"Sue Saddened Wife" Continuation Thread 2

Sal,
Know that your have our support and love. I hope the road goes smoothly for you and Dave today and every procedure is done in a kind and compassionate manner.

Susan xo

There is an incredible amount of bravery here.

I’d like to briefly share a portion of my wife’s cancer illness.

There is nobody who fought harder. She didn’t want to leave me or her two kids—son in college, daughter in high school. All three of us “needed” her, and just 15 months ago she was running, working out, working full time, and enjoying life!

But somewhere months after surgery which basically cut her in half (literally!) and after several months of visiting the infusion room (heavy chemo) her oncologist had the good sense to ask her how she felt about medically prolonged life. Although we had thought it to be "blunt" at the time, what an incredibly sensible question to ask, rather than have it be the elephant in the room. While our minds were still focused narrowly on "fight," it was already clear at that point that cancer had begun to metastasize to multiple places…including the commonly susceptible organs where it doesn’t get better in a weakened body.

Her case seemed to go back and forth for months, but for every step forward there were two steps backward. She slowly descended. The common-sense oncologist told her, “the cancer is winning.” Her vitals took yet another dip, and she had yet another stay in the hospital. Days wore on as the vitals crept ever so slowly back into a reasonable range. Obviously, no cancer-fighting chemo when the other measurements are out of whack. We walked the hospital halls, talked, read, passing the time, just wanting her to be released to go home again.

On the day we had anticipated her measurements would be good enough to go home, the oncologist came in and said, “the cancer has won.” Trying to give her more chemo to fight the cancer was going to simply knock her vitals back down and the viciously spiraling cycle would continue…at least for a little while. The good doctor told her to go home. Ok, obviously, he didn’t just say “go home.” It was an incredibly heartfelt conversation. Go home, be with your family, do not suffer more pain. We checked out the next day and met with the hospice people when we arrived home.

The oncologist’s conversation gave everyone involved a sense of uplift which had not been present for a long time…for her, for me, for the rest of the family. It wasn’t long after that, but we shared a couple days with smiles and positive conversation…all because the tough conversation had already taken place. The focus was on keeping her comfortable…that’s it. No guilt or grief about continuing to hold on.

The advice I’ve given others…if you haven’t already had the tough conversations about medically prolonged life, have them at least once you realize that “the cancer is winning.” (the problem is often that this realization is often hard to accept) I wouldn’t have wanted to have that conversation only at the end. The blessing we had was having an oncologist who was willing to put the discussion on the table.

Your bravery is inspiring.

Rick,

What a great first post..

I agree with you!

Now that you have broken the seal don't be a stranger!

And sorry you have to deal with this Pca crap...

I concur and hope nobody leaves. Everyone is close to their emotional breaking point and I can see that sometimes we seem to be walking on eggs.

All the points of view on this thread appear to be 100% valid. Reninds me of when I first got dx. with this miserable disease. There were so many disagreements about tx. methodologies, supplements, doctors' skills, etc. Some folks actually got so upset that they left.

My suggestion: just sift through and consider the points made. You can't be everything to everybody and many points contradict each other. Do we fight? Do we finally give up and let nature take its course? Is Hospice the next step? Is some new trial/regimen the next step? How much can I take?

Please folks -- everyone here is a supporter and trying to help as best they can. Sift through it all and use whatever is helpful. But please stay.

Mel, speaking as an observer and future pathwalker!

Post Edited (compiler) : 8/17/2015 9:13:42 PM (GMT-6)

Hi Friends,  just got home from work and I am doing something I thought I would never do.  Eating Butter Pecan ice cream right from the carten.  Yep--comfort food for me tonight and I feel better already.  LOL  Carol

That's what I do too, Carol...mint chocolate chip. Recently switched to low fat so I can eat twice as much. Of course I used to eat half the carton

Carol, Just a thought - Zolfran can have a side effect of vomiting. It's not as common as other SE's associated with it but it does happen. Perhaps his onc would try something else? There are many anti nausea drugs available.
And yes, there are so many emotions attached to our men eating...we tie a lot of how we feel to whether they've lost or gained or just maintain weight! And if on chemo the taste can be affected so no matter what you try - even their favorites - things just don't taste right. So yes, if he's maintaining focus on that and it's something to feel good about! Maybe Steve would like to have a spoon and join you in a carton of ice cream if you're the sharing kind!
Susan

