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!


Friday, July 22, 2016

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!!