Today I don't know which way is up

Kathleen808

johnsfo said:

My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.

A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.

That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.

In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.

I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.

With thanks and best wishes to all.

John

Hi John
Hi John,
It's good to have you on the board. Thanks for sharing so honestly about your thoughts. You and Adrian obviously have a very loving relationship and your respect for each other is great. We are here for both of you.

E pili mau nâ pômaika`i me `oe! (Best wishes)

Aloha,
Kathleen

grammadebbie

johnsfo said:

My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.

A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.

That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.

In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.

I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.

With thanks and best wishes to all.

John

Welcome
Hey John,

Just wanted to welcome you to the board. I actully thought that I had responded to your post earlier. With all the spam problems who knows what happened. Anyway glad you and Adrian have found this wonderful forum. Everyone here cares deeply for one another. You will find much wisdom and compassion here.

Your in my prayers,

Debbie (gramma)

Shayenne

grammadebbie said:

Welcome
Hey John,

Just wanted to welcome you to the board. I actully thought that I had responded to your post earlier. With all the spam problems who knows what happened. Anyway glad you and Adrian have found this wonderful forum. Everyone here cares deeply for one another. You will find much wisdom and compassion here.

Your in my prayers,

Debbie (gramma)

Hi John!!
And Welcome to the family! It's such a pleasure to have you and Adrian here with us, we will always be here for you when you need us. If we can help you both in any ways, you can always count on someone here who will try and help.

I know what you mean about the Irinotecan as well, I am on Folfiri and Avastin, and it does kind of kick you in the butt when disconnected especially, but the anti-nausea meds I have really work well, so I don't get really sick with it. Have you tried Emend and Dexamethasone for your sickness when you are undergoing the chemo? those were the only things (with some maryjane) that really helped me.

It's nice that you found a support group, whatever gets one through their journey, and I truly admire the way you look at things, planning for the future as well. We all know this cancers a killer, but we all also know there alot of people who been living well with this for years, and can only try and stay ahead of this disease as well and live with it, and it's good to just stay positive, and don't let the cancer take you over as well, sometimes I get to dwelling where my family here has to whip my butt back into gear, but that's rare! I have 4 beautiful children that I have to be here for, and I grew up without a mom when she died when I was 16, and I don't want my kids to have to go through that, so it keeps me going! so does my loving husband.

You have a wonderful lovegiver in Adrian, I can tell how much you both love each other, just through your posts, and glad to have it here, I hope to see you both posting more and travel with us through our journeys. We're here to vent, cry, just to talk about anything besides cancer as well, and to laugh! yes! we all love to laugh! I am happy you both found us

Hugsss!
~Donna