Sunday, May 7, 2017

Happy May!!

  Things continue to go well -- I am still on my treatment break and feeling pretty good.   The hardest thing right continues to be "relentless fatigue" along with some nausea, but I'm sure some of this may be due to also have "Fibromyalgia".    

  Now that winter is over - I'm finally getting out more and also have been able to take my Pups (Skye and Zeva) for walks---something I was not able to do for months and months.  I was very lucky to find a wonderful dog-walker, who we hired to take them and who also helped out when I was off for treatments and such.  They are two dogs are used to having someone home with them all day, so I never had liked leaving them alone for more than a few hours.   Luckily, they are both small dogs (Chiweenies), and do not need a lot of walking and are very content to play in their fenced area of the yard.  But, they do enjoy it when we walk and I love the exercise and fresh air.     They are my constant little companions and when I have a sick day and feel miserable, they are always by my side. Love them -- they are part of the "Family".



   I was at Oncology earlier this week for a routine appointment (Port flush) and it's always nice when I'm only there for something simple.   I will go back again at the end of May for another flush and then will have my next CT Scans at the end of June.   I still deeply miss my Oncologist "Dr. Sunkara" and am sticking with the Oncologist who took over my case after she left, but still hoping that they will hire another "younger female" Oncolgist to join the team.  The doctor I have now is okay, but he's much older and has a totally different style and personality.  I just don't "jive" with him nearly like I did with her.  We had a wonderful bond and I really miss her and also feel she saved my life, because of her research and being so up to date on the Immunotherapy treatments.  I was the very first patient at my local hospital to go on "Immunotherapy" (Opdivo/Nivolumab) shortly after it received FDA approval and I know it saved my life.  I had been on Chemo previous to Opdivo and then have major progression and a very aggressive tumor and even though I was very "scared" and reluctant to try this treatment, she told me she felt it was my best option and felt confident that it would help -- she was right.   I am very lucky that she is still following my case and we keep in touch via email.   I am blessed to have her on my "team" and she's been so wonderful in helping to support and guide me. 

   If it had not been for her, I seriously doubt I would have survived this long and that would have meant I never would have met my beloved little Grand Baby!   And I just love this baby so much!! My favorite days are days when I spend time with Harper.   I hope and plan to help out by caring for her when Acacia returns to work later this month.   Acacia's Mom and I will be taking turns and doing whatever we can for the kids.    She is a lot of fun, but also a lot of work and I find I'm often easily exhausted after spending a few hours there -- but she is worth it.   Here is a picture from last weekend -- She is enjoying her new "Activity Center" and growing fast.  Hard to believe that she's going to be three months old on the 21st.   Grand Babies are precious and a pure JOY!!

  Other than that, not much else new here!  I am looking forward to the warmth and sunshine that Spring and a Summer brings -- my favorite season.  Spring so far has not been that great and that seems to be typical for the past few years.  Lots of rain lately and cool days, which is not wonderful, but when the sun is out, it's wonderful and today was one of those days.

   I still HOPE every day for a "Cure" for Stage IV Non Small Cell Lung Cancer and for any and all Cancers and terminal illnesses.    I've also learned that you need to enjoy every minute of life and good health -- something we all seem to forget to do and then when you suddenly find yourself or your friends or family ill, it hits home.  Good Health is truly a gift and you need to be thankful for every day that you wake up and feel good.   I wish so much I had cherished all those good days so much more - we truly never know what tomorrow may bring!!

 Hugs to all,

Thursday, March 30, 2017

News!!! Oh happy DAY!!

   I have been so behind in keeping up with this blog -- mostly because I have not been in treatment for so long and because there has not been a lot to report as far as the Cancer Battle goes.   For the last six months, I have been very lucky to have stayed stable - especially since they had to stop the "Opdivo" due to continued side effects with it causing me to develop low-grade pneumonitis.

