4-3-2014, 3rd visit with new oncologist, I asked a Question and it wasn't want I expected to hear!!

Yesterday, I had my third visit with my new oncologist and I took the time to Q & A. First, great news, my PSA was 0.05: AGAIN!!

I told her for the past several months, been having tingling and throbbing feeling on the right side of my face (have Mets on right skull). She responded by saying that could very well be symptoms of the shingles and to call me ASAP if I see a red bump or a rash appear. The past weeks, these feeling are every day and more frequent.

I also asked her if she agreed with my urologist (I ask him when he first DX me, about how long will I live), she looked at me and paused for a moment and said, given your aggressive/high volume of PCA, a soft "Yes!!" I KNOW, we don't have a date stamped on the back of our necks. The main reason I'm concerned is, my MIL had cancer (and FIL as well, both died in their 50's), and the family wasn't told the truth and died 90 days after I asked the doctor to tell us the TRUTH about how she was doing, he always said; just fine. I also lost two sisters (13 and 43, and one brother (had cancer and took his life at the age of 47). My mother died at the age of 54 and father died of cancer at the age of 62. I want some kind of idea (I realized the doctors can't always know the day, month or year!

Originally, my urologist DX me as a T3, again I ask my doctor if I was a T3 or T4, she said, at this point and time it just doesn't matter!!

Last night, my wife and I came to the conclusion that we'd have to take it a day at a time. We all deal and respond to our DX differently. A few months ago, here on HW, someone made the statement: "someone ask me how often do I think of my PCa, he said about every minute!" I don't think of my cancer every minute, but very often.

Guess we all have a few down days at times and today seems to be mine!!

BTW, my nerve block I had March 21, for pain in my lower back and right hip, hasn't taken as of today and I'm back on 4-oxycodone a day!! I have a follow-up with my orthopedic April 14th. Praying that the block starts working VERY soon.

Also, while in the hospital this past weekend, I felt extremely ashamed of myself, on Monday when my day nurse told me she had stage 4 breast cancer with mets throughout her body. Here I was thinking of my DX and here she was working 8 hours taking care of me with her DX!!

Lord forgive me!!

Dave in Bartlett, TN

Dave, I am answering this to give you great hope…. Forget Your PSa at .05. You are well…Move on. I am thinking that the PSA is a difficult number to get your head around. My husband's PSA now is over 17.00. He has distant mets..we know…..He just had a huge surgery for a rectal cancer caused by radiation twelve years ago. He is still alive. He had a HUGE surgery a month ago..Exenteration…look it up. He now has two permanent ostomies. I am changing them every four days. It is not so bad. He ate tonight and had a Baileys. He is living. We laughed. I bought him a new Tommy Bahama shirt. It looked great..! He still takes three oxycodone a day for his shoulder pain. He worries all the time.

That is what it is all about. Just try and focus on your good days. Believe me, I KNOW it is hard, but you can…I cry sometimes, but try not in front of him. I am happy that I have him. Be happy that you have each other. Yes, one day at a time is true. Each day has its own personality…but that is OK…
This is life..We are here for a reason…and a season. Use yours….Di (forgive me Dave)

Sorry for your bad day.. I'm glad that nurse was on duty to put your life back into prospective.. Everyone is fighting battles of some kind.. Some are caretakers as well as recipients.. Live one day at a time and don't put an expiration date on yourself .. I eat food way past its time and sometimes it's still good.. Hope tomorrow is better

Dave, I for one, appreciate what you wrote and shared with us.

Some people would never want to know a reasonably accurate prognosis, and others do. I am in the school of wanting to know. Of course, its an estimate, best-guess, educated guess, but never a fact written in the sand.

I have known my situation from day one with my urologist. So far, most things he has predicted for me have come true. My oncologist have spoken in terms of prognosis, and he's been pretty right about a case like mine.

I was given a 7-10 year window, regardless of treatment(s) choice(s). I am approaching the 5 1/2 year mark, and obviously still here. No, I haven't planned any funeral, made any arrangements, or even window shopped for caskets, lol. But I do keep this deep in the back of my mind, as it helps me deal with all that I am dealing with, and helps me plan how I want to spend my remaining time, whatever it ends up being ultimately.

I am ready to go mentally, emotionally, and foremost, spiritually. However, in the flesh in a literal sense, I am not quite ready to check out, so I am not quite ready to buy my ticket. I know one day, all this day to day suffering will end in the next world, even if it never improves in this life, and I am ok with that. Our human lives are short to begin with, in the bigger spectrum of time and space. Whether one lives to be 60, or 80, 100, or even 110, that is but a drop of sand in the eternal hour glass.

I am aware of my cancer state of being, every single day. But that doesn't mean I am dwelling on it, or worrying or fretting about it. It's reality for me, just as it is for you. Not a single one of us can choose to simply forget about it, the human mind doesn't typically work that way.

