New cancer diagnosis: your best tips, tricks, and books
September 3, 2016 8:53 AM   Subscribe

So I was just diagnosed with an incurable blood cancer. Life expectancies are all over the map - from a few years to decades - and I should probably stop Googling them. My family is far away, but my friends are falling over themselves to ask how they can help. I need suggestions for starting to get a handle on this.

I meet with my oncologist to discuss treatment on Tuesday. I have excellent health insurance, no SO, but a pretty stable life. My children are wonderful, but they live across the country and have their own busy lives. I am already in therapy, though I haven't had an appointment since the diagnosis. I need to deal with the early emotions of this and would also appreciate any practical tips. My housework has really gone to hell (I've been increasingly tired and weak but am feeling better after blood transfusions), and I've already resolved to hire someone to give the place a good cleaning. Financially, I'm OK, but there's not a lot extra (though I do have cancer insurance - so I'm getting about $8000 upon diagnosis and I need to figure out how to use that without squandering it).
I know I am stuck with this diagnosis, and that's just a hard reality. But I don't want to feel like it's my whole life from here on out. How do people negotiate that? How do you deal with being the person with cancer at work? (I'm in a small office - virtually everyone knows already.) I'm concerned that I would find a support group depressing (I tried a few support groups for depression years ago, and they just made me feel worse).
On a woo scale of one to ten, I'm about a six. I don't want to be told that beet juice will cure my cancer, but I think there's a lot that science can't explain. I have seen Kris Carr's "Crazy Sexy Cancer," and I consider myself a fan (though I don't believe everything she says). I'm going to get her books. What are some others?
Basically, I'm at the very beginning of this road, and I would appreciate some help in how to get started. (PS, I hate the word "journey" and I'm not interested in paleo - I eat a mostly vegan diet and plan to stick with that.)
posted by FencingGal to Health & Fitness (16 answers total) 11 users marked this as a favorite
I was just reading the other day about (yes, I know, grain of salt, do your research) an amazing new cancer cure (yes actually a cure) that seems to work best on blood cancers (possibly an NIH study?). Your search term is:
T-cell transplants. It seemed like a really early study, but with astounding success 90-95% (in an area where 3-10% is normal with current treatments) it sounds like the kind of thing to get fast-tracked.
The way it works is this: your body isn't recognizing the cancer as bad because your T cells (yes, the same ones attacked by HIV) aren't recognizing the cancer as bad. Getting a transfusion of someone else's (centrifuged from a blood donation) will trigger the immune response that you're supposed to be having, but aren't.
It's based on good science, no woo, and I really think it's worth looking into...I've been there (minor skin cancer, not that big a deal, but still scary) can do this... hang in there.
posted by sexyrobot at 10:16 AM on September 3, 2016 [3 favorites]

I'm almost exactly a year along the road from my diagnosis of an also incurable cancer. (In my case, appendix cancer. It's what killed Audrey Hepburn!) I moved back in with my parents (I'm 41), which is not ideal for any of us, but I really needed someone to be able to fix me food and do my laundry on my sickest days. The types of chemo I've been on don't really leave me enough energy to work, so I applied for SSDI, which you might want to look into as a possibility. It's not enough money that I could live on my own, but it's enough for me to still be able to do things since my housing is taken care of.

It's been a really long, hard year of coming to terms with the fact that I am probably going to die, but probably not, like, right this very moment. My personal focus has been on spending as much time with my friends as I can. When I feel well enough I travel to see them. When I don't sometimes they come to see me. I've also been working on things that I decided matter to me, like writing my own obituary, picking songs and poems for my memorial service, etc. There's a lot I'm happy to leave to someone else to decide, like I don't care too much what type of urn I'm in or where my ashes go, but I DO care that I have a chance to craft a last message to my friends. I've also been working on a journal for my niece and nephew, since they'll probably never know me as adults, and I don't think my family will do a great job of explaining who I was and what I was like. I found a notebook with 300 writing prompts at Target, of all places, and they're random enough that it gives me good places to start writing without having to craft a Big Statement About Myself.

You'll have a LOT of cognitive dissonance when you feel well enough to do a lot of normal life things like go to Target or the grocery store, but you are still, technically, dying. As you have cancer for longer it will get easier to enjoy those moments. Also don't be afraid to get antidepressants and antianxiety meds if you start having panic attacks or suicidal thoughts. Those are NOT just part and parcel of having the cancer. They can and should be treated.

