Our little journey this summer ( 2014) was booked for Lake George, N.Y., arguably our all time favorite spot, competing only with Old Orchard Beach, Maine, and it's tough to compete with Old Orchard. After all, Old Orchard has the ocean. And, I must confess that the ocean is the one spot where I can truly hear the quiet that is God - without effort.
Still, Lake George, with its beautiful mountains and shimmering water, has a majesty of its' own.
Lake George vacation photo, 2012 (Click to enlarge)
This year held the special promise of sharing our little journey with our soon to be 4 year old grand-daughter, Gianna. To me, that is a journey.
We planned to take her on a boat ride ...
We planned to take her on a boat ride ...
(ACTUAL pic/ click to enlarge)
bring her to the noisy carnival that is set up there each year and show her the glorious fireworks that are shot off every Thursday night, viewing from within the safety of the boat.
(ACTUAL pic/ click to enlarge)
No more pictures on the computer, photo albums or stories. This year would be the real deal. Little Gianna would spend some time with us that she would always remember, and so we opted out of Old Orchard, thinking the amusements at Lake George would be better for her, and we booked.
Now , that's what I call a journey - an excursion, a cruise, a tour, a child seeing majestic sights for the first time ... and 2 adults seeing them all over again through a child's eyes. Yes, that is a journey.
A nightmare, on the other hand , is defined as: a terrifying dream in which the dreamer experiences feelings of helplessness, extreme anxiety, sorrow, etc... Yes, I recognize those feelings! They have set up residence in the pit of my stomach and the only difference between them and a real dream is that real dreams (Isn't that an oxymoron?) dissipate once the dreamer awakens and realizes they were asleep. With cancer, you may sometimes feel like you are dreaming. You will surely wish that you are dreaming, but you do not awake from the sorrow that it brings.
This nightmare is not something that I wish to share with my princess Gianna. It does not come with cotton candy or the lively sounds of the carnival. It is joyless.
The Best Laid Plans of Mice and Men ...
(often go aw'ry)
That's what happened here. We make plans, but we forget that we are not in control of our destiny, and so, our vacation plans were cancelled before the diagnosis. That little journey was over before it had begun.
Although I was not ready to hear that my husband of 35 years had a cancer recurrence, I knew one thing for sure - he could not walk around Lake George with a grimace on his face and oxycodone in his system, trying to mask the pain of what several drs. over the prior fourteen months had called sciatica. So I called the hotel and cancelled. It was done.
I had enough, and when school (work) was out, I called MassGeneral for the appointment and after 14 long months of going around in circles here, we had the answer within a week. It was a localized recurrence of stage 4 cancer. This was in his pelvic region, on his hip, pressing on all of the nerves, down his leg and right into his foot. No wonder his leg was so swollen. A pet scan at MGH annex ( clinical trial because our ins. co. denied ) revealed that the cancerous growth grew around the posterior region as well which explained the exacerbation of pain while sitting on the organ bench.
How could the doctors here not know ?! His oncologist here checked him again and again, but never for the hip MRI that I personally requested numerous times.
No wonder physical therapy did not help. That's not the treatment for inoperable cancer. What a little merry go round - but no carnival treats.
Not our First Rodeo
This is not our first experience with cancer - nor do I believe it will be our last, but somehow, it does not get easier.
Michael was first diagnosed in 2006 after a colonoscopy and treated here in Springfield with a minor procedure. No follow- up treatment of any kind was offered.
By 2009, things were serious. We went to MassGeneral where he was diagnosed with stage 4 cancer. There, he had the surgery that removed most of his intestines as well as 24 lymph nodes and caused him to wear a (temporary) ileostomy bag. He was on chemo for many months and had radiation at the same time. He worked two jobs, with the support of his colleagues and was able to continue playing the music he loved at Our Lady of Hope Church and teaching Grades Pre-K through Eight while he underwent treatments.
There was so much support and so many prayers pouring in, he felt blanketed by love. In fact, "Keep on the Sunny Side of Life" was Mike's theme song that year and he played it often.
Unfortunately, our beloved Church was closing at the end of the year and Michael would be out of his organist job. With the Catholic schools closing and becoming 'just one" ( St. Michael's Academy) we couldn't imagine how this man on chemo with a stage 4 cancer and ileostomy could possibly land the job. But he did and hopes were very high.
We asked the doctors to switch to xeloda (chemo by pills) so the new students wouldn't be afraid of his chemo pack.
Michael scheduled the take down ileostomy reversal surgery for the summer so that he would not have to miss work and we were back in the game again.
We hardly thought of the fact that MassGeneral had informed him that they had gotten " almost all" of his cancer, and hoped to zap the rest with a highly specialized PROTON radiation which we had to fight our insurance to approve. We needed to stay at the fabulous Astra Zeneca Hope Lodge in the Jamaica Plains area of
Boston to get to daily treatments, and before we left, I bought 2 'Life is Good' Tees because I knew there would be people there in worse shape than us, and I wanted to walk in with a smile and a sentiment that we sometimes felt - and sometimes didn't .