My wife and I, generally have always adopted the day to day approach to life. Live for today, and let tomorrow to become tomorrow when its the next day. At this point in my life, I do little, if any long term planning. That part of my life is over with. I am soon to be 62, haven't been able to work in over 5 years, and never will be able to get back into my former career. It took me a long time, for my brain to process, that I am through with that segment of my life. That part is over and gone for me, and all the wishing in the world isn't going to change that.

As my quality of life continues on this slow downward spiral, all I can do, is to adjust my mind to each new and changed reality. Instead of despairing over what I could do even six months ago, and can no longer do, I accept the new change, and try to live with how it is now, not how it use to be. I find that to be mentally healthy, at least for me. If I didn't think that way, it would far too easy for me to fall into deep despair, and to become a bitter man, which I refuse to do.

As I have mentioned frequent times over my years at HW, the cancer may own my body, and may even be the source of my death directly, but I will never, ever, allow having cancer control my mind and thoughts. That part of me belongs to me, and constitutes the real me. And I am happy with the real me, even with all the negative things going on in my body.

Didn't mean to ramble, but your post got me to reflecting and thinking, of course from my own personal perspective. I don't expect everyone to agree or disagree, because these are very much personal and subjective views of one's own life.

This is what keeps me going at this juncture in my life. With each passing day of my life, I become more and more conscious of the fact, that how long you live isn't really important, its how you live that counts. I absolutely will take quality of life at this point, then any amount of quantity of life. And this attitude will determine what I choose to have treated or not treated during the rest of my life.

My best to you, I think you are doing really well.

David in SC

Congratulations on your most recent PSA

Post Edited (Purgatory) : 4/4/2014 9:36:36 PM (GMT-6)

Dave,

I had the shingles 18 months ago. Turns out the pain started about six weeks before the lesions broke through the skin. I was working with my orthopedic surgeon and he couldn't find anything wrong. It was on the right side of my head, in my ear, down the neck and into the right shoulder blade. I woke up with lesions one morning and was able to get to my dermatologist the next day. She put me on Valtrex for one week. The lesions were arrested from spreading any more within that week, but persisted for about three weeks. I used a special soap several times daily to dry the lesions to get them to crust over. During that time you are contagious and have to be careful around others. They hurt but didn't itch. The underlying nerve pain was something else and felt like it was in my bones. Unfortunately I am one that continues to have the lingering pain.

I would call the dermatologist and let them know you may break out any time so you can easily get in the start the treatment. It only works if it starts within 72 hours of the first lesion. Since it is your face you must be very careful not to let it spread into your eye as it can be very damaging.

Have fun with your little ones, we are. Off to the Muppet movie this afternoon.

Jack

JNF,

THANK YOU VERY MUCH! That's all I need at this time of my life!! May 22-30, we plan on taking our two youngest kids and driving to New England (Rhode Island) as my wife has three younger sisters and their families that live in Woonsocket, RH. Do you think I'll be ok traveling as long as I'm not experiencing any major pain up until our departing date?

This is all I need on top of my other issues!!
Thanks for sharing.

Dave in Bartlett, TN

There were several cases of shingles in my family when I was a kid. I was trying to get the shot, but insurance would not cover it until I turned 60. I called on my birthday. They still wouldn't pay until the day after, which was a holiday before a weekend, so on Monday morning I was sitting at the "approved" drug store that I would never otherwise go to for anything. My store for the last 13 years for everything else, where I could get the shot without doing a road trip, was not "approved". I sent them a letter demanding gas reimbursement, but they blew me off.

I eventually got my gas money, but they'll never figure out how.

I guess a median overall survival number is better than nothing, but not much better.

It's different than an average which is also useless.

What you need to know is which end of the extremely wide pendulum you are on, not where the middle guy falls, and no one can know that except the Almighty knows your day.

I view my G9 diagnosis a little over a year ago as the day I started living on house money.

Sure it's a crappy deal but not as bad as a fatal auto accident or a massive heart attack.

So every day is a bonus.

So I live by Sonny's motto and enjoy every day llike it may be my last, something that was equally true before I was ever diagnosed that one can never know when his number is up, just did not think correctly at the time and now I do.

I hope you find relief from the Shingles symptoms Dave, and look forward to meeting you and Dorothy at GFMPH Rochester now that you will know most of the route from having driven to New England.

So yes I truly know the way to San Jose adn 2 of 4 grand kids, but in Sept have to reorient to Rochester.

LupronJim

LupronJim: Thanks for the comments. I do try to live as if today is my last day and also if I'll live to be 100. Having such a hard time emotionally as well!! Who said PCa is easy to deal with and especially with my DX. Also, seems the older my wife and I get, the faster time gets away from us. Thankful we have our close and wonderful daughter and her family. We also have great family members and friends, by our side.

We do hope to attend the GFMPH Rochester (will be our first group) meeting but will depend on a couple issues! Next Saturday, planning on meeting Redwing for a mini GFMPH meeting. Looking forward to lots of fun, food and fellowship with Redwing and our wives.


JNF: Thanks for the tips on (if I contact) the shingles, and hopefully they won't break out-ever!!

Yes, plan on eating lots of the New England local foods.

Dave in Bartlett, TN