How to Care for Someone with Cancer

Today I am interviewing Marjorie Kunch, an Orthodox children’s book author, who is currently in active treatment for stage 3 breast cancer. You may remember her book, “When My Baba Died” and “When My Yiayia Died,” which help children understand death and the Orthodox funeral. She also has an activity book that is perfect for children that helps them review the material in the books!

She’s recently released her new book, “When Mama Had Cancer,” which teaches children about cancer from diagnosis to treatments and how to rely on their faith to get through this difficult time. She took some time to answer a few questions that I’m happy to share with you!

1) Can you briefly describe what made you go to the doctor? I’m sure there are subtle signs people may brush off that you’ve learned to take seriously. 

The summer before my diagnosis, I took a pilgrimage to Iona and happened to notice a lump when I returned home. Having cystic breasts, I brushed it off as I have had lumps come and go in the past. It was located in an odd area, near my chest wall right along where my underwire hits, so I thought perhaps it was an irritated milk duct and put it out of my mind. My husband was just laid off also and we had no health insurance at the time. This was June 2016 and I was 40 years old. Being a homeschooling mom of a 4 and 6 year old made it easy to put my needs aside from being so busy.

We ended up having a whirlwind summer which made it even easier to put it out of my mind, with my husband interviewing for a new position in August, accepting in September and putting a house up for sale, we moved across the country in October, then unpacking in our new home in November. I had health insurance again, finally, but still put my needs at the bottom of the list of “things to do”. I brushed against the lump in the shower and noticed it seemed larger, but with the rush of the holidays I forgot about it again.

Around the new year I noticed a clear discharge from my breast happened once or twice, now a seed of worry began to grow but honestly I talked myself into believing it was nothing. “I don’t smoke, I don’t drink, I nursed both of my kids past a year, it’s not in my family, the lump is painless and mobile not fixed, according to Dr. Google it can’t be cancer!” I told myself. The end of January my cycle was extraordinarily long, so I finally called my gynecologist for an exam to see if a uterine fibroid was acting up. After dressing, I literally was walking out of the door then mentioned, “You know what, I have this lump…” the doc asked if I had a mammogram yet and I said no. She wrote an order and said she was sure it was nothing, but now you’re 40 let’s get a baseline reading. Literally the next day my unusual, unexplained bleeding ceased. I honestly believe this was the hand of God as I wouldn’t have gone in to see a doctor for a lump alone, it took literally bleeding for almost three weeks to finally put my needs at the top of the “to-do” list!

The mammogram necessitated an ultrasound, the ultrasound results sent me to a breast surgeon, he said the exact same things I did, “You’re so young, it’s not in your family history, you don’t smoke, you nursed for years…I’m sure it’s nothing!” He left it up to me, to wait 6 months and have another mammogram, or go for a biopsy now. My type A personality kicked in, and given my background as a funeral director, I’ve buried women my age who passed from breast cancer. I knew I would be hyper-anxious for those 6 months so I insisted I go for a biopsy to determine what it was, although the surgeon told me he thought I was overreacting.

March 3rd, 2017 I had my biopsy, March 6th I received that dreaded phone call-“Mrs. Kunch, you have breast cancer. Come see me and the oncologist tomorrow.” I keened, I screamed, I raged. How? Why? I just couldn’t wrap my mind around it. “It had to be a mistake” I told myself. I went in on Tuesday and he told me I was triple negative-the worst possible type of cancer. He scheduled my port implant for Thursday and my first round of ACT, the infamous “red devil” chemo, that Friday. Although I felt like I was underwater and moving in slow-motion, I threw the brakes. “How did I go from it’s nothing to the worst possible cancer? My FISH test hasn’t come back yet which definitively says your type of cancer, honestly I’m not convinced it even IS cancer, I am not agreeing to all of this until I get a second opinion!” and I walked out over the surgeon’s objections and dire warnings. “Don’t you want to be around to see your kids grow up?” He asked! Now I was enraged, I shot back, “If I had listened to your initial suggestion, I would have waited 6 months, and may not have even survived!”

