Sunday, November 19, 2017

STARING DOWN MY MORTALITY

As we grow up and become parents, friends, etc., we know life doesn't last forever.  We don't know when it will happen, but it "happens to all of us."  Well, with a Lung Cancer diagnosis, we realistically open our eyes and ears and know that end may come much quicker than we thought.  That's when we fight with a flame we never knew we had inside of us.

This fight is also about awareness.  How many of us knew what we know now when we were diagnosed?  Now is the time to spread awareness.  This fight, our treatment, forces us to hold close what is important, love what is dear, and do what is love.  This has forced me to think about my own mortality.  

If God wants me before I can become an old lady with a cane, slippers and my robe, then I want to do as much as I can to help others before my time is up.  Our family has participated and created many community projects.

Now, while I am feeling well, I have decided what I would like to do as another way spread lung cancer awareness is donate my wedding dress in the name of Lung Cancer Awareness.  I have found an organization that takes "cleaned" wedding  dresses and with a team of seamstresses across the country, they create gowns to be worn by stillborn babies and preemie babies who crossed that bridge with the others.  Parents should never have to experience the loss of a child, but in this world, we know it happens too often.  "Angel Gowns" have a team of volunteers who meet monthly and use wedding gowns to create gowns for the babies to be buried in.  I, as a mother, cannot imagine being told to go home and pick something out.

PLEASE consider joining me in making one thing in these parents lives, a bit more bearable. 

If you would like to participate, please contact me (contact form is on right side of my blog).  Below are the details:

  • dress must have been cleaned
  • dress is mailed at your expense
  • PLEASE consider adding a roll 3/8 or 5/8 white satin ribbon to help make the angel
  • if there is a portion of the dress you'd like to keep, please use scissors and cut it off before mailing the dress
  • Add a note with your name, date of your wedding and mention your donation is help spread lung cancer awareness
This is NOT a 501(c)3, so your donation will not be tax deductible.

I hope to hear from many of you.  God Bless and Have a Wonderful Thanksgiving.

Below is a picture of my wedding gown that I will be mailing.  The second picture is a sample of the Angel Gowns that are made from our dresses.



p.s.  they accept flower girl white dresses as well 

Monday, November 6, 2017

IS THIS NEWS GOOD OR BAD?

I have always been honest in all of my writings.  Whether it's for my blog, Lungevity or LungCancer.net, I say the good with the bad.  So here is what I know and don't know.

As you know from reading my blog, I am preparing for my next TURBT this Thursday, Nov. 9th.  I had a hard time with the last two (which had one tumor) so this time knowing I have 5 plus, I'm extremely nervous.

I'm nervous.  Take that with a grain of salt.  Doc chose to switch my medications last week.  She wants me to take Klonopin instead of Xanax.  Ok, I thought.  Let's try it.  I took it for 3 days. NO. NO. AND NO.  On day 3 and 4, I was a basketcase.  Hands shaking, voice shaking, crying if I couldn't find the new roll of toilet paper.  I was a mess.  I couldn't stop thinking, "I have cancer.  I'm going to die."  This is what we say at initial diagnosis.  Not four years in.  So I called my doctor on call and he said to immediately stop taking new stuff and go back to old until I talk to my doctor this week.  That phone call took place yesterday and I can't begin to tell you how much better I feel.

Now on to the lungs.  My latest CT scan does show several minor/tiny changes.  Multiple lung nodules and lymph nodes are stable - no change.  One nodule grew by 4mm.  And a new one has appeared. 3mm.

Bottom line my doctor is ecstatic about my lungs....still.  She feels since I have tolerated Opdivo for so well for so long that I am the 1% of patients that make it to/past 5 years.  (My 4 year canserversary is this January).  She feels even though there are very minor changes, the other nodules staying the same proves to her Opdivo is still working and we will continue it.  She is cautious because of new growth, but it is so small we will simply watch it during my every 3 month scans. She specifically said to me, "even with these changes I am no where near saying we are at the end of the road."  This is a great thing!

The lung scans also show I have "moderate diverticulitis."  This may explain my stomach issues and a diet change can possibly change this.

So overall, good scans.  I say that lightly because the day I found out about the tiny growth, was one of the days on the new medications, so I was a basketcase.  Now that I'm back on my original, I'm ok with this - no growth means I'm still winning. As I said earlier, "I have cancer  I'm going to fight this monster and kick its ass."



