6 Things to Say (or Not) to a Friend With Cancer

6 Things to Say (or Not) to a Friend in Need

Kate Bowler was just 35 when she was diagnosed with stage 4 colon cancer. Here, she shares the words that actually make a difference to someone having a rough time, from her book Everything Happens for a Reason.

1. "I'd love to bring you a meal this week. Can I email you about it?"

Oh, thank goodness. I am starving, but mostly I can never figure out something to tell people that I need, even if I need it. But really, bring me anything. Chocolate. A potted plant. A set of weird erasers. I remember the first gift I got that wasn't about cancer, and I was so happy I cried. Send me funny emails filled with YouTube clips to watch during chemotherapy. Do something that suits your talents. But most important, bring me presents!

2. "You are a beautiful person."
Unless you are used to speaking in a creepy windowless-van kind of voice, comments like these go a long way. Tell your friend something about his or her life that you admire without making it feel like a eulogy.

3. "I am so grateful to hear about how you're doing. Just know that I'm on your team."
You mean I don't have to give you an update? You asked someone else for all the gory details? Whew. Great! Now, I get to feel like you are both informed and concerned. So, don't gild the lily. What you have said is amazing, so don't screw it up now by being a nosy Nellie. Ask a question about any other aspect of my life.

4. "Can I give you a hug?"
Some of my best moments with people have come with a hug or a hand on the arm. People who are suffering often—not always—feel isolated and want to be touched. Hospitals and big institutions in general tend to treat people like cyborgs or throwaways. So, ask whether your friend feels up for a hug and give her some sugar.

5. "Oh, my friend, that sounds so hard."
Perhaps the weirdest thing about having something awful happen is the fact that no one wants to hear about it. People tend to want to hear the summary, but they don't usually want to hear it from you. And that it was awful. So, simmer down and let your friend talk for a bit. Be willing to stare down the ugliness and sadness. Life is absurdly hard, and pretending it isn't is exhausting.

6. *****Silence*****
The truth is that no one knows what to say. It's awkward. Pain is awkward. Tragedy is awkward. People's weird, suffering bodies are awkward. But take the advice of one man who wrote to me with his policy: Show up and shut up.

Thanks no thanks Oxaliplatin

I LOVE fall and winter. I love the cold. I love bundling up and needing layers. But this year cold weather is not my favorite because of one of my chemotherapy drugs, Oxaliplatin.

Oxaliplatin has a particularly unusual side effect.... neurotoxicity exacerbated by cold temperatures. 

It hits during the infusion. One minute I can take a drink of cold water, the next minute if I try it’s like swallowing glass. It is so incredibly painful.  In fact for me, even room temp liquids are too cold the first few days which is why I’m getting extra hydration before chemotherapy now. 

It usually lessens or goes away completely between treatments, but as the number of cycles increases, the numbness and tingling ordinarily takes longer to dissipate. That’s  where I’m at now. I am 10 days out from infusion and it’s bad. The oral sensitivity goes away in about 5-7 days. BUT for the hands and the feet.... it’s not going away. 

And it doesn't stop with the hands and feet. It can set off spasms causing my throat to feel likes it’s closing, like I can’t breathe or my tongue going numb. Thankfully so far I’ve only had the latter happen. It also hurts to cry. My tears are cold and it causes my eyes to burn really bad. Not good for someone who is a happy and sad crier. 

Because it’s triggered by the cold, touching anything out of the refrigerator, freezer, or washing my hands with cold water will set off the numbness and tingling pretty much as soon as I touch it. It is hard to describe, it’s not like “oh that’s cold”. It’s painful. It’s like, oh that feels like someone held dry ice to my skin and now I can’t feel my fingers and they hurt and I want to cry. 

Up until yesterday it was really only when touching cold things that it bothered me, but now just the cold air makes them hurt. The realization that my one place I can be social is outside and that place is now very cold made me cry.

Thankfully warming up the hands and feet helps the sensation to go away. So running my hands under hot water helps after cracking eggs to make cookies. I’m always in slipper socks around the house now, to keep my feet warm. I have two electric hand warmers and several kinds of gloves. I purchased some heated gloves in hopes they will help me be able to stay outside to visit around the fire with friends and family. Lots of layers around my neck and face will help my face from going numb and warm socks and boots for my feet. 

