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".

Zeva

Skye

   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,

    Lisa  

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!  

Oh HAPPY DAY!!!

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 temps...it 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.       

   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

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!!  

 

Merry Christmas

Merry Christmas !!

November is Lung Cancer Awareness Month!!

  Happy November!!

     I am sorry that I am so behind in keeping this blog up to date.  I just have been feeling so wiped out and being on the computer for any length of time also "kills" my neck and back.  Thankfully this has more to do with the Fibromyalgia Battle than it does the Cancer battle and that a good thing.

    As for me and my battle -- I'm now 19 months since the day I was diagnosed (3/26/15)and still taking each day as they come.  I'm currently on another treatment break (from Opdivo), which is the Immunotherapy Drug I'm now on and have been for almost a year.  Unfortunately it has a lot of side effects and I have developed Pneumonitis for the third time.   UGH!   It's low grade, so they had again stopped my treatment and I'll go back on December 1st and see how it's going.  I do HOPE I can go back on the Opdivo, as it does seem to work for me, despite the side effects.  Jump back to last November, I had learned that my lung tumor had come back and was quite aggressive -- I was immediately started on Radiation and began my Opdivo treatments in December.  My tumor is currently "stable" and significantly smaller that it was last year -- It's gone form 4.1 X 2.4 cm to 18mm, which is wonderful.  

      But, I did want to tell you a bit more about Lung Cancer and share the November is Lung Cancer Awareness Month to help promote more awareness and to share some fact about Lung Cancer!!

     Lung Cancer is the deadliest of ALL the Cancers -- and I admit, until I learned I had Stage IV Lung Cancer I had no idea.   I would have guessed Breast Cancer or possibly Colon Cancer, but I would have been wrong.   Sadly Lung Cancer has a huge "Stigma" attached to it and that is "Smoking".   It's as if everyone assumes that people with Lung Cancer are or were all smokes and therefore, they did this to themselves.  Now how sad is that.    The fact is every day people are diagnosed with Lung Cancer that have never smoked -- there are many ways to get this dreaded illness and more that I'm sure we do not even know about yet.

     I want to thank everyone who has continued to support me through this battle.  It's getting hard and harder and as time goes on, so do other lives and people kind of forget how hard this is for me.  On top of that  I also recently lost my Primary Oncologist, Dr. Rajitha Sunkara who I have loved and been with since the beginning.  She is been excellent and I have felt so confident in her care and her treatment plan, not to mention that she was affiliated with my local hospital, which allowed me to have the majority of my treatments so close to home.    I will miss her terrible, but I am happy that she has been offered a wonderful Thoracic Oncology position at Dana Farber and will be affiliated with their South Shore Hospital.  Sadly that makes it much too long of a drive for me to see her for ALL my care, but she plans to follow me and will help me with any decisions and second opinions, as needed.  We will definitely be in touch and since I'm currently "off" treatment, I plan to continue to care at my local hospital.  I will hope in time that I'll find another Oncologist who I love as much as I have loved  her and the care she's give me.  I truly feel she has saved me life, especially when she "talked me into trying OpdivO' something i was very afraid to do.  I now feel it  saved my life and hope it will continue to do so.  My Sage of Cancer is not curable - but is treatment!   I hope and pray every day that I can battle it until the time there will be a CURE!!

    Today, I went to a local Support Group but was sad to find out that it's not likely to continue much longer as there has not been much interest.   They started meeting last December and meet monthly, but have had a hard time getting the word out, so there has not been many people at the meetings!  Bummer.   There was only one other person there along with the Group Coach who is also battling Stage IV Non-Small Cell Lung Cancer and has been for many years.  I really had hoped to connect with more people my age, to help me with ideas and support, so it was disappointing.  And some of what we talked about, I learned are support and care I'm not eligible for since I'm under 65 and not income eligible.  Geesh!! -- Young people get cancer too!!!   I do plan to go back next month if they hold it again, but if not I will continue in my online groups which have been awesome.  If you would like to learn MORE about Lung Cancer -- here are some sites that share a wealth of information --- If you are a new Cancer patient (any type) --  and need a friend, please message me!!

