Bittersweet

Todd, this surely is a heartbreaking disease for some. You and all the others continue to be in my prayers.

~(((Todd)))~

Todd, when I read your posts and others with worst stats then my, I do feel like an ahole for feeling sorry for myself.
When I first found this forum my wife would read the post here with me but it would make her cry and depressed so she had to back off for awile.
I wish the very best for you!
Mike,

Todd, my heart and soul goes out to you. I was at a very poor starting point myself, and I fully understand that I could be taken away from life sometime in the next couple of years. Or I can be sustained by new drugs for a few years while they work out combos and then I can be sustained for another decade or more. But unless a cure comes along in the next decade, I don't expect to be celebrating my 70th birthday.

I have high hopes for targeted nano-medicine like BIND-014 or the next generation of immunotherapies. I'm aware that they may be four years in the future, and some of us don't have that much time, but I'm still in my first round of ADT2 and there more bullets in the gun, as my onco likes to say.

I've spent time in the last year trying to accept mortality and prepare for the worst. Last month, my PSA went up for the first time since this whole thing started and I'm slated to see a specialist in two weeks. My attitude is: Oh boy, here we go.

At some point I'd like to talk to you privately. Obviously, we're both so young and we're so advanced, we have special needs that aren't as relevant to others who are at other stages and at various points in their therapy.

Todd, I understand what you have written.  Prostate cancer certainly is two, or perhaps three, very different diseases.  I think it is a detractor to refer to the full spectrum of this disease by one singular name...it results in an "averaging" effect.    On the one hand, the "averaging" pulls-down awareness of the seriousness of the aggressive, potentially deadly versions of PC.  This is illustrated through uninformed comments along the lines of referring to PC as a "lucky" type of cancer.  Although this high risk PC only affects a small percentage of the total number diagnosed with the disease, there is nothing "lucky" about it for the roughly 25K men who will die in the US from PC or their loved ones.   On the other hand, the "averaging" also irrationally elevates men's "cancer" fears when they are diagnosed with a tiny case of low-risk PC which should be treated (in the words of one world-renowned PC expert) similar to how one monitors & treats a case of dandruff.    The reality is that PC is among the most common and least lethal malignancies which yields a large population of survivors, but not all are survivors.  Language is important.  Should both ends of the PC spectrum be given the same disease name?  There are plenty, and a growing number, of the PC experts in the world who say this is a disservice to men like you .  I think your post, Todd, highlights—and personalizes—some of the reasons behind the push for a change.   edit:   typo Post Edited (Casey59) : 10/4/2012 1:10:49 PM (GMT-6)

The minute I hit send on that I regretted it. Those of you struggling with all the sexual side effects -- please know I really do understand that that stinks. And I'm sure more so for men, I think it's more central to your identities. And it's just one more thing cancer has stolen from you. I was not trying to minimize it.

I just hope to some day be lucky enough to worry about it!

Gleason 6. Don't ever stop posting. People see your posts and it helps then. Info hound. We feel what we feel. This is a place to share. Davib emersons decision really has me down. I speak my heart.

Todd, my brother

We are Prostate Cancer Warriors

Fierce in a battle that is ongoing through a lifetime. Educated, armed and dangerous. Self advocating and in control. As a boy scout always prepaired for the next challenge. We wear the body armor of faith, hope, and grace. Our weapons are a love of life, prayer for those who believe, healthy life style choices, and a refusal to admit defeat. We standby with an army of brothers and sisters who like many other warriors will never leave a fallen soldier behind. We use every weapon in an arsonal that is rapidly becoming formidable and when we exaust our ammunition we pull our blade and stand against our enemy in hand to hand combat.
Yes Prostate Cancer Warrior is identity, Zero is our motto and Cure is our hope for an end to this war.


There will be those who fall in this battle - such is war. We who continue on in this battle do so for those who have fallen, for ourselves and for those who will follow in our footsteps.

Infohound - No harm you spoke your mind, right now your hubbies survival is of more importance than sex. You my sister are a valuable and much loved member of our family.

