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“Set peace of mind as your highest goal, and organize your life around it”

I was just at Mass. General for my annual check-up, and after what has been a tumultuous couple of months, filled with speculation that an ear infection that may have been something much worse, I found out I had no tumor growth since last year.  This is great news for me. This is news my husband and I hope to hear as we get our things together, leave our instructions for our pets, tell our kids what to do, and hit the road for a four hour ride up to Boston. I then have my MRI.  While I’m have this MRI, I’m wondering…I’m wondering while I’m listening to the jack hammering sounds going on in the ear I can still hear in…I’m wondering what’s going on inside my head.  I’m wondering  because I can’t see the inside of my head.  So many times I’ve wished I could just see for myself what was going on in my head.  I feel I’m familiar enough after all these years, that I have a good idea where to look at this point…it would give me a feeling of ahhhh to know that in between check-ups nothing had changed.  The fact that I haven’t been feeling well lately has raised my proverbial bar. The reality of my life is I don’t feel great all the time…but who does, right?  At this point, after so many years of dealing with my health, I can’t remember what I felt like before my brain tumor…and I now I’m also getting older, so I know that’s having an impact on how “perfect” I’m feeling.  But as I said, in an individual year, what might be a simple this or that, examined by a regular doctor who is not familiar with what’s considered to be a rare tumor, can really raise that worry bar.  The regular doctor suggested that what I had, (given the radiation I’ve received, and the infection he saw), may be cancer of the bone  in my ear. This evaluation did have sense worthiness…it was very close to the bone my tumor is in, it was near where I had radiation, and he said it was unlike anything he had ever seen before.  I am losing track of how many times I’ve heard this said to me.  This doesn’t bring calm and peacefulness. He prescribed intense oral antibiotics for a month, and similar ear drops for the same length of time.  He then went on to say if that didn’t work, the next step would be intravenous antibiotics, perhaps a hyperbaric chamber…and all of these methods were if I was just fortunate enough to have an intense infection, and not cancer.  He wasn’t very positive about my outcome if cancer were to be in the bone.  I was trying to see the bright side, but it was seeming very cloudy. I finished my antibiotics, and then it was time for that MRI up at Mass General to see what was going on in there.  You can see how I might be thinking things like “I don’t know where I’m going to find this inner strength?”  “It feels not that long ago since I’ve traveled down this same road”.

Then the day came, the day that has come every year since I completed Proton Radiation Therapy.  I was given the good news, the best news I can hope for, and I felt that amazing feeling of freedom, or safety…or calm.  Oh, how I wish I could bottle that feeling.  It doesn’t feel better to me than after I leave my doctor’s office knowing that he has just looked inside my head and there is nothing different.  I wish I could keep this same feeling, so that seven months from now, when my eyesight feels a bit off, I have the confidence to know that nothing is different…but I haven’t been able to hang on to this feeling.  I’ve lived so long on this lucky rocky boat, that it’s difficult to believe that come next time maybe it won’t be able to be kept from tipping over.  Maybe if I could just not go every year.  Maybe there will be a time that I will outgrow these visits.  Maybe there will be a time that it will be considered safe for me not to come and be checked, especially since at this point, should something additional be found, there is not all that much that could be done anyway? I asked my doctor, when I could stop coming and he said “we’re going to grow old together”.  We’re not that far apart in age, so I guess I hope that we both do grow old together.  I also guess I hope that as time progresses, that should there ever be a time I need anything “additional”, that advances will have been made that don’t exist at this time.  The fact is, that’s the reason why I’m in the shape I’m in today.  I would not be writing, talking, walking, if the numerous number of surgeries suggested by some surgeons in order to totally remove the tumor have, had been what I had decided to chose…definitely not.  There were many other surgeons that said my tumor could not be totally removed.  There is still that part of me, that does get concerned about all else my head has been through, to do this writing, talking and walking that I’m able to do.  It feels this way when people say things like “I would never have radiation”.  Radiation is not what one chooses like a day at the spa, it’s what one has when it’s needed to keep on living a life. I’m glad Proton Radiation was a choice for me.

So I was out walking today, thinking about my 1st year Anniversary since I took off for my walk to raise awareness for the need for more research and funding for brain tumors last year.  I’m about to do another fundraiser…this time online.  I was thinking about how amazing I felt on that walk.  Yes, I felt physically exhausted on some days, and yes, I felt concerned that the plans I made, about where I was supposed to stay or who was supposed to meet up with, or where I was supposed to speak, weren’t going to happen the way I had hoped, but I felt great.  I was trying to figure out why I felt this great.  I know it was a physical accomplishment, but I felt emotionally calm.  I felt the way I feel when I leave my doctor’s office right after he tells me everything is okay.  I kept thinking as I was walking today…why?  If I could figure it out, I could carry it with me, throughout the year.  I think I figured it out.  The walk was focused; it was about the day.  It was just about what I needed to do for the day.  I have always liked feeling like I can make things happen.  My health is only within a certain amount of my own power, and then that’s it.  I can’t fix me.  I can only do so much, I may very well have done all I can, and on bad days when I’m feeling like I’m not doing so well, that makes me feel like I may not have fought hard enough, may not have searched wide enough, may not have been smart enough.  My calm in my doctor’s office comes from feeling I’m still on the winning side.  My calm on the walk comes from feeling that everything that I’m dealing with is within my power, and if there were things that weren’t, like a storm, or a car was to hit me, or something didn’t work out, then that’s just the way it was meant to be.  I also think that not knowing what might be ahead of me is relaxing.  The fact that I’ve been really sick and know what that’s about, I can’t seem to find a way to get that out of my mind.  But this is what I finally understood as I was walking today and thinking about it…it will not make me any better, thinking about it, will rob me of the calm I felt at Mass General a few days ago. Focus on the day and what you can change, put your energy there.  I am going to try very hard to break what has almost become a habit.  I’ve done many things, I believe I can do this. 🙂

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