Life Event

[Lopaka KaMars]

Aloha Bro,

It's very uplifting to hear you're doing better and better. Will always have prayers for you my brother. Stay safe and have a blessed Friday and weekend.

Lopaka

 

[Darzoy]

prayers

 

[Medusa50]

It was 2 years ago today I received the news no one ever wants to hear. The words “we found a mass on your prostate” still resonate with me. If you asked me back then would I be here now, my answer would have been I don’t think so. It wasn’t until after several more tests were done did I understand the full gravity of it all. Stage IV metastatic disease that had spread throughout my skeletal system.

Fast forward 2 years. What have I learned and more importantly what have I done and what have I been given. Chemotherapy sucks. I don’t know of anything else that made every part of my body painful. My hair hurt if that’s possible. Just when you thought it couldn’t get any worse, radiation treatments. At first you just lie there. Nothing uncomfortable and nothing touches you. After number 7 the effects started. It was a very dark time.

My life changed. I no longer have the energy I used to. My hair grew back but it’s straw now. I look more like the Grinch most days. Sometimes it takes several minutes to get out of bed, to stand, to get up after kneeling down. I’m cold most of the time but thanks to andro deprivation therapy I have hot flashes that make me sweat uncontrollably. Summer months are fun.

I take 11 pills every day. A 30 day supply for one drug is $11,000. In addition I need 8 injectables every year, once each quarter at a cost of $26,000 each. The insurance company voided my policy January 1 without warning. I did my best to remain composed on the phone but watching my wife lose it with them was tough. She never did anything to deserve this burden.

I’ve learned what really matters. Faith has become a very important aspect of my life. Time with loved ones. I worked too much and didn’t value time as I should have. Like youth, it is gone quicker than you realize. My life is harder today than it was. I feel I’ve aged more in 2 years than any other time in my life. It’s important to be a good person to others and to give back.

I’ve done things. I’m a better human being. I reconciled with my mother before she passed. It made me feel better but more importantly it made her feel good. I’m a better husband. I’ve told my wife how much I love her. I clean up after myself more and make it a point to help carry the groceries in, warm up her car for her and contribute more than I had in the past.

I’ve begun walking and am up to 2 miles a day. Despite my chronic pain I feel more capable than before and my vitals are good. I wake up each day and take on projects that many would say are too aggressive but I need to push myself. I’m not just existing or enduring. I’m living more fully and overcoming.

I’ve been given a lot. Some could say I’ve been given cancer. A death sentence. A wake up call, a kick in the pants? I’ve been given 2 years with my wife that arguably have been the toughest and the best at the same time. Whenever I feel down I remind myself that leaving her here alone would be the worst sentence anyone could invoke. I’m not about to let that happen.

We have shared so many priceless moments. Two years ago before Christmas I started feeling sick. I remember feeling guilty I hadn’t helped decorate the tree as much as I had previously. This year I did everything. All the batteries were put in, ornaments from 30 plus years of travel were arranged and there were a host of things that represented us all over it. It wasn’t just a Christmas tree. It was the tree of life. Our life together. A lifetime of memories.

It may have been 2 years ago but I remember it as if it was yesterday. The doctors told me they found something and the room was silent. I put my hands behind my head and after contemplating what I had just been told I said, “Ok tell me what I have to do!”

I ask myself that question often. The answer is always the same.

Whatever I want. The only thing standing in my way is me.


Now move!

 

[Tom.]

I take 11 pills every day. A 30 day supply for one drug is $11,000. In addition I need 8 injectables every year, once each quarter at a cost of $26,000 each. The insurance company voided my policy January 1 without warning. I did my best to remain composed on the phone but watching my wife lose it with them was tough. She never did anything to deserve this burden.

Thanks for the update and wise words........

Wow, i wonder if the drugs are really that expensive to make or is it just the manufacturers that inflate the prices, simply because they know it's something people must have?

Those prices are insane, and now you say the insurance company have stopped helping you.... so what do you do now?

 

[Medusa50]

Thanks for the update and wise words........

Wow, i wonder if the drugs are really that expensive to make or is it just the manufacturers that inflate the prices, simply because they know it's something people must have?

Those prices are insane, and now you say the insurance company have stopped helping you.... so what do you do now?

It took 17 days of fighting with insurance. My policy was reinstated but only after filing a complaint with a government agency. Every day is a new hurdle.

 

[Tom.]

It took 17 days of fighting with insurance. My policy was reinstated but only after filing a complaint with a government agency. Every day is a new hurdle.

Wow, it should not have to be like that.
So it's true American insurance companies do everything they can to not pay/help their customers?
Guess that is why a certain someone had enough!

Wonder how many they decide not to help, and the poor person is too weak to fight them, or have no one to fight for them. Disgusting.......
glad to hear you got help, so they have to continue aiding you.

i wish you all the best

 

[Titan X]

thank you for continuing to update us on you condition. i’m sure it’s hard to talk about but we do appreciate it. Happy to hear about your insurance being reinstated. Continue the fight.

 

[Medusa50]

thank you for continuing to update us on you condition. i’m sure it’s hard to talk about but we do appreciate it. Happy to hear about your insurance being reinstated. Continue the fight.

Thanks. I feel it is important to talk about what your experience has been. There are members here who have been there especially when things have been challenging. It helps coping and at the same time my hope is to encourage others to get tested, value each day and never give up hope. My struggle hasn’t been as hard as some but the mindset to have is the same. Do whatever you can until you can’t.

 

[Medusa50]

Passing this info along if anyone would like to join a virtual session talking about prostate cancer & screening. You need to register to attend by emailing Leticia. I included her email. I hope some folks join.

 

[Medusa50]

Yesterday was a great day. I received my PSA results. Lowest reading so far at only 0.014. The PSA is considered a cancer marker for me. No movement in the number indicates the cancer is not active. News of the results made my wife cry. We both understood the significance.

We just returned from a brief trip out of state. A group of friends all drove to Ohio for a bit of a road rally. Having had a beautiful trip we were horrified to have seen an accident on I70 between a sedan and a tractor trailer just outside of Claysville. Three occupants including the driver. Mother and toddler both ejected. It was Mothers Day.

There are a lot of things that we look at every day. Minor setbacks. It’s been raining nonstop for the last week since returning. It took nearly a month to get a new quarter window for one of our cars. There are days when I have a hard time standing up. Does any of that really matter? Yes I know they are irritating and I’m not saying we should all just ignore everything that goes wrong in life.

I do my best to have the perspective that I should be thankful for everything I’m given. Just before leaving for Ohio I ran to the store. I rarely go anywhere and so I was surprised to see a large bolt had gone through my rear tire. We weren’t taking the truck, I saw it in my driveway so I was able to get home, I wasn’t stranded anywhere and its easily fixed.

I thanked God for allowing me to have that road hazard under those circumstances and despite developing cancer I thank Him for allowing me to be here with my wife every day. Being here and not leaving her side is the most important thing to me. Nothing else matters.