How the hey is Michael, anyway?
This is the page I'll be updating.
Right now ? Okay. Tomorrow ? In severe pain? Yesterday? Not so hot. So, it depends.
The meds ( including steroids) are starting to manage some of the pain at least, but the chemo seems to kick it right back up there every two weeks, sooooo it's a catch 22.
His spirits are good sometimes and then other times, losing so much all at once and the worry of no cash flow seems overwhelming. The steroids and gabapentin play with moods as well. Can't live with 'em , can't live without 'em.
He hasn't lost a single pound since he started on the chemo dubbed "the folfox cocktail", and I would credit that with the steroid. I hope that continues.
The last time he was on chemo, he was infused with fluorouracil better known as 5 F.U. He had the pump connected for five days or more and a visiting nurse would come to the house to disconnect it for the weekend. Then later, he went on xeloda by pill for 6 more months.
This time, he is on The folfox cocktail of 5 F.U., leucovorin, avastin, oxaliplatin - the BIG guns. The oxaliplatin increases his nerve pain, but the Boston doctors have insisted on the folfox regimen this time . The oxaliplatin also makes one very sensitive to cold. For about a week after the chemo, you can't even eat anything cold. It's intolerable. They have warned that you have to wear gloves in the winter- sometimes even inside of the house, yet Michael anticipates he will still be able to shovel! I, on the other hand, keep thinking of trying to get a boarder to stay in an upstairs bedroom- perhaps a college student for a low rent/barter situation, but craigslist is pretty scary and there haven't been many students knocking at the door lately (lol) . It doesn't seem to be the best time to invite a new personality into the household either.
As with most chemotherapy , all of the side effects are cumulative so anything he has this round, is worse and lasts longer on the next round.
Avastin is an evil-doer that loves to raise blood pressure, causing many to have to take meds for hypertension. It also thins the blood and makes it very easy to bleed profusely. Warnings include switching to an electric shaver, using a soft toothbrush and watching out for fingernail clippers. Of course, Michael sees no reason why he can't continue to cut his blueberry muffins with a butcher knife! If his white blood count drops, a simple cold could land him in the hospital as his immune system grows weaker. For this reason, we do our best to keep him from crowds, handshakes and hugs and hope that everybody understands.
He gets his chemo at D'Amour Center at Baystate , and the nurses there are great. The chemotherapy suite is comfortable, with large reclining chairs and small T.V.s. Lunch is served as each treatment takes 5-6 hours and then he comes home with the pump which he goes back to have disconnected 2 days later.
So while Mike starts dozing at chemo, I go into one of the adjoining rooms at D'amours to call our former insurance company, who shall remain nameless. Why do I have a bill of over $6,000.00 for an MRI when insurance should have covered it? Aha - Mr.Middleman denied the claim.
Do you know who makes all of your health decisions ? Are you aware ? I wasn't . It's relatively new actually. I didnt know that our insurance company had hired an ageny - like this one to deny ( or approve ?) all of our claims. They are a sort of middle man , a buffer who can take the hit when you're denied. My insurance company claims that doctors are forever trying to pad their wallets by ordering " useless tests" so this helps them and us to save money . Hmmm ... I somehow doubt that Mike's doctor /Harvard professor at MassGeneral needs a bigger boat at this stage of the game. I'm guessing he ordered an MRI because he knew he didn't have x-ray vision and unlike some other doctors, refused to play a guessing game with someone's life. But a place like this deemed it medically unnecessary. Just another battle to fight.
D'amours at Baystate by the way is fabulous. But, did you know there is NO cancer support there?!
That's right - none.
Cancer is about treating the whole person. I'm sorry to say that they really missed the mark there.
Additionally, the Center for Human Development took over the Cancer House of Hope in Spfld ( Plumtree Road) a few years back and so that is not in Springfield any more either.
You can go to Florence (The Cancer Connection) or the new locale for House of Hope in West Springfield, but we are bigger than both of those places, and Baystate itself is quite large. Doesn't it seem like we should have something right HERE?
*Taken in 2009, this is a photo of Mike at MassGeneral in their beautiful
meditation garden up on the 8th floor. At the time, he had lost 35 lbs. from chemo side effects.
If you click to enlarge, you will see he is wearing the LIFE IS GOOD T-shirt.
If you click to enlarge, you will see he is wearing the LIFE IS GOOD T-shirt.
In any case, I am personally grateful for the one lone nun who has made it her ministry to run a support group over at Mercy/Caritas, but caregiver support meets only once a month & the group is quite large and lasts until 9:00 P.M. There is only so much she can do !
We need more here in Springfield. Sometimes you find purpose in these things by making it your mission to make things better- for everyone.
AUGUST , 2014 CHEMO at D'Amours
Cancer is a strange illness in that one who feels very healthy can suddenly become ill, although they may have no symptoms at all. They can lose their ability to function normally, socialize, do all kinds of activities of daily living and also, to work. Losing a lot so suddenly can also easily make you *think* you are better off than you actually are. It's as if you have not had enough time to adjust to the losses. I don't believe that it's denial. It's just the nature of the beast.
I recall when Michael had cancer in 2009 and was be named as a parade ... in the St. Patricks' Day parade. Two weeks before the parade, he had every intention of walking through the streets of Holyoke, celebrating- against my wishes of course. On the day of the parade, he was laid up on the couch with severe chemo side effects , unable even to ride in the parade car which both of my sons did in his honor.
So, it was no surprise to me when Mike insisted on fixing his bike tire so he could get out there and do a little pedaling. I was against it however. I just couldn't imagine someone with leg weakness, imbalance and a tumor on their hip not being a hazard to himself on a ten speed. But he insisted. He was fine. We disagreed until we finally agreed to let the doctor be the tiebreaker. We called the office and after answering a series of questions, Mike was told to give it a try, but for a short distance and to wear his helmet. HA! What helmet? He normally goes out with my Golden Retriever by his side, on leash which is a tricky dance between man and animal for the most balanced rider. This is where I put my foot down.
So, he patched his tire, and took off for the gentle breezes and sunshiny warmth that comes with freewheeling solo.
But in the end, the tumor won out. The ride didn't last for more than a few minutes. It hurt just to get off and on.
So, I have to take the time to say right here and now that Michael will always sing, and play keys, and he picks up his guitar almost every day - despite the cramping in his hand from oxaliplatin.
(Click to enlarge)
And regardless of the tone this blog has started with, I should also make it exceedlingly clear that Michael believes this chemo will work for him - and so do I . There really is faith. There really is hope. But it's still okay to feel bad about having cancer - or any serious illness that causes your life to change drastically . It's not about feeling sorry for yourself. It's normal. There's nothing wrong with that. I have to make that clear, not only for us, but for the many people who suffer chronic illness or cancer and have guilt .
It's okay to grieve the freedom of riding a bike without pain or hopping in the car to go to work. It doesn't mean you're weak if you long for that. It doesn't mean that you've lost faith if you aren't thrilled about looking at your own mortality or the rocky road you have to walk on to get to the end of it. It just means that you're human.
I truly believe that everything happens for a reason. I just rarely know what that reason is. Sometimes it reveals itself after the fact, and I believe there are some answers that I will not get in this lifetime. I am just as certain there are answers staring me right in the face that I am blind to...but everything happens for a reason.
After Mike's cancer in 2009, I started to take my Golden Retriever, Bailey to Baystate children's ward in the cancer unit. It is a long web of red tape to volunteer there. After many months and T.B. tests and screening, I was on my way. Years of training and Bailey was certified by Bright Spot Therapy Dogs. It was as if he was born to be with children and do this work. If ever you feel sorry for yourself, even for a moment, a trip through that children's ward will snap you right out of it.
So this blog is not about pity or feeling sorry for oneself, though there are many moments of sorrow, which are real. It is foolish to deny them. I know - I've done it myself.
The Power of Prayer
8/18/2014
So, we spent a long day at D'amours and Mike is usually feeling some pretty nasty effects right after chemo, but the church was having their usual Monday night St. Peregrine novena for his intentions so of course, Michael went up and down the cellar stairs and lugged up his guitar, short of breath from the chemo, to play for the service as he normally would. I tried to talk him out of it, seeing he still wasn't up to par, though the steroid has him looking good, with no weight loss. He was convinced it was his duty to play so he brought the guitar along. He was stunned when he entered the church to find the choir there, led by Fr. Matt, and he quickly carried the instrument back out to the car.