I scheduled a consult with MD Anderson, which I found out after the fact is one of the best cancer centers in America. It was also exactly 10 minutes door to door from my new home. If we had remained in Chicago and not moved for this job offer, it would have been an hour and a half, if not longer, in city traffic, to drive to a local cancer center of similar quality. Again, the hand of God in granting us this one job opportunity to pursue. It placed us right where He wanted me! Turns out I wasn’t triple negative, there is another chemo regimen for my type of cancer, Her2 positive, so if I had stayed with my initial doctor and not “fired” him I wouldn’t have been on the optimum medication. Again, I believe God had a hand in directing my steps. Normally I am a “Whatever you say, you’re the doctor” type of patient. If I had been like that, I very likely would have died. My cancer was already invasive and in my lymph nodes by March, I shudder to think how riddled my body would have been by September.  Thank God I listened to my gut! If only I had gone the prior June though…

2) What is something you wish you knew that you only learn if you have cancer? 

Cancer doesn’t play by any rules. Cancer doesn’t care if you did it all “right”-there are some women in my support groups that ate only vegan organic for 30 years and ran marathons who were afflicted. Cancer can trick doctors-it can present itself like a benign fatty tumor by being painless and mobile. Cancer doesn’t care about your age-there are some women in my support groups who are 23 and stage 4. Cancer doesn’t care if nobody in your family had it-I learned most breast cancers aren’t hereditary, 1 in 8 women will be diagnosed regardless of genetics. That shocked me!

I was also shocked to learn that breast cancer is an entire sub-culture with it’s own lingo to navigate, foundations and clubs to join, and even its own industry complete with a “pink-washing” phenomena. Cancer treatment runs in the hundreds of thousands of dollars-just one person’s treatment-and I chose to “go flat” and not have reconstruction after my double mastectomy (which is an entirely different kettle of fish! Doctors will act like you’re insane for not wanting false breasts surgically attached! I ended up firing a second surgeon for not respecting my wishes to live naturally without implants.) Women who choose implants have several other surgeries besides for thousands of dollars beyond what I have racked up so far. It’s bewildering. Call it intuition, call it the Holy Spirit, call it a gut feeling, know that God gave you an intellect and you absolutely have the right to seek a second or third opinion and to keep on searching until you find a doctor who respects your wishes.

There’s so much information out there, and I knew just enough medical terminology from my anatomy and pathology classes as a mortician to be dangerous to myself. I read peer reviewed journals into the wee hours of the morning every night for weeks after my diagnosis and drove myself crazy. That’s one final point, cancer CANNOT be micro-managed! It’s going to do what it’s going to do, not to scare anyone but I know of women who were stage 0 and died within 2 years of diagnosis (normally they have a 99% chance of survival) I also know of stage 4 women who are living vivaciously 20 years plus, when normally they only have 3 years of expected survival. It is ALL in God’s hands! Get a second opinion, read a few books, look at a few trusted sites (NOT blogs!) but don’t drive yourself crazy trying to reinvent the wheel. Take a deep breath, make a choice that feels right for YOU, and pray, pray, pray. Lean on Him for your strength and lean on the Church and Her saints during this season of illness. Draw near to God, and it doesn’t matter if you survive 2 or 20 years, you will have eternal life. Rest in that.

3) When I hear that someone has cancer, I start to think about what I can do for them, but I don’t know what is best. What are some things you found helpful or needed during your journey? 

In the beginning, support was what I most needed. A shoulder to cry on, someone to vent to, someone to tell me to reign it in when I chased rabbit trails and ended up researching until 5 am! It’s counter-intuitive, but I also needed space. I am introverted by nature and wanted to be on my own to process this. Invite, even if they say no, invite them anyway and keep in touch, maybe by text or message. Let them know you are there for them, say it again, then say it some more. They will be so wrapped up in their new diagnosis they may not hear you. They aren’t being selfish during this time, it genuinely consumes you in the beginning.

During chemo, I received a 2 inch thick binder of “rules” to follow while in treatment. It was stated again and again to be cautious of the public as a cold can send you to the hospital and a flu could kill you, as chemo kills the cancer cells and your immune system both.  Don’t be offended if your friend quarantines themself during this time or becomes hyper-sensitive to your sniffle and asks you to use hand sanitizer or even a mask when visiting. You typically can’t eat normally while on chemo, but meals for the family is very helpful. I was living off of V8 and felt guilty my kids were living off of Uncrustables but I simply couldn’t work in the kitchen. A website like mealtrain.com is helpful in this situation.

