A couple of weeks ago I was sick with the flu, I should have gotten the vaccine, but in the past I’ve gotten the vaccine and actually ended up getting the flu anyway. I made an Executive Decision and decided not to have the vaccine this year…wrong decision. Next year I will get the vaccine…next year I’ll be one of the first people to get it. This flu took me down to the mat. First, Rachel got it-this is almost always the case; Rachel goes to High School and is a sponge for maladies, and then the worst part about this for the rest of the family is that she’s a donor-the gifter if you will, of maladies. A week later Rachel was much better…a week later Rachel’s illness had become mine; mine lasted for a month. What was first a flu-became a sinus infection. In the middle of that, Jon also was gifted the malady; he said he hadn’t remembered being that sick since Jr. High School. It was bad, and ironically it was Rachel’s Winter Recess. Jon had taken nine days off…not exactly the vacation we had imagined. At my peak of fluness, a friend of mine called and asked if I would talk to a friend of hers-she told me that her friend’s husband had recently been diagnosed with a glioblastoma. The relativity of life! Here I thought I was feeling horrible. This is a very difficult type of tumor to treat. I wasn’t sure what I would be able to say or do for my friend’s friend, I felt like crap, but I was sure she felt worse, and if it would make her feel better just being able to talk to someone who knew what it felt like to be a person, or to be with a person that had a brain tumor, of course I would listen and try and help. We talked. I don’t know if anything I said was useful. I was frustrated that I wasn’t able to do more. I was also frustrated because during these sick few weeks I had lost valuable Brain Matters time. Time I could/should be using to be able to set up my walk, and to meet with people I had been wanting to meet with…this conversation was just another indication of how much more needed to be done with regard to brain tumor awareness. No tumor patient is exactly like another one…but I lived close enough to this friend of friend’s neighborhood that I knew the neighborhood well enough, and all I could do was pay a visit. Why isn’t there more in the neighborhood?
Then two weeks after that conversation I met with the Director of the Brain Tumor Foundation and I learned something very interesting…the Foundation is making a tremendous push for early detection. I think this is a fantastic idea!
The earlier you find out if you have a tumor, the better the chances for curing that tumor. The smaller a brain tumor is, the easier it is to operate on, with all likelihood the less impactful it will become on very important nerves, the brain itself, etc. Overall, it will just be easier to treat. Without a doubt the people I’ve spoken to through this blog, or because of what I’m about to do, or have been through in my past were surprised to find out that they had a tumor…myself included. You usually don’t know you have a brain tumor until something major happens. One day you might have a seizure, or you don’t remember something very basic like your own name, or you start to hear ringing or buzzing in your ears, or you start seeing double. If you were to have an MRI as a part of regular check-up, the way we do mammograms, this would save lives. I know it would. Twenty years ago, when I was originally diagnosed, the ability, ease and technology to have these tests on a frequent basis did not exist, that is not the case today.
This is a step.
This is action.
To learn more go to www.braintumorfoundation.org
Showing posts with label patient. Show all posts
Showing posts with label patient. Show all posts
Tuesday, March 29, 2011
Wednesday, February 16, 2011
On A Mission...
A Mission is a responsibility, a duty, a commitment, a life’s work, an undertaking, a journey, an intention, a venture, a purpose, a calling, a pledge
A Mission Statement is supposed to be an official statement of the aims and objectives of a business, but it’s so much more.
I’ve written several mission statements for companies I’ve started, companies I’ve thought of starting, projects I’ve started, or thought of starting-it’s what I’ve had to do, it was a part of what was considered necessary-a part of the process, I never really thought about what a Mission Statement was, just what I needed it to be, what I needed it to accomplish-it needed to be a sales tool and that’s how it was written. It wasn’t until I was writing the Mission Statement for my Non-Profit Corporation, Brain Matters that I realized for the first time the real meaning of that word “mission”. There has never been a Mission Statement that I’ve written that’s been more important to me than the one that I’ve written for this company-it’s because this company is a "mission" for me. It feels like one of the most important things I’ve ever tried to do in my life. This is the Brain Matters Mission Statement…this is my mission, my commitment, my pledge.