The service included Mass and Fr. Michael's beautiful homily and was quite touching and uplifting.
How can anyone say thank you for that kind of a gift? The thoughfulness alone is convicting. Have I ever been that thoughtful? Would I be ? It's quite heartening.
This novena is said every Monday evening at 5:30 at Mary, Mother of Hope for all who have ever had cancer, have cancer or who have been touched by cancer, and at this point, I have to ask myself - Who hasn't ?
August 25, 2014
True to form, Mike was out yesterday, hanging the
school flag on the front porch in time for the first day.
I cannot recall a time when I didn't love the first day of school. But for the butterflies in my stomach and the occassional rainy forecast, it seemed to me to be 'the very best day' of all days in the calendar year !
Everyone was up bright and early and you knew what you were wearing that day.You even knew what you were having for lunch! As a young girl, I would walk with my mother to the corner school, and when I was just a little older, my brother and sister were my companions. By third grade, I would get ready in a hurry and then run across the street to my best friends house ( twins Ellen and Susan) and wait for what seemed like an eternity to walk together to Holy Family.
When I grew up, and became a teacher, I would hop into my car, plan book ready and new outfit complete with smiley pin for the little ones on, and away I would go. I loved the long white chalksticks that had never been used and the excitement of the youngsters as they met new friends and started what would be an adventure that lasted over a decade.
There were a few years there that Michael and I taught in the same wing of Our Lady of Hope - him in the Music Room and I was in a new Preschool classroom. We were the only teachers in that section of the building and some jokingly called it The Rancitelli Wing. He was like my Ellen and Susan in the morning - me rushing eagerly to get ready and be early and him stopping to do some seemingly insignificant things that made me "late". Translation - only 10 minutes early. But, we rode in together.
Today, we slept in. The only thing we need to do this morning is get ready for a 10:00 Dr. appointment for Mike to get a pneumonia shot.
It seems everything has changed.
My best friend Ellen passed from the deadly skin cancer melanoma when she was in her forties - forever young.
I still talk to her twin, Susan, almost every day. She is busy this morning and has been up since five. She's a school bus driver. First day of school.
I spoke to Michael about this, and he said that he will never again be " Mr. Rancitelli". That is precisely the kind of thing cancer (or any serious illness that knocks you out of the ball game) can do. It takes away your identity. You need to adjust to that. You need to find a way to cope with that, and you need to find a new identity, within new limits. I probed to see how much this bothered Mike, but he seemed resigned to it- at least for now. There are many stages.
No more mandatory ties with button down shirts. He must have seventy-five of those ties, many that were treasured gifts from students! No more scrambling to be "only 10 minutes early" for the first day of school. No more lunch duty, bus duty or yard duty. Best of all ? No more lesson plan books. Michael, who never took a music lesson in his life, was not a fan of lesson plans! But, he will miss the music. He will miss all of the kids. He will miss his colleagues. And, I am quite sure that some will recall and miss "Mr. Rancitelli" . But life goes on ...
So, instead of being in 2nd period, we were at D'Amours getting the first of two pneumonia shots while Mike is still feeling pretty strong overall.
AUG.25,2014
"It really shocks me when I encounter people who think kindness doesn't matter. Because I think it's pretty much the only thing that matters."
LOOKS LIKE WE'LL MAKE IT ....
This would be the 4th year Mike will be singing our song there , and he is feeling pretty good today. (SAT. 9/27/14) He's coming off of the chemo effects (though he will be right back at 'em this MON. the 29th) so today is what we call ' a good day'. To look at him, he seems fine, but for the limp caused by the tumor on his hip. He's loaded with pain meds and the steroids have kept his weight up. The only concern is if his right foot will fit in a 'normal ' shoe, but he had it elevated overnight so we are hopeful.
But the day was not over yet - lasting longer than most as that " First Day of School " almost always seems to somehow ! So, as I went to the front porch to water some plants, I was surprised by a van pulling in my driveway - Edible Arrangements ! It was from the teachers, Mike's colleagues . They thought of him on the first day of school, in all of their busyness.
By Josh Radnor
Thank you!
So, on September 5, 2014, one of Mike's colleagues, Mary Bedore, called ahead (much appreciated ) and asked if it would be okay to drop something off. She and her daughter stopped by after school with cards made from the eigth graders/ 8-B. This is the second such set of homemade cards received. The first were mailed and made from students in Grade 8-C . They are very much appreciated and suprisingly profound. I'm not sure that I want to expose what some of the students may have wished to remain private, but several mentioned that Mike had been their teacher for 10 years. That is a long relationship in a child's life. Many spoke of how he had impacted them on various levels. It was reaffirming for Michael and very touching. He read every single one of them carefully.
Below is a photo of the cards. The large one reads :
"All the world needs is Faith, Trust, and Pixie Dust."
============================================
Mary Bedore and her daughter, Grace with Michael
(*click pic to enlarge)
============
From Peter Pan ... Faith, Trust and Pixie Dust.
Makes sense. Tinkerbell knew!
A little pixie dust would be good right about now-
bring on the Magic!
Thank you teachers and students!
WHY NOT ME?
(*click pic to enlarge)
============
From Peter Pan ... Faith, Trust and Pixie Dust.
Makes sense. Tinkerbell knew!
A little pixie dust would be good right about now-
bring on the Magic!
Thank you teachers and students!
WHY NOT ME?
Earlier, I mentioned my girlfriend Ellen who died of melanoma in her 40's. It is impossible to think :
" Why me?" when you recall Ellen's spirit. I spoke at her funeral, and told everyone there that Ellen asked: " Why not me ?" Why not ? Indeed.
No ONE knows all of the reasons, but I do believe that these things ( all things) happen for a reason. It it a life lesson? And IF so, for whom? For the patient, the spouse, caregiver, famiy, people whose lives they have touched ....? Is it because of something they did ? Something they didn't do ? Was it lifestyle choices/diet etc ? Doubt that or many more would have cancer ( IMHO) .
And why do some people live and go on to survive while others pass ? Is it faith? Is it the medical treatment ? Is it hope ? Is it prayer ?
I don't know, but I do believe this much right now - only God knows.
I probably won't be taking too much advice at this point unless it comes straight from the Source!
A PRISON
CAMP
I’ve
often tried to think of a fitting term for what having inoperable cancer and
being involved in its treatment is like.
I’ve said it is a nightmare, but of course you keep waking up to it over
and over again, like GROUNDHOG DAY. I’ve
contemplated calling it Limbo, because Limbo is the state where people are just
stuck, in a place of uncertainty – like it or not. But there is no battle in
Limbo, no war going on around you.
And
finally, it came to me one day, as I was shopping -through a small and elderly
gentleman. I had been feeling more and more stressed each day and worries were
getting the better of me. Still, there
are the mundane tasks of life (such as shopping) and you do wake each day and
go through the motions to carry on.
One day,
while in a store, I was approached by an old man, stooped from age and possibly, a bone condition. “Miss, Oh Miss,“ he called. I turned and saw him and imagined
he might ask me to reach for something on a high shelf. At my height, I get
this request frequently.
Instead,
he asked: ”May I tell you something”? “Certainly,” I answered. The man came close and gently took hold of my
wrist. In a low voice, he looked
directly into my eyes and said, “I was in a prison camp many, many years ago.
It has been that long since I have seen a face such as yours – the expression.”
His words
rang in my ears and stunned me. I
attempted to smile, to wipe my angst from my face- this expression that I wore
for all the world to see. It was truly a wakeup call.
When I
went home, I told Michael the story, and he insisted I get away somehow. This gentle, old man was not the only one who
knew how frazzled I’d become. My sister and my friends had noticed as well. My
older son had recently said that I needed a break from it all. I knew it myself. I
was ‘ bad company ’ as I put it. Still, his idea of getting away was preposterous,
frivolous and, well, impossible.
With all the
pain meds Mike was taking, I knew that he ‘went away’ for short periods at a
time. There was no such relief for my busy mind.
And then,
it happened. I went to church on Sunday
and there in my bulletin was a women’s retreat. Three days. It was not in my
parish, and as far as I know had never been published there. The ladies of the group had
been going for 24 years and this year, there were some empty seats. The price
was exceptionally low, but still not affordable in my situation. Michael urged me
to find a way to go. It was to be held at a retreat house by the sea in Maine. My thoughts returned to one of the first things that I wrote on page one of this blog:
"And, I must confess that the ocean is the one spot where I can truly hear the quiet that is God - without effort."