American Cancer Society/Cancer.org
CancerGrace

Dana Farber Cancer Institute

Inspire.com

Lungivity

LungForce

Thanks for stopping by....

Some Happy News to share....

I am very happy and excited to let you all know that I has the pleasure of going with Alex, (my son) and Acacia (my Daughter-in-Law) to her Ultrasound on Friday.   We have been waiting patiently for a long time for this one because we knew that it would be very likely they  would be able to find out if the baby is a Boy or Girl!!
And I'm delighted to tell you all that they are expecting a  Sweet, Adorable, Healthy and Active - Baby GIRL!!

  As a Mom who has raised two son (who I LOVE with all my heart), and having lost my only daughter as a stillborn, I had been hoping that we would be adding a baby girl into our lives.   Ultimately, all we really wanted was a Healthy Baby, but I admit I am "Tickled Pink" to know that it's going to be a Baby Girl.
   Today, I had my first "Baby Girl" online shopping spree and it was so much fun.   I found so many adorable outfits and now can hardly wait for this sweet baby to be born.    Acacia is halfway through her Pregnancy now and is due on February 18th.   Both she and Alex have birthday's on the the 16th of the month and were also married on the 16th, so we think it would be extra special if this baby arrived on the 16th too!!
    I am thrilled that I'm finally going to have my very first Grandchild, and will continue to fight my cancer battle and be here to love and cherish her for a long time.  
   

    

Long overdue update....

  It's been ages since I have posted here, mostly because I have spent a lot of time feeling like crap and have not really had much news to share, after being off of Opdivo for several weeks.  We had all hoped the treatment break would help me feel better and also allow the Pneumonitis to clear.

    I was finally cleared to re-start my treatment in August.   I had my first infusion on the 17th and a second one of the 31st and both went fine.  I was scheduled for one more than then was going to have my next CT Scan to see how it was working and to make sure there was no signs of the Pneumonitis.

   Thankfully, I felt pretty good during that "off" week, which was wonderful especially since my son, Brian, was home for a short visit.  It was awesome to be with him, but the time flew by and he headed back to San Diego on the 29th.   Ironically, he woke up that morning and had a lot of pain in his knee and actually took the time to go to the drugstore and buy a support to wear for the long flight home. He also bought some Ibuprofen and started taking it that morning, thinking he had slept wrong or something?   The next morning, (back in San Diego) he woke up in intense pain and had a huge amount of swelling and could barely walk or move around.   He managed to hobble  to a "work" meeting and then headed directly to Urgent Care, where he went spent the afternoon having all kinds of tests.  Later in the day, they told him he need to go to the ER, because he needed more care, than they can do there and had set him up to be seen by an Ortho Doc as well as an Internal Med doc so they could drain some of the fluid off his knee.  

  Long story short, he had that done (quite a painful procedure), which unfortunately did not give him any relief.  They then put him on IV Pain meds and he started running a fever and his white counts were elevated, so he ended up having to be admitted to the hospital that night.   His admitting diagnosis was a question of "Septic Arthritis".   He was in severe pain and even after draining 50 cc of fluid, he was not improving.  He spent the next two days there and in the end, they determined he had a very rare form of Arthritis that was actually caused by Salmonella.   He had had a case of what he thought was "food poisoning" about two weeks before he was was here.    The Salmonella showed up in this lab work and they put it all together.   Some how the 'bacteria' from the Salmonella settles into joints (often knees) and causes this sudden onset of acute pain and inflammation.  It's also most common in males under 40, but is very rare, typically under 20,000 cases per year.   Luckily, one of his docs had see it once before (about five years prior) and he was the one who figured it out. Otherwise, God knows how many more tests he may have needed to determine what this was.    He was treated with IV Antibiotics and Anti-Inflammatory meds and eventually discharged and has since had a follow up with his PCP.    I was super stressed and found it very difficult to my have my son in the hospital 3,000+ mile away.   Plus, Brian has never really been sick much in his entire life (he's now 29).  Even as a child he never missed school and rarely even had a cold.  