I, like you, find cancer support groups to be a little bit of a mixed bag. I'm part of a group on Facebook for my rare cancer, and some days it's fantastic and encouraging. (There are people with my same cancer still alive four years out from diagnosis!) And some days it's a depressing preview of my possible future. In general I'd say it DOES help to have someone who knows what you're going through, though.

On how you live with an incurable cancer: the way I look at it, this is probably very likely what will kill me, BUT I can also try to stay alive as long as possible in the hopes that medical science will advance enough in that time to save me. Think about the people who were diagnosed with AIDS just as effective drugs were being developed. They got what they thought was a death sentence and many of them are still here. I keep up with the clinical trials for my cancer on, and the Facebook group also helps me keep on top of what the state of the art treatments are. There are also probably specialists in your cancer at various medical centers. Sometimes it's worth traveling across the country to see someone who does the most cutting edge research instead of just depending on your local oncologist (although I also love my local oncologist.)

I guess that's everything I can think of at the moment. Feel free to message me if you have further questions!
posted by MsMolly at 10:27 AM on September 3, 2016 [21 favorites]

Also, when my oncologist first told me I had five years at the very outside, it was devastating. Now? Five years is a really fucking long time and I can enjoy a lot of things in that time. My fear now is more of whether I'll have a painful end than that the end may be relatively close.
posted by MsMolly at 10:33 AM on September 3, 2016 [5 favorites]

Here's one article i found (not the same one I read before) that has some information you may want to talk to your oncologist about...
posted by sexyrobot at 10:44 AM on September 3, 2016

I'm so sorry to hear this. One of my friends went through a very serious cancer diagnosis, and while she will never fully recover, she is doing amazingly well and many people just meeting her would never know what she has endured. One of the things she did was she selected a good friend to be the communicator for other friends; and she elected to not talk about her treatment with most people. I mean, if she wanted to talk about it, she did, but most of us knew not to bring it up unless she did. Her point person was the one who told others about the initial diagnosis, and then sent periodic emails with updates. Later, my friend did choose to send updates herself. I think having an initial "point person" could free you from having to have the same conversation repeatedly and also spare you some clumsy reactions from people who don't know what to say. At work, I would recommend not talking about it and perhaps also designating a friend there to be your contact. That person could let it be known, "Fencing Gal will not be talking about her treatment. If you want to help, we're collecting donations for extra housekeeping for her." (Or donations to a cancer org, or no donations, or whatever you like). A common refrain I've heard others say, is that you may be disappointed by some friends or family who are not helpful or kind to you. People who avoid you. At the same time, you may have a flaky friend or acquaintances who rally and are more supportive or helpful than you expect. This is really common. I remember someone saying pre-diagnosis, she could have made lists of people she thought would help or not help her. Post-diagnosis, she said she could have switched the lists.
posted by areaperson at 10:48 AM on September 3, 2016 [4 favorites]

I have a small book recommendation. I like Dan Shapiro's writing. He survived Lymphoma twice and later became a doctor, which I think gives him a unique perspective. He has a book called "Mom's Marijuana" and here's a NYT interview with him.
posted by areaperson at 10:58 AM on September 3, 2016

I don't know if you want to share your diagnosis, but someone close to me went through AML and -- the one good side -- the chemo for it was much easier than regular chemo. It was a logistic problem of spending a lot of time on chemo (just getting the infusions), but it didn't come with what we think of as typical chemo side effects of nausea and pain and so on. Something you'll get a better handle on once you talk to the doctor.

Another thing to know for the future -- if you go into hospice, the hospice program typically can't do "treatment" of the core disease, but it can do treatments that serve to mitigate symptoms and improve your quality of life.... and that can include blood transfusions, since they help you with the energy you need to do your activities of daily living. The hospice might not know this at first and you might need to get your doctor's say-so, etc -- but it's worth pushing on stuff like this if the transfusions make a difference for you.
posted by LobsterMitten at 11:19 AM on September 3, 2016

(His treatment drug was Vidaza, which he was on since he was too old to be eligible for some of the other drugs or a stem cell transplant.)
posted by LobsterMitten at 11:34 AM on September 3, 2016

It's multiple myeloma.
I will be getting my treatment at a highly ranked research hospital. They have several clinical trials for multiple myeloma in progress, and my doctor has been an author on several research papers about myeloma.
I appreciate everyone who has taken time to answer, but right now I'm more interested in living with the diagnosis than thinking much about dying, though of course that's on my mind.
posted by FencingGal at 11:35 AM on September 3, 2016 [2 favorites]

My Dad had multiple myeloma and when you're googling survival rates keep I mind that they have made some really great advances in treatments in the past decade.