I pondered it over and over, and that little old man from the store kept haunting my thoughts. Could I really continue this way?
I called the retreat house. I never told the Sister my story at all. I spoke to
her only briefly and she said that she could tell that I needed to get away. Was I really that bad? I was granted a
scholarship to go. I was amazed. Within a week, I was on a bus, heading to
Maine for three days with a bunch of people I had never met.
Michael
was watched out for by ‘the mother hens’ who I assigned to look after him, and he
was fine. For me, it was three days of heavenly peace. And even though Michael
was first and foremost in my mind, I did not feel I was in the midst of
battle.
On the last day, as the others gathered for morning prayer in the chapel, I was out on the beach at sunrise.
♪By name I have called you
By
name I have saved you
By
name you are mine
You
are precious to me
By
name I have called you
By
name I will send you
Forever
with you I will be
*Click to enlarge photo
The very definition of retreat
is a movement away from battle because the enemy is winning. The enemy had not
won yet.
Who was that little old man? Would I have sought out this retreat if he had never spoken to me ? I think not. I had no such intention. Was it a miracle of sorts ? Was he my guardian angel? I'm not sure I would go quite that far, but I do believe in this:
SQUEAKY WHEELS...
"People come into your life for a reason, a season, or a lifetime. When you figure out which one it is, you will know what to do for each person.When someone is in your life for a REASON . . . It is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are! They are there for the reason you need them to be.Then, without any wrong doing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end.Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand.What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered. And now it is time to move on.
When people come into your life for a SEASON . . .Because your turn has come to share, grow, or learn.They bring you an experience of peace, or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it! It is real! But, only for a season.
LIFETIME relationships teach you lifetime lessons; things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant."
~Author Unknown
================================
================================
The sound can be grating and most unpleasant, but it's important to remember that squeaky wheels do get the grease, and while it's not always the most popular thing well, somebody's gotta' do it as they say. Why not me ?!
So, I have spoken to the C.H.D and the new director at the Cancer House of hope and they are entertaining the idea of possibly starting some support groups directly across the street from D'amours chemo suites which would be fabulous and of benefit to SO many people ( even those who don't squeak and never know how these things come about ) Naturally, I would suggest that Baystate/ D'amours be fully involved in this so I am hopeful that there might be some sort of a triangular collaboration. While it's entirely possible that nothing at all will come from this, I doubt it. Sometimes, I feel that not enough people "squeak up" ! It's not just a whining sound. It can be a GOOD thing - and for the good of many.
Additionally, I am part of a coalition who'll be meeting with Congressman Neal this October to appeal for the passage of the Lymphedema Treatment Act. This would benefit tens of thousands of people so I certainly hope it will be successful.
So, these are some of the positive actions taking place at the moment.
They will be tangled with red tape, but I am still hopeful that both will come to fruition eventually. We shall see.
HEY! What about Michael?
Yes, I digressed. Well, he has good days and not so good days –
which is to be expected. I thought I’d snap a shot of him feeling some of the effects of chemo for the blog but it never happened.
ONE of the
components of his FOLFOX regimen is oxaliplatin.
Among other things, it makes you feel uncomfortably cold and you cannot tolerate cold food - everything has to be room temperature. I thought of taking a picture for the blog, but one look at Mike as I positioned my cell phone camera, and I thought again (LOL)
Among other things, it makes you feel uncomfortably cold and you cannot tolerate cold food - everything has to be room temperature. I thought of taking a picture for the blog, but one look at Mike as I positioned my cell phone camera, and I thought again (LOL)
One day, he
took a rest under 2 fur blankets with a
heated bag as he has complained he was freezing. I am not looking forward to Winter.
Brrrrr!
So, Mike has been wanting to clear out a little, and have a tag sale, try to raise
a bit of cash at the same time … and against my better judgment, I finally caved. What was I thinking ?! He planned for the weekend of the 27/28, and
later found out that was the weekend of the Pink Mass, which he would like to
go and perform our song at again this year.
So, this is how it goes – one day he is vomiting and intolerably cold
and the next, anyone in church would think he was just fine. (Go figure)
But, of course, he pays for it later.
Anyway, on
Saturday, the 20th, we saw they were having a tag sale
at the corner of our street so we went into a flurry of activity and got our ‘ stuff’ out. OMG! It is a lot of work to have a tag sale. It was exhausting! We will attempt it all again on Sunday, the 21st , and Mike can hope to get to the Pink Mass next weekend(27th) without incident - we hope.
Well , it rained on our parade Sunday ( 9/21) , and I sure hope Mike has learned what I tried so hard to tell him in 2009 :" It may 'seem' like you can do this, that or the other, but when you are on chemo, it takes an awful lot out of you. And so we went in and out with all of our ' stuff' Sunday, between the raindrops, to make just a few dollars, and we were both beat. I just hope he will feel well next Saturday for the Pink Mass - we shall see !
at the corner of our street so we went into a flurry of activity and got our ‘ stuff’ out. OMG! It is a lot of work to have a tag sale. It was exhausting! We will attempt it all again on Sunday, the 21st , and Mike can hope to get to the Pink Mass next weekend(27th) without incident - we hope.
Well , it rained on our parade Sunday ( 9/21) , and I sure hope Mike has learned what I tried so hard to tell him in 2009 :" It may 'seem' like you can do this, that or the other, but when you are on chemo, it takes an awful lot out of you. And so we went in and out with all of our ' stuff' Sunday, between the raindrops, to make just a few dollars, and we were both beat. I just hope he will feel well next Saturday for the Pink Mass - we shall see !
He has a CT
scan on Monday, the 22nd and it will be about a week
or so after that when we will get the results. The hardest part is always the waiting.
or so after that when we will get the results. The hardest part is always the waiting.
LOOKS LIKE WE'LL MAKE IT ....
This would be the 4th year Mike will be singing our song there , and he is feeling pretty good today. (SAT. 9/27/14) He's coming off of the chemo effects (though he will be right back at 'em this MON. the 29th) so today is what we call ' a good day'. To look at him, he seems fine, but for the limp caused by the tumor on his hip. He's loaded with pain meds and the steroids have kept his weight up. The only concern is if his right foot will fit in a 'normal ' shoe, but he had it elevated overnight so we are hopeful.
We are sure we will see some people we know at the Mass today. Other than that, it will be televised and shown tomorrow 9-28-2014 at 6 A.M.
*click to enlarge
♪Hope is Our
Light
~Composed by
Michael and Laurel Rancitelli
When faith is
frail and the sunlight pale,
Hope is our
light in the night;
and if angels
call and our spirits fall,
Hope is our
light in the night.
With caring hands and with broken hearts,
And with love that time can’t tame,
We’ll still walk along; we’ll still sing our song,
Hope is our light in the night.
Our unfinished
work, these uncertain times,
can make the
soul grow tired.
We are blessed
to try, with our eyes to the sky,
for hope is our
light in the night.
We’re young, we’re old, we’re rich, we’re poor,
We’re strong and sometimes weak;
and we are here, from far and near,
to search for the cure that we seek.
When the
battle’s done and the war is won,
and the clearing
skies turn bright,
and when
memories fade, of those darker days,
We’ll know hope
was our light in the night.
With caring hands and with broken hearts,
and with love that time won’t tame,
We’ll still walk along, we’ll still sing our song,
Hope is our light,
Hope was our light,
Hope is our light… in the night.
© Rancesongs, 2011
A benefit dinner follows the Mass, but we will not be able to attend. As long as Mike makes it to play, he will be happy.
And so, for about 3 1/2 minutes, Mike was "Mr. Rancitelli" again. He wore a dress shirt and tie and he played the piano , and he sang at the Mass. He saw a few of his students, who greeted him with welcoming hugs.We even met the new Bishop.
And then, we went home, and he changed his clothes, took off his shoes and elevated the right leg with the compression sock on it - and he was Michael with the cancer.
And so, for about 3 1/2 minutes, Mike was "Mr. Rancitelli" again. He wore a dress shirt and tie and he played the piano , and he sang at the Mass. He saw a few of his students, who greeted him with welcoming hugs.We even met the new Bishop.
And then, we went home, and he changed his clothes, took off his shoes and elevated the right leg with the compression sock on it - and he was Michael with the cancer.
No news is no news.
