Loocie's Sarcoma Journey Thoughts, Feelings & Snippets.

[Natalka]

Hope you have a wonderful weekend!

[Dee09]

May all the positive energy here reach you and help zap those suckers!

[Kitty77]

Have a happy weekend Loocie!

[SillyLoocie]

June 12, 2014 – Marked the 12^th anniversary of my beginnings of my scuffles with Neurofibrosarcoma. Also known as MPNST – malignant peripheral nerve sheath tumor – I lost my right leg below the knee. I was 42 years old.
Life went on for me. I did experience a few complications after the initial surgery, but I did recover quite nicely. I was fitted with a prosthetic limb& my life went on. My “leg” just became part of me.
Over the years I adapted well. In the early years after my amputation, I was followed every 3 – 4 months with a chest x-ray to make sure that my lungs were clear. The years went by and I felt quite well.
Things did grind to a bit of a halt for me in 2012. That’s 10 years after my surgery, I had pain and I knew something was very wrong. A very large tumor was found in my pelvis & Ilium on my left side. I was in for a very complicated surgery. So, in July of 2012, I was in Mt Sinai Hospital in Toronto for a 10 hour operation. A ring of bone from my pelvis was removed, along with bone from my sacrum, Ilium & coccyx. This tumor seemed to be everywhere. It was painful & I had a long road of recovery. I spent 2 months in the hospital. Already being an amputee on the other side really slowed things down with my recovery.
I did recover & began to get around slowly. Step by step with a walker & cane…. It was recommended to me that I have 33 radiation treatments, so I did. The year 2012 concluded with me completing my radiation & hoping that it was my insurance policy that this neurofibrosarcoma would not spread to my lungs…….
However, here I am. Tumors in both lungs, inoperable & not a candidate for radiation this time – I felt the crush of sadness and disbelief that this was happening to me. So much for composure, I went to pieces.
I was offered the chance to participate in a clinical trial. ENMD-2076. (in lieu of traditional chemo)
The most recent CT scan was last week & I was given the news that the tumours had not changed – meaning that they had not become any larger. Hooray!!!! it gives me the hope that just maybe this drug may be onto something when it comes to the proliferation of these nasty cells. It is also my sincere hope that somehow what they learn from my experience here, will one day be of benefit to other people who have the misfortune of dealing with this terrible disease.

A footnote – June 13, 2014 marked the 25^th anniversary of the death of my dear brother. It doesn’t seem fair that he was stolen away & that he didn’t get the chance to see his kids grow up. He didn’t get the chance to retire & start to enjoy his golden years. My Mother was never quite the same after we lost him….. I miss his lively contributions to conversations, snappy one liners & so many things. One thing I can tell you is that I can truly feel his presence in so many ways & that is comforting & just makes me feel calm.

A 30 year old family portrait. All dressed up & together for a family wedding. My brother is the tall handsome gentleman on the far right. My beautiful Mother is front & centre.

[Shwa Girl]

I was offered the chance to participate in a clinical trial. ENMD-2076. (in lieu of traditional chemo)
The most recent CT scan was last week & I was given the news that the tumours had not changed – meaning that they had not become any larger. Hooray!!!!

Hooray, indeed!

[cheekysaver]

Hugsss Loocie! I haven't been on much but I often think of you!

[SillyLoocie]

The beginning of another week... may it be a good one for us all!

I am finding that participating Sarcoma support forums very informative & helpful. There are so many different types of Sarcomas & they can sure turn someone's life upside down & then some. It fills me up with such sadness when we loose one of the people we were routing for. Last week, it was a young boy who fought Ewing's Sarcoma with such tenacity & determination.

Sarcoma, sarcoma I hope you’re paying attention,
You don’t even deserve an honorable mention,
Pack up your things & leave us free & clear,
You need to be banished to a far away frontier,
We don’t like you & our friends dislike you too,
Your sinister presence should no longer accrue,
To all my friends, I send you vibes of strength,
Let’s keep sarcoma away even past arm’s length!

[hollyquaiscer]

I was offered the chance to participate in a clinical trial. ENMD-2076. (in lieu of traditional chemo)
The most recent CT scan was last week & I was given the news that the tumours had not changed – meaning that they had not become any larger. Hooray!!!! it gives me the hope that just maybe this drug may be onto something when it comes to the proliferation of these nasty cells. It is also my sincere hope that somehow what they learn from my experience here, will one day be of benefit to other people who have the misfortune of dealing with this terrible disease.

My mother was one of the original patients in the trial of chemo for leukemia patients in Ontario so may year ago. Unfortunately, it didn't help her and she passed at the young age of 32. BUT, with the knowledge learned, chemo has gone on to help many many people. My dear Val, I pray for you each and every day. Life is sooo unfair. You have been a positive role model to me with your struggles and every day I feel bad about myself and my pain, I think of you, and others passed on, their struggles and triumphs.

You are strong, amazing and beautiful. My life is better for having known you.

[SillyLoocie]

So, I am here once again. I'm missing someone terribly today. I want everyone to learn more about Sarcoma. It has been called the forgotten cancer before. I am getting to know some really decent people through my illness. Positive things do come out of these situations. It is my hope that if I make someone smile because they can relate to a line in a poem, they understand that words of support really can comfort & remind to keep the faith.

I was thinking just the other day what defines sarcoma survivors,
Such fine individuals who are the most endearing advisors,
We celebrate; we chat, we lend a hand & chalk up milestones,
We’re sopranos, we’re tenors, & we’re altos & even baritones,
We are animal lovers, cooks & writers, we’re daughters & we’re sons,
We’re Mums, we’re Dads & believers & sometimes we make puns,
We all have great taste in music & of course in fine cuisine,
& all of us know by the hard way, that life can be so unforeseen,
We've grieved, we've wished, we've vented & ranted,
We've lamented, we've shared & our views are not slanted,
We’re brave, we’re strong & we all dare to dream,
For we all have a purpose in life’s crazy scheme,
We would like to send sarcoma packing to Island of Abomination,
We would like to abandon it to crumble without any foundation,
Sometimes we have days where our energy is zapped,
& when we reach inside we can’t help but feel that we’re tapped,
We must keep the faith along with hope & desire,
I guess we’re all singers in the Sarcoma Choir,
It is nice to come by here & at just say hello,
& Sarcoma this is your warning to look out below!!

[hollyquaiscer]

Good Morning Val, hope your day fills you with sunshine and hope. Your family members share their hugs and you all laugh!!!!

[hollyquaiscer]

[Dee09]

Here's to strength in numbers... of the good guys!! and of the good thoughts and good vibes and wishes.

[walkonby]

good morning Loocie!!

[hollyquaiscer]

Words I have lived by for several years now....and I'm still here living by them

I hope today is a wonderful day for you, and you are treated to something you didn't get a chance to experience yesterday, and tomorrow is even better with more new journey's than today!

[SillyLoocie]

It was an adventurous day at PMH. There are renovation plans in the works for Princess Margaret. That main floor is so crazy. It's like being in an airport! I arrived at the blood lab & checked in. They assigned me my number. I was number 1. I've always wanted to be #1. They were calling #37. I had a good hours wait for my turn to be jabbed, but you can pass the time there quite easily. There are some nice people who are going through some dastardly times with cancer. Chatting with others is helpful in many ways.



I like to go to the rooftop garden to get some fresh air, have a view of the city & eat lunch. We always bring food with us when we go down there. Druxy's is great, but expensive. Who would have thought that dealing with a cancer agenda could be so costly? I did have a good day though & I get to do it all over again in a couple of weeks.