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I just wanna do/say the “right” things

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Posted 8/18/2021 1:29 AM (GMT 0)
“They” say attitude goes a long way in “healing”/sustaining and living a quality life.

What if a great attitude is based on denial though?

At our last appointment Jeff’s radiation oncologist explained that doctors who give a life expectancy are usually wrong. The RO said he looks at it more as do these circumstances meet weeks, months, years. When considering brain metastases, he said months.

I would agree that no one can put a number on people. For every person whose case goes “by the book”, there’s another person who has beat all odds, and yet another person who never catches a break and is gone in the blink of an eye. Nonetheless, I don’t think it’s “wrong” to know that it’s within the realm of possibilities that we might only have months left with Jeff.

That doesn’t mean anyone has given up hope or that Jeff has laid down his sword in this battle. In fact, providing that his pain is managed, he actually feels pretty good and he’s still working!!! It’s truly hard to grasp that he could soon slip away.

Our daughter, Channing, went to the appointment yesterday. Our son, Drake, couldn’t make it. I updated Drake with all that we learned, what was going to happen going forward, and the possible timeframe on his father’s life.

Understandably, Drake was upset. Drake promptly went to his father’s house, still upset.

Meanwhile, Jeff is texting me and he’s clearly VERY upset with me indicating that’s NOT what the doctor said.

I mean, what was I even supposed to say? Basically I felt like my position was to argue with Jeff … “you are too dying!” I mean seriously! I didn’t want to clarify the doctor’s words and I DIDN’T, but I also didn’t want to apologize or imply I’m the one who misunderstood.

Drake largely copes with Jeff’s illness by clinging to good news and avoidance. I worry that when Jeff passes (whenever that may be), that Drake will look back on this time with remorse and regret. As it’s possible that Jeff may start to decline in the upcoming months, I again encouraged Drake to spend time with his father.

Jeff in turn tells Drake “he’s fine” and in regards to the brain metastases, that radiation will “fix” it. That’s simply not true, perhaps wonderful if Jeff believes that, but it’s heart wrenching to see our son cling to false hope.

I’m not sure what I “want” by posting this. I’m not even sure this is a good time to close my thoughts. My thoughts are all over the place and often contradicting.

~ Stephanie
Posted 8/18/2021 1:49 AM (GMT 0)
For example, I refuse to categorize myself as incurable, terminal, etc… I have been in denial for the last 12 years. It is one of my tools that I have learned to use. There is nothing wrong with denial….
Posted 8/18/2021 2:08 AM (GMT 0)
Stephanie,

I am sorry to read of Jeff’s situation and your mutual pain. All I can offer is the thought that attitude or hopefulness has little or nothing to do with how long we may live. My Irish father was never depressed, but he was very negative, hated pets, didn’t eat his vegetables, and lived alone for 28 years after my mother passed away. He lived to age 96. Looked good too. Just since January my wife and I have lost three friends, all positive, life engaged people who were taken very quickly. No right or wrong to it. Wishing you well.

Bill
Posted 8/18/2021 9:33 AM (GMT 0)
Stephanie,

In a lot of ways, there is no right or wrong way. (boy, that looks like a weird sentence). It's not exactly denial, what Jeff is doing, and it's not exactly 'being a realist', what you are doing. Each of us has our own way of coping. For years, Kubler-Ross's stages of grief has been kind of a standard description of what it's like.

Might I suggest you get a copy of "Being Mortal" by Atul Gawande, and also, get yourself in touch with the local hospice organizations. No one knows what the path will be for him. He may be fine until he suddenly isn't, or he may see a gradual slide. Either way, having the pieces in place for the next phase is important.

Who knows, maybe the treatment plan will be stunningly successful, and he will go into a long term remission.
Posted 8/18/2021 11:22 AM (GMT 0)

Hello, Stephanie ----

Mindful of your family ...

For me, there's times I really need to talk to someone about my health, but there's also times I don't want my health to "define" a conversation.

People handle the news of a cancer diagnosis in a wide variety of ways.

In my case, my grandfather, my father, and I have all been diagnosed with prostate cancer.

I helped look after my grandfather in the 1970s, when I was growing up, during his final days. It simply because part of my life experience.

I also helped take care of other grandparents in their last years, too.

Years later, my dad was diagnosed with leukemia and then prostate cancer. With leukemia, my dad was hospitalized for 100 days, and I was there every day during that long summer.

These experiences gave me insight into healthcare and cancer treatments. Each person's life experiences prepares each person in very different ways.
Each person has different ways of coping.

Because Dad and I have common threads in our health history, and course of treatments, we are able to discuss things on a deep level.

Ironically, several of my closest friends have also been diagnosed with prostate cancer --- a hometown friend, one of my college roommates, a minister friend of mine, and a teaching colleague.

We are also able to "talk things over" ---- when we need to do so. We all have a rule, though --- our health is just one topic --- we make sure we talk about many OTHER topics, as well.

You have had sudden, and unexpected news in recent months. Everyone is finding their way forward, the best they know how.

Something I have learned over time, in regard to this topic ... grant a sense of GRACE to yourself ... and to others ... as much as you can.