The good news is, after I’m done with chemotherapy this goes away. This is not a side effect that sticks around. I am really happy about that because I really love ice cream and I miss just drinking ice cold water throughout the day. Also- this drug is killing cancer so while this side effect stinks, I will gladly endure. 

The Gift of Vulnerability

Sometimes I wonder if I’m sharing too much. But I look back over my years of writing and ever since I miscarried in 2009 I’ve been transparent. I’ve shared everything from losing a baby, to life in ministry, twin pregnancy, breastfeeding, parenting, foster care and now cancer. It helps me process yes- but I have found that being vulnerable with my story has made space for others to own their story as well. I’ve had countless messages of people expressing their thanks for my willingness to share personal things because it made them feel less alone, or more encouraged or like they could get through what they are facing. 

Sometimes I panic after a post and delete it. Sometimes I don’t get the same engagement and I think- maybe I overdid it? Sometimes I know the stories that others are facing but remain quiet and wonder if I should too. But what I’m learning is the more vulnerable and authentic I allow myself to be, the more work God seems to be doing on my heart. Laying open my soul in one area has had a domino effect and, while tender, that open soul feels nearer to Christ. 

Today I got a message from someone who thanked me for sharing so openly. My story encouraged her to get some things checked out and because she did - she won’t be battling a hidden colon cancer. That’s worth all the vulnerability, authenticity and late night blog posts. 

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

Brene Brown 

The Flow of a Chemo Round

After 5 rounds down I pretty much have the flow down, although there are always some surprises that can pop up it’s helpful to know what’s coming for the most part.

Tuesday: Chemo Day- exhaustion beyond belief

Wednesday & Thursday- tired but decent (pump removal Thursday)

Friday- Pretty  good

Saturday- Some Saturdays have been eh, a few have been super rough...like this round.

Sunday & Monday- The worst days

Tuesday- Can start to feel my body crawling back

Wednesday- Nearly there...

Thursday- A switch flips! I feel human again! 

Then I have Thursday- Tuesday before I start it  all again.

Side Effects?

Nausea 

Bloody nose

Plugged ears

Loss of taste for a few days before of steroid

Inability to sleep

Stuffy nose from steroid

GI issues (enough said)

Cold sensitivity which makes it nearly impossible to stay hydrated until I can drink room temp drinks 

Can’t touch things from fridge or freezer or wash hands with cold water

Dry skin

Thinning hair

Exhaustion 

Lack of energy 

Dry Mouth

Headaches

Scar tissue pain

Port pain

That’s all I can think of for the moment.....

Oh yeah- chemo brain!!! ;) 

And now for some cute pictures:

A Quick Thank You

My Mom suggested I count all the people who have shown up for our family during this time after a rough evening last night.

I lost count with just the people I know personally, this doesn’t even include the friends of friends and friends of my family that I don’t even know. Those listening to a friends radio station in the UK who have reached out on my blog, the people who I haven’t heard from in so long but have shown up and *stayed* past the lookey-loo phase.

I am so so thankful for you all. It makes the sting of those who have disappeared in this time less painful. 

Thank you. Thank you for your support and love- The Bowen Family is forever grateful ❤️

Hair is hair is hair is hair

I’m not losing my hair. I was told I most likely wouldn’t, perhaps it would get thin and I’d lose some but not enough to shave it. My short rockin’ haircut works perfect for it as I can get a lot more body in it to cover up anything if I end up needing to.

BUT one thing I didn’t think about was how I’d look in a hat. I love beanies especially during fall and winter. With the crazy side effect from the Oxiliplatin- I am going to need to bundle up even more. Unfortunately I look bald when I wear a beanie.

Here me out. A lot if people with short hair wear beanies - they look great! A lot of cancer patients rock bald heads and headscarves and hats and beanies- they look great! 

