side effects and solutions

The side effects of chemo continue to be interesting and baffling. It's everything from weeping eyes and dry skin to bone pain, and the way most meat tastes like tinfoil. Even my hair hurts. Even the side effects have side effects. Some days I feel like I am living inside that TV prescription drug commercial that spends most of its 30-seconds listing off potential side effects to a Musak soundtrack of classic rock.

I am assigned an Integrative Medicine specialist NP to help figure it out. Below is my current list.

Got good ideas? Leave your suggestions for solutions in the comments.

Side Effects and Solutions/Preventatives 

(cue Musak)

• fatigue - from chemo, immunotherapy, or radiation tx
• naps
• regular bedtime/morning routines
• daily exercise and/or stretching or yoga
• meditation
• daily nutrition/protein
• nausea
• prescription Compazine (procholorperazine) 1/2 to 4 tablets per day as needed
• Saltine crackers
• disposable vomit bags stashed everywhere, including the car
• mouth sores
• soda/salt mouthwash x3 daily (1/4 tsp baking soda, 1/4 tsp salt, 6 oz warm water)
• Prescription "magic mouthwash," which works well except that it's real side effect is diarrhea
• Sonic toothbrush to keep teeth and gums clean and gently 
• Outshine Creamy Coconut popsicles - non-acidic and cold
• diarrhea
• Imodium OTC, use as directed
• Prescription Lomotil (diphenoxylate/atropine) up to 4x daily
• Gas-X use with Lomotil for cramping
• Benefiber fiber supplement - 2 tsp x2 daily in a drink (hot or cold)
• Flax meal, 1 tsp add to Scottish oatmeal daily
• Align probiotic x1 nightly
• Dude Wipes On-the-Go flushable (not really flushable) wipes
• constipation
• regular hydration
• dried apricots 3-5 daily
• Miralax x1 daily as needed
• yeast infection (side effect of constipation/diarrhea cycle)
• Monistat 1
• cranberry supplement
• dehydration (side effect of constipation/diarrhea cycle) 
• Drip-Drop Electrolyte powder x1 daily in 10oz water
• Salt Stick Electrolyte Tablets x1 daily
• PowerAde Sports Freezer Bars (with electrolytes)
• Kinderlyte Electrolyte Drink
• 72 oz water daily
• IV hydration at hospital (as necessary)
• low white blood cells (compromised immune system)
• treatment with Granix - x5 doses, intramuscular shot, days 3-7 after infusion
• 100% masking out in the world and for non-quarantined visitors
• regular hand-washing
• daily showers w-antibacterial soap 
• low red blood cells (bruising, clotting issues)
• promote general nutrition
• adequate protein intake
• Green Smoothie: 1 c spinach, 3 oz plain greek yogurt, 1 frozen banana, 1 scoop It's Just Whey Protein Powder (unflavored), 1/2 c coconut water, drizzle of Torani Dark Chocolate Sauce, handful frozen raspberries, cherries, or blueberries. Blend in NutriBullet Blender
• Quest Chocolate Chip Protein Cookie
• Naked Peanut Butter powder - add to Scottish oatmeal daily 
• Kodiak Cakes Protein Pancake/Waffle mix
• blood transfusion (last resort)
• heart arrhythmia (may indicate other side effects - dehydration, infection, etc)
• monitor and take emergency action if not resolved
• increased blood sugar levels
• reduce and monitor sugar intake
• skin outbreak - hands, back, legs
• Aveeno Dry Skin lotion - non-greasy
• Aveeno Repairing Hand Masks - use nightly before bed
• Cerave Deep Hydration
• Aquaphor, cover with gauze
• gloves for protection 
• Liquid Skin for broken skin protection
• bone pain (side effect of chemo drugs plus the Granix shots to promote WB cell production)
• take an H-1 antihistamine daily (Zyrtek or Claritin) 
• prescription 600mg Ibuprofen
• prescription hydrocodone-acetaminophen (last resort to keep me out of the ER)
• Toradol (NSAID) administered at ER (last-last resort)
• peripheral neuropathy (numbness to fingers and toes)
• compression gloves and socks at symptom onset
• compression gloves/socks at infusion (preventative to restrict chemo drugs to capillaries)
• ice gloves at infusion (preventative)
• weeping, swollen eyes 
• Pataday antihistamine eye drops 0.10% solution (NOT the 0.20% extra strength because that makes my eyes twitch)
• bloody nose 
• MistAire Studio Cool Mist Humidifier is silent and runs all night on low
• Vaseline petroleum jelly (swab inside nose 2-3x per day)
• metallic taste and loss of salty/savory taste and smell - things that still taste normal:
• ginger hard-candy - Pri Nuggets Manuka Honey and Ginger
• raspberries, blueberries, cherries
• honey
• sourdough bread
• chocolate
• vanilla ice cream
• Scottish oatmeal
• chicken soup
• scalp/hair pain
• softest bamboo hats
• moisturize scalp - Oil of Olay
• silk pillowcase? (untested at this writing)
• hair loss (we knew that was coming)
• hats for warmth and protection
• Scotch-Brite Pet Extra Sticky Hair Lint Roller (roll the scalp daily)
• acid reflux
• prescription Prilosec 40mg daily (started 8/22)
• heart arrhythmia
• Alternating PVCs (non-series)
• high, non-aFib heart rate
• treat with increased (doubled) electrolyte tablets in addition to oral and IV fluid treatments for dehydration (started 9/26)
• fluid retention from IV fluids
• stop IV fluids for dehydration and push oral fluids (started 11/02)
• muscle pain
• legs: quads, hamstrings, calves (like shin-splints) - likely related to Taxotere (started mid-Nov)
• stay hydrated and keep up with electrolytes
• regular exercise and stretching
• inflammation between ribs (from radiation treatments)
• tenderness and aching of ribcage and spine
• treat pain with Ibuprofen or Tylenol
• skin irritation, redness, itching (from radiation treatments)
• irritation of radiated area of breast, underarm, and chest up to collarbone
• treat with oncology-lotion 3-4x per day
• do not use lotion within 2 hours of radiation treatments
• continue to use after conclusion of treatments 1-2 weeks 
• if skin lesions or internal burns break the skin, call radiology for treatment instructions

