....a new update.....

  The battle continues and is truly not as easy as I had hoped.  After fighting this nasty cancer for over a year now, it's getting harder and harder.   The side effects of the Opdivo for me, are a relentless fatigue and I spend a lot more time sleeping, which is NOT how I want to spend my life.

  I'm also now having some headaches and slight dizziness and because of my history, my Oncologist ordered Brain CT Scan, which was done on Monday.   Unfortunately, the results were Inconclusive, so I'm now being booked for an MRI.   And for me and MRI is hell, because I'm extremely claustrophobic and need to be put 'under anesthesia' to have one done.  It also has to be done at Lahey in Burlington, which is a long drive for us and not a place I enjoy going.  If you know my original story, you'll know I was sent there by ambulance from my local Lahey back on 3/27/15, when they found my original brain tumor.   I spend a full week there and learned I had Stage IV Incurable Lung Cancer that had spread to my brain...UGH!!

   On the upside, Dr. Sunkara has my CT scan reviews by a few docs and she feels it is fine..but this will be done to be on the safe side.   Lahey Burlington is also where my Neuro Oncologist is and he (Dr. Dempsey) is an fantastic doctor.  I'm also grateful that I had my SRS Brain Radiation done there and since that time (Last May) the tumor has been gone !   The CT Scan did not show any swelling, very positive, as I had a huge amount of swelling, last March....another positive note.

  Monday I'm back at my Lahey for my Lab work and then Opdivo #10 on Tuesday.  I actually asked for a break this week, as we have a big family Wedding on Saturday and I really want to be there and feel decent and having extra time off, should help with the fatigue.  I also now have meds for the  headaches and take them PRN-- I hate pain meds, so I limit them to the times, then I really need them.

  Happily, April is almost over--a very sad month for me!  Lost my daughter on April 19th, my Dad on April 21st and my brother on April 29th, which is tomorrow.   Still miss you Greg and can hardly believe that 17 years have passed since that horrific accident.  I still hope and pray you are at Peace.....but truly wish you were still "Down the Cove, having a Beer".....! 

Goodbye, My Brother

by Lisa

My brother Greg an awesome guy,
I don't know why you had to die.
You were so cute as a little boy,
You smiled at us and brought us joy.

Even though we had our little fights,
Over silly things like phone lines and wiring lights,
I never wanted to be a pest,
I needed your skills, cause you're the best.

I'm glad those times, were only a few,
It was hard for me to argue with you,
But that's just me, as you are you,
And in the end you always came through.

This is Lanesville where you are from,
We all are here with Deb and Mom,
Our hearts are broken, as you know,
We really can't bear to let you go.

Sometimes you were so crazy and loony,
Especially with the friends who call you "Cooney",
I know that everyone here will agree with me,
That the Lanesville Crew is the best there could ever be.

We wish so much that you were here,
Or just down "The Cove" havin' a beer.
It's happy thoughts that will get us through,
Like all the fun we shared with you.

And now my poem will come to an end,
Until the day we meet again,
I pray that you are now at peace.
Goodbye Greg With Love From Lis

In Loving Memory....

It's almost impossible to believe that 25 years has passed.
One of the most heartbreaking days of my life....
 

In Loving Memory Kristyn Alyssa Haines April 19, 1991  

  Forever cherished in my Heart!  

Opdivo and me....

....not so happy with the Opdivo side effects right now.   Thankfully, they are not the serious side effects, but I'm so exhausted and weak, that I'm spending most of my time in bed -- sleeping or resting and that is not fun.   I'm also still having lots of nausea and this week when I had my labs, my Potassium was so low that I need to start with a 2 hours infusion of that before my Opdivo, which made a long day in Oncology.

   I'm also really bummed, because I can't do anything...I am not creating, not going out, missing out of fun craft workshops and now had to cancel a Craft Retreat I was planning to attend next weekend, which I was so happy about.  Bought my seat back in February, and now, because of this damn cancer I can't go!   I had planned to dive down a day early (it's in RI) and stay in a hotel that night, I know I could never make it through six hours of creating and then drive home (2+ hours)...and sadly I lost on on the money I paid for the class since it's non-refundable.  Luckly, I cancelled the hotel in time so that I will not lose anything on that.

   Still also am losing over $500 after buying (4) Tickets to the Billy Joel Concert at Fenway Park, coming up on my actual Birthday in  August.  I thought for sure my four BFF's would want to go again and while two of us do want to go, two backed out, making it impossible for us to go alone (we can't afford the limo with only two)...sucks!  If you are in the Boston area, would want to buy 2-4 tickets, PLEASE let me know.  Selling them at the exact costs which is $132.00 each and I purchased them direct from the Red Sox.  Plus, the concert is sold out too, so this is  great price.   When the weather is better I'll have to list them on Stub Hub, etc., but hoping I can sell them to other friends who want to go.   We went last year and LOVED it, so I really want to go again!

   Anyway...life is not fun or good right now.  My son also got laid off from his new job, he was only there 2 months, and that all happened this week too.....as they say when it rains, it pours....and of ya, we may have snow coming again too---and it's April.    UGH!!

   Bye bye for now...hoping for better days soon....................