How can I help my husband face the possibility he may not survive?

Posted by sw54 @sw54, Jul 24, 2022

My husband was diagnosed with locally advanced/borderline resectable pancreatic cancer on April 11th. His oncologist recommended a chemo regimen aimed at shrinking the tumor so it can be removed with Whipple surgery; unfortunately, chemo treatments had to be postponed two months due to a number of complications related to the cancer. One of those complications is Cachexia (Wasting syndrome). He has lost over 20% of his normal body wait and has signs of muscle wasting, too. He has now had 3 chemo treatments and is not tolerating them well at all. He loses more weight and becomes weaker each time, and the oncologist hasn’t even started giving him the full dose of chemo drugs because he isn’t sure he can take it.
My intuition has been telling me all along that he is not going to survive this with any quality of life left, but haven’t been able to talk to him about it because until recently he has been convinced he can beat it and get to the 5-year mark. Lately, though, his suffering has caused him to realize he may not have much time left, but he still seems afraid to talk about it. If he mentions his mortality and I try to discuss it with him, he gets angry and shuts me down. I am afraid, too, and also filled grief for what I know is going to happen.
I realize he needs to process things in his own way and I want to provide the right kind of support at the right time. My hope is to help him make peace with death before it’s too late. Can someone help me with how to do that?

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@sw54 Oh, this is so very heartbreaking. You are a loving and compassionate individual and I'd like to say that your husband is so fortunate to have you in his life. Your post shows how much there is for both of you to process and most of all that you wish to be accepting and supportive of of his emotional needs. I suspect that his anger is projected onto you as he cannot control his body to live, do, and respond to treatment the way he wants. And then both of you are in grief about the pancreatic cancer and what will come. It's evident that you are taking your cues from your husband and allowing him to lead the way through this difficult illness, treatments, and medical appointments.

May I ask how long you've been married? Do you have children at home or are they on their own now? Are you both satisfied with the oncologist and his medical care right now? Since your husband was convinced that he would "he can beat it and get to the 5-year mark" (I'm quoting you) would he like another medical opinion?

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Thank you for your kind words. We’ve been married 26 years. We don’t have children together, but I have three grown children. My husband is 72 and I am 68, both retired.
We came to Mayo in May for second opinions and consultations. Our oncologist at home seems competent and has said he is willing to consult with the surgeon at Mayo if we get to that point. If surgery becomes an option, he will have it at Mayo.
We are open to suggestions for alternative therapies, etc., but the oncologist here admits he only knows about chemo, but has no problem with us looking into a more integrative approach.
I just think that given all my husband has been through already and his greatly deteriorated general health, we need to prepare ourselves for whatever the outcome may be.
Ironically, a childhood friend of mines passed away from pancreatic cancer a few weeks ago. She fought it for two and a half years. I know she made the most of the time she had, but she also suffered greatly. Still, she had a strong religious faith that enabled her to face her mortality with grace and courage. My husband is a scientist and not at all religious, so I worry that he will have a hard time accepting anything less than a cure.

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@sw54

Thank you for your kind words. We’ve been married 26 years. We don’t have children together, but I have three grown children. My husband is 72 and I am 68, both retired.
We came to Mayo in May for second opinions and consultations. Our oncologist at home seems competent and has said he is willing to consult with the surgeon at Mayo if we get to that point. If surgery becomes an option, he will have it at Mayo.
We are open to suggestions for alternative therapies, etc., but the oncologist here admits he only knows about chemo, but has no problem with us looking into a more integrative approach.
I just think that given all my husband has been through already and his greatly deteriorated general health, we need to prepare ourselves for whatever the outcome may be.
Ironically, a childhood friend of mines passed away from pancreatic cancer a few weeks ago. She fought it for two and a half years. I know she made the most of the time she had, but she also suffered greatly. Still, she had a strong religious faith that enabled her to face her mortality with grace and courage. My husband is a scientist and not at all religious, so I worry that he will have a hard time accepting anything less than a cure.

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@sw54 You've had many years together and I'm thinking both of you are grateful for how your marriage has endured. I'm 70-years-old and like you have lost childhood friends in recent years. I know personally that there is so much loss in our age group but that makes it no less sad. As you grieve the loss of your childhood friend you are now faced with wondering how much time you will have with your dear husband. While it is admirable to put one foot in front of the other because it's what we all must do are you allowing yourself the space you need for your emotional needs?

