Today is 19 days from the second infusion, and this Friday (8/18) is scheduled for my third infusion. Three out of six. Halfway, although it won't seem like halfway until I've gotten to this point on the other side of the next infusion and through the next wave of side effects.
How I Am Doing
People keep asking, and I feel like I repeat myself. I was warned that it would feel worse each time, and that is true. Also each infusion seems to surprise us with something new. I still feel generally crappy, even at Day 19 when I am through the worst of the cycle. Today I haven't had to take any prescriptions for any dramatic side effects or new issues, and I'll consider that a win. Looking back, it's a daunting list of side effects—so many that I made a separate post for them (it will post after this update).
My care team at home has made sure I get what I need and then some. My Cancer Center Care team has also been quick to respond to every call, so I feel supported from all sides. At least these last few days before the next infusion feel less dramatic, even if I am still not feeling entirely well.
How You Can Help
People keep asking, and I haven't had a good answer until recently. I realized two things: 1) your words bring me joy; and 2) we have a need for unusual items and support for my care team.
Send Your Words
Our Christmas card tradition is to post cards and pics on our pantry door. Now it is repurposed as the Love Wall for your cards and notes, snakes and geckos. The refrigerator is also covered with cards and pictures and postcards from all y'all.
Since I am essentially quarantined in my home, even the smallest touch from the outside brings me joy and reminds me that I am connected to my people in the greater world.
Your digital presence also brings me your words. I love my writing group that continues to meet online, even though I've missed a few lately. I love every Zoom and Facetime coffee date with my friends and family, every DM, forwarded Tik-Tok, or text message. Keep doing that.
Each kindness means so much when I can't get out and often feel so bad that I don't know what I need or want. Thank you for every touch, and if you think of it again, send me your words—by snail mail or the internets.
Support for the Home Care Team
My care team outside of Rick includes my daughters, nephew, and sister. They are each giving of themselves and their time to be here in the house and available during the worst of my recovery each time. This care has proven to also come with some expenses. So far, everyone has been able to work remotely, but there are travel expenses (Becca coming from the coast each time, Deb coming from Denver) as well as unexpected specialty items: gloves, cleaning supplies, masks, inordinate supplies of soothing-lotion Kleenexes, Pedialyte and fluids, lotions, soaps, bone broth and Saltines, food to keep the team fed and caffeinated, and gas to cover errands and pickups from the hospital, pharmacy, and store.
This is not an ask, merely an option. If you wish to give dollars to support my home care team, you can message me for my Venmo info. Tag your donation CSF (Cancer Support Fund), and every dollar donated will go toward the care team and support expenses. Don't go crazy. We're not underwater over here, merely allowing that there's room for you to help if you wish.
Doing Hard Things in Small Steps
When I was newly sober, I lived 800 miles away from my three daughters. I made a commitment to do the daily work to stay connected to them, even if it was difficult or painful, and even when it never felt like enough. Somewhere during my 3rd or 4th years of sobriety, someone asked me if I thought I was doing any of us any favors since I had tried and failed to get custody back. I remember thinking hard about it, and in my heart I knew that even the smallest step would make a difference in the end. I was in it for the long haul. It took seven years before we were all living under the same roof again, but the beauty was that our relationships with each other already existed, strengthened by those years of work in small steps to be consistent and stay connected.
The theory of accumulated strength is also what carried me through my PhD program while I was away at school in Milwaukee, WI—1756 miles away from my husband at home and my daughters. The kids had all made lives for themselves by then, but it was still hard to be so far away. And then I compounded it after graduation by getting a job at Marquette University, also in Milwaukee, for a few more years. Still the daily work accumulated to a success that has launched me forward into the next phase of my life.
So this cancer "project" isn't anything new in concept, only in the details. The solution is the same: do the work of the small, daily steps with a commitment to consistency and an eye on the long-game.
Thanks to each of you for being a part of my journey. I see you, and you are loved.
~ Sherri
"Be bold and mighty forces will come to your aid."
~ Hoffman Family Motto
it's hard. as you say, everything behind you prepares you for everything in front of you.
ReplyDeletei can't really comment on your chemo, other than to say i suspect it's harder and
certainly longer than my radiation. because i'm not that clever, i figured i'd schedule
the surgery to remove the cancers that i wasn't removing with radiation three days
after the last zorch. and throw a trip into anza borrego desert to celebrate into that
weekend in between. of course. to go jeeping.
so, in a valiant attempt to make what they were doing to me more difficult than it
already was, i added a scoop of stupidity. you don't have to do that. yours is difficult
enough.
because mine was short and steep, i remember the last week in a series of gasps.
the day before the last zap, the technician remarked that unless the machine broke,
friday was my last treatment. i responded that it didn't matter what the machine did,
friday was the last swipe they got at me.
however, they did well. my last series of pet/cat/mri/ scans shows no cancer in the
organ, and no cancer created by nuking me, which was a side lottery radiation buys
you a ticket to.
that surgery i had scheduled right after, 'cause i'm such a badass? half way thru the
nuking, i called up and pushed it out a month. i'm really suzi creamcheese at heart.
"...everything behind you prepares you for everything in front of you." Indeed it does. ~ Sherri
DeleteThe other Hoffman family motto also seems fitting here:
ReplyDelete"Don't die"
<3
DeleteSherri, Sending healing energy and strength for this next infusion and for the whole journey, or safari as another friend also going through the trials of cancer is calling her trip. You are a brave strong woman, who has taken many big steps and accomplished much. I barely know you, I didn't know about your recovery or children, I do know of your affinity with nature, your perseverence, and that you hold a true heart. I forget how we first connected, maybe on Facebook? But we met in person at Penelope's Salon when I read, and I so appreciated your presence. My heart is with you. Cancer has been an undercurrent in my life, my father died from nonhodgkin's lymphoma in 1964 before they knew how to treat it, he was 49 and my life changed forever; my grandmother had a double masectomy and died. So many friends and coworkers died from cancer and my 8-year younger sister has multiple myeloma. Yet here I stand, surviving with AIDS. It's a strange world. We are environmentally messed up, our food system is terrible with many additives that cause cancer to start. It is my belief that cancer is unavoidable. I wait for my own diagnosis. Even Susun Weed, who certified me as an herbalist, had breast cancer and is still with us. This is an epidemic we are all living with. My heart to you for survival. For love. With love.
ReplyDeleteJulene, my heart is with you as well. ~ Sherri
DeleteSherri - I've known you ever since we were in junior high and we've been friends for a long time. Breast cancer is a bitch. My wife Carol has been through it twice (BRCA2 positive as it turns out) and is still on the right side of the grass. I do understand what you are going through and have been hanging on every word you and Rick have written here. Hang in there - it will get better, just not next week...
ReplyDeleteCliff, I'm so grateful for your friendship for all these years. You are dear to me. Thanks for sharing more about Carol's journey. I followed much of her blog through that last one, but I didn't/couldn't fully understand how hard it was for her until now. Context is everything. I'm in for the long haul with this one, so now it's just the business of surviving myself through each round. Thanks so much for your support and kindness. It means a lot to me. Love to you and Carol. ~ Sherri
Delete