Brain Matters has been created to bring awareness to the public about brain tumors; this is a personal mission to me. I was diagnosed with a brain tumor 20 years ago; it turned out to be a cancerous. Since then I’ve had two brain surgeries, and two rounds of radiation. There are advances made in medicine every day. As a patient I have learned that one of the most important things may be that while you’re greatest wish is to be cured, it may be just as important to stay alive long to take advantage of the medical advances that happen in the future until you can be cured. There are many people that don’t get that chance. I was given that opportunity.
As long as I’m physically able, I feel a responsibility to do what I can for those that aren’t as able as I am right now, and to try and do what I can for the cause. It’s for that reason that I intend to be “Walking Miles 4 Brain Matters”. I will walk 250 miles from my house in Port Washington, NY to Massachusetts General Hospital in Boston this October, taking basically the same route that my husband and I took every week when I went for proton radiation therapy at the Mass General Proton Center two years ago. I will walk through the neighborhoods and towns that I passed along the way, reaching out to the people in those towns. The kids at the schools along the route will walk with me and help raise funds and awareness for the Brain Matters cause. Brain Matters is dedicated to making the public aware of brain tumors-not just cancerous tumors, but non-cancerous tumors as well, which can be just as life threatening. We will create a documentary film of this entire walk.
Part of the funds raised by Brain Matters will be donated to Massachusetts General Hospital’s Proton Center. The Proton Center is one of the few Proton Centers in the country; without the center I probably wouldn’t be able to make this walk, perhaps I wouldn't be here today, nor might many other people who have been treated at the Center. Proton Radiation is a very important part of brain tumor therapy. We also intend to donate funds towards medical research for brain tumors. My hope as a patient is that when a person is diagnosed with a brain tumor and their doctor needs to tell them their diagnosis, it doesn’t sound like this… “I’m very sorry to have to tell you this, but you have a brain tumor. Brain tumors are very difficult to treat and we wish we had more options available to you at this time, we will try and do the best we can of course”. This walk and documentary is just the beginning, it’s Brain Matters hope that the walk will become a yearly event, from which many other things will happen.
As I said before, not many brain tumor patients get to live long enough to shine a light on a subject matter that is darker than it should be, and because I’m still here, I feel it’s important to do whatever I can do, to be one of those lights. To me it couldn’t be more personal.
A Mission Statement is supposed to be an official statement of the aims and objectives of a business, but it’s so much more.
I’ve written several mission statements for companies I’ve started, companies I’ve thought of starting, projects I’ve started, or thought of starting-it’s what I’ve had to do, it was a part of what was considered necessary-a part of the process, I never really thought about what a Mission Statement was, just what I needed it to be, what I needed it to accomplish-it needed to be a sales tool and that’s how it was written. It wasn’t until I was writing the Mission Statement for my Non-Profit Corporation, Brain Matters that I realized for the first time the real meaning of that word “mission”. There has never been a Mission Statement that I’ve written that’s been more important to me than the one that I’ve written for this company-it’s because this company is a "mission" for me. It feels like one of the most important things I’ve ever tried to do in my life. This is the Brain Matters Mission Statement…this is my mission, my commitment, my pledge.
Brain Matters has been created to bring awareness to the public about brain tumors; this is a personal mission to me. I was diagnosed with a brain tumor 20 years ago; it turned out to be a cancerous. Since then I’ve had two brain surgeries, and two rounds of radiation. There are advances made in medicine every day. As a patient I have learned that one of the most important things may be that while you’re greatest wish is to be cured, it may be just as important to stay alive long to take advantage of the medical advances that happen in the future until you can be cured. There are many people that don’t get that chance. I was given that opportunity.
As long as I’m physically able, I feel a responsibility to do what I can for those that aren’t as able as I am right now, and to try and do what I can for the cause. It’s for that reason that I intend to be “Walking Miles 4 Brain Matters”. I will walk 250 miles from my house in Port Washington, NY to Massachusetts General Hospital in Boston this October, taking basically the same route that my husband and I took every week when I went for proton radiation therapy at the Mass General Proton Center two years ago. I will walk through the neighborhoods and towns that I passed along the way, reaching out to the people in those towns. The kids at the schools along the route will walk with me and help raise funds and awareness for the Brain Matters cause. Brain Matters is dedicated to making the public aware of brain tumors-not just cancerous tumors, but non-cancerous tumors as well, which can be just as life threatening. We will create a documentary film of this entire walk.