I thought this might be a good sign to get test results today. My youngest son turned 29 today. In any case, after
waiting for the CT results for a week, we were certainly anxious to hear the
news. Has the tumor shrunk at all? Has
it grown, God forbid? What’s going on?
First things
first- the Dr. said the CT scan was not compared to the last one taken over the
summer at MassGeneral so he couldn’t be 100% positive, but based on measurements alone, it looked as though nothing had
changed at all. I wonder if it was the expression on our faces that made him put
in a better light:” It’s stable.” Still,
I admit, this is not the news we were hoping for .
Yes, we knew
it was inoperable stage IV cancer, but that is precisely why so many hopes were hinged on the chemo. The best case
scenario was shrinkage and perhaps, enough shrinkage eventually to bring about
some pain relief and even stop the leg swelling and limp.
The doctor
is planning to get the MassGeneral scan and make a more accurate comparison,
and we will see him again in four weeks, but he was already mentioning the
possibility of maintenance chemo . Maintenance chemo? Is he giving up? The initial plan was calling for 6 months
of the folfox chemo regimen. Mike is at
the 3 month mark. The doctor said we
will discuss it further, but folfox is a very intense treatment with lots of
side effects. A maintenance chemo would
be less intense.
Still, Mike
and I knew of a few people who were on chemo for life. They periodically had to wear facial masks
because their blood counts would be too low to risk catching a cold, their
financial problems were overwhelming and their futures were not very bright.
Certainly
this is not where we want to end up. The
thing is, it is not where anyone wants to end up. I overhead the
gentleman in the next chair talking about the dialysis he had the other
day. Dialysis plus chemo ? Who’s
complaining?
=================================================================
SIXTY MINUTES
Well, I hate to say it, but it's been a rather grim week since this last round of chemo. The cumulative side effects are taking their toll, and it seems like Michael has all of them. He's cold, he's hot, he has a headache, mouth sores, increased pain, a closing throat (which is scarier than it sounds ) , his leg swelling is worse than usual and more weak and yadyadyadyda - oh, and food pretty much all tastes like metal. These are the times when it gets tough to stay optimistic - especially when those last CT scan results didn't reveal anything too promising. But, you just go from one moment to the next and hope that this too shall pass.
I have to say, I wish I hadn't just watched "60 Minutes" though. Had I known the topic, I certainly wouldn't have turned it on. It seems the cost of cancer drugs is the Number One cause of personal bankruptcy in the United States. Did you know that Medicare, unlike some insurance companies, has absolutely NO negotiating power for prescriptions?
None - period. If a
cancer drug costs $11,000.00 a month, Medicare pays exactly $11,000.00 a
month - and you pay 20% of that - another period ! OKay, maybe an
exclamation point! AND, did you know that doctors get a commission on
these drugs? That certainly seems like a conflict of interest.
Why do I tell you all of this? Well, it may not help us, but almost anyone reading this will certainly know somebody or have a loved one who develops cancer someday. Maybe if enough people are aware of what's going on, something can be done. I don't know. I guess I still think knowledge is power. (And yet I also believe that a little bit of knowledge is a dangerous thing!) I dunno' - seems like one more thing to worry about with the idea of maintenance chemo, but what can you do ? Nothing.
Why do I tell you all of this? Well, it may not help us, but almost anyone reading this will certainly know somebody or have a loved one who develops cancer someday. Maybe if enough people are aware of what's going on, something can be done. I don't know. I guess I still think knowledge is power. (And yet I also believe that a little bit of knowledge is a dangerous thing!) I dunno' - seems like one more thing to worry about with the idea of maintenance chemo, but what can you do ? Nothing.
Speaking of chemo ....
This next segment gets a little graphic so some might prefer to skip, but if you were ever at all curious about chemotherapy, here it is -
CHEMO-
THE GOOD, THE BAD, and THE UGLY.
Not only are there different types of chemo but some medicines
are stronger than others, all have different side effects and it really depends
on which “ round’ you are on as well since most chemotherapy has a cumulative effect. I decided to write
about chemo when someone asked me last week how Mike was doing, and I mentioned
that chemo side effects were really starting to hit hard. They asked me if he
was losing his hair. Of course, anyone who knows Michael knows that he lost his
hair long ago! Having said that, hair loss is a serious side effect of many chemotherapy drugs. I hate to sound sexist, but I believe this is particularly hard for woman and can be devastating to some. So, it is not to be taken lightly. In fact, if you have untreated hair, you may even want to consider donating your hair to someone who has experienced such a loss - to Locks of Love.
It just doesn’t happen to be an issue for Michael.
Most people associate chemo with nausea. In 2009, when Mike
was on 5 F-U, and later, xeloda, he
never took his anti-nausea pills.
Now he does on occasion, and after his last round of chemo the nurse
asked him about nausea and we both responded that he was fine. Must have jinxed him. The second we got him, he ran to the bathroom
and threw up.
When he was on 5 F-U , he lived on Pepto-Bismol and his hands,
feet, and lips were dark and dry. He was exhausted after working and he lost
about 35 pounds since food was not at all appetizing.
It’s hard to watch. It’s ugly.
When I suggest perhaps he ask the doctor about that
maintenance chemo, Mike replies :” But I want to win.” That’s the ‘good’ in
chemo. There’s a chance you will “win”. The drugs just might work to produce cell atopsis.
But you don’t know.
=================================
OCTOBER 17, 2014
The wheel gets louder !
So, it was D-day for our meeting with Congressman Neal to try to get him on board for the passage of The Lymphedema Treatment Act.
We had a small coalition:
Josh Levin of Lymphedivas.com, Jerry Myers, the new director of the Cancer House of Hope in West Springfield, ( Still waiting for our Spfld. space :>) Josh's colleague, another lady, Kathy Fleming my lymphedema therapist ( arguably the best one in the country!) and Michael and me.
We sat down with Congressman Neal and explained the importance of the legislation so that people who developed lymphedema ( abbreviated as LE) could get insurance coverage for their compression garments. He listened intently as Josh explained the role of compression , and he looked at before and after photos that Kathy had taken on her cell phone demonstrating the impact of manual lymphatic drainage aka MLD.
I told my story of how I went to MERCY for therapy and was not helped. I switched to Baystate which has a great P.T. Department, but unfortunately no one there was actually trained in M.L.D. which is very much a hands-on treatment. The therapist I saw numerous times (and who my insurance paid) never once touched me. There are no doctors who treat this serious and permanent condition.
In frustration, I finally turned to the internet and found Kathy right here. She was a God-send. I went to her home in Northampton and she not only performed MLD , but taught me to do it myself. I had to pay out of pocket and was fortunate that she charged a very reasonable fee.
Like diabetes, LE can (sometimes) be managed. Other times, it can be unpredictable. In any case, everyone with LE wants to avoid the deadly infection cellulitis which can happen from a simple mosquito bite !
Congressman Neal assured us as we left that he was on board and Kathy " assured " Michael that he (too) had LE. It was pretty apparent to me with all the swelling in his leg.
But, we have to fight one battle at a time, I think.
In any case, I have to say that much of the credit for this meeting goes to Josh Levin of lymphedivas. He is the ' real deal" . You can read the family's story right here.
If you ever know of anybody who has to get even one lymph node removed, do them a favor and bookmark this site. I wish I had known about it when I had my "simple lumpectomy". Michael was at high risk with 24 nodes removed.
Thank you Congressman Neal for helping to get this bill passed so that people who need ( as they hate) compression garments are able to get them covered.
Who Moved My Cheese?
I have to keep reminding myself to re-read this little gem of a book that can be finished within an hour and is truly inspiring. (Author- Spencer Johnson. M.D.) It's really not meant for illness, but life changes and has been used in many businesses. Anyway, cancer is the biggest life change that I know of, so it does apply. It's a great little bestseller that I would recommend to anyone going through a career move, a divorce, a significant change of any kind.
Have I mentioned that we sold (most of ) Michael's ties on craigslist? It seems I did , but I forget. He hand picked some that were gifts from students and selected a few more - just in case, and I listed the entire lot online. We just about gave them away as I really thought they would be a hard sell, but some woman came and was delighted to buy them for her husband . Go figure !Soooooo, he is officially not "Mr. Rancitelli" anymore - but he is still Michael.
I was coming back from the grocery store on the car radio today, and I heard this song ( link to the left) that reminded me so much of him, he could have written it.