GOTTA KEEP UP YOUR SPIRITS WHILE GOING TO CHEMO/IMMUNOTHERAPY, SO WHY NOT HAVE FUN.
(P.S.  Nurses were filming the entire thing while laughing hysterically.  The poor woman in the beginning in the red vest was a volunteer and had NO idea what was going on)
The volunteer must have worked the front desk because as we were exiting the building she started yelling to her co-workers, THERE SHE IS!!

Wednesday, October 18, 2017

Bladder Cancer News

Four months ago, my Bladder Cancer was found by accident while getting scans to check on my Lung Cancer.  A cystoscopy is a procedure that allows your doctor to examine the lining of your bladder and the tube that carries urine out of your body (urethra). A hollow tube (cystoscope) equipped with a lens is inserted into your urethra and slowly advanced into your bladder. I had my first cystoscope on July 11, 2017, confirmed it was a tumor and was scheduled for the TURBT surgical  procedure.  My TURBT was performed and confirmed it was a tumor and it was only on the lining of my bladder.  TURBT is a procedure in which bladder tumors can be removed from the bladder wall. This is a procedure performed completely with a scope that is inserted through the urethra into the bladder. It is generally performed in the hospital setting as an outpatient with the patient anesthetized.

Protocol for patients after having a TURBT with tumors only on the lining entail:
  • For six weeks, you go one day a week to your Urologist.  He uses a catheter to put the chemotherapy/immunotherapy solution directly into your bladder.
There are two medications used for this treatment.  BCG - is a form of immunotherapy, therefore I cannot have it due to already being on immunotherapy Opdivo for my lungs every two weeks.  Mitomycin is the second medication.  I began this and during week three developed significant side effects and was told to stop.  I was also told we would wait for another cystoscope in October.  

Well, today was that day.  The day.  The first time we would look in my bladder since removing the one tumor.  He began the procedure and we could instantly see on the monitor as the tube was being moved in.  

What I saw was horrifying.  A lot of things that looked like my originial tumor in various spots on my bladder.  My Urologist immediately withdrew the cystoscope and said, "We see 4 and I didn't even look around.  No need to make you look at it now.  I'll take care of it in surgery."

So almost exactly 3 months after having the TURBT the last time (and everything looked clear and great), there now appears  4 new tumors are growing and we don't know how many there are.  The plan is November 9, 2017, I will have another TURBT, he will scrape my entire bladder, then we do the cystoscope 3 months after - February 18, 2018.

Certainly not the news I was looking for but onward I go.  I know I can have several TURBTS but I can't imagine getting this done every 3 months.  Not sure how that will go but will certainly keep you informed.

Sunday, September 24, 2017

Update and What's Happening

Wow, I just realized it has been quite a while since my last update.  Part of that is because it was a rough few months, but also, part of it is due to me writing for LungCancer.net.  My apologies to those of you who follow my progress via my blog.

Let's start with my Lung Cancer.  I still have scans every 3 months and thus far my Opdivo is working fantastic.  Each scan shows either NO growth or slight shrinkage of my tumors.  This is great news.

Now the not so great news.  As I posted a while back, they discovered that I have Bladder Cancer as well.  It is NOT metastatic.  It is a separate cancer.  In July, I had Bladder Surgery and the tumor was removed.  The plan was for me to get six immunotherapy treatments which would be placed in my bladder via a catheter.  I then I had keep it in there for 2 hours.

Well, as you know, my Opdivo is an immunotherapy.  When my Oncologist found out, she freaked.  She immediately called the Urologist to discuss what was going on.  The final decision was that I was to stop the Bladder Cancer therapy because as we know there have been years upon years of studies on immunotherapies BUT NONE for people who are having 2 different immunotherapies at the same time.

Okay, so now what?  Apparently there is a different chemotherapy/immunotherapy drug called Mytomycin that they decided would be a better choice.  I began these treatments in August.  The first two or three weren't too bad.  A bit of pain for a day or two and trouble urinating.

Then the bottom fell out.  On my fourth treatment, I was in extreme pain in my bladder.  It was spasming.  I felt a constant urge to pee!!  And I mean constant.  Then I broke out in hives from my neck to my toes. Between the pain and itching, I didn't know where to begin.  This lasted 9 days.  Of course, I called the Urologist and just my luck he was on vacation.  The nurse did reach him and he said that I should stop my treatments immediately (just the bladder) and we would wait until my next scans in October to discuss what to do.

The probability of Bladder Cancer tumors coming back is high - even with treatment after removal.  So I'm not sure where this leads me.  Since these two drugs are the only options for me right now, we have to wait and see.  At least both doctors are in agreement that my Lung Cancer is the priority.  

I will update again soon, I promise.  As soon as I know what is going on. In the meantime, I will just continue my Opdivo every two weeks.