But I don’t like it. I can pass for someone not going through chemo on most days (unless I’m wearing my pump)  I don’t “look sick” even though I very much am and if you saw me at home you’d know it. But the moment I put on a beanie I feel like I look like I’m sick. I see in the mirror a cancer patient and I don’t like it. That’s just me and it doesn’t mean anyone else is wrong or that I’m wrong- it is just my truth and reality.

So I spent a whopping $25 on Amazon on a wig attached to a beanie and decided to have some fun with it because- why the heck not?! And guess what.... I LOVE it! It’s fun, it looks real, it feels amazing and I got to go back to the days where I was blonde and it’s super long and wavy.  So I got another one that is more auburn and I cut it to my shoulders. 

This is Autumn

(Also my shirt says Straight Outta Chemo which I put on every day I come home from infusion) 

This is Goldilocks 

Yeah I named my girls just like Moira from Schitt’s Creek.

When you’re fighting cancer- you look for all the ways to bring yourself some joy and self care. 

Another one is one it’s way to me- this time, no beanie. I’m already thinking of names.....

The reality of this Covid/Cancer Combo for me

ICUs in Jackson and Josephine County are currently at 86% capacity.  If ICUs exceed capacity, death rates will go up in a hurry (not COVID deaths, deaths in general. People needing care and not being able to get it in a timely fashion) 

If I get a temp of 100.4 or above I have to go straight to the ER. If the ER is full, if I get to the point I need to be in ICU but it’s full..... tell me how that plays out?

Stay home. Don’t gather with friends during this freeze. Use grocery delivery. Don’t gather with extended family that hasn’t been in your immediate bubble on Thanksgiving. Work from home if you can and if you can’t, wear your mask correctly AND social distance. I’m doing

 my part... can you do yours? Maybe you don’t agree with what our Governor is doing and I truly feel for small businesses. It’s just... 

Maybe putting a face to the reality will help you take this seriously.....I’d like to always come home to this 👇🏼 My husband and three young kids. 

#cancerpatient #immunocompromised

Chemo Birthday

My 37th Birthday was spent in a chemo chair. It’s not exactly where one wants to be on their birthday. It’s also gotten really bad in our area with COVID cases so it’s not like I missed out on a party or fun dinner out. It is what it is. 

I was determined to make it a fun day regardless. I woke up to singing boys and breakfast in bed with ice cold eggnog that I knew I couldn’t drink later (thanks Oxiliplatin). My Mom came to take me to chemo and we stopped for a free birthday drink at Dutch Bros because #tradition! 

I wore an awesome shirt my Mom made that said “Birthday shirt $20, Birthday Chemo- Priceless” and took my floor cupcakes to share!

I spent way longer in the chair than I should have. I arrived at 9:50 and didn’t get home until 6pm. Lots of mix ups and miscommunication and system issues etc etc led to the longest day of my life. 

But I came home to gifts and my Mom brought my requested birthday dinner (taco salads and funfetti cake!) And I had loads of messages and texts to sift through as well as goodies at my doorstep! 

I truly felt so blessed and thankful. I could choose to wallow, but I could also choose to think “My birthday was a day where cancer killing drugs are helping me live, where kind nurses wished me happy birthday and where God was with me despite the circumstances.

Am I always joyful? Nope. Do I get angry and sad? Yep. I will always share those moments because it matters to me to be genuine, but I will also share these moments of joy hidden in the dark because sometimes you have to look hard but it can be found... hope is always right there.

Reflections 

Handmade bookmarks from Jack

Thanks Mom! 

Jack made me this 

Camden made me this 

Christian made me this  

If the sock fits! 

Flowers from my sweetie with a quote from my favorite show 

My caregiver and warrior husband and Dad 

Jack made me two special birthday comics and they are AMAZING! 

Wishing to Go Back In Time

Wishing I could go back to this Harry Potter birthday party....

