Sunday, February 12, 2017

   The Cancer Battle continues and I'm still trying VERY hard to remain positive and determined to hope for a CURE!   Due to continued side effects caused from "Opdivo" the Immunotherpay drug I have been on since December of 2015 - I have been placed on a treatment break for the past few months and have been closely monitored by CT Scans and monthly check ups at my Oncology Unit.   Thankfully, the Lung Tumor has remained Stable, which is good news and we do hope that this long break will allow the Pneumonitis to finally clear for good and also give my body a much needed break from non-stop treatments I been having for almost two years now.  It's hard to believe but, it will be two years on March 27th.   The day I learned that I had a brain tumor -- and subsequently learned that the brain tumor, was actually a metastases, from my primary cancer which was then diagnosed as Stage IV Lung Cancer.    If you know anything about cancer, I'm sure you know that Stage IV is the worst stage and is also often referred to as terminal cancer, a term I totally do not like to use   To day, there is currently not a cure for Stage IV Lung Cancer, but thankfully it is treatable and as long as the treatments work, you can bet I'm going to fight.

   It's been and up and down battle!!!   -- I did very well with the Stereotactic Radiation treatment that was first done for the Brain Tumor.  It worked perfectly for me and there is no longer any sign of that tumor.  YAY!  Hopefully, it will never return, but I will continue to have Brian Scans or MRI's forever to be sure there is not any recurrence.   Lung Cancer tends to spread to the Brain or the Bones most often.   Ironically, it was the symptoms from the Brain Tumor that actually lead to the Urgent CT Scan I had back on that Friday in March.  The day I found out I had a Brain tumor --- Some of the worst words you'll ever hear spoken.    Sometimes I think back and it seem surreal.   I can still remember how scared I was and how much it changed my life in a matter of two days.   I thought I had "vertigo", and it all came only two days prior, but by Friday morning, I has started to have difficulty with my speech and use of my right arm -- I felt a little dizzy too, but had no other signs of any illness, and never ever expected to then learn that my main tumor was actually in my Lung.   To this date, I have never had any signs of Lung Cancer, no cough, not chest discomfort, no shortness or breath -- nothing!   It's almost hard to believe ?   Ironically, I had been hospitalized exactly one month prior for hip surgery --- and although I had a Chest Xray done for Pre-Ops,  and ultimately four more during that hospital stay, no one ever saw the Lung Tumor?   They told me, that I had Pneumonia a fluky Post Op side effect --- Yet even then I never had a cough or any pneumonia symptoms?  Clearly, something had to have been missed?     I guess I'll never understand how you can be totally "fine" one month and a month later learn that you have late stage Cancer -- WOW!! 

   Did you know that Lung Cancer is the leading Cancer Killer, I didn't, not until I had it.  I always thought that I would be a much higher risk to develop Breast Cancer, especially in my family -- My Mom is two time Survivor and her sister died of Breast Cancer when she was in her 40's.   I was so good about having my Mammograms.  Go Figure!   And although I had once been a smoker, I have been smoke free for over 10 years and had several clean and clear chest xrays.   My risk "being" a former smoker does make my risk somewhat higher, but each you are are smoke free, you risk becomes less and less.   I also have Adenocarcinoma, which is the type of Lung Cancer found most often in Non-Smokers.   We'll never truly know if smoking was a factor in my cancer or not -- but that doesn't matter now and goodness know no one deserves Lung Cancer, but sadly because of the smoking stigma, there are actually people who look at those who smoked, as if they deserve this and did it to themselves.   I've seen that happen in some Support Group and it's upsetting.  No one deserves cancer and many people who smoke, never do get cancer, it's truly a matter of back luck and genes that mutate and can happen anyone.    We need to let everyone one that Lung Cancer strikes ALL !  It is BY far the leading Cancer death among man and women -- 1 in every 4 cancer deaths are from Lung Cancer.  More people die from Lung Cancer than from Breast, Color and Prostate combined and many have never smoked.   If YOU have lungs and breath, you can get Lung Cancer.   And it's not only older patients, it's now affecting many young healthly (non smokers) even starting in the 20's and 30's.  It's getting worse, instead of better and that's so scary.   The median age for Lung Cancer once was 70 -- now it's closer to 40-50?   WOW!