Cabbage day
Most people don’t even know what “ Cabbage Day” is , but I
do! Michael told me years ago that is
was his birthday. He was born on October 30, 1953 – Cabbage Day. I sure do hope
that anyone reading this blog has been aware that there are plenty of links and, as I am a bit weary at the moment, I
am going to give you a Cabbage Day link and just say, it’s ‘naughty night’
before Halloween.
Michael turned 61. “
Sixty-one and no more fun” he was saying ... pretty blue and not feeling well at all that Thursday. The Drs. had just given him a Doppler ultrasound the previous Monday and
discovered a massive blood clot in that swollen right leg that’s been bothering
him for a year. In any case, it was very concerning and not
the happiest birthday ever , to say the
least. The doctors put him on
lovenox shots which I administered once
a day.
I had ordered him a family photograph, blown up on canvas
and planned to present it to him on the weekend when the family was coming over to rake the leaves and
surprise him. Meanwhile, my daughter in
law was having her baby shower on NOV. 1, Saturday so we would all wait until
Sunday to celebrate Michael's birthday. It was a very busy time.
But as
luck would have it, our plans would going to be disrupted because Michael
became very short of breath on Friday, Halloween.
Now I have a very odd confession to make, but I have
always been a bit jealous of Michael’s lungs !
He could hold a note longer than I could exhale and so, when
he was short of breath, I knew it was not to be taken lightly.
I took him to the E.R with a long list of meds. and symptoms
and my fears were confirmed. Some of the
clot had broken off and gone to the lung ... pulmonary embolism .
Apparently, blood clots are common in cancer which is something
I actually never knew. Still, I had Mike
wearing an anti embolism stocking for least 4 months prior to this just by
instinct, for all that swelling. Didn’t
help.
So I put a sign on my door for the first time in 35
years “
NO CANDY - sorry”
and left my house alone on Halloween. It was a spooky feeling. In the meantime, I had my daughter in law's baby shower to get to the next day, and my sister came over and helped me prepare a bunch of ziti and meatballs and salad.
Mike called me from the hospital at 6:30 AM and said they were about to do surgery to put a net in through his carotid artery and try to prevent more of the blood clot from going to the lungs. I rushed right over and watched the clock tick the morning away.
I finally realized he was not having his surgery in the morning, and I left for my daughter in laws baby shower at 11:00.
I do know how odd that seemed at the time, and even more so as I write it, but I really didn't want the memory of not making it to her shower. I learned a long time ago that it's rarely the things that you do in life that you most regret, but more often, the things that you don't do. Besides, Michael was pushing me to go, and he can get pretty stubborn about things.
I really don't know if I acted strange while I was there because all I could think of was him. I felt like I was in two places - or maybe two pieces ? I don't know.
In the end, his 6:30 AM surgery happened after the baby shower around 2:30 or so, and he made it through just fine.
While in the hospital, the doctors switched him from the lovenox shots that had just started him on at home to a heparin drip.
He was often confused ( pain meds or hypoxia or ?) and when they asked him if he wanted a D.N.R. he thought he might like one. When I explained it was a " Do not resuscitate' order, he looked shocked and said NO! Still, he was an extraordinarily convincing patient and the doctors did not believe me when I told them he was in worse shape than he appeared to be. He seemed alert and aware to them. The truth was , he was compliant and out of it, more than anything else.
Mike also had atelectasis which doctors felt probably contributed to his shortness of breath. The (first) 5 days spent at Baystate were not at all pleasant, and at one point, Michael's white blood count went down to 1.6 and he had to wear a mask to avoid germs.
Before they sent him home ( after 5 days which seemed like 5 weeks somehow) I insisted they personally walk him down the hall ( one day I did and he slept for 8 hours after that walk and was dizzy and out of breath) . They released him on November 4th. Just before he left , he felt nauseous. They gave us a vomit bag for the car. Ugh.
Once we got home , Michael was happy and the noticed the canvas picture of the family the minute we walked into the door. He was very weak and I started to feel like his condition was deteriorating. His next lovenox shot was due at 8 P.M. I administered the injection and hoped that he would feel better.
And the band plays on ....
Every day when I ran back and and forth to let the dogs out, or change the lights, I would check the mail.
Have I mentioned that the cards from the kids at St. Michael's Academy are still pouring in ? I don't think I have!
I recognize the envelopes now. I think about all of those students, and their relationship over the years with 'Mr. Rancitelli'.
I also think of all those teachers who continue to think of Mike enough to have the kids get their crayons and markers out and write to him. It's one of the many blessings that have come our way. In this whole saga that I have called a nightmare , there have been some angels. It's very touching.
FROM BAD TO WORSE
In the meantime, Michael didn't feel better. Instead, I watched as he grew more and more weak and quite nauseous feeling. I thought about how nauseous he was when the hospital discharged him, shortly after they had taken him off the heparin and transitioned him back to the lovenox. I thought about that lovenox and how he had taken it for three days and yet the clot still went to his lung. I wasn't 100% sure what was going on, but I knew that if he didn't feel better by morning, there was no way I would be touching him with lovenox.
It was a rough night, and when Michael woke he said he felt " too weak to turn over'. There was no way that I could assist him out of bed , and I wanted to call 911 , but he would not hear of it. I don't remember how we made it down those front steps without falling, but I do recall being in my Mazda with a list of symptoms and my suspicions which I now felt were confirmed - lovenox allergy.
We arrived at the E.R. with that list in hand, and a physician's assistant quickly poo-poo'ed it. No matter. Once we saw the doctor I would convince him/her of what I was so sure of . Except it didn't go that way. It didn't go that way at all.
I should stop right here and say that Mike's nine day stay in the hospital was a bit of a horror , and I actually have the photos to prove it though I have no intention of posting any of them. I cannot put myself through the angst of recounting all of the mistakes and mishaps that occurred nor do I want to go into the most negative place ever. Suffice it to say, BE CAREFUL. I would say ' be your own advocate' or HAVE an advocate, but I suspect many medical professionals do not appreciate that. At least that was our personal experience.
After talking to the P.A., the doctor decided the way to see if I was correct about the lovenox making him ill was to give Michael MORE lovenox, only that didn't make sense to me, and I wasn't going to stand by and watch that. Besides, I recalled a time many moons ago when my mother was allergic to quinidine, and she took it and it made her deathly ill. Drs. were pretty ominous about what might have happened if she had not stopped it. No thank you; we were not here for more lovenox.
I sensed the doctor was not happy with me at all.
She decided to give Mike a CT scan of the brain.
I understood the CT scan of the abdomen they later gave, but the CT of the brain did not make sense to me. He was not even complaining of a headache. In any case, both CTs were fine, as I suspected they would be , but nobody gave me the results or returned to his pod for 5 hours. I finally went out and asked.
After a while, Michael was getting stomach cramps and finally was so exhausted that he dozed off. I thought I might go grab a coffee and make some phone calls to the family. I had not yet met his nurse. As I left the pod, I told the dr. I would be stepping out for about 20 minutes if she wanted him watched. I actually said, and I will quote now:" It seems like every time I leave , somethings happens to him." ( I spared you the prior 5 days) She shot me a look , and I took off onto the elevators.
When I returned, Mike was not in the pod, and I presumed he was off for another test. Only he wasn't.
The CT contrast made him sick as a dog , and since he was left unattended and without a call bell, he raced to the bathroom on his own somehow. This was the man who could not turn over in bed.
I was not too happy.
Since he was now ill, they decided to test for CDIFF, only I knew and 2 nurses and later a doctor, that it was the CT contrast that made him so sick.
They told me I should put on a rubber robe because of his CDIFF, but I explained these were not symptoms that he arrived with and tried to show them my notes, but nobody was much interested in them. He was admitted and was very ill all night.
I asked for I.V.s for dehydration ( for him, not for me/LOL) and they were ordered.
At least I understood why they were testing him for CDIFF, but once the first test turned out to be negative , they tested again. Nope. He never had that at all.
On to the heparin, please !
So I asked them to put Mike back on an anticoagulant, which they did and I went home ( eventually) to research what the best anti coagulant for him might be. I knew a lot about coumadin aka warfarin from my time at the Senior Center, but I explored further. I finally came across a drug called Dalteparin aka Fragmin . I liked the short half life in case of emergencies or surgeries, unlike coumadin and I even found a PubMed page that said it was ' good in cancer patients". I thought I would ask about it at least.
One doctor that I spoke with said : "Why not ?" but another said that it wasn't up to me.