Before my back surgery

Before missing Thanksgiving 

Before Trevor got influenza on Christmas Day and we were in the ER

Before COVID hit and everything shut down

Before several friends moved away

Before school ended and never really started again

Before we spent Easter alone 

Before my colonoscopy 

Before our girl’s bio Dad relapsed

Before my traumatic surgery and extended hospital stay

Before I found out I had cancer

Before 5 weeks of radiation and oral chemo

Before my Grandma fell and got hurt and landed in the hospital multiple times 

Before fires ravaged our community and we had to evacuate twice 

Before port surgery

Before the start of 6 months of chemo infusion 

Before our girl went back into foster care

Before losing friends because I believe Black Lives Matter 

Wishing I could just click my heels and go back in time 

4 Down. 8 to go.

33% done. 

I thought I’d give a rundown on what one round of chemo looks like. It’s long :) 

The day before chemo I get my labs drawn  to make sure all of my counts are looking good. So far so good for me, but it’s expected to see drops and with some of them there is nothing you can really do about it other than bring down the amount of chemo you get or postpone a round (Platelets). And with some there are things you can do (RBC’s and WBC’s) like getting blood, plasma etc. Yeah- giving blood matters so keep donating if you can!

If the numbers are good then chemo day is a go!

My Mom picks me up and takes me and drops me off at the infusion center at RRMC. Unfortunately the new cancer center isn’t finished being built and the Hematology Oncology Clinic doesn’t do chemo infusion anymore. What that means is it feels like they used random available space on two different floors and shoved things in spaces and corners to make do.... and it’s not awesome. 
I enter on the ground floor, ride to the first floor to get checked in (temp check and hospital bracelet) and then wait until they tell me to head up to the 3rd floor down a weird hallway and around the cardio unit and into a corner room. 
Here I get my BP, oxygen, pulse, temp and weight checked. Then I’m taken to a big blue chair (sometimes with a view and sometimes not) and given a pillow and a warm blanket.
Next I wait to get hooked up. I meet my nurse for the day (never the same one) and she puts on a bazillion layers of protection and removes the plastic covered port where I put numbing cream on 90 min prior. She then stabs a needle into my chest through my port and connects me to my IV. First I get a whole bag of hydration. This was added after my first round because staying hydrated when you can’t drink room temp or cold drinks for several days is hard. This takes anywhere from 60-90 min. 
Then they give me an anti-nausea IV med followed by IV Benadryl which is nothing like the   Benadryl you would take at home. This stuff is strong. Immediately your eyes get heavy. Next they start two chemo drugs simultaneously. After those are done (2 hours) I get another chemo drug followed by the last one as a bolous of the drug I get sent home with. After that one is done they hook up my pump which is like a clear round ball that is attached to tubing where it’s taped onto my stomach where it senses my body heat and will release the drug based off of that. The tubing runs up my stomach and chest and is inserted into my port. That’s then taped in several places, and my port is covered in plastic and taped up. I’m there from 4-6 hours depending on what else is happening with other patients.

What do I do while I’m there? Well work and reading is hard because how tired your eyes are from the drugs. Most people sleep and snack.  I sleep, snack and play around on my phone. I’ve done some coloring and audio books. They have snacks and drinks but also a fridge to bring your own food. Also I go to the bathroom a lot. There’s a lot of liquids going into my body!

I can’t shower or get wet while I have the pump in. It really doesn’t bother me, I wear it in a “cute” fanny pack on my side so sleeping isn’t difficult. It’s just part of me for 46 hours. So chemo day lasts 3 days but only one of those days do I have to sit in a chair at the hospital thanks to the pump which I’ve named after the supervillain Poison Ivy from Batman. 