Part of the funds raised by Brain Matters will be donated to Massachusetts General Hospital’s Proton Center. The Proton Center is one of the few Proton Centers in the country; without the center I probably wouldn’t be able to make this walk, perhaps I wouldn't be here today, nor might many other people who have been treated at the Center. Proton Radiation is a very important part of brain tumor therapy. We also intend to donate funds towards medical research for brain tumors. My hope as a patient is that when a person is diagnosed with a brain tumor and their doctor needs to tell them their diagnosis, it doesn’t sound like this… “I’m very sorry to have to tell you this, but you have a brain tumor. Brain tumors are very difficult to treat and we wish we had more options available to you at this time, we will try and do the best we can of course”. This walk and documentary is just the beginning, it’s Brain Matters hope that the walk will become a yearly event, from which many other things will happen.
As I said before, not many brain tumor patients get to live long enough to shine a light on a subject matter that is darker than it should be, and because I’m still here, I feel it’s important to do whatever I can do, to be one of those lights. To me it couldn’t be more personal.
Tuesday, January 25, 2011
May They Always Come Back
Oh those rings! I’ve talked about my rings before. I have an engagement ring and a wedding band sitting on the finger these rings are supposed to be sitting on…that is they were sitting there last week, they occasionally leave and decide to sit elsewhere. For instance, in the past I had been concerned that because I was doing somewhat strenuous activities (like twenty years ago), that I might lose my rings, so I put them in a safe little box. I didn’t know that the safe little box would be in an unsafe apartment that would be the victim of a steam pipe explosion. After that explosion, I thought those rings were lost or maybe stolen-I couldn’t find them anywhere; Jon bought me new rings. Five years later when I was clearing out an old box from our old apartment (we didn’t have that much left from that apartment-most everything was contaminated with asbestos, or destroyed, or stolen), I went through this box, and there they were…the other rings…waiting to be found…just resting. Someone (not me), one of the workers that had been hired to clean the building, must have put the little box into this bigger box, not knowing what was inside the safe little box, or maybe they did, and decided to leave them there to rest.
Then a different time, when I was about 8 months pregnant with Rachel, I took off my rings (the newer ones), because my fingers were swollen, and put them in a jewelry box in my closet. I didn’t think much about it. A couple weeks later I looked for the rings but I couldn’t find them. I didn’t think much about it, there was so much going on at the time. Not only was I pregnant-but we were raising the roof on our house and building another floor. The construction was behind schedule-instead of the building being completed by the time Rachel was born, we were just starting to build right before Rachel was born. We were also dealing with the process of hiring a babysitter or nanny because I was only taking off 6 weeks before I went back to work. Jamie was 7 years old at the time, Jon wasn’t loving his job…so maybe, just maybe I hadn’t put those rings in the jewelry box-it was possible. I thought about it, but I wasn’t obsessing over it. Then I got a call from the local Coach store thanking me for my purchases for $500-only problem was I hadn’t made any purchases there. The next day I received a call from my credit card company informing me that I had made $8000 worth of purchases…wrong. Hmmmmmm…. I decided to take a ride to the Coach Store with a picture of my babysitter (she was the only other person besides myself that would have had access to my closet). When I got to the store I asked to see the woman who had called me. She came out from the back of the store, and of course she did not recognize me, but interestingly she recognized my daughter Jamie who had come along on this bit of Secret Agent business with me; she apparently had been with our babysitter on the day the Coach purchase in question had been made. Jamie wasn’t supposed to be driven anywhere without prior permission-guess our babysitter forgot. I showed her the picture of our babysitter, and she confirmed that the picture was definitely the “thankee” that she meant to be calling on the phone the day before my visit. I decided to go to the police the following day. The police couldn’t do anything about the Coach purchase because it was a credit card exchange and that was out of their jurisdiction. But what about those rings? I wasn’t sure if our babysitter might have gone into my jewelry box in her spare time-but it seemed considering the recent information, that it was possible. The police went to her house-she let them inside; they told me afterward that she had piles of bags and boxes-probably from all her shopping sprees. They asked her to accompany them to the Police Station; she answered some questions and was kind enough to produce a pawn slip for my missing rings. What do you know? The rings were missing! They were stolen! So the rings went on another trip and back they came. They could have been sold, but they weren’t. Our babysitter could have chosen to not produce that pawn slip, but she did.
