So there you have some background.
In 2009, spirits were pretty high most of the time ( all things considered) but we had a very strong support system and Mike had wonderful colleagues and we had a longstanding Church community that was uplifting to say the least. He could work. He felt productive, worthwhile, alive - and we could survive.
The following are some scanned photos from the 2009 trek. They are not the best quality , but if you click on them , they should enlarge. They were the worst of times, and they were the best of times to misquote Charles Dickens:
YES!
In 2011, we were commissioned to write a song for the annual PINK MASS, and together we composed " Hope is our Light". Michael performed it in 2011, 2012 and 2013 at St. Michael's Cathedral. We felt it was our song-our tribute to the cancer battle that was over. What did we know ?
*Taken in 2009 - This is at MassGeneral YAWKEY BLDG. There are hundreds and hundreds of flags displayed, all made by cancer patients of MGH. They stay for years. The view is beautiful. If you click on the picture it should enlarge and you can get an idea of what one sees when looking out the window there.
*Taken in 2009. This was Mike with his chemo pack getting PROTON radiation in Boston. It was considered experiemental at the time , and is still quite new. It is highly targeted, unlike regular (photon) radiation which he had reached his quota on. (Click any photo to enlarge)
*Taken in 2009. This is the kitchen of the wonderful Astra Zeneca Hope Lodge in Jamaica Plains Boston) where we stayed for Mikes proton treatments. Click to enlarge.
(2009) Picture of Mike with chemo on. just after we visited the Boston Aquarium. Click to enlarge.
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Soooo, was Boston, MassGeneral - The Hope Lodge , almost like a vacation for us ?
In a word?
YES!
And then, it was over
( or so it seemed)
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Here, at MassGeneral is the flag that we made in 2009. It still hangs among hundreds and hundreds and hundreds of others. Mike found it there in June, 2014. It is the last line of the school song that we composed for Our Lady of Hope School.
And this is NOW. Mike left his classroom on June 19th of 2014, and though he did not know that it would be his last time there , but it was. He has a whole new Circle of Support at Mary, Mother of Hope Church where he has played the organ for the last 2 years, but he had to leave that position as well. The pain in his nerves simply will not allow him to work and morphine is not a good companion on the job, especially while playing music.
And this brings us to where we are - the plan of six months of chemo scheduled, not for the hope of a cure, but for possible relief (shrinkage) of the pressure on the nerve bundle. This is to be followed by radiation. In the meantime, with no jobs, Michael has applied and was approved for social security disability, after having worked forty years, but there is now a mandatory six month waiting period for the first check to be issued. Only those who have been tagged by a doctor with a timeline of less than six months to live get their check any sooner under The Compassionate Disability Allowance. This is not the case for Michael because this cancer has not hit a vital organ. Drs. have no idea whether or not he has months or years to live. Of course, nobody wants 'the tag' or the timeline that comes with it! Besides, only God knows.
But life goes on in spite of cancer, and we still have a mortgage, a ridiculously high life insurance bill, a car payment and all of the other "ordinary" (what's that ?) bills that most middle income people have. We don't know yet what the eventual medical bills might be because there are certain things we currently qualify for which we may have to pay for after the social security kicks in .
It's all quite distressing to add this financial worry to the what ifs of cancer. People will say " have faith" and you may. Still, the truth is - We don't know if the chemo will work. We don't know what will happen, but we finally do know this much - we are in charge of NOTHING. It is a humbling thought.
This can happen to anyone.
CANCER SURVIVORS
So, in the past ( but this is NOW) we have thought of ourselves as cancer survivors, but how do we survive this?
Truth be told, we have a lot of things ( that most working married couples have) that are luxuries. Those need to go first!
I love my smartphone ... so spoiled.
A phone call in to the cell phone company and we learn that the cancellation fee is just too high for us, but did you know that for $10 a month for EACH cell you can have suspended service? You can't make calls or text (Hmmmm.... sounds like a toy phone I had a long time ago!) and you may only be granted a suspension for 6 months. After that, you fork over the early termination fees or else somehow your finances have improved and you pony up again. This was a tangled web I will spare you the details of, but I can tell you the F.C.C. was involved. So, if you ever run into issues with your cell phone company, don't forget they are governed by the F.C.C. We will work something out.
Then there is the all too common ' second car'. UGH.
Oh well, Mike's car needed more repairs than it's worth. There is no way we can pay for insurance, repairs and gas for two cars now.
Goodbye Buick!
Actual pic . Click to enlarge
And what about cable T.V.? Admit it. How many times have you said it was a rip-off ? Yet another one of those,can't live with it, can't live without it things. But necessity is the mother of invention , and so,
Mike goes to work making an antenna, and another, and a third. Wood and many, many hangers. Now don't feel bad when you see the picture because this is exactly the kind of thing that Michael actually likes to do !
Mike goes to work making an antenna, and another, and a third. Wood and many, many hangers. Now don't feel bad when you see the picture because this is exactly the kind of thing that Michael actually likes to do !
Mike's antennae
I'm not sure how my neighbors like it and we are not taking orders - at least not until we can get channel 22 in the bedroom (LOL) but it works. Okay, kind of.
So, you do what you have to do.
You cut the fat.
Nothing new there. Not a new idea by any means, but the cutting still hurts somehow and just adds to the indignity that sometimes comes with cancer. Cancer itself brings indignities into people's lives.
To live is a verb. Cancer is a noun.
When you live you might run, walk, sing, mow, laugh, play, drive, give, shovel, work, cook, teach, dance etc ...
No matter how good your attitude is with cancer, (and it sometimes is great!) chemotherapy is a noun. It is a very passive thing. All the imagery in the world does not change the fact that you sit back and let this thing happen to you.It makes you sick, and it aims to make you better .
Noun, verb, sick, better - it's all very black and white.
But we're songwriters, and I've tried my hand at poetry more times than I can count over thirty five years . Michael is a musician who has never taken a formal lesson of any kind in his life - a trubador since youth. We are/were teachers . I want to say something so inspirational that it can be a song title, and the words will just flow like gentle rain after a strong storm, but what I really feel right now ?
Cancer is a nightmare.
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