Carol I just had a conversation with my pharmasist and his freind doing chemo had alot of illness , this round they put him on hydration and the nausea is so much better .He firmly believes people who get so dehydrated cant tollerate these toxic cancer treatments. Can you suggest this for Steve . God Carol my heart hurts for you especially the hope in treatments are not there. I very well may be facing a dual edged sword tomorrow at our oncologist appt I see him not wanting to offer anything else either and that iis why I am armed with alternative treatments because of the bone supression we are not able to use chemo and that is very scary,
one other thing home care told me to settle Daves stomach down was just adding to what you already use , I just bought some today . Dave really doesn't throw up but between the urinary problems, and everything else I am glad of that.
Prayers , and heart felt wishes for you and Steve to have better days 💙💙💙 XOXO

My heart is heavy for all of you ladies dealing with such burdens. Please know I am praying for all of you and hoping for some good news to come your way. I don't post on here much anymore since I am no longer involved with John's treatment, but I do check in frequently to keep up with all of you.

Take Care,
Barb

Do you ever think that in this day and age that you would walk into a Drs office and be told "Sorry but there's nothing more we can do for you" . That was our day today. You see it coming but you are soooo far from ever hearing those words. Through out this cancer we have always thought something somehow will work and years from now we would have been saying remember when you had that PC scare. BUT I knew it was coming today the writing was on the wall and we didn't just say fine We walked in I was armed with drug name to treat liver mets another cancer treatment called ketakozonal. I will continue to research anything I can find out there .If any one of you have heard of anytning that could work that is not chemo because platelets have fallen badly and are at 26. We never had a psa report back yet and even though they say at this point the Psa total doesn't matter I am going to make them do it all the time .The not doing those tests for Dave is what has caused this to begin with If the misconception still keeps going that a Dre and Psa testing is not recommended for men just how many more of us are going to be seeking support and answers on formats such as this .I look at my husband and he is only 64 and I wouldn't wish this horrid disease on my worst enemy if I had one. Today ct shows mets now in adrenal gland , more liver involvement , bone mets are all worse and long bones are all involved. As bad as all this rotten news was today Dave just kept saying I only want to feel good ! What I wouldn't give to just be able to give him that .! I will post tomorrow its been a very long emotional day 💙

Hi friend i know totally where you are.  I am so sorry you and Dave have to hear that.  We were told end of July " You have made it six years that is good" and " you have used every treatment from a to z" and " you have alot of cancer and no treatment is going to help".  It is so hard for me to turn around and now not fight or not read about treatments.  Steve says almost every day " I just wish I felt good for one day"  Now I do research on what can  help his symptoms. When Steves psa went from almost 600 to almost 5,000 Steve said than this is the end. I hope you and Dave have a good support team because right now that is what is helping us.  The visits /calls/ emails from friends and family is a lift when we need it. They remind us of what a great life it has been with Steve and tell him he is a good man who made a difference in their lives.  I am glad Steve can hear this when he is alive instead of them saying it after he is gone.  Steve is only 60 and still works I think it is his salvation to not have "cancer sucks" right in front of his face all day. Sue Be strong and give and get as much love to/from Dave as you can.  Even when Dave is lying down because he can not do anything put in a movie and sit beside him.  Touch him to let him know he is not alone. As I write this I think Carol make sure you follow the advice you are giving so thanks for sharing and reminding me what is important and that is today.  Carol

Jack that is all fine to write a clinal version of cancer and how to deal with it in text book form .The American and Canadian task force guidlines don't reccomend PSA testing knowing full well 3 out of 100 men like my husband are dying from the simple fact that a blood test can catch cancer at a treatable curable stage. This is what text knowledge does for me . It is of no consultation to me as I watch Dave die that I should accept his death beacause a guidline says I should. All though out this battle we only heard Standard of Care . I asked questions from the start and always felt that things should have been offered earlier and there was no sequencing of Daves cancer treatments.Yes we had acess to some latest treatments but in reality when we were able to get them the timing of them was all wrong .I will never forgive a nurse practitioner for not doing a complete physical for Dave and who told him she does not reccomend screening because of all stupidity false positive and negatives. So to the world of medicine Daves living nor his death are going to be text book or by a guidline recommendation. God decides when the time is up. No one else has that knowledge. Right now God tells me I love this man with all my heart and while his time may be near its not today.