   On Tuesday I was back at the hospital for my most recent round of labs and CT Scans and I admit I have been really nervous because I have had so much fatigue for the past several weeks.   Today, I went for back for the results and I am delighted to report that I am now NED (No Evidence of Disease) which means that currently there is no sign on cancer in my body --- WOOHOO!  The Opdivo clearly worked exactly as it was designed (at least for me) and even though they stopped it in late August, it apparently had been in my system long enough to teach my body how to continue to fight of the cancer.    I am elated!!   But in the world of  Cancer, you are not considered "Cancer Free" until you are NED for five years and ultimately that's something that would be very rare for anyone with Stage IV Cancer -- nonetheless, this is so happy news and is very promising.  It gives me more time and time is what we all need --- we will continue to hope that the "time" will be what we need to find a cure for me.

     I had to admit, I was pretty shocked, since I have been so fatigued lately and that always worries me, but my Potassium is low and we are double checking my thyoid, as it's likely they may both be the culprit -- plus, I do have Fibromyalgia and we that in itself can cause pretty severe fatigue.

    Now, I don't go back until late June, (except for monthly port flushes) and in June we'll be doing a chest xray and if that still looks good, I won't even need a CT Scan!  Woohoo!!

    I now plan to enjoy every day and to really push myself to get out more, spend more time with the kids and especially with Baby Harper -- it's wonderful to know that I'm doing well in the battle.  But, I admit, I know many who aren't and I'm so grateful to be one of the lucky ones.   I'm still going to support everyone who is battling Cancer and hope that we all can do well and beat this nasty illness!!

   One Day at a Time!!   Thanks so much for all and kindness and support you have provided to me these past two years.  It's hard to believe that two years ago Monday (3/27/15) that I was diagnosed
and now two years later, I have reached NED!  


Sunday, March 5, 2017

Happiness is a Grandbaby...

Happiness is a Grandbaby....

.....And I am delighted to let you all know that my sweet Grand-daughter made her arrival 
on February 21st a few days after her original due date.  She's a healthly happy baby and weighed 9 lbs. 6 oz. at birth.   Mom had a very long and hard labor and after almost 32 
hours, Harper was safely and happily delivered by C-Section.   Needless to say, none of us 
had much sleep that Monday night and we all expected her to be born on Monday, but she 
just was too big and not ready to come out on her own!    We are all so thankful that she 
was never under and stress and was born perfectly healthy the following morning.  It was 
not so easy on her Mom, but's she is healing well from the procedure.   The kids are in 
LOVE with their little girl and they are both wonderful new parents, it all seems very
natural to them -- they are such a sweet little family.  

   She is an angel and has been a really good baby.  She sleeps and eats well and when she 
is up, she's very content and happy, they are blessed.   This picture was taken the day she 
was born the very first time I held her -- Instant LOVE!! 

  She is now almost two weeks old -- it's amazing at how fast the times flies by.  I am so in 
love with her -- it reminds me very much of the same wonderful bond I had when my boys 
were born.   The love is something you truly can't describe, it's the best!!   This little dress
 is  so sweet, too bad she's pretty much already outgrown it, as she has with many of her
"newborn" size clothes.  Thankfully, we did not buy a lot of tiny sizes and she still has lots
of of wonderful outfits to wear.   The first week she was home we had some fabulous Spring weather with record-breaking was wonderful.

   For now, my focus still on all things HAPPY -- the baby and my trip to see Brian.   I'll be 
back to the Cancer Battle soon, as my next round of CT Scans are coming up at the end
of the Month....and to be honest I'm not at all looking forward to them.   For some reason, I
feel like something is not quite right -- and it's never scans are never fun or easy.  They
always cause a significant amount of "Scanxiety" !!   It's hard to believe in some ways that
I've been in this battle for almost two years -- I hope I can continue to fight for a long long
time.  I want to have many years with this precious child!  

Thanks for stopping by -- I am thrilled to finally have my very own Grandchild --  she's 
the newest LOVE in my life.       

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!   


Sunday, January 15, 2017

New Year - New Update!!

... I am very behind on keeping up with my blogs for the past fews months, but thought I would stop by today to give you all a little update.

   As of now, I'm doing pretty well -- the Cancer Battle continues, but I'm stable and in the world of Cancer, Stable is always considered a good thing.  

