Roni

Next up is my friend Roni, who had smoked, but quit six years prior to her diagnosis. Interestingly, Roni has an ALK mutation, just as I do. The typical profile for someone with an ALK mutation is a young, never smoker with adenocarcinoma. Profiling may be a useful tool for prediction, (time and money saving) but it is dependent upon generalities. I believe it is best to operate under the assumption that there will be exceptions to every ‘rule’, and thankfully Roni was tested for an ALK mutation even though she did not fit the profile. Please welcome Roni:

“I guess I should have known! I shouldn’t have been so surprised. I was a smoker for over 30 years, we lived in a home where radon was present, I frequently suffered from bronchitis, I worked for years in an area that was enveloped in jet fuel fumes and my mom died from lung cancer. But, who actually believes it will happen to them?

It all started with kidney stones…oh, they were bad. I went to the emergency room and after the x-ray, the technician asked me if I ever had pneumonia. He saw a spot on my lung. After 4 days in the hospital trying to pass those blasted stones, my PCP sent me for a CT scan and then to a pulmonologist. When he explained the results of the scan to my husband and me, I fell apart. I couldn’t stop crying.

I should have stopped smoking when my girls were born, or maybe when my mom died or maybe when my dad died the following year or even when my first husband died three years later. I was still young then, I could have quit then, but I was hooked!!! Finally, 15 years later, I did it…I quit smoking!

Six years after that, my oncologist gave me my diagnosis – Stage IIIB Adenocarcinoma with 18 months to 2 years to live. Devasted, I headed home and tried to put everything in order. I took each of my girls on special separate mini vacations so we could have some final quality time together. I bought a cemetery plot and picked out my stone. I made a will. And then I braced for the worst. That was in 2006!

And, here I am, 6 1/2 years later….a little older, a little chubbier and
so very happy.

Why so happy? Well, when I was diagnosed, my youngest grandchild was 6
years old. I knew he would never remember me and how much I loved him and
my other 4 grandchildren. I couldn’t imagine not watching them grow and
develop into the unique individuals I knew they were going to be. I wanted
to be around to celebrate their birthdays and graduations and weddings and
their own children. Well, I might not get to do all of that, but I am
thankful for the many additional years that I have been blessed to live and
be a part of their lives. We have made many memories in the past 6 years.
Just thinking about it makes me smile.

So, how did I get here? Oh you know, the same old road: radiation, surgery
and chemo. Lots and lots of chemo. Years and years of chemo (I think you
get the picture). But then a great thing began to happen. Pharmacies
actually started experimenting with drugs to fight lung cancer! It was
amazing. Even though lung cancer kills more people every year than any
other type of cancer, other cancer treatments seemed to take priority. And,
I was really kind of okay with that. If my husband developed prostate
cancer or one of my girls was found to have breast cancer, I would want
there to be a cure for them. But the tide started to shift a little when
they found out people who did not smoke also got lung cancer. Imagine that!
They weren’t the cause of their own cancer! So, the competition started.
How lucky for some of us. Because I have a certain ALK gene in my tumors, I
have been fortunate enough to be able to take two pills a day to shrink my
tumors and to prolong and improve the quality of my life. I have the
opportunity to get up one more morning and see the sun and thank God for the
beautiful life he has given me. I get to spend one more day with my
wonderful husband, loving daughters and my precious grandchildren.

But, I know it won’t last. When this medicine stops working, maybe there
will be another to take it’s place. Maybe there won’t. Should I sit around
and worry? No. I don’t consider myself to be either positive or negative,
just realistic and very, very thankful. It could always be worse. This
journey does not have a good outcome, but when the end is near, I will not
hesitate to take every pain pill and every treatment necessary to ease my
suffering before I reach my final home.

We are all family in this battle and I pray that each and every one of us
will have the loving support of family and friends, knowledgable doctors and
kind nurses. Blessings to all of you.

Roni”

6 responses to “Roni

  1. Inspiring! Thanks for sharing!!

  2. Thank you for sharing not only your story Linnea, but others’ too.

  3. Thank you for sharing. I am on my 28 month journey. Had a big 60th birthday party and got to see all my relative and close friends. It is a blessing that the ALK drug provide me with quality of life and be able to travel with husband. I read so many inspire story and keep me focus of being happy and thankful each day. Roni, I also would like to see my grandiose to grow up too. May God bless all of us.

  4. Valerie Vanderford

    This is awesome, thanks for sharing Roni, and may God bless you with many, many more reasons to celebrate.

  5. Thank you for sharing. Your words are very touching..touched my heart for sure.

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