Daily Data

In my daily journal, my team and I track symptoms and care as well as count down the days from each infusion. We also monitor daily for things like infection, fever, unusual pain, Covid, flu, or cold symptoms, bleeding or bruising, anything new. All of it helps my Cancer Care Team make adjustments to my treatment plan as needed. 

• daily symptoms
• blood pressure - morning and evening
• temperature
• supplements: vitamins, fiber,
• medications: prescriptions and/or OTC as needed
• nutrition: calories, protein, nutrients
• electrolytes
• fluid intake: water plus other fluids
• exercise
• sleep

Onward!

 ~ Sherri

countdown to 3rd Infusion

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

 

second infusion week, scene 2

 So, if Sherri is the Negasonic Teenage Warhead (strong resemblance) and I am Deadpool (strange resemblance), I know what my role here is: lewd humor and racy double-entendre.

Okay...I know. This is a family show, so I'll be good.

(looking straight into the camera) I promise.

 

I just better not run into that big metal guy with his goody-two-shoes platitudes. Although, he may have come in handy in the ER the other night...but that's getting ahead of the story.

 

 

The weeks since the first infusion were uneventful...that is, if you ignore her dehydration on day 5 that required IV fluids, and the fairly constant gastrointestinal problems she had throughout the cycle. And the skin rash and breakout, but that was minor (easy for me to say...). And the mild nausea and general fatigue. And the tinglings of chemo-induced peripheral neuropathy (compression gloves and socks during infusion are supposed to help with that, she used them on chemo round 2). 

But it went as predicted: a couple of good days following infusion, then the poison starts to take its toll, symptoms worsen around day 4 through about day 7, then by day 10 it's not so bad. Except for the gut troubles. And the nausea. And the fatigue. Did I mention brain fog? At least she didn't experience any vomiting, which we were probably over-prepared for.

All in all we learned a lot, and that includes Merissa, who did a fantastic job of taking care of her mom that first week, in a badass paramedic/firefighter/drill sergeant/loving-and-concerned-daughter sort of way. With me at work, it was much relief to know she was there and Sherri would be well cared for.

Sherri's parents arrived for a visit the Wednesday before her second chemo treatment, which was on Friday 7/28. She was glad they came. During their nine days with us, her mom helped out by doing, among other things, 753 loads of laundry. She also baked 157 cookies, a quiche, a chicken pot pie, and a peach pie. And, she washed a lot of dishes and vacuumed the entire house. (Okay, 753 and 157 is probably an exaggeration. The rest is unembellished.)

 

 

Chemo day went well...except that Sherri had an allergic reaction to one of the drugs. It was mild with the first infusion and stronger with this one. It's really only a little bit unnerving when the nurses bring the crash-cart bedside before they start administering the offending drug. (Not really. It's a lot unnerving.) Now that we're sure the allergy is a thing, next time they'll add some things to the pre-meds BEFORE they give it to her, in hopes of mitigating the reaction.