I looked down at Mike's wrist and he was wearing the LOVENOX ALLERGY bracelet. I had also asked them to put on a bed alarm before I would go home so that he wouldn't fall if he had to get up in the night.
Drs went back and forth over what to do with him and finally they called his oncologist about the dalteparin who agreed it would be a good choice. He ordered it , and I picked it up.
Later, I was told it cost $4,000.00 for a 30 day supply.
Who knew ?
It's Raining, it's Pouring ...
Mike called me from the hospital at 6:30 AM and said they were about to do surgery to put a net in through his carotid artery and try to prevent more of the blood clot from going to the lungs. I rushed right over and watched the clock tick the morning away.
I finally realized he was not having his surgery in the morning, and I left for my daughter in laws baby shower at 11:00.
I do know how odd that seemed at the time, and even more so as I write it, but I really didn't want the memory of not making it to her shower. I learned a long time ago that it's rarely the things that you do in life that you most regret, but more often, the things that you don't do. Besides, Michael was pushing me to go, and he can get pretty stubborn about things.
I really don't know if I acted strange while I was there because all I could think of was him. I felt like I was in two places - or maybe two pieces ? I don't know.
In the end, his 6:30 AM surgery happened after the baby shower around 2:30 or so, and he made it through just fine.
While in the hospital, the doctors switched him from the lovenox shots that had just started him on at home to a heparin drip.
He was often confused ( pain meds or hypoxia or ?) and when they asked him if he wanted a D.N.R. he thought he might like one. When I explained it was a " Do not resuscitate' order, he looked shocked and said NO! Still, he was an extraordinarily convincing patient and the doctors did not believe me when I told them he was in worse shape than he appeared to be. He seemed alert and aware to them. The truth was , he was compliant and out of it, more than anything else.
Mike also had atelectasis which doctors felt probably contributed to his shortness of breath. The (first) 5 days spent at Baystate were not at all pleasant, and at one point, Michael's white blood count went down to 1.6 and he had to wear a mask to avoid germs.
Before they sent him home ( after 5 days which seemed like 5 weeks somehow) I insisted they personally walk him down the hall ( one day I did and he slept for 8 hours after that walk and was dizzy and out of breath) . They released him on November 4th. Just before he left , he felt nauseous. They gave us a vomit bag for the car. Ugh.
Once we got home , Michael was happy and the noticed the canvas picture of the family the minute we walked into the door. He was very weak and I started to feel like his condition was deteriorating. His next lovenox shot was due at 8 P.M. I administered the injection and hoped that he would feel better.
And the band plays on ....
Every day when I ran back and and forth to let the dogs out, or change the lights, I would check the mail.
Have I mentioned that the cards from the kids at St. Michael's Academy are still pouring in ? I don't think I have!
I recognize the envelopes now. I think about all of those students, and their relationship over the years with 'Mr. Rancitelli'.
I also think of all those teachers who continue to think of Mike enough to have the kids get their crayons and markers out and write to him. It's one of the many blessings that have come our way. In this whole saga that I have called a nightmare , there have been some angels. It's very touching.
FROM BAD TO WORSE
In the meantime, Michael didn't feel better. Instead, I watched as he grew more and more weak and quite nauseous feeling. I thought about how nauseous he was when the hospital discharged him, shortly after they had taken him off the heparin and transitioned him back to the lovenox. I thought about that lovenox and how he had taken it for three days and yet the clot still went to his lung. I wasn't 100% sure what was going on, but I knew that if he didn't feel better by morning, there was no way I would be touching him with lovenox.
It was a rough night, and when Michael woke he said he felt " too weak to turn over'. There was no way that I could assist him out of bed , and I wanted to call 911 , but he would not hear of it. I don't remember how we made it down those front steps without falling, but I do recall being in my Mazda with a list of symptoms and my suspicions which I now felt were confirmed - lovenox allergy.
We arrived at the E.R. with that list in hand, and a physician's assistant quickly poo-poo'ed it. No matter. Once we saw the doctor I would convince him/her of what I was so sure of . Except it didn't go that way. It didn't go that way at all.
I should stop right here and say that Mike's nine day stay in the hospital was a bit of a horror , and I actually have the photos to prove it though I have no intention of posting any of them. I cannot put myself through the angst of recounting all of the mistakes and mishaps that occurred nor do I want to go into the most negative place ever. Suffice it to say, BE CAREFUL. I would say ' be your own advocate' or HAVE an advocate, but I suspect many medical professionals do not appreciate that. At least that was our personal experience.
After talking to the P.A., the doctor decided the way to see if I was correct about the lovenox making him ill was to give Michael MORE lovenox, only that didn't make sense to me, and I wasn't going to stand by and watch that. Besides, I recalled a time many moons ago when my mother was allergic to quinidine, and she took it and it made her deathly ill. Drs. were pretty ominous about what might have happened if she had not stopped it. No thank you; we were not here for more lovenox.
I sensed the doctor was not happy with me at all.
She decided to give Mike a CT scan of the brain.
I understood the CT scan of the abdomen they later gave, but the CT of the brain did not make sense to me. He was not even complaining of a headache. In any case, both CTs were fine, as I suspected they would be , but nobody gave me the results or returned to his pod for 5 hours. I finally went out and asked.
After a while, Michael was getting stomach cramps and finally was so exhausted that he dozed off. I thought I might go grab a coffee and make some phone calls to the family. I had not yet met his nurse. As I left the pod, I told the dr. I would be stepping out for about 20 minutes if she wanted him watched. I actually said, and I will quote now:" It seems like every time I leave , somethings happens to him." ( I spared you the prior 5 days) She shot me a look , and I took off onto the elevators.
When I returned, Mike was not in the pod, and I presumed he was off for another test. Only he wasn't.
The CT contrast made him sick as a dog , and since he was left unattended and without a call bell, he raced to the bathroom on his own somehow. This was the man who could not turn over in bed.
I was not too happy.
Since he was now ill, they decided to test for CDIFF, only I knew and 2 nurses and later a doctor, that it was the CT contrast that made him so sick.
They told me I should put on a rubber robe because of his CDIFF, but I explained these were not symptoms that he arrived with and tried to show them my notes, but nobody was much interested in them. He was admitted and was very ill all night.
I asked for I.V.s for dehydration ( for him, not for me/LOL) and they were ordered.
At least I understood why they were testing him for CDIFF, but once the first test turned out to be negative , they tested again. Nope. He never had that at all.
On to the heparin, please !
So I asked them to put Mike back on an anticoagulant, which they did and I went home ( eventually) to research what the best anti coagulant for him might be. I knew a lot about coumadin aka warfarin from my time at the Senior Center, but I explored further. I finally came across a drug called Dalteparin aka Fragmin . I liked the short half life in case of emergencies or surgeries, unlike coumadin and I even found a PubMed page that said it was ' good in cancer patients". I thought I would ask about it at least.
One doctor that I spoke with said : "Why not ?" but another said that it wasn't up to me.
I looked down at Mike's wrist and he was wearing the LOVENOX ALLERGY bracelet. I had also asked them to put on a bed alarm before I would go home so that he wouldn't fall if he had to get up in the night.
Drs went back and forth over what to do with him and finally they called his oncologist about the dalteparin who agreed it would be a good choice. He ordered it , and I picked it up.
Later, I was told it cost $4,000.00 for a 30 day supply.
Who knew ?
It's Raining, it's Pouring ...
After nine days of what I call " my pony ride" , running back and forth, I am on my way to pick Mike up from the hospital
when my oldest son calls. He informs me that my daughter in law
was admitted to the hospital the day before but they didn’t want to upset me at
the time. What?!
Pre-eclampsia.
They are going to keep her until they can stabilize her and
at some point in the future, give a C-section. The baby is not due until
January, 2015.
I think of poor Ginnette and then of that little unborn
baby, estimated to be 3 lb. and then, my precious 4 year old granddaughter who
will miss her mommy terribly.
I stop in to visit Ginnette just before I head to
Springfield floor 6 to get Mike from discharge.
I am worried about all of them
Mike, Christopher, Ginnette, Gianna and the newbie yet to
come - Caleb Michael.
JUST MUSING
So he skipped a week of chemo and is scheduled again for NOV. 17th. At that time, I am going to ask his oncologist about the abdominal CT scan taken in the ER and IF it showed the tumor. Was there any change at all? IF NOT, will he be able to get another scan soon or will they say he can't get scanned again just yet because of this latest one? I don't know.