Everyone has different life experiences ... and different ways of coping with the health diagnosis of a family member or friend.

Keep focused on ONE DAY AT A TIME ...

We are here for you & Jeff & your family!

CYCLONE --- # Iowa State University

Post Edited (Cyclone-ISU) : 8/18/2021 10:07:42 AM (GMT-6)

Posted 8/18/2021 4:50 PM (GMT 0)
My husband was given 2 years. We are past 2 year mark at this moment. We have shared most of the diagnosis news with our 2 children. Our daughter is a physician and our son is married to a Nurse practitioner. Both of them know and understand that their father does not have a lot of time left. I'm guessing behind our backs they have decided to spend as much time as possible with us. I'm noticing that they are taking turns spending the weekends with us. We love it! There's little or no cancer talk. Trying to be as normal as possible. Our local friends are keeping us busy because we can't travel with the current treatment schedule which includes neutropenia.
Each day is a blessing. No one knows what tomorrow will bring. As Cyclone stated above.. One day at a time. That's all you can focus on right now. Try and stay positive. Denial is part of reaching acceptance. I think that is the only thing I can recall from my under grad psych. degree.
Posted 8/18/2021 6:18 PM (GMT 0)
Mrs. BD:

“…. Each day is a blessing. No one knows what tomorrow will bring…”. That is so true for not just PC patients, but for everyone. I see the healthiest people have no tomorrow…and I’ve seen just the opposite as well.

I mentioned this in another post…and trust me, I’m not the PSMA sales guy…but you might want to keep your eyes on the Lu-177/PSMA therapy that should be available to hormone resistant patients soon once it is officially FDA approved:

https://www.pcf.org/blog/psma-targeted-therapy-trial-results-new-hope-for-men-with-prostate-cancer/

Thanks,
Jerry
Posted 8/18/2021 9:02 PM (GMT 0)
No real wisdom here, but denial sometimes helps us get through stuff until you can (or have to) deal with it. Hope is also a very powerful thing. I learned through dealing with my mother's Alzheimer's progression that reality therapy is not always the best thing. I'm not implying that you should be less than truthful. Maybe your son just can't handle the whole story yet. It's so hard to know what to do and say. You've been successful balancing the relationships so far. No doubt, you will continue to do the right thing.
Posted 8/18/2021 9:31 PM (GMT 0)
Stephanie, I'm so sorry you are having such a hard time right now. And as I'm sure you know it's not likely to get a lot easier as you work through this with your family. FWIW, I think you are handling this well. Jeff may need to maintain that sense of optimism to help him cope. The power of positive thinking is not likely to cure him but may help him get through this better. Re your kids, I definitely think you are doing the right thing by being honest with them. There were situations in my wife's family where the "kids" were not informed about medical issues because someone was protecting them. This led to a lot of hurt and hard feelings that lasted years. I support giving your children good info so they can make their own decisions about how to handle things. Lying to protect them isn't so great in my book. So congrats to you for doing the best thing even if it hurts now.

Best to you,

Jim
Posted 8/19/2021 3:51 PM (GMT 0)
Hello Jerry L - WAITING for the Lu-177 PSMA !!!! I'm not very patient.
Posted 8/19/2021 4:20 PM (GMT 0)
There is not a right way or a wrong way...there is only Jeff's way...once that is figured out and adhered too...you will all settle in...and have peace...you will all have your turn at having it your way...you can be assured of that...just like all of us will...we are born alone but with no choice in the matter...allow Jeff whether it is now or years from now to have that choice...have faith in faith...think Life...there is nothing else...turn unto wisdom...Lo...it is there...I would wisely suggest you share this post with Jeff...I believe he will like it... PS this post is not a indictment or praise of any one...it simply is!
Posted 8/19/2021 5:47 PM (GMT 0)
Hi Stephanie,
Sorry for what you are going through. When I was diagnosed my original prognosis was a year or less. I was peeing blood and was in severe pain. My PSA was over 3200. I had bone metastasis, Lung Metastasis, Lymph Metastasis and unconfirmed Brain Metastasis. The Brain metastasis was suspected as my field of vision was shrinking g and the headaches were unbearable. My PCP said a year or less. My second pulled back the collar on my shirt and said he didn’t see an expiration date. That was over 15 years ago. The cancer is still undetectable. I was only 42 years old. Cancer changed my life for the better. I am a better man, father, and now grandfather. I appreciate something I never did before. Life!! I live each day to its fullest.

We are all terminal. Jeff may have a better idea of what will end his life but none of us know when. Honestly, your life could end before his does. My advice is to hold onto hope and not think of the end. If you or Jeff or the kids focus on the end you will miss everything that happens in between.
Posted 8/19/2021 6:05 PM (GMT 0)
Todd, that is a remarkable testimony! I am at the very beginning of my journey and metastasis is my absolute terror. Your story has given me great hope! Thanks for sharing.

Stephanie, you and Jeff are in my prayers. I have no experience here but to tell you to stay strong and have hope seems trite, but Todd's experience is a strong indication of what hope is all about.
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