Chemo day is exhausting. My Mom picks me up and drives me home. We usually stop at Outsider Coffee for a warm drink to celebrate being done. She’s a great designated driver! I come home with a Benadryl hangover and just totally thrashed from all the drugs pumped into me. But because of the steroids I’m given, sleep is hard to come by so I come home and rest in bed but rarely fall asleep. Sleep at night is hard. 
The next two days (Wednesday and Thursday) are decent and I get the pump removed on Thursday, the time depends on when I got it connected. Trevor and the boys take me back to RRMC where I go through the same exact routine as I do on Tuesday only they remove the pump this time! When they take all that tape off... ahhhh. That’s the best feeling. This only takes like 20 min. During that time Trev takes the boys for a special drink (it’s hard specifically on two of them to take me to the hospital- my extended stay there in May was traumatizing for them too) and then they come back and get me and take me for a special drink! We try to celebrate everything we can! 
Side Effects:Cold Aversion: During the third bag of drugs I get one that causes a weird reaction with cold. It hits pretty much immediately which means no more drinking anything but warm liquids and warm water for my hands and no more touching cold things (think anything from fridge or freezer). It’s super weird and sometimes I forget with the touch part, which feels like an electric shock that lasts until you warm your hands back up. But drinking I don’t forget - because it feels like swallowing glass shards and is super painful. This lasts for several days, usually I’m able to eat/drink sooner than I am able to touch cold things. As the temps drop outside I could experience other things as well so will just keep an eye on that!
Neuropathy: This is something they fully expect me to deal with in both my hands and feet. So far I’ve only had some numbness in the tips of my fingers for a short amount of time in the first day or two after infusion. Really praying this side effect stays away because there’s the potential of it to get bad and last a long time (in some cases it doesn’t go away)
Nausea/GI Issues: They have come a LONG way with medication to help this not be so intense. I take a special anti-nausea steroid for the three days following infusion. Saturday/Sunday is usually when these symptoms hit and I start with the med that doesn’t cause sleepiness but often have to step up to the next level or two levels which both make me extremely tired and I sleep all day. But it works on the nausea and other GI issues. This stuff on top of just plain tiredness last until about Tuesday/Wednesday. Thursday there is usually a night and day difference and I get my energy back and end up having a great break until I go back on Tuesday for another round. 
Shaky Hands: This is pretty pronounced on some days and not so much on others. Often it’s obvious when I’m holding an eating utensil or trying to take a picture :( I have a lot of blurry photos these days which is hard for a photographer:/ 
I do feel fortunate to be escaping some of the other major side effects so far. The longer you’re in treatment the harder it gets and the more your body struggles so I don’t anticipate I skate through this without setbacks but I am hopeful it won’t be the full gamet. 
Because I’m not losing my hair and I wear makeup ;) I don’t look “sick”. It’s a weird feeling to be feeling sick, fighting cancer and going through chemo without that being obvious. It’s just a weird place. Hard to explain. My husband, kids and parents see it because they see me at home in my worst shape. I have been advised to avoid meetings in small rooms even with masks. I’ve been advised to not be in a space where food/drink is being served, because masks are off. I avoid most stores, but have had the chance to go into a few places just to browse and get out of my house. We do Instacart for most of our groceries and if we need something else Trevor or my parents help. We don’t have anyone in our home other than us and my parents who have sacrificed and given up a lot to make me and our family their priority so they can be around us and the kids. We have three sets of kids we’ve allowed the boys to be around masked and Jack goes to Preteen Group at church masked- he needs this for his mental health. Trev works from home a lot but when he’s at work he’s masked and distanced and when he comes home he immediately showers and changes his clothes. I’m working from home except for a small meeting in a large room and leading Preteen Group on my good Sunday’s. We are just trying to do the best we can with this Covid/Cancer scenario. 
Most of the time I’m doing well emotionally these days. I have breakdowns. My kids have breakdowns. My husband has breakdowns. We are doing our best and without the most incredible support system that surrounds us - I don’t know how we’d do this. Between our church family, our co-workers, our friends and our family and people we don’t even know we are being prayed for, fed and supported financially in helping with expenses not covered by insurance. 
It’s humbling to say the least. In the middle of a global health crisis, tension within our country and so many other difficult things for so many, we have this beautiful supportive community that we will forever be grateful for. 
So there’s a really long post about what life looks like right now. Ask me any questions! I’d be happy to answer them. 

My designated driver brought me a friend!!!
Straight Outta Chemo and home to snuggle the softest thing ever “The Child”

Ways we make chemo week better around here:

Looking for Hope after A Year of Terrible, Horrible, No Good Very Bad Things.....

November. The best month of the year. Nobody can argue this really, it's just fact. It is not just because it's my Birthday Month (November 17th in case you were desperate to know) but because the colors in Southern Oregon are gorgeous, the mornings and evenings crisp and the days of much needed rain (hopefully) come. It's also the month of Thanksgiving and where we focus maybe a bit more intentionally on gratitude, on hope, and being thankful for what we have. 

