Talking Frankly about Living with Advanced Cancer

@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

It sometimes is so overwhelming. It hits me hard some days and other days I am in a happy space. The people around me see some of the pain and suffering but most times I try to stay positive. I have lived longer than my dr.s prediction, which is cool. I really love life, the people around me and my pets. It is all the adapting to new ailments that is harder to deal with. Metastasized into my lungs and now is straining my heart. There is no medical treatments for my cancer so I have gone holistic. Comfortable and happy for another glorious, beautiful day god has made for us all Amen

Hi @ld57feast, thanks for joining this discussion. I see from your past messages in the sarcoma discussion that you have stage 4 chondrosarcoma, a rare cancer that affects the bones and joints. You write "comfortable and happy" -- which are encouraging words to read. Comfort isn't always easy to find in body and spirit, but it is obvious that you strive for this despite the health challenges. Do you have a palliative care team and good pain control?

Great care team of hospice, friends and animals. Not a lot of pain. More oxygen deprivation and heart stress right now. Read a lot of positive books and watch pxyl tv a faith and joy channel no commercials and always a happy ending even in the face of diversity. Only hard part is when my husband drinks and tells me how worthless I am. He does so good when he is sober. This crushes me and unfortunately he is yelling at me now. Any advice on how to deal with this when I cannot move from my chair. Sad tonight.

Great care team of hospice, friends and animals. Not a lot of pain. More oxygen deprivation and heart stress right now. Read a lot of positive books and watch pxyl tv a faith and joy channel no commercials and always a happy ending even in the face of diversity. Only hard part is when my husband drinks and tells me how worthless I am. He does so good when he is sober. This crushes me and unfortunately he is yelling at me now. Any advice on how to deal with this when I cannot move from my chair. Sad tonight.

I am so sorry to hear of your health problems, @ld57feast. It is understandable how an alcoholic husband could compound the feeling of sadness and loneliness. Might I suggest that you contact an Al Anon group in your area and perhaps someone could phone you with supportive conversations? (Al-Anon is a support group for those who have family members and/or friends who are addicted.)

I also did an online search and found that there are online (email) meetings. Here is the website where you can find a way to participate in them, https://al-anon.org/al-anon-meetings/virtual-meetings/.

Al-Anon members are very kind, supportive people who will gladly embrace you (virtually) and hold you up.

Sending you a virtual hug right now!

@ld57feast Hi there. You sound like a very couragious lady. I too have a husband that tends to yell at me too. He seems to do it at the very times I need him the most. Like the time I had an SVT episode where my heart rate was at 185 for hours on end and then caused a full blown panic attack. My brain was not perceiving that I was getting oxygen and I thought I was literally suffocating. He yelled at me to calm down and breathe as if I could stop that high heart rate myself. I finally crawled to my phone and called for an ambulance. I realize that that is how he deals with the stress when he feels helpless to help me. Perhaps that is what is going on with your hubby. I realize that his drinking is probably the real problem. Some people become mean drunks. Have you discussed this with him?