In terms of living with it, you could have years where your life might be much like it is now if you respond well to treatment. But I would say be cautious until you finish your first round or two of treatment and have a better sense of how aggressive your particular case. I met lots of people online that have lived for over 10 years and are having a good life. Not to be a downer, but in my dad's case it became clear fairly early that he was going to have a tougher time of it. Having said that, he still had 5 pretty good years post diagnosis.

There's no recipe for getting through this point, but in many ways it does get easier and a bit less top of mind. It's amazing what we can adapt to as humans.
posted by scrute at 12:09 PM on September 3, 2016

I know I am stuck with this diagnosis, and that's just a hard reality. But I don't want to feel like it's my whole life from here on out. How do people negotiate that?

I don't have cancer, but I do have kidney failure due to a hereditary illness. It's incurable and irreversible. If it weren't for medical intervention in the form of dialysis three times a week, I wouldn't be alive right now. It kind of blows my mind. My dad's dad died of this in his mid 30s. I'm 40 right now. Had I been born several decades earlier, this kidney failure would have been the end for me.

I don't really have any idea of life expectancy. Some people last a few years, some people last decades. There's quite a bit of uncertainty. I do know I'll always be on dialysis or negotiating some sort of transplant, and that my concerns will always be a little different than those of people who are healthy.

So I've been thinking of my life as two halves: Everything I accomplished and got to do during the first, healthy part of my life, and everything I will manage to do during this second stage. And thinking of it that way makes this second part feels like a bonus -- there's a lot of extra health stuff to deal with, and uncertainty, too, but a lot of freedom because I don't really feel like I have to play by conventional rules at this stage. It's extra time.

It takes a while to adjust. I've had dozens of moments where I think, OK, this is my life now. Things are different. My housekeeping has really taken a dive (I use disposable silverware and paper plates when I can't bear to do dishes). I have let up dramatically on my usual to-do lists. My friends and family give me a lot of slack. I've had to simplify my life quite a bit.

The things that've been most helpful for me have been:

1) Setting a new threshold of what marks a good day for me. Now, if I can see the view out my front door, play with my dog, eat good food, feel the fresh air on my face, that's a good day. I used to ask for a lot more than that.
2) Keeping things as normal as possible/manageable. I'm home in pajamas a lot, but going out to see friends from time to time and sitting in a cafe like a normal person always gives me a boost and helps to be a fruitful distraction.
3) Accepting help from friends and medical professionals. People really do want to help. I've been bowled over by the kindness found in unexpected places.
4) Finding satisfaction with the life I lived before I got sick. I've spent a lot of time thinking about the places I've been and all the stuff I've gotten to do, and it was a life to be proud of. I don't really feel disappointed. Right now I feel satisfied, and whatever happens next is gravy.

It takes some time and adjustment. But time really helps. And I've committed to being the healthiest sick person ever, which is the best I can do.

Feel free to email me if I can help....
posted by mochapickle at 12:10 PM on September 3, 2016 [8 favorites]

I'm sorry you're dealing with this.

I don't have personal experience, but I have some professional and second-hand experience. The people I see who seem to do the best (psychologically) living with a incurable illness seem to have followed a similar path.

First, they've taken a good hard look at the way they want their life to end - making a living will, creating power of attorney, double checking life insurance policies and beneficiaries, and making sure that their death will be as easy on both themselves and the people around them as possible. For those without family or close friends, that has often meant investigating professionals/agencies that can help them.

Then, with some idea as to how their illness will likely progress, they've done an inventory of their life thus far and want they want to do before they die. Then they've prioritized. If their expected remaining lifespan is (for example) 5 years, and the last bit is likely to be challenging, they've made it a goal to do X, Y and Z in the near future (1-2 years) so they'll have the energy and ability to do them. For some people that's a major thing and for others it's more like "repaint the house" kind of stuff - depends on the sort of person you are and what's important to you.

Prioritize your life. As a client told me, we're all going to die, but most of us just sort of wander through our lives without really paying attention to that fact. It's kind of amazing to have a bit of focus there - to decide that we don't give a crap about [these things] so we're just not going to do them. Let go of people, places, and things that don't make sense to you. For things that are important, find a way to keep them going (this is an area where friends can help out a lot).

Some people find it helpful to get involved with a group/agency that works with their particular illness - doing awareness, advocacy, or supporting other people. Other people want absolutely nothing to do with that sort of thing because it brings it too much into focus. YMMV on that.