   Moving on from my "Public Service Announcement" -- 
  
      I know I am extremely lucky to be doing this well, with such a horrible diagnosis.  I am one of the very fortunate Lung Cancer patient's who has had very good results with Immunotherpay and I'm so grateful that I had a super Oncolgist, who persuaded me to try this drug, just one month after it had received FDA Approval to treat Non Small Cell Lung Cancer.  At first, I declined it - I was afraid of all the potential side effects and it really scared me.   I knew if I tried this I would be an "extension" of the clinical trial, but the more I thought about it, I decide to give it a chance and boy am I glad I did, I seriously doubt I would have survived this long, had I not made that choice.   I had already been on Chemo and had Radiation and although that worked for a short time, by October of 2015, my tumor was back, and more aggressive than when I first started?    My tumor grew to over 4 cm in a very short time and was no longer responding to Chemo.  Now, it's only 14 mm which is tiny and has remained that size for almost six months now.   I'm blessed -- !!   There is not doubt in my mind that this drug saved my life.   I HOPE every day that I will be able to resume the same treatment, but at this point, we just do not know if it will be safe.  I has caused me to develop Pneumonitis three times now and each time it's been worse -- that itself can quickly become very serious (even fatal) and it's one of those well known side effects of Immunotherpay.   I'm very much in a "Limbo" status right now -- we did not know what is next for me and that will all depend on my next scans in late March.  If I have any progression, I will need to start treatment again, but with what?   These are the unknowns and the thoughts that keep me awake at night -- it's really so hard to ever keep cancer off your mind, when you are fighting it.  
  
    For now I'm try very hard to shift my focus on to HAPPY things.   My sweet little Grand-daughter is now due any day and I could not be happier.    Alex and Acacia also bought a house and moved into over the Thanksgiving Weekend.    The house they bought is lovely, and was totally renovated -- Everything is new and they did not have to do one thing when they moved it.  It's perfect!   A Brand New Kitchen, Lovely hardwood floors, Three bedrooms, including a lovely Master with a Master bath.  I LOVE it and could easily MOVE right in and be very happy there -- !  I am so happy for them and for their little girl.   They have now chosen a name for the baby and she will be "Harper Leigh".    Her nursery is now all done and is so sweet, I love it and love the colors -- Gray, White and Aqua.   She is going to be one very loved and adored baby and we all anxiously awaiting for her arrival.  Here is a picture of one corner or her room.   


     I am also going to be heading out to San Diego to visit Brian (my oldest son), shortly after Harper arrives (sure hope she is not too late), as I am flying out on March 7th.   I'm super excited to see Brian, it's hard to believe, but it's been a year since I was last there.  I went out for three weeks last February to escape winter and had a wonderful trip.   Funny thing is that the whole time I was gone last year, the weather here at home was fine -- it was cold and there was one day it went down to zero, but we didn't' have any snow the entire time I was away.  This year, up until this month, we've had a really easy and fairly mild winter -- perfect for me.   But, all of sudden, we are now having snow -- UGH!   We've already had over a foot this week and are now under another Blizzard Warning -- starting later today -- I swear sometimes I have the worse luck in life.  I also do not want Little Harper to be born in the middle of a Blizzard and have the worry about the kids traveling to the hospital for her birth -- not to mention that I would not be able to drive to meet her in a Blizzard either?   SO far, there is not sign she's planning to come yet -- Acacia had a non-stress test on Friday and she's fine and well, and clearly perfectly content to keep up waiting.  Funny thing is that we all thought for sure she would be born early and Acacia has been "low" for some time?   Her actual due date is next Saturday the 18th, but they would love for her to arrive on the 16th, as they both were born on the 16th (April and November) and also were married on the 16th -- a lucky nice date for them both.  Hopefully, the next post from me will be to share her first pictures!    WOOHOO!  

    So that's it for me -- as I said, I hope she arrives soon and hope Acacia has an easy labor, they are now thinking she's going to be a big baby and longer we go, she'll only get bigger.   I just HOPE she's not too late --- I scheduled my flights to be three weeks "after" her due date, thinking that would give me time to meet her and then be able to bring lots of pictures to share with "Uncle Brian".  We know they won't let her go beyond two weeks late, but still I never imaged I might only have a week with her, before I leave.   So for now, I'm hoping for the 16th or even the 14th -- I think a Valentine's Baby would be very sweet!

     Thanks for stopping by - I do hope to start posting updates more often and I know that once I go for my next scans, they may be changes coming.  I've also recently been to see a new "Thoracic Oncolgist" for a consult and second opinion and also because my adored Oncologist "Dr. Sunkara" is no longer in my area.   She left for a wonderful new career opportunity in October and I miss her so much.   I literally cried the day she told me she was leaving and it's been a huge adjustment to start all over with another doctor.  Luckily, because we did have such a wonderful doctor/patient relationship, she has promised to help me with any decisions and we keep in touch via email.  She will remain a vital pat of my care - although it's just not the same.    I'm also not "loving" the Oncologist who took over my case and so far the hospital had not hired a replacement for her?    He's MUCH different than she was and is not on the same page with Immunotherpay and a lot of the new treatments and that's upsetting to me, as I do NOT want to go back to Chemo.  I've been there before and it failed me -- I guess time will tell -- but it's also going to be a major change if I move my care to another Oncolgist as that will also mean leaving my local area and all the rest of my team, who I'm now very attached too.    UGH??  It's going to be tough not matter what happens, and right now, all I can do is wait?

   Wishing everyone a good Winter and hope you are all well!   

      Hugz,
       Lisa

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