When the Cancer Bomb explodes into the world of someone you love (and changes everything!)

When cancer explodes into your life…  your whole world changes.

At least mine did.

I don’t have a diagnosis of cancer, but I have cancer.  I deal with it every single day.  I read about it, talk about it, and think about it constantly.

 And, I desperately wish that things could go back to the way they were before…

Cancer affects everyone.  Not just the person with the diagnosis, it affects the people that love them, in an intense and crazy way that’s hard to explain and even harder to understand.

In 2017, the Cancer Bomb dropped into our world and changed everything.

 September 2016

I was sitting on my front porch thinking “how could anyone be this lucky?”  I was one month away from marrying the love of my life and his four amazing children and I had just quit a job where I had spent most of my adult life (18 years) and accepted a new job that allowed me to work from home or from anywhere.

Working from home was a game changer!  The flexibility you have when you’re working from home is INSANE.  Don’t get me wrong, I actually LOVED my old job, (but it runs 24-hours a day, which meant I had to be ready and available 24 hours a day).  It was perfect when I was single, and I could work 60-hours a week.

So, there I am, thinking about all of these huge changes in my life and at the same time, I am completely floored by the fact that anyone could be this lucky…

As I look back to that moment now, I realize that God set this whole plan in motion so that I would be able to manage what was coming…

My family is close… I mean super close.   Until I met my husband (who is literally the man of my dreams!) and my four amazing stepchildren, my parents have been the center of my life for a really long time!

My dad was a Police Chief before he retired.  As a commander, he is organized, structured and able to make split-second decisions.  This guy is on top of his game.  If you have a problem, he knows how to solve it.  He is the first person I call when something is bothering me, or I am not sure how to proceed.  I think he literally knows everything.

My mom is the most supportive person I have ever met. People LOVE her.  She is sweet and kind and will support you through anything.  She’s the one you call when your world is falling apart because she will help you through it.

We live in Upstate New York.  My parents are very active in their Church, they volunteer for the Salvation Army and they travel in their Jayco and camp everywhere.  They even spent a month in Florida last year.

 2017

In January of 2017, my Dad was having “trouble” with his eyes.  By trouble, I mean he thought he was losing his sight, his peripheral vision was already gone, and he was having significant visual variations that were changing constantly and at an alarming rate.

We saw at least 10 eye doctors who all said the same thing, they couldn’t find anything in his eyes that would account for these kinds of issues.  They ordered full work-ups and further testing and referred us to other doctors.

But now the visual changes were intensifying.  And, he was getting new symptoms everyday….

One day he woke up and he could barely hear anything.  We were screaming at him, so he could hear us.  He developed a pain in his hip that was so bad that he couldn’t walk, and we began to use a wheelchair.

At this point, these symptoms are rapidly changing and “spiraling” out of control.  In fact, day-to-day the changes are so insane you can barely tell it’s the same guy.

They did a ton of workups.  And, one of those workups included a CAT Scan on his brain, and that’s when they saw it… A tumor was present on his lung.

They did a biopsy and diagnosed him with Small Cell Lung Cancer.  This is a fast-moving, super aggressive cancer caused by smoking that loves to travel to the brain.  And the symptoms that he was having, were pretty typical for someone whose Cancer had spread to the brain.

The doctors felt strongly that’s what was happening here.  But the crazy part was, every test (except the lung) was showing no cancer.

It was becoming pretty clear that we needed a different kind of help, so, we traveled to New York City, which is about 2 hours away from where we live and within 20 minutes we were admitted into the Hospital at Mount Sinai.

They did another full round of work-ups.  Pet Scan’s, biopsy’s, spinal taps and (literally) a ton more CAT scans (My dad can’t have an MRI, because of a pacemaker type-device that is implanted in his chest).  We stayed down there for a week and ½ and I have to tell you, it was a rough week and a half for daddy.

Every day we were anxiously waiting for the results of each test to come back the news was good…they couldn’t find the cancer ANYWHERE except contained in the right lung. 

But as they were working through these tests one by one, there was also a TON of discussion (but no official confirmation) about a very rare syndrome called Paraneoplastic syndrome.  It only affects a small percentage of people, (approx. 3% of people) who are diagnosed with certain types of cancer and one of them is Small Cell Lung Cancer.

I’m not a doctor, but I’ll do the best I can…

Paraneoplastic is a disorder that (for us) has created all kinds of neurological issues.  I mean big issues, like loss of hearing and loss of eyesight.  This syndrome has been seriously problematic.  It’s created several neurological and pain related “symptoms” (we don’t know what else to call them) … that change frequently, making it really difficult to get them under control.

And some of those “symptoms” have created permanent damage that will never be reversed.  I should also tell you, that doctors are REALLY hesitant to officially diagnose this syndrome.  The treatment plan for the syndrome… Treat the cancer.

We needed to begin Chemotherapy as soon as possible.

Chemo, as you may already know is a reoccurring treatment and is standard across the board.  Because we lived so far away, it was decided it would be better for us to do chemo at home.  We headed home with the understanding that chemo was the first order of business.

