in the chemo infusion center today, i noticed a young woman and her husband. she looked terrified, and he looked somewhat like mike, most notably that they were wearing close to the same outfit (i’m not sure if guys wear outfits but you know what i mean). i laughed inside at the uncanniness (and unfairness) of it and moved on. until flora, the wonderful technician, pulled me aside and asked if i’d be able to talk with a new patient who was having her first chemo today and wasn’t sure she’d get through it. of course i was happy to. as it turns out we have the same diagnosis and same exact chemo plan. 12 weeks taxol + herceptin, 4 dose dense adriamycin + cytoxin, and another 40 weeks of herceptin. we sat and talked. her name was kristin and she was so incredibly afraid, on the edge of losing it. it was palpable. afraid of the unknown, the side effects, the length of treatment, the diagnosis and dying too young. i told her that she will live through the treatments, she will be alive on the other side.
no one told me that.
it sounds silly because it seems obvious. but here i am, alive. making brunch plans, trying on maxi dresses, wiping dingleberries off my cat’s butt, negotiating window installations with our contractor, scheduling work conference calls, bumping in and out of feeling up…and down. and full of fear.
with the bombings in boston yesterday i saw this article that references mr. rogers. he said, ‘“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'”
i was happy to be able to help kristin today, even in a tiny way and even if it rocked me to the core remembering how i felt my first day of chemo. it wasn’t about me though. early on, hearing from other breast cancer survivors, on anything from navigating treatment and the Bay Area doctors to how isolating this diagnosis can be, was incredibly insightful. whatever. whenever. i’ll always be in debt to these women who rushed in to help or held back when they thought certain information would just overload me.
thinking about that and boston, it’s forced me to finally sit down and write the post about how to be a friend to someone in need, especially someone with a illness.
many people have offered help, many people haven’t offered help (for lots of reasons, i’m sure–busy-ness, fear, denial, not wanting to intrude or burden us with a request). and, mike and i suck at both accepting it and asking for it (for lots of reasons too–pride in wanting to hold it all together, thinking we have all the resources we need, not wanting to be a burden on others) (we’re all just too damn nice to each other with the whole burden thing, as an evident aside). although an alternative to this viewpoint is one my friend kelsey shared by joe biden, when he lost his family in a horrific car accident: “if you have to ask [can i help], it’s too late.” i agree with some of the layers. there is always room for help in anyone’s life.
for a friend going through a difficult time, a place to start helping though is asking: “will you let me do [fill in blank] for you?” and adding in something like, “please know that i’m here to help in any way that i can. if the time isn’t right now, that’s ok. i’m here and will be here. and i’ll ask again in the future.” this is often more helpful than an open-ended, “what can i do to help?” that can be overwhelming to answer.
to help figure out what the [fill in the blank] is, think about what you can do.
- if you’re an organizer, create a health binder, with places for doctor visit notes, prescriptions, pathology/biopsy records, bills, and so forth.
- if you’re in PR, be the point of contact for sharing health updates with friends.
- if you cook, drop off fresh or frozen meals (announced or unannounced).
- if you’re a researcher or scientist, research the latest national cancer institute standards of treatment, clinical trials, or anything other questions (or debunking miracle cures sent along).
- if you’re a planner, setting up a mealtrain or lotsahelpinghands websites, with space for others to volunteer their services.
- if you drive, give a ride to treatment.
- if you play scrabble, initiate a game online after downloading and setting it up on your friend’s tablet.
- if you’re out running errands, ask what is needed, from kale to toilet paper.
- if you pray or have a spiritual practice, pray or have a spiritual practice with good intentions towards healing.
- if you have patience or a knack for navigating insane drug addicts, pick up prescriptions at the 16th and mission wal-greens.
- if you can write, send a note hello and share things about you, your life, that you’re thinking of that person, and maybe even throw in a favorite memory you have together.
- if you have thumbs, send a text just saying hi and that person is being thought of.
- if you golf, invite mike out.