So…last week, I noticed that my increasingly thinner fingers were not holding onto my rings the way I’d like them to, and I wondered if I should have them resized…that day was Wednesday. As I wondered this, I thought it will be easier to decrease the rings, than to increase them, and that while the band for my engagement ring is simple, my wedding band would require a bit of artistry should I need to increase its size after decreasing its size, and would it really be worth it to go through all that, when my fingers might very well expand in the near future. Much thinking was given to this matter. I specifically choose to wear the wedding band on top of the engagement ring because it’s smaller and that way it acts as a stop gap if you will, for the engagement ring, also thinking strictly monetarily, the engagement ring is more expensive than the wedding ring, and all and all, while I’d be sad…very sad if I were to lose them, I’d be much sadder if I were to lose the engagement ring.
Then Thursday came…that’s Laundry Day. It was about five in the afternoon, and I was in the Laundry Room (this is quite a good size room, as rooms go), I casually tossed a pair of jeans from the laundry basket into our front-loading washing machine, and there it went…I could feel the rings moving easily and quickly past my ring finger knuckle. The jeans went into the washer, I looked down at my hand, and I saw the engagement ring teeter-tottering at the tip of my ring finger, and the wedding band was gone. I didn’t hear a sound, I had no idea what direction it may have gone; it didn’t even occur to me that it might have gone into the washer. I was most concerned about a very large drainpipe that sits directly in front of the washer, that’s about four inches wide and infinitely deep. I finished loading what I needed to load, now and then scanning around to see what I could see…seeing nothing. Not Good. I didn’t turn on the washer because I wasn’t sure how this would effect the drainpipe-if water would rise in it, and potentially sweep my wedding band down and or out. I stood for about five minutes in the room, trying to pick up on the energy or the “signs”, as I sometimes do in these situations, and I had a tremendous pull to look directly under the washing machine. I didn’t have a pull to look anywhere else, so I went with that calling. I should mention that the edge of the washer sits about four inches from the deep drain to nowhere. I got down on my knees and looked under the washer…not so slightly under, past lots of lint, fuzz…lots of things, I caught a glimpse of something about five inches back from the edge, that could have been a button, maybe an old toy; it was hard to tell. I reached in, barely able to touch it, and it was my wedding ring. So there it goes again…always coming back. I was very glad to have been reconnected with my friend.
After I put the rings in a place for safe-keeping (I hope), and think about what I should do about wearing them…should I eat more, decrease the size, or hang them from a chain around my neck? I quickly got on the phone and called my Mom and five friends-all people who know the history of my rings. I wanted to find out what meaning they thought this recent ring event had if any…wondering if they thought it meant anything else other than I needed to eat more because my fingers were becoming too thin. The responses were all very “ringlike”. I share these thoughts…to me they represent the magic of the rings and of life. The responses were, “you’re lucky in unlucky situations”, “Jon will always be there for you”, “those rings are meant to always come back to you”, “those rings belong to you”, and lastly from my good friend Cindy, “I think this is a sign, that just like all the other times when your rings left and came back, it’s the sign of a new beginning”. Oh those rings!
Then a different time, when I was about 8 months pregnant with Rachel, I took off my rings (the newer ones), because my fingers were swollen, and put them in a jewelry box in my closet. I didn’t think much about it. A couple weeks later I looked for the rings but I couldn’t find them. I didn’t think much about it, there was so much going on at the time. Not only was I pregnant-but we were raising the roof on our house and building another floor. The construction was behind schedule-instead of the building being completed by the time Rachel was born, we were just starting to build right before Rachel was born. We were also dealing with the process of hiring a babysitter or nanny because I was only taking off 6 weeks before I went back to work. Jamie was 7 years old at the time, Jon wasn’t loving his job…so maybe, just maybe I hadn’t put those rings in the jewelry box-it was possible. I thought about it, but I wasn’t obsessing over it. Then I got a call from the local Coach store thanking me for my purchases for $500-only problem was I hadn’t made any purchases there. The next day I received a call from my credit card company informing me that I had made $8000 worth of purchases…wrong. Hmmmmmm…. I decided to take a ride to the Coach Store with a picture of my babysitter (she was the only other person besides myself that would have had access to my closet). When I got to the store I asked to see the woman who had called me. She came out from the back of the store, and of course she did not recognize me, but interestingly she recognized my daughter Jamie who had come along on this bit of Secret Agent business with me; she apparently had been with our babysitter on the day the Coach purchase in question had been made. Jamie wasn’t supposed to be driven anywhere without prior permission-guess our babysitter forgot. I showed her the picture of our babysitter, and she confirmed that the picture was definitely the “thankee” that she meant to be calling on the phone the day before my visit. I decided to go to the police the following day. The police couldn’t do anything about the Coach purchase because it was a credit card exchange and that was out of their jurisdiction. But what about those rings? I wasn’t sure if our babysitter might have gone into my jewelry box in her spare time-but it seemed considering the recent information, that it was possible. The police went to her house-she let them inside; they told me afterward that she had piles of bags and boxes-probably from all her shopping sprees. They asked her to accompany them to the Police Station; she answered some questions and was kind enough to produce a pawn slip for my missing rings. What do you know? The rings were missing! They were stolen! So the rings went on another trip and back they came. They could have been sold, but they weren’t. Our babysitter could have chosen to not produce that pawn slip, but she did.