Everything seems very complicated at the moment, and Mike is not happy at all.
Who would be ?
We had P.T. come to the house from VNA (11-12-14) as a 'leftover service' from his hospital stay. He took a look at Mike's leg which has been swollen for app. 11 months now. Once he was finally DX with the cancer (was it June?!) , doctors presumed that was the cause of the swelling. Still, I brought him to the E.R. at Wing once and we mentioned the leg to several doctors , but it was chalked up to inflammation. I was beginning to wonder if maybe he could get this leg function back at some point. It doesn't take a rocket scientists to figure out that at least some part of all of this has been this massive blood clot.
The P.T. asked about the size of the clot, and we told him it was " foot to groin". He said they generally don't run that large, and he wondered how big it 'really' was. I asked if he knew how to read a doppler ultrasound. Turns out his wife did that for a living! I handed him the results. Lo and behold! Yep - he confirmed it ran foot to groin. HUGE .
In any case, for that reason alone, P.T. would be dangerous for Mike right now, possibly further dislodging this nasty clot. Having said that, he did think there might be some hope to regain strength in the leg in the future. Doctors had told Mike it was permanent nerve damage from the tumor.
I was beginning to wonder about that oxaliplatin now. It was a part of his FOLFOX regimen ( remember ?) It causes neuropathy. Maybe it was time to discontinue the oxaliplatin. I dunno'. It also thins the blood and with Mike taking injectable anticoagulants his risk of bleeding over the slightest little thing would be high.
I did some research and found reputable sites that said oxaliplatin should not be given more than eight times. Mike has had 8 rounds. Now, I'm thinking. Maybe , just maybe, if we eliminated the oxaliplatin and went to 5 FU with avastin etc ...some of this nerve damage just might not be permanent. Surely, some must be due to the oxaliplatin just as some swelling was due to the clot.
Then, IF the clot ever resolves ( he has at least 6 months on an anti coagulant) there just might be hope, but it will be a long road to keep the eyes on the prize.
Nope, I'm not a doctor. Nope. It's just a question to ASK the oncologist on the next appointment ( NOV. 17th) We'll see what he says, but I'm thinking...
Mike has such awful mouth sores right now, that the pain takes him over at times. Despite antibiotics and the " Magic Mouthwash" , even his morphine cannot take the pain away completely. He cannot see a dentist on chemo, or on this heavy duty blood thinner, but I think he may also have an abcessed tooth. The blood thinners can make simple things pretty risky.
In fact the more I look, the more I do not want Mike on this oxaliplatin anymore. It looks very risky when someone is on blood thinners.
In 2009, doctors were going to add oxaliplatin to Mike's cocktail, but we said no because of his guitar playing (neuropathy). The doctors at MassGeneral Ok'd that. I think we have to stop this now. It's getting too tricky now. One thing I know for certain - I wouldn't take it. Right - no matter what.
I Believe in AngelsJUST MUSING
So he skipped a week of chemo and is scheduled again for NOV. 17th. At that time, I am going to ask his oncologist about the abdominal CT scan taken in the ER and IF it showed the tumor. Was there any change at all? IF NOT, will he be able to get another scan soon or will they say he can't get scanned again just yet because of this latest one? I don't know.
Everything seems very complicated at the moment, and Mike is not happy at all.
Who would be ?
We had P.T. come to the house from VNA (11-12-14) as a 'leftover service' from his hospital stay. He took a look at Mike's leg which has been swollen for app. 11 months now. Once he was finally DX with the cancer (was it June?!) , doctors presumed that was the cause of the swelling. Still, I brought him to the E.R. at Wing once and we mentioned the leg to several doctors , but it was chalked up to inflammation. I was beginning to wonder if maybe he could get this leg function back at some point. It doesn't take a rocket scientists to figure out that at least some part of all of this has been this massive blood clot.
The P.T. asked about the size of the clot, and we told him it was " foot to groin". He said they generally don't run that large, and he wondered how big it 'really' was. I asked if he knew how to read a doppler ultrasound. Turns out his wife did that for a living! I handed him the results. Lo and behold! Yep - he confirmed it ran foot to groin. HUGE .
In any case, for that reason alone, P.T. would be dangerous for Mike right now, possibly further dislodging this nasty clot. Having said that, he did think there might be some hope to regain strength in the leg in the future. Doctors had told Mike it was permanent nerve damage from the tumor.
I was beginning to wonder about that oxaliplatin now. It was a part of his FOLFOX regimen ( remember ?) It causes neuropathy. Maybe it was time to discontinue the oxaliplatin. I dunno'. It also thins the blood and with Mike taking injectable anticoagulants his risk of bleeding over the slightest little thing would be high.
I did some research and found reputable sites that said oxaliplatin should not be given more than eight times. Mike has had 8 rounds. Now, I'm thinking. Maybe , just maybe, if we eliminated the oxaliplatin and went to 5 FU with avastin etc ...some of this nerve damage just might not be permanent. Surely, some must be due to the oxaliplatin just as some swelling was due to the clot.
Then, IF the clot ever resolves ( he has at least 6 months on an anti coagulant) there just might be hope, but it will be a long road to keep the eyes on the prize.
Nope, I'm not a doctor. Nope. It's just a question to ASK the oncologist on the next appointment ( NOV. 17th) We'll see what he says, but I'm thinking...
Mike has such awful mouth sores right now, that the pain takes him over at times. Despite antibiotics and the " Magic Mouthwash" , even his morphine cannot take the pain away completely. He cannot see a dentist on chemo, or on this heavy duty blood thinner, but I think he may also have an abcessed tooth. The blood thinners can make simple things pretty risky.
In fact the more I look, the more I do not want Mike on this oxaliplatin anymore. It looks very risky when someone is on blood thinners.
In 2009, doctors were going to add oxaliplatin to Mike's cocktail, but we said no because of his guitar playing (neuropathy). The doctors at MassGeneral Ok'd that. I think we have to stop this now. It's getting too tricky now. One thing I know for certain - I wouldn't take it. Right - no matter what.
So, when I brought Mike to the hospital it was Halloween, with a familiar nip in the air and brilliant blushing leaves everywhere ( including my oversized yard!). When I returned, everything seemed surreal. The nip has become a cold that would kill the plants I had out on the porch on Halloween and the stores are loaded with Christmas decorations. Where did the time go ? Life marches on.
I asked the friendly librarian across the street if she knew someone who could help with raking leaves, at a reasonable price. She gave me the name and number of a very remarkable man. He had stopped one day in September, while riding his bike and introduced himself to Mike, who was in the yard with the dogs. Michael thought Eddie was a man in his thirties, but it turned out he was in his 50's . Apparently, bike riding is a good idea !
In any case, I called him up and asked how much he would charge to do the yard. He laughed and said he wouldn't charge at all. I was beginning to wonder if this man had really seen my yard ! We went back and forth for a while and never settled on a price, but he came and started the job. He raked a good twenty bags of leaves , not expecting anything. Have I mentioned - This man does not know us ?! Where do people like this come from ?
Yes, of course, I forced money on him. Who wouldn't ? But, I will never forget his intent and sentiment. He's looking for a job. Does anyone out there know of work for a good man with a Masters in Education/major in Math ? I can tell he has a lot to offer.
Angels all around ...
So while Mike was in the hospital and my daughter in law was admitted as he was being discharged, I missed a few weeks of my C.C.D. classes and Mass. Having said that, I had already been approached by someone at the church who had known the family for years, offering to put on a fundraiser. Mike wasn't really comfortable with the idea , especially since we had one in 2009, but this gentleman persisted and we knew we really needed a hand up.
I was taken aback when I looked in the bulletin and saw :
" RANCITELLI RALLY"
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One Less Egg to Fry
Next ? Mike asked about the blood clot and was a little discouraged to hear he would most likely be on an anticoagulant forever. No matter. He will get used to that. This is all about adjusting. Checkmark.
There were some other questions related to prescriptions that the doctor answered - check.
We asked about the pelvic CT scan taken in the hospital. Could the dr. see that on the computer? And - Was there any shrinkage at all? Yes, he could see it. No - None. So, is the glass half empty or half full ?
You decide. Eight rounds of chemo and no change. The cancer is deemed inactive and stable. It might have been that way WITHOUT the chemo. Who knows ? God alone. No sense in speculating. We are done. No more chemo please. Drumroll? Doctor agrees. Checkmark .