We are getting more and more weapons to fight this beast. Hang in there my brothers - science is catching up and doing so rapidly.

Hugs all

Bud

We will beat this crap!

Look in the mirror Todd - you wrote a good part of that.

Todd,

I share all of your emotions on this one.  I was a young 44 year old when I was given a piece of paper that changed my life.  I now see 50 as my new 70, 55 the new 80.  With us it just doesn't seem that the numbers add up.  I'd rather be talking about blue pills and things like that...

But, nobody knows how or when we will meet our maker. 

Ok, I admit it, I'm not around these parts too often --- did you write what Bud posted?

Hang in there brother,

Jerry

 

Well, I really like it!!!

Well stated Todd. I have four older brothers. One was diagnosed 9 years ago with G6, has a radical prostatectomy and is clean since surgery. Then I come along being the youngest and get clobbered with G9, seminal vessel involvement, perineural invasion, lymp node. So I hound, relentless hound my other three brothers to get biopsied. Everyone one had a PSA of 1+, all three came back with G6 cancer and all three will have surgery in the next two months. I went to all the appointments with them at my cancer center. The Physician Assistant comes into the exam room, looks at me as says Hi Carl. I asked him how he remembered my name with as many patients that they have. He simply stated "You are our only Gleason 9 that is still alive" and we talk about you at least monthly.

So going back to your statement that you know that you will die of this disease, clearly reminded me of the PA's statement that you are our only G9 that is still alive and wondering how much longer that will last. Yes, I too will die from this disease along with so many of my wonderful brothers here on HW.

There is a great series on PBS called Money and Medicine. It compares the healthcare costs of our giant provider in Utah/Idaho, Wyo and compare healhcare costs to UCLA. They start the series with premature deliveries, then they go to breast cancer and then they end with prostate cancer. An interesting discussion of very bright minds. There conclusion is for every fifteen men that are operated on, only one of those fifteen really needed surgery to prevent premature death. It is well done and worth watching. The link for the show is;

http://www.pbs.org/programs/money-medicine/

I have tried to get this catastrophic event out of my mind. I can't since I am at such high risk. I have to go in monthly for the ultra-sensitive PSA test. So by the time I go up and give blood and see all the terminally ill patients, then get my results back, it seems like I have a week or so it seems before I am once again back to the lab to give the blood and I struggle to put this on the back burner of my brain. I can't. I have stayed away from reading and posting in the attempt to shut it out and to channel my energy in other areas, but there is a strong magnetic pull back to HW to see how so many are doing with their updates. You grieve when you see folks begin to start the descent down the slippery slope to the trap door wondering when does my final descent begin.

While on one hand I am glad that I am their only Gleason 9 that is still alive but how he said it sounded like it could be imminent and maybe it will be. Will it be worth doing HT and IMRT and then on to Chemo? Who knows. I feel like I need to do a little for my family. Once the radiation cat and mouse game begins is when I say I am done with this darn disease and will let it take it natural course.

I have learned so many wonderful lessons over the past two years, I have met so many amazing health care providers that are so passionate and caring and wanting to help me be the one exception and not one of the many. I have found out some people who I thought were friends, were too busy with their lives and didn't want to get involved or even say the C word. Then, surprisingly, there are those amazing angels that come out of the woodwork and will freely talk about cancer and want to know about what the emotional roller coast is like dealing with this and then they are willing to go to appointments with you, drive you, cry with you. True angels. Then there are the family matters that most just want to shut it out and not even talk about it. Some have so much anger with cancer, and with me having the cancer as if it was my f&*(ing fault that I got it. They worry about will there be money for them to live the rest of their lives and somehow forget their husband or dad needs a shoulder to cry on, but they simply can not deal with the reality of what the near future will bring. So as a man, I enter my mancave and try and somehow get distracted from what is starring straight at me and is patiently waiting to escort me through that dark trap door to the other side.