We were right. There were lots of people worse off. There was a Jewish mother who only had a few weeks to live, and Mike would play songs on the grand piano that sat there in the living room of the Hope Lodge and her family would sing and laugh and dance and snap picture after picture of their smiling mother. They were making memories to be cherished forever.
* Mike playing at THE HOPE LODGE in 2009. Click to enlarge.
There was the young lady with the brain tumor who was afraid she would lose her eye. Her mother accompanied her to all of the proton radiation treatments and her fear was almost palpable. I don't know whether or not they were able to save this young woman's eye .
There was a college student in his late twenties who also had colorectal cancer, but his ileostomy was permanent. I wondered if he had a girlfriend. And the list goes on and on.
There was Brian, whose wife would not / could not walk with him on his " cancer journey" . So while the Hope Lodge normally mandates that a caregiver stay with the patient, he walked alone.
There was John and Elaine, a middle aged married couple who had a long battle with cancer. John needed ongoing treatments, probably for the rest of his life, and he wore a mask most of time as his immune system was extremely compromised. They were all too familiar and at home at the Hope Lodge.
I'm not sure if our 'Life is Good' T-shirts made them feel any better or worse about things, but I know we had a true sense of community at the Hope Lodge, and I will never forget the days we spent there. I have recommended it to many in a similar boat. If you must go to Boston for treatment, it's worth looking into . It is quite the gift.
This time there will be no Boston treatment, no surgery there and the follow up radiation once chemotherapy is finished, will be local. We are very fortunate to have a highly recommened oncologist at Baystate, and it seems like just yesterday that Michael had the port removed from his chest ( he kept it for years because he was superstitious that he might need it again someday) as we book at Baystate for this surgical procedure. It is similar to pacemaker implantation. The port allows nurses and doctors to keep accessing Michael's veins for bloodwork and chemo infusion.
Within a few hours, it's over - and just begun.
Out of the Closet
Being that I was diagnosed with breast cancer (I.D.C. , 2012) , I was tempted to subtitle this in pink, but I just couldn't bring myself to. There is soooooo much good that comes from "THINK PINK" campaigns that I refuse to disparage them in any way. And while I am the very first to admit, that I have not gone through 'anything significant' when it comes to my own breast cancer ( NO mastectomy, no chemo and through my own decision - not even radiation), I cannot present breast cancer with anything as pretty as pink since it has left me with the permanent gift of lymphedema which has changed my life forevermore. http://www.stepup-speakout.org/
I really want to shout from the mountaintops when some breast cancer "survivor" tells me they were lucky and did not get lymphedema, hereafter referred to as LE. You see, there is no such thing as not getting LE. The plain truth is that ANYONE having had any type of cancer surgery that has had ANY number of nodes removed is at a lifetime risk of getting LE. There, I said it ! It's ugly, and I really don't like having to have to say it. After all, it is an iatrogenic condition. It's breast cancer's dirty little secret and doctors should warn people (esp. since there are some precautions that may help) but they just don't. I don't mean to sound harsh. I'm just very passionate about warning people about LE.
Please don't kill the messenger.
My LE is not severe ( yet?) but it has been life altering. I have had to wear a compression sleeve and glove, and I have felt the shame
(why ?) of wearing my heart on my sleeve while others have had HIPPA protecting them.
I can't pick my precious granddaughter up , and I have to constantly be concerned about the deadly infection cellulitis. I can't get a cut without worrying or even a mosquito bite. Zumba is not in the cards for me and summer evenings on the patio invite bug bites. No more power walks in the park. I cannot exercise - at least not without a compression sleeve and a glove.
I had only a lumpectomy and one clean node removed.
I can't wear my wedding ring.
Only a handful of people even knew that I had cancer before today - unless you want to count all those that they might have told, but now I suppose everyone will know. And, why not?
After all, I am the MA. state liasion for the Lymphedema Treatment Act and lymphedema did manage to provide me with a brief modeling stint lasting a half day or so. If you MUST wear a compression sleeve, you might as well wear it in style -
Lymphedivas is the place to go!
Laurie Rancitelli
So, I have put my cancer on the back burner in a sense (no radiation) so I worry. But why worry about that when there are so very many other things on the front burner to worry about ?
Better yet, why worry at all, since we are in control of nothing yet, worrying is human nature.
OCTOBER 2014
I felt I should update this page since it is breast cancer awareness month. For anyone living in the area who would like to get a 3-D mammogram( not to be confused with digital) you will have to drive to Northampton to Cooley Dickinson. Well worth the ride if you have density.
Also in Northampton, is the wonderful Cancer Connection. If you peruse their website, you will see all the great things they have to offer, including many cancer and caregiver support groups as well as a lymphedema support group.
I am still "knocking at Baystates" door and asking why there is nothing like that right here. There should be !
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