- if you read, follow along on caring bridge (although we don’t know who is out there…you blog stalkers you…;-))
- etc etc etc.
all of these add up to you being present in whatever way you can be.
beyond being present, here are some other things to consider, turning it a bit more into my voice:
- be patient. when i break plans or don’t get back to you, keep trying. it’s not about you. knowing that you will be there when i’m ready is incredibly comforting; even hearing that truth from you is better.
- be willing to listen and learn. ask questions. and actually listen to the answers, make note of them so i don’t have to repeat myself in a week. this also means leaving preconceived ideas on the shelf and taming your own anxiety. or admitting that you don’t know anything about the disease or diagnosis but want to understand.
- be open. ask how i prefer to communicate. offer up the space that i don’t have to answer the questions if it’s too much or i want to talk about something else. and being open is also being open about yourself, what is going on in your life, your ups and downs.
- be forward. it’s better to do something than not do something. we have gotten so overly sensitive, and waiting around for permission to do something is the same as doing nothing. for example, call me even though you don’t want to interrupt me because i might be sleeping.
- breathe before you speak. it’s even ok to rehearse what you might say to me so that it doesn’t come out as, “my aunt had breast cancer and died.” or, “i know someone who worked all through chemo and therefore you should do it too!” or, “my uncle drank essiac tea and miraculously cured himself of cancer so you can too!” or, “you drank a lot in college so that is probably why you got cancer.” thinking being you speak might help avoid me feeling bad about my life, decisions, or abilities. or it might help you consider what you would want to hear if you had breast cancer. this may be the toughest one, because we have pat answers for things that make us nervous (e.g., be strong! you can do it! stay positive! i don’t know what to say so i’m going to just exclaim something empty and meaningless!). i know, this may be contradictory to being forward; saying something and saying the wrong thing is still better than sticking your head in the sand, at least in my book. this article in the LA Times was sent around BAYS recently; it’s a useful and elegant guidepost for how to say the right thing and to whom. it’s about concentric circles from the patient outwards. the bottom line: comfort into, dump out of the circle.
- be ok with not being recognized. hearing or reading things like, “no need for a thank you.” “no need to write me back.” “no need to call me back.” is very liberating. i was raised to always write thank you notes, and will generally tend to acknowledge things, but being released from it takes the pressure off. if you’ve sent something and haven’t heard from me and ask “did you receive xyz?”, i now have a [likely unintended] layer of stress and guilt for not beating you to the acknowledgement. if you’re super concerned about the postal system, get a tracking number.as an aside to this, i don’t need gifts. but for those at a physical distance, sending packages has been a way to be present. and ok, it’s been pretty awesome too–cozy and handknit scarves and socks, lotions and balms for chemo-impacted skin, an eye mask, good luck talisman, meaningful jewelry, cat toys, wind chimes, candles, meal gift certificates, tea, fruit, magazine subscriptions, bread, books to get lost in and books to make us laugh, flowers, sweets, cookbooks, games and puzzles, music, yoga pants and pajama jeans, and a can of corn. all with great thoughtfulness and meaning and intent.
i half-jokingly mentioned inviting mike out for a round of golf. one last thing here re: the caregiver. it’s been amazing to see cards, messages, and gifts, including a few choice great lakes beer selections, for mike. he’s obviously as much a part of this equation. caregivers are the unsung heros. he hates that i’m typing this right now. modest mike.
i’ve said this before, that it’s hard not to feel good and valued when getting messages of support. knowing that we matter and are loved, and even sometimes the reasons why that is true, is always a win-win.
ok, whew. brain dump, check. i’m not saying here that with this experience or knowledge in hand, you, or me (man in the mirror, anyone?), are going to hit a homerun every time. but maybe this can be something to refer back to in the future when the time comes, although i hope it never does.
we know though, there are unfortunately times when we’ll all feel fear and vulnerability. there are also times we will feel strength. and sometimes helping someone else in a meaningful, thoughtful way can be a source of strength. i see it in you, and today was thankful for the opportunity to find it in me.
prayers going out to keith tonight and for mrs. carpenter. and for all of you.