Your husband is a scientist and so undoubtedly a rationalist. I had a conversation with someone last year who has a strong religious faith and she *knew* that treatment of a new lung cancer tumor (she had others in the past) would work out well for her. I recall thinking – how can you know that? I realized that no matter the outcome she knew because of her faith. This is how she faced her own mortality.
My partner is a retired physician (pathologist) and many of our life discussions come down to rationalist terms. My endometrial cancer was staged 1a in 2019 and when I worried aloud about a recurrence or new primary cancer he told me to stop worrying as my cancer was "cured". This is what he had seen in his practice and how he thinks. But he was incorrect. I had a recurrence in late 2021. And so each day I "look in my rear view mirror" wondering what might be next.

From what you've written I can see that this is so painful for you. I wonder if you can lead your husband to face his own mortality by your example. I know that my partner and I do not share a similar spirituality. I still talk to him about my values and my beliefs and I listen to him.

I'll add a suggestion for additional medical care. Mayo Clinic has an Integrative Medicine Dept. I have an appointment there at the end of August and I needed a referral from my oncologist for that appointment. Would your husband be interested in this? Alternative and complementary medicine approaches are evidence-based and at Mayo are meant to accompany whatever other treatments a cancer patient is receiving. What do you think about this idea?

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Thank you so much. You have addressed every single concern I’m having right now with compassion and understanding that obviously come from your experiences. You have really helped me. ❤️
Yes, I know my husband is open to Integrative and Complementary approaches. We live in Illinois, and he still wants to hope that his next trip to Mayo will be for Whipple surgery; however, you have given me the inspiration to gather info. from Mayo’s Integrative Medicine and share it with my husband. Maybe we could have some online consultations. If necessary, I know the oncologist will give us a referral to go back to Mayo. We need to be careful about expenses, but at least travel costs, etc. are tax deductible.
Thank you again for your kind and helpful responses.

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@sw54

Thank you so much. You have addressed every single concern I’m having right now with compassion and understanding that obviously come from your experiences. You have really helped me. ❤️
Yes, I know my husband is open to Integrative and Complementary approaches. We live in Illinois, and he still wants to hope that his next trip to Mayo will be for Whipple surgery; however, you have given me the inspiration to gather info. from Mayo’s Integrative Medicine and share it with my husband. Maybe we could have some online consultations. If necessary, I know the oncologist will give us a referral to go back to Mayo. We need to be careful about expenses, but at least travel costs, etc. are tax deductible.
Thank you again for your kind and helpful responses.

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@sw54 It's good for me to know that I've been helpful to you and your husband. I'd like to share some resources I came across when I was doing some reading today about how an existential psychotherapist faced her own death when she was diagnosed with pancreatic cancer. I intend to look into these also as I think about my own dying and death in a much deeper way than I did before my own cancer diagnosis.

You're Going to Die is a California Bay Area nonprofit that has in-person groups but may still be meeting virtually because of COVID.
http://www.yg2d.com/resources
Ernest Becker was a cultural anthropologist who wrote Denial of Death (1973).
https://ernestbecker.org/
Death Café
https://deathcafe.com/
Will you please post again when you have questions and when you've made contact with Integrative Medicine at Mayo Clinic?

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@sw54. I've been thinking of you and your husband. How are you feeling? How is your husband doing with his chemo treatments?

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@sw54 Since your husband is a scientist, he might be more optimistic taking a research based approach to his treatment. It sounds like your local oncologist isn't that experienced with pancan so probably isn't familiar with all of the chemo agents that are available. I'm familiar with the variants because my wife has had them all. She also has had cachexia for over 2 years now but still pushes on. Sometimes she needs a break from chemo or a change in agents. Your husband is early in his treatment and there are options. Did he have a biopsy as part of his diagnosis? Was the biopsy used for a genetic analysis of his tumor? If not, arrange to send the tumor tissue to Mayo or another National Cancer Institute hospital. There are many clinical trials available which he may be eligible for (determined by genetic testing) and which may be more tolerable than standard chemo. If he hasn't already investigated pancan.org, start there. Also, has he been prescribed pancreatic enzyme replacements? If not, they might assist in rebuilding his body. Also, we started using Enterade recently which is only available direct from the mfg or Amazon. Enterade is amino acid supplement drink to counter the intestinal damage caused by chemo treatment. My wife has gained a little weight since starting taking it.. good luck and bless both of you.