By the time surgery rolls around, chemo is finished so being careful of germs isn’t so much of an issue anymore. Offer to take the kids someplace fun, or bring over the fixings for an ice cream party and a movie. Recovery is tedious and your friend can’t drive for at least 4 weeks. With drains in, they wouldn’t feel like going anyplace anyway.

Radiation was my personal challenge. This is intensive, every day for six weeks is a typical course of treatment. I ended up burning badly, which was atypical. Most women do not burn but become severely fatigued. Offering to watch their children or drive them to their appointment (it’s usually only 30-45 minutes long) would be a huge blessing! I don’t know what I would have done without another Orthodox homeschooling mom and family who helped me with the “heavy lifting” during this time! My husband had to work and the radiation hours were always right in the middle of his shift.

4) Sometimes it’s hard to know what to say to someone who is sick. I don’t know if I should ask questions about their cancer or give them their space. Can you give any advice?

Remember, for some people, asking for help is NOT in their vocabulary. They could literally be drowning and still be silent. Not out of pride, but out of habit. Usually able to juggle life, they think cancer is just one more ball in the air. It’s not but until you’re there, you don’t know that! Send a card, send a magazine subscription, offer to come along on a chemo treatment day and watch a funny movie together, knit them a fuzzy hat for when they are bald, just hold space for them and be present. Matthew 25:36

5) Is there anything people often say that might not be helpful? I know sometimes people say well meaning things, but it can be frustrating to hear over and over again. 
I know people mean well, but it was extremely hurtful for me to hear about “the power of positive thinking” and “keep smiling”. Some days I was not positive, some days I was absolutely morbid and wallowed in self-pity. Some days I literally planned my own funeral. People recoiled in horror and almost shamed me for what I needed to do to process this in my own unique way. I needed to hear it was ok to not always have a smile on my face, as if I didn’t feel guilty enough for being sad or angry in the first place.

Also, please keep in mind that Orthodox practices are very specific and not to be offended if someone declines an offer to have “holy oil” applied by someone who is NOT an Orthodox priest. Mixed faith families may not understand that the Orthodox cancer patient cannot be communed by a heterodox minister and during a cancer diagnosis it is NOT the time to get into theological debates. What you *can* do is pray for them by word AND deed (helping out as described above).

Please offer suggestions from peer-reviewed medical journals, if I hear one more time how “lemon water will cure cancer” or “sugar causes cancer” I think I shall scream! TRUST ME, your friend has come across these controversial theories already in chat rooms. If they think it will help, they will pursue holistic avenues. If they pursue traditional avenues found in conventional medicine, don’t tell them how “chemo kills” or share horror stories from your “best friend’s sister’s boyfriend’s brother’s girlfriend heard from this guy who knows this kid who’s going with a girl who saw a cancer patient pass out at 31 Flavors last night.” Haha!

It’s well-meaning and human nature to want to tell someone what to do, but it only adds confusion. If they ask for your opinion, offer it, but please temper it if you don’t have “M.D.” in your title. Let them make up their own mind and don’t be offended if they don’t follow your advice or practices.

4) Is there anything you could say that would encourage people if they are sick? How is your faith helping you through this experience?
My illness woke me up from the “going through the motions” place I had found myself in. When the newness wears off after discovering the Faith, and the day-to-day dreariness sets on, I found myself relegating our treasure to another box to check, which is of course wrong. Don’t let something like cancer be the impetus to opening your eyes to the richness and beauty of Orthodoxy, appreciate it now, you never know when you may be in a position where you *can’t* go to church because you can’t leave your bed. God is always there for us, even if we take Him for granted. It’s never too late to return to active participant instead of passive observer, as long as you’re breathing!

As far as how the Faith has helped me, I couldn’t imagine going through this trial with no faith in God. There were two particular items that struck me to my core, a little booklet I got when I stayed at St. Paisius Monastery just before chemo started, called “This Was From Me”. And a quote I read from my calendar that has St. John Kronstadt:

“Do not be despondent in the time of violent temptations, afflictions or sickness, or obstacles arising from the disturbance of the enemy; this is the reproof and chastisement of the righteous Lord, Who tries the hearts and reins for your cleansing and correction, for the burning of the thorns of carnal passions. Therefore do not complain if you sometimes suffer greatly. Do not think of the suffering but of the blessed consequences of his chastisement and the health of the soul.”

Thank you for sharing your thoughts with us, Marjorie! May God continue to bless you and heal you from cancer.

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