My mom was already on the phone and had an appointment the following week with New York Oncology and Hematology.

But we didn’t make it…

About the second day out of the hospital, we ended up in the emergency room upstate.  We couldn’t get the nausea (a new and super fun symptom) under control.

After a full week in the hospital and a ton of conversations with multiple Dr.’s who (again) suspected that all of these neurological complications were the result of the cancer spreading to his brain, we had the Worst.  Week.  Ever.

“They’ve seen this before”, they told us, “the cancer had spread to his brain.”  “And, judging by the intensity of the symptoms, they indicated that he had days to weeks left.”

We spent another week crying and completely stressed out while they did several more tests to confirm that the cancer had not spread, and when “we passed” all the tests (again!) we received our first dose of chemotherapy.

After successfully completing the chemotherapy treatment, it was recommended that we also complete a course of radiation.

So, we headed back down to New York City, this time to establish ourselves with Memorial Sloan Kettering Cancer Center.  They recommended we complete 7 weeks of radiation. Radiation is very specific and while I probably can’t explain it like the Drs. can, the type of machine used and the way its delivered matters tremendously with radiation.

The other thing about radiation is that its 5 days a week (Monday- Friday) for the amount of time recommended.  Every week.

It was right about here when we got some more bad news about my Dad’s sister.  Aunt Patty who had practically raised my dad (after his parents passed away when he was only 18) was special to all of us.  She was the glue that held this family together…

Her son, my cousin Jeffrey has been battling Prostate Cancer for the last two years.  This journey has been tough, but Jeff is a fighter.  Right up there with Daddy, he’s one of the strongest guys I have ever met.

They had found some legions on Aunt Patty’s liver and after some time they confirmed that we were talking about Liver Cancer.

Daddy started Radiation and began staying in the City at the Helmsley Medical Tower during the weekdays and traveling home on the weekends.  We completed the entire treatment regimen 2-days before we left for a full family vacation (with 85 of our closest family members!)

Pet Scans and CAT scans show the cancer had not moved during treatment.  Treatment was finished, and we had taken the most aggressive approach to deal with this.

So, the Cancer was stabilized as we wanted it, but the symptoms of this syndrome were horrible, no matter what we did or how hard we worked at it with physical therapy, medication or Dr. visits, we could not get the symptoms under control.  Even when we caught a break and one symptom disappeared, another one popped up.

By the end of August, daddy was now fully blind in one eye and had lost all of his hearing.  No joke.

September 11th, Aunt Patty, daddy’s sister went to Heaven to be with the angels.  Because daddy was totally deaf at this point, and I was distraught and heartbroken… My husband (who is brilliant) helped me navigate this tragedy.

Previously with the hearing loss, there had been a TON of miscommunication.  We were not prepared for this at all and so people ask us a lot “does he know sign language?” “No, he doesn’t know sign language.”  Literally, he became extremely hard of hearing practically overnight and then lost all of his hearing in one day.  We were totally unprepared for this.

So, on the day of my aunt Patty’s passing, we picked up a white dry erase board and I wrote a note telling my dad what had happened and that when he was ready we could head down to meet with the rest of the family ☹.

Worst. Day. Ever.  Until, I realized later, that we are going to have a lot of really bad days…

In November, we had our first “bad scans” since the Cancer was found.  I was completely floored by that news and burst into tears.  I realize that sounds stupid, but in my defense, we had been having scans since the beginning of the year and this thing had NEVER moved.

And now…well, that was another horrible day.  Unfortunately, I missed a ton of information during that visit because I was hysterical.  Daddy actually said towards the end, “You gotta pull it together for me kid!”  “You’re my ears!”

What I didn’t know, when I called my husband right after that appointment crying, was that they had found a large tumor in (my husband’s) bladder.   He had been undergoing some tests, and on this very same day, the census was that this tumor needed to be removed asap.  Because what we needed more than anything at that moment, was Bladder Cancer.

Here we freaking go again… ☹

The good news is… if you’re going to get cancer, Bladder is the one to get!  As long as the tumor doesn’t penetrate into the walls of the bladder, the tumor gets removed and then you get checked every few months (because they come back).

Not a cake-walk by any means… How they remove the tumor is not very comfortable. But this was nothing (thankfully) like Lung Cancer.

Current Status: March 2018

Jeffrey is getting stronger every day.  In September, he will be walking his daughter down the aisle at her wedding.  🙂

My dad is doing better than he has in the entire 15 months we have been doing this cancer thing.  The treatment that was recommended for us, Immunotherapy, doesn’t work for everyone, but it’s working for us!  The symptoms have really calmed down and a recent medication change has made him feel overall, so much better. In fact, we are planning a summer of camping and fishing!

My husband’s hanging in there as well! The tumor was removed without issue and they found several more tumors at his 3-month checkup.  So, we headed down to Sloan where he is scheduled for another surgery and a 6-week treatment to follow.

 

 

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