It may be a bit tougher to search for those things this year than in years past. I know for me that November of 2019 marked the start of the beginning of a terrible, horrible, no good very bad season that continues on even now. I had back surgery the week of Thanksgiving.

Back surgery was needed, but recovery was harder than I expected and it was a major bummer to miss out on Thanksgiving with our family. Fast forward to Christmas Day when we had to take Trevor to the ER because he was so sick (thank you so much for ruining that day influenza). He never even got to see my sister and her future husband while she was here. Christmas was not the same.

January 2021 we were in the full swing of pastoral transition at church which was good, just a lot. In February I left my job at Abe Lincoln where I had worked for 4 years in Kindergarten to accept the role of Elementary Families Pastor at our church. This was a huge shift for our family and for me. A prayed about, longed for change but a change none the less. About a month later, our amazing Kids Pastor accepted a position in Illinois at a church which is much closer to their family. While super excited for him and his family, I was freaking out on the inside. I was just hired! What am I doing!? And then the next week....we closed our church building doors as we entered into COVID season and life as we knew it would change,  including our kids basically being done with school for the rest of the year. 

April brought quarantine and social distancing, the official goodbye to our friends moving to Illinois and celebrating Easter by ourselves. No church, no extended family....what a weird Easter. Later this month  I had a colonoscopy after concerning symptoms I had had intermittently became constant. This revealed polyps, one which looked suspicious and one that was too large to be removed during the procedure so surgery was imminent. Add to that, our former foster daughter's bio Dad flipped out on us and we could tell he had most likely relapsed and our future relationship with her became unclear. 

In May we said goodbye to several friends in ministry, some moved far away, some just deciding to go a different route. Either way it was hard. And then I had surgery. It was supposed to be a quick laparoscopic surgery and the colonoscopy biopsy said things were not cancer so we weren't super concerned. Unfortunately I had to be completely cut open and spent an unexpected week in the hospital which turned out to be an incredibly traumatic experience. In June, a week after I got home we found out I had cancer. Both polyps were cancerous and out of the 28 lymph nodes, one was positive so that meant chemo. The larger polyp's location was such that radiation would be required. I was started on anti-anxiety meds and began counseling due to my hospital experience and my diagnosis. My Grandma also had a bad fall while I was in the hospital and she herself was admitted. It could have been much worse had her friend not found her when she did. 

July was when I started 5 weeks of radiation. Monday through Friday while taking oral chemo on those days. My Grandma moved from her home into a retirement home and we said goodbye to her house that holds so much of my childhood memories. It was a hard goodbye. August only brought the death of Jack's favorite fish so I guess that was a reprieve? 

In September fires tore through our community, absolutely devastating our valley. We had to evacuate our home twice which was super traumatic for our kids and we are still working through it. I had surgery to place my port for IV chemo, began chemotherapy started a college class AND the boys started school fully online as well. 

In October my Grandma was in the hospital again, more ministry goodbyes happened and worst of all our sweet girl was placed back into foster care and we could not take her in. Oh yeah, and COVID is still wreaking havoc on our mental and emotional health as it is for everyone. 

To say the past year has been hard would be an understatement. I don't give a play by play for sympathy, but because this is my space I write it down so that someday....SOMEDAY, I can look back and see where God was at work, I can look back and thank Him for sustaining us and being faithful in the hardest times of our lives. 

I don't know what November 2020 holds other than more chemo (including on my birthday), but there are some things I do know.....

I know that my amazing husband will continue to support and provide for our family, picking up the slack in all the things I am not doing while working full time in ministry. I know that my boys will continue to bring me joy and shower me with love and care. I know that my parents will continue being available 24/7 for anything we need. I know my friends will continue to check on me, and encourage me and bring us meals. I know that our church family will continue to pray for us, love us, bless us and care for us. I know that our extended family will continue to do the same. I know that whatever comes our way, we won't be alone and I can give thanks for that. I know that I will continue to look for hope even when it seems impossible.