  Becca left her home on the Oregon Coast to come take care of her mom on the Tuesday following chemo, which was nice because Wednesday was our 26th wedding anniversary. Work was slow, so I took the day off...and had a great time with DeVon and Dianne at Mt St Helens. It was fun playing tour guide, including taking them for a 3 mile hike near the Coldwater visitor center on an interesting trail I'd never walked before. We came home to a great dinner Becca prepared while we were away, and that was very nice, too. So was the marionberry pie Sherri made for our anniversary.

But Sherri and I still think this has been the weirdest anniversary we've ever had. We're going to have to make up for it next year. Maybe the next 10 years.

DeVon helped a lot with the everyday stuff during the visit, and watched baseball with Sherri every day. But where his presence and experience really came in handy was about 10PM on Thursday night, when Sherri started having a new symptom: pulsating pain in her lower back that seemed to radiate out to her abdomen. The pain was so intense that she could not lay down, and she came out to the family room to request a consult with Doc Hale. He performed a bit of an exam, which ruled out some things but left a lot of unknowns. He recommended she get ahold of the on-call doctor on her medical team, which she did.

That doctor told Sherri that it was probably a side-effect from the chemo, and it could either be an uncommon side effect that is uncomfortable but not serious, or a rare side effect with possible life threatening consequences, and the only way to determine which it was was a trip to the ER for medical testing. (Cue the big metal guy mentioned earlier...)

We got to the hospital just before midnight, did an intake, sat in the waiting area. That's where the first appearance of the security staff occurred, when a very drunk and very loud woman, who had been brought to the ER by ambulance, because she called 911 to be taken to the hospital by ambulance, got very angry about having been brought to the hospital by ambulance when there was clearly nothing wrong with her, nevermind the stroke symptoms she told the paramedics about. The security guys calmed her down, took her to the back corner of the waiting area and sat with her, and that's where she started vomiting. Good times.

We were soon called into a different room because the triage nurse had decided that, since Sherri was showing signs of dehydration again and already had a hospital order to receive a fluid infusion if needed on Friday, they'd just go ahead and do it then. The RN went over the procedure to access an IV port with the nurse intern and the nursing student also present. Sherri sat patiently through the nursing student's questioning, and didn't show any anxiety when the RN had to help the intern access Sherri's port to administer the IV. I even heard her tell them that she grew up around teaching hospitals. I wish I could say I wasn't nervous about it.

Back to the waiting room until we get called for the CT scan the on-call doc recommended. Just as I was about to relocate us in the waiting room, because I'd noticed that the girl about 10 feet from us who was sitting on the floor and leaning against the chairs next to her was quietly vomiting into an emesis bag, we got called back into the nursing area to sit in a hallway there to wait for the CT scan. More good times.

After the scan we got set up in a private room because they were concerned about a cancer patient being exposed to the general population of the waiting area, and there we waited for all the testing to come back. For hours.

In the middle of one of the nurses checking in on us, there was a disturbance just outside our room, by another angry person, probably drunk, who'd arrived by ambulance and was trying to sneak out the back door. We could hear one of the nurses insisting that he take his hands off her employee. 

That's when I noticed that one of the security guards on duty that night might as well have been the big metal guy, because he was about as wide as the door he had to duck to walk through. The nurse told the drunk, "The boys are here now, are you going to cooperate with us, or are they going to have to manhandle you?" He chose cooperation.

And that's when I came to the conclusion that it takes a special kind of medical professional to work overnight in an ER.

Sherri's tests came back (finally) and revealed none of the rare and potentially life-threatening side effects, just the annoying and painful uncommon ones. They treated her with a pain reliever. We went home about 7AM, with a prescription for more pain medication and a plan to treat the new symptoms as they appear.

So after a lot of sleeping this weekend, we've passed the 4-10 day low point after chemo. Sherri says brain fog is real, and there's other unpleasant side effects: like almost everything tastes like aluminum; there's a lot of general fatigue; and the skin rash and mouth sores are back. The chemo has taken almost all of her hair, even the cool mohawk. But she's feeling a little better every day. 

She even made me a big pan of brownies. She said it was for our anniversary, too. (Hey, the pie is gone already.) And we deserve a double anniversary. 

~Rick

Us, 8/2/2022, near our favorite place.

p.s. Shout out to JR, Nichole, Heather, Aly, and my siblings--Debbie, Brad, Amy, Scott, and Lori--for all their various forms of support, near or far, all of it full of love. 

p.p.s. Also know that I get great joy from each of your cards, notes, postcards, and messages! Our Christmas-card pantry door is filled with a rotating display from you guys. Thank you so much 💖 (Keep 'em coming!!)

        Love to each of you,

                    Sherri

second infusion week

 More to come soon, from your friendly neighborhood...oops, wrong costume...from a guestblogger. As soon as he writes it.