    My my recent CT Scans (late December) showed that my main lung tumor is still stable (no growth) and is small (15 mm), but has been as large at 4 cm at one time.  I am very thankful for Opdivo, the Immunotherapy Med that I honestly feel has saved my life.  Unfortunately, it's still causing me to develop "Pneumonitis" a lung inflammation similar to Pneumonia, that does not seem to want to totally clear up.  Because this is can become very serious (even fatal) they have stopped the Opdivo and I have not had any treament since late in August.  The latest CT Scans also show that is it improving, but it's still there and that's discouraging.  It's looking more and more likely that I will not be able to go back on this treatment and that's a bummer, because I really has worked so well.   I've also been lucky that for me the Pneumontis has always been considered low-grade, but it's been worse each time and they are not very concerned that putting me back on Opdivo may cause it to flare very quickly and it would likely be even worse.   Clearly I don't want to to end up worse off, but it's hard to have to stop a drug that has been so effective in my battle.

  As you my recall my Oncolgist (Dr. Sunkara) who I absoltely adore -- left my local hspital for a wonderful new career oppoirtunmity and that's been really difficult for me, because I really was so confident in her care and we developed an wonderful patient/doctor relationship, which is truly vital in this battle.   I wish so much that she was close enough so that she could continue to be my primary Oncologist, but she's not.   It would be  4-5 hour round trip to see her and I would also have to have all my labs, tests and scans done at a facitlity that is simply much too far from home.    I literally creid the day she told me she was leaving, but I am happy for her and the opporutnity this provides for her and I wish her well.   She has also been wonderful and promoised me from that day, that she will always be there for me, with any questons or concerns and we are keeping in touch via email.  I do hope, in time, to go and see her for a Consult and I have allowed her to continue to have access to all my records, so she can help me with any decisions.    I really had been hoping they would hire another Oncologist who is much like her, so that I did not have to change hospitals, but as now that has not happened, so I have been looking into all my options and have been to two consults/second opinions with a Thoracic Oncolgist, who is part of Mass General Hospital in Boston.

  As for now, I have not made my final decision on who I want to continue with and because I'm not In "treatment" at this time, I really can't make the decision, until the time comes to resume treatment and then choose which team I feel has the best treatment plan for me.   I do like the Oncolgist at MGH/Danvers, but am not happy about having to totally change my Cancer Center, because I love my local Oncology unit and all the nurses and staff there and they have been with me for the last 22 months -- leaving them all behind is a truly a challenge.   I also love that my care has been so close to home and involves a short 5-10 ride from home and is a setting I'm so comfortable with.  I worked at this hospital for many years, my sons where born there and it's very much "home" to me.  Starting all over at this point is almost overwhelming.   And as much as I like the Oncologist I'm seeing for the consults, I already feel a bit like a "number" there -- becuase it such a larger center and is not nearly as personal -- and that too is another issue.

     For now, I'm "free" until the "end of March" and will then have my next CT Scan and we'll go from there.   If I'm still stable, I may be able to stay off treatment even long, but sadly with Stage IV Cancer, we all know at some point, it's giong to come back or change and I will need treatment again.  The hardest part will be decided what I want to do and which team will offer me the best options.   Also another issue, since options are becoming more limited, as time goes one.  I have already been on Chemo, had Radiation and Immunotherapy.  Chemo may have to come back into play, and that will be the least likely thing I want -- the most likely scenario at this point, may be a clinical trial, or to possibly switch to another Immunotherpay Drug (they are two others that have FDA approval), however, they also carry the common side effect of Pneumonitis, so ultimatley, they may be even ben an option?  UGH!

    My plan for the next two months is to try and focus on happy things, and the first will be the birth of my Grand-daughter "Harper Leigh" who is due in five more weeks.  I am so excited and can't wait to meet her, hold her and love her.   I can still remember the days the kids came to tell us the happy news -- it's hard to believe how fast the time has gone by  -- I know the new few weeks will fly by and for me that also means "winter" will soon be over too -- YAY!!