Is there a professional resource for navigating life with cancer?
November 21, 2018 11:22 AM   Subscribe

I was diagnosed with Multiple Myeloma two years ago, and so far my treatment has gone well, but now that the immediacy of treatment and recovery have passed, I am a little lost about how to structure my life to deal with the uncertainty of the years that I have left. I am 49, which is young for this type of cancer. I am also single, with part-time custody of two grade-school children, and no other family support. There is a good chance I'll live another ten years or more but there is also a chance I'll relapse much sooner, and I feel like I have to prepare both for my death and a radically different life at the same time. I want to find a professional resource that I can sit down with and discuss my situation and help me make plans for the future.

Also because I love to complicate things, there is more to my situation: At the time of my diagnosis, they also found a tumor behind my ear, an acoustic schwannoma that they had to remove, this left me with facial paralysis, loss of hearing in one ear and corneal scarring in one eye. So I still need several surgeries in the coming year. My financial situation isn't the best, but at least for now I have been able to go back to work so I can maintain the necessary insurance to keep up with treatment and the costly maintenance drugs. Oh and I am transgender and all this happened at the start of my transition, leaving me in a kind of gender limbo (this part doesn't concern me much because I am quite content with who I am even now and attribute my ability to survive all this to coming out before the storm).

I feel like the this goes beyond the usual resources available to cancer patients, as they seem to be tailored towards either living through treatment (frustratingly with the assumption of help by spouses or family) or short-term care for older patients. I am overwhelmed when I think of the future and I really could use a guiding hand.
posted by abigailKim to Work & Money (9 answers total) 3 users marked this as a favorite
 
I'm sorry to hear this. I was also diagnosed with multiple myeloma about two years ago. I'm 59, which is still pretty young for this kind of cancer. (I also had brain surgery for benign tumors about ten years ago, but I lucked out in terms of long-term effects.) My mom actually died from MM in 1995, though it's not supposed to be a hereditary cancer. I will say that treatment has improved unbelievably since my mom was diagnosed. She only lived for eleven months.

I don't have a "caretaker" either, and the emphasis on that makes me want to scream sometimes! I opted out of a stem cell transplant for other reasons, but I think it's horrific that what is considered the standard of care is only available to people with caretakers.

I have found the Smart Patients online multiple myeloma support group helpful. It will put you in touch with people who are going through the same thing, and while most of them are older, a few are even younger than you are. Some of the people on the board were diagnosed more than ten years ago and were given only two or three years to live at the time. I've found it very helpful to find real people who have done well with this disease. I haven't seen anyone on the board who has mentioned being transgender, and I'm cis, so I have no idea if that will make a difference in your experience. I will add that there are frequent discussions of how people pay for treatment.

I did not have much luck with local support groups. I went to one, and I was actually the only person there besides the social worker running it. The other local group seems to be oriented toward people who had stem cell transplants, and I opted out of that. But you may have a good local support group near you.

I see the same therapist I've seen for years. He doesn't specialize in cancer, but it's been a godsend to have someone I can be completely honest with without having to worry about whether my life is too hard for him to handle.
posted by FencingGal at 11:46 AM on November 21, 2018 [4 favorites]


My stepdad works in a Myeloma treatment clinic, so while I don't have direct experience with what you have gone through I know enough from him to get where you're coming from. I'm sorry...it's tough to think about things like this! I work in mental health and we have a therapist who specializes in chronic illness (including cancer but also other illnesses that are lifelong, so not specifically end of life issues). Is it possible that you could contact some mental health providers in your area to see if they have someone similar? There are several oncologists who will refer to her, so if your myeloma clinic doesn't have a referral consider contacting other cancer treatment centers near you to see if they have therapists they refer to for individual therapy. You can also look on the Psychology Today "Find a Therapist" page to see if you can narrow down your choices. (And if you are in Arkansas, MeMail me and I'll give you the details on our therapist!).
posted by MultiFaceted at 12:18 PM on November 21, 2018


i do not have cancer but at 36 i was diagnosed with heart failure, and that has given me similar "shit do i need to plan for 1 year or 40" issues. i have not found an answer unfortunately, and my hospital/doctors have been exceedingly unhelpful in this regard. anything beyond my heart, including my mental health, is not their problem. i have not been able to find any resources at the hospital to help me (e.g., social worker, case worker, etc.).

i think, unfortunately, you need to piece it all together. a financial advisor for that kind of stuff (tho mine got all fidgety when i explained i don't know how to plan for the long term when i don't know if i'll have one). a therapist for just general talking things out. perhaps a social worker or lawyer for navigating having partial-custody kids (i don't have kids, but can see a vengeful ex using "impending at some point in the future death" as a reason to revoke custody). with no family support, you're going to have to buy help on the days you just can't deal (e.g., cleaning person, someone to pick up groceries, someone to do the laundry, etc.). i don't have the money to buy help, so i have kind of really lowered all my standards about what life is supposed to look and be like. oh, and a maybe a lawyer if your work gets shitty about fmla or ada rules and regs.
posted by misanthropicsarah at 1:06 PM on November 21, 2018 [4 favorites]


Did they say what caused the schwannoma?
posted by Fukiyama at 2:15 PM on November 21, 2018


Dana Farber here in Boston has a website with links to different services for cancer survivors.
posted by momochan at 3:48 PM on November 21, 2018 [1 favorite]


Have you called Livestrong? They were pretty helpful for a friend in a similar situation.
posted by fshgrl at 11:21 AM on November 22, 2018


I don't have any resources to link but what I have done is made three sets of plans.