So…last week, I noticed that my increasingly thinner fingers were not holding onto my rings the way I’d like them to, and I wondered if I should have them resized…that day was Wednesday. As I wondered this, I thought it will be easier to decrease the rings, than to increase them, and that while the band for my engagement ring is simple, my wedding band would require a bit of artistry should I need to increase its size after decreasing its size, and would it really be worth it to go through all that, when my fingers might very well expand in the near future. Much thinking was given to this matter. I specifically choose to wear the wedding band on top of the engagement ring because it’s smaller and that way it acts as a stop gap if you will, for the engagement ring, also thinking strictly monetarily, the engagement ring is more expensive than the wedding ring, and all and all, while I’d be sad…very sad if I were to lose them, I’d be much sadder if I were to lose the engagement ring.
Then Thursday came…that’s Laundry Day. It was about five in the afternoon, and I was in the Laundry Room (this is quite a good size room, as rooms go), I casually tossed a pair of jeans from the laundry basket into our front-loading washing machine, and there it went…I could feel the rings moving easily and quickly past my ring finger knuckle. The jeans went into the washer, I looked down at my hand, and I saw the engagement ring teeter-tottering at the tip of my ring finger, and the wedding band was gone. I didn’t hear a sound, I had no idea what direction it may have gone; it didn’t even occur to me that it might have gone into the washer. I was most concerned about a very large drainpipe that sits directly in front of the washer, that’s about four inches wide and infinitely deep. I finished loading what I needed to load, now and then scanning around to see what I could see…seeing nothing. Not Good. I didn’t turn on the washer because I wasn’t sure how this would effect the drainpipe-if water would rise in it, and potentially sweep my wedding band down and or out. I stood for about five minutes in the room, trying to pick up on the energy or the “signs”, as I sometimes do in these situations, and I had a tremendous pull to look directly under the washing machine. I didn’t have a pull to look anywhere else, so I went with that calling. I should mention that the edge of the washer sits about four inches from the deep drain to nowhere. I got down on my knees and looked under the washer…not so slightly under, past lots of lint, fuzz…lots of things, I caught a glimpse of something about five inches back from the edge, that could have been a button, maybe an old toy; it was hard to tell. I reached in, barely able to touch it, and it was my wedding ring. So there it goes again…always coming back. I was very glad to have been reconnected with my friend.
After I put the rings in a place for safe-keeping (I hope), and think about what I should do about wearing them…should I eat more, decrease the size, or hang them from a chain around my neck? I quickly got on the phone and called my Mom and five friends-all people who know the history of my rings. I wanted to find out what meaning they thought this recent ring event had if any…wondering if they thought it meant anything else other than I needed to eat more because my fingers were becoming too thin. The responses were all very “ringlike”. I share these thoughts…to me they represent the magic of the rings and of life. The responses were, “you’re lucky in unlucky situations”, “Jon will always be there for you”, “those rings are meant to always come back to you”, “those rings belong to you”, and lastly from my good friend Cindy, “I think this is a sign, that just like all the other times when your rings left and came back, it’s the sign of a new beginning”. Oh those rings!
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, www.ratemds.com 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”.
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, www.ratemds.com 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.
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.
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.
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