   That was a very difficult week for me, as it's very hard on any Mom to have their child (no matter what age) be so far from home and be sick so suddenly.   Plus, I am not well enough to travel, so there was no way I could fly out to be there with him and I felt awful about that.  Thankfully, he kept in touch several times each day and I also received updates from his medical team.   I'm so grateful that he is now on the mend but it's going to take a long time for his knee to be back to normal and to be out of pain.  And, the timing is terrible, since he is also in the process moving and changing jobs all on top of being in pain!   Argh!!    Hectic and stress for all!!

     On top of that,  I also ended up in the ER on the Friday night of Labor Day Weekend with intense belly pain and a fever (just two days after my Infusion) and any time you develop a fever over 100.5, after treatment, you need to call your Gynecologist, which is what I did and she sent me to the ER.  We spent six hours there and had a tons of labs, a chest x-ray and a CT of my Lung and Abdomen which showed I have Pneumonia in my left lung...UGH!   I was discharged that night as the initial reports looked good, but the day day, the ER doc who had treated me called to tell me the the second reading of my scans,  clearly showed the Pneumonia.   She then contacted my Oncologist and by then my fever was gone.  I was exhausted, but otherwise okay.   I also had/have a type of "Walking Pneumonia" and although she did call me in a RX for antibiotics, she told me not to take them unless the fever comes back for any symptoms, luckily that has not happened.   I have no cough, pain or shortness of breath, just the same old fatigue and nausea and of course the bouts of belly pain, that we still don't really understand.  My belly CT scan was fine and there was NO new cancer!!  I'll be seeing Dr. Sunkara on the 21st, but we know that I need to again stop the Opdivo, as it is the cause of this and now it's more likely I will not be able to go back on it.   So back the the drawing board for a new game plan?    Hoping for the best and still taking One Day at a Time!

 

My latest update.....

  I am a bit behind in keeping this blog updated, but that's also because I have not had a lot of news to share lately.   I have been on a treatment break since May and this week is the first time I've been back to see my Oncologist/

    I started the week with new CT Scans (on Monday) and saw Dr. Sunkara on Tuesday for the results which are basically good.  My tumor has continued to shrink and the newer nodules that showed on my May Scan are now gone.   But, now I have "Pneumonitis" which is a broad term given to various types of "Lung Inflammations" - those not caused by an infection, like Pneumonia as an example.  It's also a VERY common side effect of Opdivo and can become quite serious, even fatal. Thankfully, mine is mild, and is asymptomatic, which is good, because it means that I do not need treatment, which would be Steroids, usually Prednisone, which is truly hate.  It's just one of the drugs that does not agree with me and it makes me turn into a "bitch".  I feel like it changes my personality and I hate how it makes me feel. Plus, it's also a drug that makes the Immunotherapy drug, less effective, so they don't want to give it too often or for too long when you are on this type of therapy.    If I develop any symptoms (cough, shortness of breath, chest pain, difficulty breathing, etc., ) then I need to call right away and determine what is next. 

   The downside, is that I need to stay off the the Opdivo for a least four more weeks and will be re-evaluated at that time.   We know that the Opdivo continues to work, even on a a treatment break, but that won't last forever and since it's worked so well for me (despite the side effects), I know I don't have a lot of other options.  I also am somewhat fearful of having the Pneumonitis get worse and know that if that happens for too long, they will take me off the the Opdivo, and that could be permanent.  We do hope it will clear on it's own and it has improved somewhat since the Bronch, but is also now in my left lung, whereas it was only in my right lung (tumor lung) before.

  I also saw Dr. Mouchantif (my Pulmonary Surgeon) for my one month follow up (to the Bronchoscopy) and he had already seen my scans and had also consulted with Dr. Sunkara.  They  they both feel this will clear and hopefully not come back. 

