An update from Mary

7 years 1 month ago #52815 by Jmitchell418
Replied by Jmitchell418 on topic An update from Mary
Mary,

So sorry to read this update. It is not what any one of us wants to read or hear for ourselves. I have followed your story on this forum as I was going through the tough decisions and I could feel your pain and anguish. This is not a club we signed up for!

But since my surgery, I have come to realize that we don't have a choice as to how much time we get to spend on this great earth, but we do have a choice as to how we live our days. I have had the dark days you speak of... The days when you don't want to get out of bed. It truly sucks big time. But every day I wake up, I am thankful for one more day with my wife and children. I have chosen to be thankful for that time with them and to make every day special. I have chosen Faith, Family, Hope and Courage as the four guiding principles of each and every day of my life, however long that may be. I have chosen not to go back to that dark place in spite of cancer and for the benefit of those I love and those that love me.

So I hope you read this, and the comments from others that are in support of your journey, and that you take a moment to smile, hug your loved ones and choose life!

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
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7 years 5 months ago #52111 by GKLINE
Replied by GKLINE on topic An update from Mary
Hello Mary
I'm not sure how to say this.... So I'll just say it

Please don't go quietly into that good night. Please come here and yell... SCREAM.. Swear (yes Cynthia we can allow full on swearing from Mary cuz I said so)

Please find a Dr who will at least give you some hope. I for one don't want you to go away quietly. Sorry I am so late to post this but I have been thinking of you for this week and I can't let you go.

Please read this and respond. Please use us as your sounding board and let us be here for you

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 5 months ago #52032 by Jack R
Replied by Jack R on topic An update from Mary
Mary,

I am sorry to hear your new situation. I hope I can say this right - I want this to be positive, but impersonal computers make it hard.

I have been where you are now. I'm sure others here have also. Sometimes life sucks big time and the journey is overwhelming.

Eventually it is time to consider what you will do tomorrow. Take it one day at a time. Hug the kids, talk with a friend, do lunch, whatever may be your thing. This becomes habit forming; when you are ready plan a bit further ahead.

Here it gets tricky. You want to travel, but are concerned about appointments every 3 weeks. GOOD, you are looking 3 weeks ahead already. MAKE your doctor schedule a treatment for wherever you will be in 3 weeks (Oakland?). Contact your insurance company - get them to authorize treatment wherever you will be located. Plan in advance to make your trip happen. It can be done - out of local area treatment is needed all the time. If necessary, ask your doc what would happen if you walked into an ER in a state far away from home and said, "I need a treatment ?".

If that is not working, how about you start driving a day or so after a treatment, and flying home in time for the next treatment ? (Think about travel needs)

This is for you, not about me, but I know it can be done. When your life gets turned inside-out you have to work harder to do the things you want to do. But you can do them. It does require planning ahead. Your family will understand your challenges and be supportive.

Plan to ENJOY tomorrow. Then repeat daily. It is all any of us can do.

Life keeps getting harder, but the goals and rewards are still within reach.

I wish you the very best, and I truly hope this is seen as supportive.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: dani

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7 years 5 months ago #52030 by DougG
Replied by DougG on topic An update from Mary
Hugs to you, Mary.

Anita
Forum Moderator
Caregiver

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7 years 5 months ago #52022 by cancersucksbigtime
Replied by cancersucksbigtime on topic An update from Mary
Hey George,
I'm pretty sure I'm a dead man walking. I cannot sleep at night, and when I try to go to bed, what do you know, but the idea of an incurable cancer diagnosis rears its ugly head in my frazzled brain.
I am scared, angry and ready to give up. Nothing ever seems to go the right way for me with cancer. Why should I keep crying, being scared and, I think, becoming neurotic. I can't win.
Maybe I'll just say good bye to this forum and go gently into that good night.
Sorry, but that is exactly how I feel.

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7 years 5 months ago #52021 by cancersucksbigtime
Replied by cancersucksbigtime on topic An update from Mary
Thanks Sara Ann.
Somehow, I do not ever get good news with cancer, so I am thinking this therapy will not work either.
I am quite ready to give up this losing battle. I wanted to have a somewhat longer life, but that doesn't seem like it will happen for me.
So, you can wish me well, but I don't wish anything.
Sorry

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