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!   


Tuesday, November 8, 2016

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!!

Thanks for stopping by....

Sunday, September 25, 2016

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.  



Thursday, September 15, 2016

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!