One is that my cancer stays NED and I have plenty of energy and am working, one is for if I have a recurrence or am too frail or otherwise restricted from working and doing stuff but am staying alive for another potential decade or more, and the third is if I am on a short time line.

In each plan there is some overlap, and in each plan there are some significant advantages over the alternatives. If I die within the next couple of years don't have to go through with an impoverished old age and long painful illness. If I go through a lengthy period of sickness I still get to work on low effort projects like my writing and spend time with family. If I am healthy I get to do lots of active stuff, whether or not there is money.

All three plans call for being financially responsible, as opposed to blowing any resources I can collect in doing expensive bucket list items so that I can transition from plan to plan as the current predictions change. I don't worry too much about the far future as either I will be here or I won't but in no case am I going to be rich. This is made a heck of a lot easier by the fact that I live in a country with socialized medicine and don't have to figure out how I will get medical care. However if you can join a trial that will often pay for some of your medical expenses.

Some of your projects such as parenting the kids and transitioning are do them as much as you can reasonably fit in for as long as you can do them type things. This means figuring what you can do no matter what and committing to it and creating a preferred time line and what is necessary to meet that time line successfully. When the kids are junior high school age you want to live in a neighbourhood where they can walk to school from your house. What kind of housing options will be available for someone who is in their last year of life, or someone who is now disabled, or someone who is healthy, vigorous, working and has a good income? Are there any housing options that meet all three categories?

Or perhaps you need to save up $8,000 for some transitioning surgery in two years, but might need money that year for cancer treatment medicine instead. Then you start a fund which will be applied to which ever need is the one that is most needed at that time when you get there. And you may want to have a back up plan, in case they tell you that you are 98% likely to no longer have a recurrence, in which case instead of spending the $8000 on that surgery you will hold off for two more years while you save up another $4,000 and get the better type of surgery that will give you some bone structure that you want as well because that will be worth it when you are looking back after twenty more years.

It's a matter of being flexible. People plan as if the plan gives them some control but that's not what a plan is at all. You can sit down and figure out how much you want to earn so that you can retire, and then follow the plan an earn that much and save what you plan to, and then find that a financial crash has taken the value of your savings away, or that you have found a job you love and would be depressed if you stop working, or are so committed to slowing down climate change that you would rather donate you life savings to planting trees and be homeless or you find a life partner who wants to support you and end up not having needed the savings and leave it to your kids. You don't have to follow through on your plan when it is successful and many people don't. Plans are just for widening your options. It's not a matter of saying you need to have four million in savings to retire, or you need to live until your kids are grown. What's going to happen is going to happen so what you want to do is position yourself for maximum flexibility and happiness regardless of what happens.
posted by Jane the Brown at 11:38 AM on November 22, 2018 [4 favorites]


My partner was diagnosed with (and passed away from) MM a few years ago at 39. In retrospect, I wish he and I had spent more time with a financial planner, and mapping out what all of his options were insurance-wise and work- wise. He was overly optimistic about his ability to keep working through chemo.

The MMRF offers patient navigators (https://themmrf.org/multiple-myeloma/resources/talk-to-a-nurse/). They are nurses, so unfortunately they are probably primarily helpful for clinical decision support, but they may be a good place to start. Alternatively you might try calling your hospital/medical center and seeing if they offer patient lay navigators.

I haven't used it myself, but I've heard really good things about Patients Like Me for connecting with fellow patients. (https://www.patientslikeme.com/join/multiple_myeloma2). You are right that MM is more common in older folks, but there are a surpring number of people diagnosed in their 40s and even younger. I found web forums for MM patients to be surpringly cathartic.

I also just want to say that if you do ever need someone to talk to, please do MeMail me. I'm happy to lend an empathetic ear if you ever need one.
posted by tealcoffeecup at 8:37 PM on November 22, 2018 [1 favorite]


Thanks everyone - lots of good suggestions! I pretty much marked them all as the best. JanetheBrown, you've given me the best way to frame the problem, as I was struggling how to best structure my planning for the future.

Fukiyama - They have no idea, and I haven't found any good related theories. Strangely my disease and the tumor has only manifested on one side of my body, which according to the oncologist is unusual.
posted by abigailKim at 1:32 PM on November 25, 2018


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