   My belly CT Scan was fine, which is awesome and I have not had any new isuses with the belly pain or diarrhea that was so awful in the past.  Dr. Sunkara also prescribed me Lomitil which I will now have "on hand" to take, if I have any more of those miserable bouts.   It's a med that will help quickly alleviate the awful cramping pain and will also to prevent the severe diarrhea.    I am happy to know I have this "Just in case", but do hope I won't need to use it and that those bouts are over.   But, again, this is also a known side effect of the Opdivo and may return when I go back on it.   As you can guess, this is not easy and these issues have always been worrisome.  This treatment is still do new and has so many potential side effects.   But, it also works so well for many, including me and that's why I know feel it's my best option.   It's done a fantastic job with my tumor and there are NO signs of any new cancer, and that is all very promising.

     The hard part is that I still feel crappy and the fatigue is still horrible.  There has been NO improvement and this week my nausea is worse than it had been for quite some time?  I'm back to taking Zofran almost daily and despite naps, I still am exhausted.  And I'm finding I really now mine the Summer heat.   I can no longer tolerate high temps or high humidity and we've had some hot days lately.  Thankfully we have central AC now, so I am very comfy and cool at home, but staying inside all the the time, is not fun.   We do that ALL winter and typically I want to be outside as much as I can in the Summer.   To think I was once a HUGE beach lover and would spend countless hours there every year, I absolutely loved it and it was my favorite place to be.  I really do miss that, but right now, it would only make me feel worse and that's not at all how I want to feel.

    Overall, I am very thankful and grateful that my tumor is now tiny and that my brain tumor has never returned.   But, boy would I like to feel better and be able to get out a lot more.  I miss a lot of events, because I feel to tired or just too lousy to go.  No one wants to go out and do things when you feel sick and most days I still feel like I have the Flu.   I also miss traveling to San Diego and loved seeing Brian more, but it's not worth it now, plus money is tight with all my medical expenses and our lousy coverage.    I do HOPE for better days and hope the fatigue and overall sick feeling will at some point improve.  I really hate the idea of living the rest of my life, feeling like I do now.   I have my new Grand Baby coming and want to be able to baby sit and spend lots of time with him/her!

       Hoping for better days, but also grateful to know that my treatment is working and still hoping that they will fine a cure or better treatment very soon!!  

  

No New Cancer!!!

     Woohoo!   I had my Bronochosopy last Friday, which went very well.   Just heard from my Pulmonary Surgeon today and found out that there is NO new Cancer, which is wonderful news.  Apprantely, the changes in my lung are a reaction to the Opdivo treaments, so I will be taking a "much-needed" break from the Infusion for another few weeks.   I am very happy about that as it has really been wiping me out, I do hope the break, will allow me to gain back some energy and stamina.

     I go back for my next CT Scans on July 18th and then will meet with Dr. Sunkara the next morning to review them and also make a determination as to whether or not I can re-start the Opdivo, or whether I will need to HOPE for other option.   We has a long discussion at my appointment yesterday and she told me, she really wants me on it, since it clearly has worked wonders in reducing what was a very large and aggressive tumor.   She also told me, that often when they see a tumor come back, that fast and so fierce, many patient's lose their battle within the next six months.  I know now, that I'm one lucky lady and very happy that it responded so well to the Opdivo.  As much as I hate the side effects - constant fatigue, nausea, over all weakness and such, I know fully realize how well it has worked for me.   I had been on the strongest Chemo drugs currently available to treat Lung Cancer and they did not work, so Opdivo (Immunotherapy), looks like it my only HOPE at this time and now I have to hope I can go back on it.

      In the meantime, I am very much looking forward to having a few weeks off and really want to try and enjoy Summer, especially since it's my favorite season.  I'm still pretty wiped out and not feeling so great today, but did have a really good weekend -- best on in months, so I'm hoping that trend will continue.

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