Support is great if you can find something that works - either individual or group - but if it makes you spend a lot of time dwelling on something you don't want to dwell on, maybe it's not something you need right now. Keep it in your back pocket for later.
posted by VioletU at 12:23 PM on September 3, 2016 [4 favorites]

I am sorry to hear this. I was diagnosed with a relatively aggressive cancer 2.5 yrs ago. Caught it fairly early, but I have 12 yrs old, and it hit me pretty hard that i will not likely see all of the things in his life that I would expect a dad to see.
I have a terrific support system, and good insurance, good docs etc. so I put myself in their hands while I was in treatment. 35 radiation treatments, weekly chemo, the works. I tried, and was able to work for most of that time. i found it to be very therapeutic, because my time at work was the time that I was not a patient. It was the time that I was caring for others, rather than having others care for me.
Once I was in remission I worked to get fit again, and began doing bucket list things with my son. building memories. I let go of anger, tried to see how little is to be gained by petty annoyances. I am not perfect at this, but folks around me see the difference, and I see it as a reward to them for being so supportive of me.
It's difficult, sometimes, when you are cognizant of how hard people around you are working to make you comfortable, to allow yourself to have a bad day, but bad days happen, so let them happen. Take advantage of good days.

Also, I have an acquaintance who was diagnosed with MM and given 6 months to live, that was 8 yrs ago. Every day you are on the planet is a day that might be the day the cure/best treatment is found.
posted by OHenryPacey at 12:36 PM on September 3, 2016 [3 favorites]

right now I'm more interested in living with the diagnosis than thinking much about dying

If it wasn't clear from my posts above, it's also totally ok to just, you know, dick around like you usually do. Not everything I do is Fraught With Deep Significance now that I have cancer. I did figure out my one big motivator (spend time with friends) that I prioritize over everything else, and I'm doing a fair bit of intentional thinking about what words and things I'll leave behind, but I'm also playing Pokemon Go, trying new types of junk food, spending hours on Candy Crush, and buying cute shoes. Some people get all I Must Live My Best Life, but, you know, I liked my life pretty well before, so... I just keep living it to the extent that I can.
posted by MsMolly at 12:38 PM on September 3, 2016 [18 favorites]

Speaking to my cousin who lived 3 years after diagnosis, he said the thing that made his quality of life so much better post diagnosis was when he learned to say no. It was almost child like. If he didn't want to do something he would say no. That ranged from what to eat, to doing favors for people to going to events to things like when someone at the grocery asks if they can go in front of you because they just have a "few" items. He would laugh and say no. His time was too valuable. I think his standard line was, "No, sorry. Short timer here."

He wasn't rude about it (most of the time), he simply would say, "No thank you. I really do not want to go to dinner with Aunt Babs, but thanks for asking." Previously, he would have viewed it as a family obligation and sucked it up and gone.

He said it was such a burden lifted knowing that his final time was going to be lived on his terms not others.

He also had this concept of the clean desk. He had no loose ends open. If he got a bill, he paid it right away. He had to make a phone call, he called. He never went to bed with open items except some wood working projects that were more longer term. Never a dirty dish, etc. He felt that if he died at any moment, especially if he realized he was dying at that time, that he would be happy knowing he left nothing behind for someone else to do. HE took care of things like his funeral, his will, and any letters he wanted to leave for friends and family, almost right away after diagnosis. He just did not want to live with the feeling that he had something to do or had a to-do task list other than a bucket list.

He also ate a lot of pizza. He said it was because when he was little, his mother (my aunt) would not let him have pizza more than once a week. He would smile and say he was making up for lost time. Everyone had a pizza quota to eat and he was behind and was going to go out equal or ahead. He was obviously trolling me with that explanation, but the point was eating pizza made him happy so he was going to eat pizza.

Do what makes you happy.
posted by AugustWest at 8:50 PM on September 3, 2016 [12 favorites]

I know someone with multiple myeloma that was diagnosed this spring. She didn't really want to know what stage she was at, just wanted to be treated. On the up side, the chemo hasn't had much in the way of side effects, no nausea or hair loss. It's once a week of chemo for three weeks and one week off.

There has been redness and dry skin at the injection site and they do blood tests each week to see how it's working. They have her taking steroids with the chemo to help it work better. She has tons of energy chemo day and a bit of a let down the next. The steroids have her craving sugar like mad and she's had trouble with burping which she finds really annoying. It does seem to be working and the doctor is talking about doing stem cell therapy in the future to hopefully cause remission. So far it's been easier than she'd thought it would be. Your mileage may vary but I thought you might want to hear someone else's experience with the same problem.
posted by stray thoughts at 3:59 PM on September 4, 2016

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