Do you get tired of putting on the brave face to family, friends, co-workers, religious leaders and members of your congregation. People who probably mean well but can say some of the stupidest statements and you just want to say, did you really just say that? The person who thinks they are in such good standing with their God. and are just so healthy so what is my problem such that God cursed me with this disease? What message is God trying to send to you? I just want to scream and say that the God I love and rever would not give a person cancer to test them or to humble them. The God I believe in is all loving and compassionate and while he understands that bad things happen on our journey, he is just as heart broken as my real parents are that I have to deal with this. Do any of our HW brothers get these kind of questions or am I just the only lucky one.

Then forget about intimacy when you loose both bundles of those very critical nerves. Sure there is the VED and then there are the trimix injections which I am happy for all of you that they do work for. For me, it has just been another mindless abyss of why is it not working for me. Do i go have another surgery to have a prosthetic in? Will it be worth it if the cancer returns for its finale tour? How many books have I read that it doesn't matter if one can no longer have an erection. Are you kidding me? Sure seems to matter in my home.

Then you get to deal with work and maintain production and service to your clients. Many clients are incredible and understanding that if you are sick for a day or two out a month, most things can wait until you get feeling better, Others, don't care and they need their requests met when they need them met and have no compassion as to what is going on in your life. Then you get to deal with your boss who is glad that you got your surgery over with and recovering but just wondering how long the good streak will last before the cancer comes back. Does he need to hire someone so I can train them to replace me when the cancer does come back or is he just better off having me train someone no matter what so his business gets run and then makes you expendable.

Which then leads to health insurance. If you loose you job, you loose your health insurance. Sure you can pay the full sticker price of the monthly premiums under Cobra but you just lost your monthly income, so do you draw down your savings to pay for your stupid health care costs and leave your family with not enough resources to sustain them? Who is going to hire a person with a an aggressive cancer? No one in their right mind knowing that the cancer can come back and then you are distracted with all the medical appointments, treatments, side effects of exhaustion, fatigue, loss of appetite, lack of energy, etc let alone what the increase medical costs are going to do to his future monthly and annual premiums.

Then you try and apply for life insurance and find out real fast that you are one hot smoking hot potato, toxic so forget about any possible new coverage on life, or even obtaining mortgage insurance to make sure your home is paid off so the survivors have a home so they are not homeless.

Then at some time, one has to think of what happens at death. Do I want a funeral or a graveside ceremony or do I just want to get cremated and have my ashes spread over the Grand Teton? I will be dead, I don't care what people want to do. Some will be happy that I am dead, others will be happy for me that I am dead. Hopefully, some will be sad which would mean I had some positive influence on them at some time in their life.

This is why this disease sucks. It hits so many of us at such an early age (40s and 50s) and then we have to address the above issues, when we should be playing golf, fly fishing, traveling, serving others, but oh no, we have to deal with this reality.

While I try and channel my energy into celebrating ever bonus minute, hour, day, sunrise an sunset and miracle I experience, I somehow get slapped in my face with the reality of all that comes with (after you have been diagnosed with the BIG "C") the reality of having G9, lymph node involvement, perineural invasion, seminal vessicle involvement, yada, yada, yada,

I hate this ****ing disease. I apologize to all that I just offended, but it is the worst word to describe how I feel about cancer.

May we all find peace and solace in our journey and celebrate the angels in this life that give us hope and medical care and cheer for us and cry with us. May God bless each and every one of them and you my HW brothers sharing this similar journey that we all are embarked on.

Carl,
Crap man. You said a mouthfull. Wow.... I am speechless. Let me disect a few points. Life insurance......yep no way will they ever give us life insurance. There are ways around it. I am in debt up to my eyeballs. Each time I get something paid off I go buy something else. The reason is that I can always get life insurance on cars trucks boats and the like. Upon my death it is all paid off. If I can no longer work the insurance makes the payments. I have a garage full of stuff that upon my death my wife can sell. You do what you have to do. If she doesn't sell them she can use them for bait to hook herself a new husband lol.
I will continue this later. It is too hard to type from my phone.