be more difficult. Look for this clause, find out about it…don’t sign off on this insurance until you know exactly how it may affect you. Almost anything in your medical past could be used as a pre-existing condition, giving your insurance company reason and permission not to pay your medical bill. This could be as good as having no insurance at all. Read, read, read.

There are likely other things that I’m forgetting, but this is an excellent start to “Being a Smarter Patient”.

Sunday, April 5, 2009

This is a Success Story! How to Achieve Patient Power-Lessons 1-10, Lessons 11-22 to follow

To those looking from the outside in, my story may seem to be a survival story…and it is, but it’s much more. My story is also a success story. A survivor is someone who continues to live or exist despite an ordeal or circumstances. A success story is having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word short.

My story started 19 years ago (as has been written about in this blog)…in July of 1990. I was diagnosed with a brain tumor; this tumor has been a teacher, a distraction…an enemy. I was barely out of my twenties when I was diagnosed (or at least what it was believed to be at that time). Jamie (my daughter-as has been written about in this blog), was a year old. I am approaching fifty, and she’s about to turn twenty. Where did the time go? I think to myself, “life is half spent before we know it”. It’s time for me to begin living the rest of it.

I would be remiss however, if before moving forward I did not share what I’ve learned. There is a saying that experience is the best teacher, but the tuition is high. Ain’t that the truth! While I would not have chosen these circumstances-they happened to me, and because of them I have gleaned a great deal of knowledge about a very particular area…doctors, the business of medicine, and being a patient. These are my lessons:

Lesson 1
Opinions, opinions, opinions. It’s said you can take opinions all day long. You can…and you should. The more complicated the medical issue, the more opinions you should get. Try and get as many as your insurance will pay for or you can afford. It can be overwhelming to get/have many opinions; it’s definitely easier to get only one-but what price easy? The one opinion you have may be a wrong opinion. It is so worth taking the time and doing the research. The best solution for you will become clear. I know from experience that this is true.

Lesson 2
“Fools rush in where angels fear to tread”. Take your time. Very seldom will the extra time you take to make the right decision rob you of your life. However, making the wrong decision might very well do just that.

Lesson 3
“It takes a village to raise a child”…it also takes a village to heal a patient. It’s very difficult when you’re in the eye of the storm, to be a “clear thinker”. You need your friends, and your extended family to be out there researching, scheduling, and supporting you. I know in my case I would not have had as positive an outcome, were it not for my “village”.

Lesson 4
Doctors are just people. We put doctors on a pedestal. We believe them to have our best interest in mind, and I’m sure most do. However, don’t forget that doctoring is also a business. Doctors, either consciously or unconsciously make decisions based on their ego, their desire to be noticed in the medical field, maybe even based on bills they need to pay. This may sound callous, but think about it. Haven’t we all made a business decision here and there based on bills we have to pay? Doctoring is a business. They do what they have to do-you do what you have to do. Again being aware that this may be a part of the landscape is part of having power as a patient.

Lesson 5
Doctors never speak out against one another, no matter how obvious a misjudgment may be. They might say with regard to another doctor’s opinion something like, “I don’t get that”, or in the case of mistakes already made “no sense talking about that now, it’s water under the bridge”. If one doctor doesn’t feel that another doctor’s opinion is right, he will not say so, this seems to be some kind of medical oath, “ye shall not disagree with a colleague”. This is frustrating and upsetting when all you want to do is make the best decision. It is worse, when you don’t know that this is going on under the surface of your consultation. Again, knowing is part of Patient Power.

Lesson 6
Doctors will seldom say “I don’t know”. How much easier the process would be if the doctors that don’t know, just said it. You could then take this non-information and move on, but instead this “not knowing doctor”, can really slow down, and “poision” the process. You end up wasting valuable time on an opinion that should not even be in the mix. This makes the process more difficult, but being aware that it does exist, keeps you aware and on your toes, and a better patient.

Lesson 7
Use the Internet. If you don’t have access, find someone else that does. The Internet is invaluable. When I had my first surgery in 1990 there was no real Internet; what did exist was extremely slow, and had very limited information. These days, if you dig, you can find out so much, not only about your illness, but about your doctors background as well. There are services that allow patients to comment, even rate doctors with whom they’ve consulted. This is good information. Information is part of Patient Power.

Lesson 8
With regard to these doctor rating sites. More information is better. I like the fact that these sites are out there; these services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate on one of these sites (I’ve heard that this is something that some doctors are doing now), walk away. If a doctor is that worried about you going online and making a negative comment about them, then this is not the doctor for you.

Lesson 9
Do not allow any doctor to make you feel as though your questions are a waste of time, or that the questions are stupid, or that you’re stupid. Again, not all doctors know all things. Sometimes condescension is “I don’t know” expressed differently.

Lesson 10
Always trust your gut. I asked one of my doctors about a certain therapy, and he emphatically told me that the therapy was not for me…turns out he was wrong, this therapy is what may have saved my life. When he told me it was not for me, it didn’t sit right. I trusted my gut and pursued it anyway.

Friday, March 20, 2009

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.

Tuesday, March 17, 2009

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.

Tuesday, January 27, 2009

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.

Tuesday, January 13, 2009

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.