Mike is concerned because the chemo was to be given directly after this appointment. Is it too late to cancel for today? The Dr. chuckles. It won't matter at all. I chime in : " Just one less egg to fry, right ? " "Right", he replies. Mike will need lots of follow-up, possibly more chemo later on or else maintenance chemo, but for now, the doctor agrees that the side effects of chemo are not worth the benefit.
Is this good news or bad? Only God knows, but Mike is relieved - and so am I .
THANKSGIVING
Through the generosity of the church, we looked forward to a wonderful Thanksgiving meal together. Ginnette had been released from the hospital, essentially to bedrest, and the whole family would gather, as we did every year, at our house. The day before, Michael had been complaining of a new pain. What now ? This was in the groin area , and I thought maybe he was over doing it. He wanted to help cook the dinner, since my weary knees were getting tired of standing, but we went back and forth over who was in worse shape
Only after dinner, Mike decided he would do the clean up. He did need to move around some with that clot in his leg. Much later, I found out that groin pain had intensified to the point where he was buckled over in the kitchen - and I was none the wiser.
So, we went to bed that night full of turkey, happy memories, and gratitude - and we woke with a start at 2 A.M. to the doorbell.
GUESS WHO'S COMING?
I hear Michael at the door saying, " Is she alright?" Oh no, not another stranger in my house. (This would not be the first time!) I come rushing out of the bedroom to see what the scam is, only it's my son Christopher and his daughter. Ginnette is back in the hospital. We take Gianna and sandwich her between us because she has been woken from a sound sleep and is shivering. Michael is snoring in no time , and Gianna lifts her arm over her head and has one fist in my eye. I'm pretty sure I got about two hours sleep though!
Finally, Chris returns around 6 A.M. with the news. Mother and baby are fine. Little Caleb is less than half the size his father was at birth. Chris was 10 lbs. 4 oz. Caleb is 4.2 and 17" long .
Gianna is a big sister.
So we keep Gianna the next day, and I see Michael is really not feeling that well. His pain has not subsided, but I was not aware of how it was intensifying either.
By Sunday morning, he is doubled over after taking 3 steps from the bed. I rush him to the E.R. , and they check the clot first. The girl doing the ultrasound mentions that she *thinks* she might see a hernia which muddies the waters. I am concerned the Greenfield filter may have been dislodged as they sometimes do. In any case, once the Dr. hears that 'the ultrasound girl' sees a hernia, he is pretty convinced that is it , and we are sent home , with the same symptoms and the same pain, and I am totally sure we are not done here.
Back in the saddle again
We see the same DR. at the E.R. and he orders a CT scan. It's not showing much. Michael lays on a stretcher for 24 hrs,. with no food and waits for a room. We are told that 29 other people are waiting as well. He is finally admitted to a room Tuesday morning, and we are none the wiser than when we started out.
So, here I am (see photo)
with both my daughter in law and my husband in the same place
again! Which way do I go ?
Ginnette is fine and has happy things to think about. I head off down the hall to the right - to Springfield elevators , Oncology 3.
An Enigma
There's nothing much more scary than when doctors have no idea what's wrong with you, but there is something VERY wrong with you.
The CT scan showed no appreciable hernia - just some weakness in the abdominal wall. The surgeon explains this is most likely from chemo!
The DR. said the filter was where it belonged.
They cannot figure out what is causing such agonizing pain.
If Michael is laying down he looks perfectly fine. We lay there together watching T.V. and at the change of shifts, they are not sure who the patient is. He appears totally content. I am sure they would jot down: "resting comfortably". If he takes just 4 steps to the bathroom, he is doubled over in terrible pain and each additional step makes matters worse. As he says , "I can't walk - period. I can no longer walk!" It's scary.
They send in a surgeon who is very kind and seems to be quite good. He says he cannot explain this situation at all. Finally, he tells Mike to call him the next day (WED) if he just wants to talk.
WEDNESDAY DEC. 3rd
So of course, I ask Michael to call the surgeon in. Everyone has seen him " resting comfortably". I want the surgeon to walk a few steps down the hall with Michael. He sees it. Doubled over agonizing pain.
He is not an oncologist. He is not qualified to diagnose this , he explains, but he says the most he can tell us is that if it were HIM, he would be thinking the cancer is advancing , and he would ask for a pet scan.
I don't know.
Michael doesn't know.
The doctor really doesn't know.
Only God knows.
Ginnette is fine and has happy things to think about. I head off down the hall to the right - to Springfield elevators , Oncology 3.
An Enigma
There's nothing much more scary than when doctors have no idea what's wrong with you, but there is something VERY wrong with you.
The CT scan showed no appreciable hernia - just some weakness in the abdominal wall. The surgeon explains this is most likely from chemo!
The DR. said the filter was where it belonged.
They cannot figure out what is causing such agonizing pain.
If Michael is laying down he looks perfectly fine. We lay there together watching T.V. and at the change of shifts, they are not sure who the patient is. He appears totally content. I am sure they would jot down: "resting comfortably". If he takes just 4 steps to the bathroom, he is doubled over in terrible pain and each additional step makes matters worse. As he says , "I can't walk - period. I can no longer walk!" It's scary.
They send in a surgeon who is very kind and seems to be quite good. He says he cannot explain this situation at all. Finally, he tells Mike to call him the next day (WED) if he just wants to talk.
WEDNESDAY DEC. 3rd
So of course, I ask Michael to call the surgeon in. Everyone has seen him " resting comfortably". I want the surgeon to walk a few steps down the hall with Michael. He sees it. Doubled over agonizing pain.
He is not an oncologist. He is not qualified to diagnose this , he explains, but he says the most he can tell us is that if it were HIM, he would be thinking the cancer is advancing , and he would ask for a pet scan.
I don't know.
Michael doesn't know.
The doctor really doesn't know.
Only God knows.
She shows us a song on her cell phone, and I am so moved by it. I decide I will email it to myself to post on the blog. It's very touching. These are little things, but I see people all over with small kindnesses or just sharing things like this, and I have to believe it is the voice of God.
The song is Broken Alleluia. (clickable link)
Can we get a test , please ?!
Finally, on Thursday (DEC. 4) the doctors decide to give him a bone scan. I don't think so. Who has heard of going in with sharp abdominal pain and getting a bone scan? You need to be careful. Pretty soon the insurance company will stop paying for all of these needless scans. Don't forget he went into the emergency room recently and had a brain scan when he didn't even say he had a headache.
Anyway, I decide to cancel it. Doctors are not very happy when you tell them what to do. I am getting quite the reputation. But it is what it is. There will be no bone scan ... called it.
The following day someone from oncology comes in. What about an MRI? Hey, what about an MRI? Why has nobody thought of that since last Monday? Here we are on Thursday. This doctor says that the other doctor did a good thing in cancelling the bone scan because now we can do the MRI. So, that's okay - let him take the credit for canceling the bone scan. Lets just move on with the MRI and get out of here. Don't they know we have places to go and people to see?!
So Mike is scheduled for an M.R.I, Thursday after midnight. I am wishing he had it last Monday when he was admitted but that is a very silly and senseless wish. Still, it passes through my mind with all of the other things I am thinking. It's getting crowded in there!
THE CHARIOT AWAITS
So all of this time our little grandchild has been here in this hospital. Sometimes I swear Mike just likes to be in the hospital when Ginnette is here! But doesn't he know that she is home now and the baby is here in NICU ? He has not met him yet, but I have and I have already fallen in love. So today my son Christopher comes in to visit and he has arranged for a special ride for Michael.
NEW LOVE IS BORN
So, we can't all go in together, but Ginnette is already there with the baby when Michael and Christopher arrive. There are three generations there , and the only boy to carry on the Rancitelli name.
Caleb Michael Rancitelli - sometimes doctors don't have the best medicine. Sometimes, it comes right from God!
"Poppy" has met his new grandchild, and all is right with the world. At least for now.
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SEPTEMBER 2015
So, it has been so long since I have written that I have totally forgotten my blog password. It's a good thing the cookies stored it, or else I would be lost! For the sake of those of you who pop in every now and then to catch up, I will create a new page so you won't have to keep scrolling down. (phew)
I know this next stage of our lives will have a mark of deliniation always to be known as " the new house'. Hence, the title.
(*Please go to next page, "THE NEW HOUSE" to continue on HTH is Michael, part 2/ pg.6 )
*PLEASE CONT. to HTH is Michael part 2 under the title: "THE NEW HOUSE"( skip to page 6 )
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