Happy June!!!

....the time is flying by, but right now with the wonderful Summer weather arriving, I'd be very happy for things to slow down, so we can all enjoy a wonderful Summer.  It is by far my favorite season and always has been.  I just wish and HOPE that I will be able to take a break from treatment, so that I can build up some strength and truly enjoy the season.

    Not sure, where I left off, but I finally did have my Brain MRI, down at Lahey Hospital in Burlington, two week ago and have great news.  The brain tumor is still gone and all they see is a tiny blip, which is considered scar tissue, they are NO new tumors and now we thing the headaches and dizziness are being caused by the Opdivo.  I had my 12 Opdivo Infusion on Tuesday and also again me with Dr. Sunkara to see if there is anything I can do to feel better.   The fatigue is horrible and I still find I need to nap every day...and far more on the weeks after my Infusion.  I also still ahve nausea, headaches and nausea and that awful taste in my mouth, which makes all foods now taste terrible and makes it hard to even want to eat.  I do eat (at least one meal daily), usually supper, because that is when I'm mot hungry.   

   After the Oncology team review my Chest CT Results, (there are three new nodules that appeared and were not seen on my last scan).  They are all tiny 5mm, 3mm and smaller, but nonetheless are new and now I have to have a biopsy to find out if indeed that may be Cancer. UGH!  But, like all tests and new appointments nothing goes fast....and it's already been almost two weeks waiting to get in to see the Pulmonary Specialist who will do the biopsy via Bronchoscopy- Dr. Faris Mouchantaf.   I was hoping they could simply book the procedure, (I had one done way back, when I was in Lahey/Burlington), when this all first started.  But, since this is a new and different MD, I must first go in for the consult, which will be next Thursday (June 9th).  I just HOPE that once he informs me and I sign the consents etc, that we can get this over and gone with.  It has to be done a Lahey/Beverly, as they don't do them in Gloucester, which is a bummer, since I love my local Lahey, and would much rather have all my care there.   I do feel VERY fortunate that we have such an amazing Oncology Unit and that it's only ten minutes from my house.  I also greatly admire Dr. Sunkara and am very happy she has office hours here too! 

    Now, I jsut wait and for me waiting is hard, I want to move forward and know where is stand.  HOPING these nodules are no cancer, so I can take the much-needed six week break from Opdivo.   If however, the are cancer, we'll need a new game plan and one of which may be going back to Dana Farber in Boston in one of their Clincial Trials..and to be honest that option will truly be a hard ddeciosn to make.   I'm not a fan of being a Guinea pig and already feel that way on Opdivo, after it's it's only been FDA approved since November and there are still a lot of unknows about this drug.  On top of that getting to and from Dana Farber is pretty much a nightmare for me.  It's well over an hour away (on a good traffic day) and right in Downtown Boston, and it's not a drive I can make on my own, so that's huge determint too!  UGH!   But, I'm trying to think positive and hope it won't come to that.  Dr. Sunkara does not think these nodules are "disease progression" and said if she had it to give it a number she feels there is only a 20% chance of them being cancer -- which is good news.

  Thanks for thinking of me.....!!

Summer is almost here....

....and it is by far my favorite season, so I hope we have a really good Summer with lots of gorgeous Sun-filled days!

     It's hard to believe that it has been almost a month since I posted my last update.   It has not been a great month, but I am looking forward to happier and healthier days!   I'm still really struggling with intense fatigue, which is a very common side-effect of the Opdivo, which I've now been on since December.   I completed my 11th Infusion last week and also went though another round of CT Scans and a Brain MRI.

       Thankfully, the MRI was fine - I was really scared this time, since I have also been having some headaches and dizziness, form time to time -- which we now assume is also from the Opdivo.   I also head new CT Scans last Monday (Chest, Abdomen and Pelvic) with mixed results.  The Abdomen and Pelvic were great, no signs of any cancer or anything unusual.   But, the Chest scan showed three "tiny"new nodules on my lung (the largest was only 3mm, which is good and is most-often not considered anything to worry about).  Even so, I would have loved for that scan to have been clean too as it had been in January and in March.

     Dr. Sunkara (my Primary Oncologist) is now presenting my case (today) to the Cancer Team Board, where all the of the Oncologist meet every Monday to review certain cases.    We had hoped that ALL my scans would be clear and that would have allowed me to take a "break" form treatment for awhile, and we hoped in that time I could build up some energy and strength again.    I will be seeing her tomorrow to talk about the outcome of the meeting and also to determine what the next course of treatment will be.   Opdivo is clearly working very well (and does seem to be a wonderful drug) for those who are battling Stage IV Non-Small Cell Lung Cancer like me.   I am now a member of a wonderful online forum that was started for patients who are on this treatment and most of them are doing wonderful and are now "NED" also known as "No Evidence of Disease" or in a form a Remission (although Remission is the term typically used for "Blood" Cancers.    If you are not familiar with Opdivo, it's a newly FDA approved treatment and is an "Immunotherapy" drug that is infused, just like Chemo, and is typically used for patients who did not respond well to traditional Chemo or those (like me, who did initially but then had the tumor return).  My Lung tumor was gone late last August, but came back rather aggressively in November.  Here is a brand new NEWS report about Opdivo, that was just released today.  I'm sure you may have also seen some of the "Ads" on TV about Opdivo. 

    Recently, I have been much more depressed and hate the fact that I'm having to spend so much time "sleeping" and that I can't do much of anything and feel well.  I am also now finding that eating is a challenge and I can't find any foods that seem to taste good, which is not fun.   I also not have much of an appetite, but need to eat for nutritional purposes.  All foods seem to have an odd taste and I wake up every day, feeling kind of nauseous with that awful taste in my mouth...NO fun!   

     I am trying very hard to continue to fight this battle, but it does get harder and harder, especially with no end or good news on the horizon.  Currently, there still is not a cure for late stage Lung Cancer and I can only HOPE that these meds will help me fight it until there is a chance for a new cure.   But, I am exhausted and if I continue to feel this poorly, then I know there will be a time I will stop treatments so that I can try and feel better and have some good Quality time--quantity is not nearly as important when you are sick day and day.   I honestly hate that I am spending so much time sleeping and napping, just to get through the day and I need to feel better.....

    Still taking One Day at a Time, and still hoping for a miracle.  I also really want to try to go back to San Diego, at least one more time and am hoping to do that again in September.  I truly LOVE being there and always love spending time with Brian.    He hopes to be home over the Summer, even if only for a short trip, which would make us all very happy.  He has not been home in close to 18 months and we all miss him.  I'm lucky that I've been out to see him five times in the past year, but right now I am way too tired to travel and it would not be an enjoyable time to go there and have to spend my time 'sleeping'...!

      Crossing my fingers that I'll have some "good" news from Dr. Sunkara tomorrow and that I can truly enjoy my Summer!  

....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....................