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Thank you so much for sharing your experience. We had not heard about Enterade, so I will definitely look into it. The dietician recommended Kate Farms nutritional high protein shakes that he says are superior to Ensure, Boost, and others, so he drinks those and takes digestive enzyme supplements. The prescription enzymes like Creon would cost us about 1K every 28 days, so now we are looking into a company in Canada that sells Creon for $200/28 day supply.
My husband has also decided to stop the chemo regimen he was on that was supposed to shrink the tumor so it could be respected. Three treatments were too many. He’s become to weak to tolerate that kind of dosing. We have found very interesting research about low-dose chemo that is helping people have as much quality time as possible. It’s called Metronomic Chemotherapy. Have you heard of Dr. Wm. Isacoff? We are going to talk to our oncologist about it before the next scheduled chemo. He is a pretty open-minded doctor who makes recommendations, but has said before that he will do whatever my husband wants.
Oh, and yes, my husband tested positive for BRCAII gene mutation. His mother died of breast cancer at age 40, and his sister is a 20-year breast cancer survivor. She wasn’t tested for genetic mutation, so we didn’t know until his diagnosis that BRCAII also causes pancreatic cancer, among others. The whole family knows now.
We are familiar with PanCan, also. It’s a valuable resource, especially since we have needed to learn so many things on our own.
Our oncologist has told us that there are no clinical trials around here right now that my husband would be eligible for. If we travel somewhere else, we’ll have to live there while the treatments last. We can’t afford that.
Thank you again for taking time to help us.

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My observation has been that people tend to rely on their religious beliefs or a rational acceptance of mortality. I'm an agnostic and can't help on the religious front, but I will make a suggestion on the rational front that I've used to explain to others how I'm dealing with my diagnosis and prognosis.

We are all mortal, and we are all dying in the sense that as we age, we get closer to our end. This was true for me and other cancer patients before our diagnosis and continues to be true today. If, for example, we cancer patients were cured of our disease today, tomorrow we would again face other ends that anyone may encounter: traumatic accidents, sudden cardiac arrest, other diseases, etc. There is no way around our mortality.

So, the main difference between facing a poor prognosis now rather than later is that we likely have a shorter amount of time to enjoy what we can, make amends, and such. I hedge with "likely" because there is no way to reliably predict the future. Some different therapy may work better for us, or some new and reliably effective therapy may appear tomorrow that would postpone our inevitable end.

In the words of novelist, Jack London, "The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time.”

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@sw54

Thank you so much for sharing your experience. We had not heard about Enterade, so I will definitely look into it. The dietician recommended Kate Farms nutritional high protein shakes that he says are superior to Ensure, Boost, and others, so he drinks those and takes digestive enzyme supplements. The prescription enzymes like Creon would cost us about 1K every 28 days, so now we are looking into a company in Canada that sells Creon for $200/28 day supply.
My husband has also decided to stop the chemo regimen he was on that was supposed to shrink the tumor so it could be respected. Three treatments were too many. He’s become to weak to tolerate that kind of dosing. We have found very interesting research about low-dose chemo that is helping people have as much quality time as possible. It’s called Metronomic Chemotherapy. Have you heard of Dr. Wm. Isacoff? We are going to talk to our oncologist about it before the next scheduled chemo. He is a pretty open-minded doctor who makes recommendations, but has said before that he will do whatever my husband wants.
Oh, and yes, my husband tested positive for BRCAII gene mutation. His mother died of breast cancer at age 40, and his sister is a 20-year breast cancer survivor. She wasn’t tested for genetic mutation, so we didn’t know until his diagnosis that BRCAII also causes pancreatic cancer, among others. The whole family knows now.
We are familiar with PanCan, also. It’s a valuable resource, especially since we have needed to learn so many things on our own.
Our oncologist has told us that there are no clinical trials around here right now that my husband would be eligible for. If we travel somewhere else, we’ll have to live there while the treatments last. We can’t afford that.
Thank you again for taking time to help us.

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Creon has financial support that you can apply for to cover the cost of the pills. I am in the process of getting mine for $0. It would have been $1300 per month after my deductible. Go to the website Abbvie and apply. It is definitely worth a try.

My heart and prayers are with you both.

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