Today is an important one to point out- it’s been 5 years since I was diagnosed with breast cancer. In the oncology world, they consider this “cured”!!! (The feelings from today are a lot to process and explain, so I’ll focus on sharing the activities of the day instead.) I took the day off work and spent the morning with a good cup of coffee from a friend and some quiet time doing some writing. Then, I excitedly redeemed the massage gift card that Rob gave me for Christmas. It ended up being an unexpectedly funny experience that I’ll remember for a long time. My plan is to tell my grandchildren about when I’m 75 years old and laughing about funny things that happened along my recovery. I also had a nice lunch with Rob and then an afternoon full of our “ordinary”- taking the girls to and from cheer and dance, stopping at the store, squeezing in dinner. Turns out that this ordinary is pretty sweet when you feel like you have a renewed perspective on life. To mark today’s occasion, I want to share a Green Day song from their Hella Mega tour last summer- “Pollyanna”. Rob and I saw them in August in Pittsburgh and it is so far my most favorite concert ever! (Sorry, Dawson High)“ I think it’s time to pull up the shades. It’s wonderful to be alive……And everything is gonna be alright.”
There aren’t enough “thank yous” in the universe for this woman. She’s my oncologist- Dr. Rehmus- the person who saved my life. This post is to acknowledge and celebrate her!
I don’t think I’ll ever forget the day in 2017 when I met her. I had just learned of my diagnosis around lunch time and had an afternoon appointment with my surgeon (someday I’ll see if he’ll let me take a selfie with him, too!) It was the end of day on a Friday and I’m sure she would have been on her way out the door if not for me. Thankfully she said she would take my appointment at the last minute.
As Rob, Trisha and I walked into the room with the round conversation table, I couldn’t stop thinking about how nauseous I was and unsure if eating something would make it better or worse. Dr. Rehmus walked in with her medical student and introduced herself. I vividly remember that the first thing she did was sit next to me and turn her chair so that we were knee-to-knee. I don’t know the exact words she said but the sentiments were acknowledging that this was a hard afternoon and an immediate concern for taking care of myself- starting with getting me crackers and ending with a prescription for Ativan and instructions to pick up a bottle of wine on the way home (don’t judge if you haven’t been in that position before. )
She saw me that day with all of the fear in my eyes that I couldn’t hide. She knew how much to explain and when to stop because it was mental overload. She had been here thousands of times with other patients, yet still managed to make me feel like I was her only (and most important) one. She did this throughout my entire care with the perfect combination of intelligence, reason, compassion, encouragement, and humor that is necessary for this kind of work.
I have always had confidence in her as she provided reassurance in her responses to my gazillion questions. She is the epitome of amazing medical care. Although I obviously wish I didn’t need an oncologist, I’m thankful she’s the one!
Now, after years and years of treating thousands and thousands of patients, she gets to retire! I’m so excited for her. Yes, she diagnosed me with “oncologist withdrawal syndrome” (her made-up term for what I’m going through), but I don’t know how to feel knowing that I might never see her again!!
So I will celebrate her here and introduce her to all of you and pretend like she’s a part of this group. Because I wouldn’t be here to keep writing and sharing thoughts if not for her. Not sure how a woman like that stays so humble, but I want to be like that when I grow up.
Two bags of trash- seems like no big deal but it was SO emotional. (I wonder how it feels for other people who aren’t so sentimental about every little thing in life.).
These bags are the last round of my “cancer stuff” that I’ve held onto. The “essentials” from surgeries and treatment that I haven’t gotten rid of yet. In trying to explain to Rob, I realized that this seemed important enough to include on this page- and so I’ll share…
These two bags are filled with the medical things that helped me through cancer treatments- the expired numbing cream to go on my port each time they accessed it for treatment; the wraps to keep the bags of ice on my hands during chemo treatments to minimize neuropathy; the “drain apron” that was essential to hold the drains post-surgery; the bandages and binders to help hold my body together as it healed. These items were valuable to me along the way, and holding onto them has made me feel prepared for the “what if…”
I’ve always thought that part of the PTSD aspect of my experience was that it was so sudden and unexpected at my age. And I wonder how differently (if at all) it would have felt to go through it when women are “supposed to”- more like in my 50s or 60s. I wonder if it wouldn’t have been so traumatic if it was more expected and I was more prepared.
It makes me think of the wave that knocks you over in the ocean: when you’re facing it and watch it get closer to you, you are ready for the hit no matter how hard it comes. You bend your knees and you either dig your toes into the sand to stand firm; or you time a jump just right so that you can ride it out with a little grace. It doesn’t seem so bad when you are ready and face it head-on.
When you’re not expecting it- that’s when the wave knocks you over completely. That’s when you face plant and get a mouth full of saltwater. And you get all turned around and disoriented for a minute, not knowing what happened or where it came from.
I pray every day that I don’t get hit by another wave. I feel guilt because my mom didn’t recover from her wave. And the recent anniversary of the day Amy went to heaven reminds me that it can be even more unexpected than my own hit.
Subconsciously, but not too far down to retrieve the thoughts when I need them, I know I’ve hung onto this stuff just in case. Today, in a moment of freedom and excitement and worry and guilt and fear and peace… I let them go.
January 20th- it never comes without all of the emotions.
4 years ago today was my initial diagnosis.
1 more year until the big #5- when recurrence risk is low enough that I can use the word “cure”.
The details of that day have not faded; and the impact is a mess of thoughts and feelings.
It seems like a lifetime ago and just yesterday at the same time.
I’ve hated my body and been amazed by it.
I’ve felt closer to God and then not sure He’s even there.
I’ve mentally planned my funeral, and never been more alive.
I have been held up by others, and held others with even heavier burdens.
I have joked about cancer, and have been paralyzed by the seriousness of it.
I have embraced my scars, and hid behind clothes and in the dark.
I have felt thankful for being physically cured, and guilty because mom wasn’t.
Weak and strong.
Alien and human.
Depressed and joy-filled.
Frustrated and grateful.
Broken and healed.
Weary and hopeful.
The only constants: “change and time” … and HOPE.
Artist credit: Katie Belden
“All clear” scan results again today!! It was such a relief. The “scanxiety” feeling is SO real!
I know you fellow survivors can relate. It sneaks up on you as routine appointments get close. Then it sits really heavy in the pit of your stomach, and the back of your mind, and wherever other places tough feelings go to try and hide… until you hear good results- and that is when you exhale (and probably cry and dance, too.)
I wore my mom’s sweater on scan day last week. It still smells like her even though I washed it (thank you for that, God.) As I folded it to lay it in the locker, temporarily replaced by a sterile faded hospital gown, I paused for a moment. I thought about her, smelled the sweater again, and asked her to be with me and put in a good word to suggest having a clear test. She was with me and I felt it.
As hard as life is without her physically here, I can FEEL her all the time. I felt her presence with me before the scan. I felt her during the 30 minutes my face was squashed in a cushion with the loud clanging all around me. I feel her in my heart.
It’s a terrible thing to lose your mom, but there are sprinkles of beautiful that I’m starting to see.
October 11th was my dad’s birthday, my hedgehog’s birthday, and my half-birthday. That means I have just under 6 months until I’m 40. So… I’m excited to say that I’m squeezing in a special “Under 40” experience just in time!
Marquina Iliev-Piselli is the author of the book I shared in my last post. She is also the reason I have this cool opportunity coming up soon. During our first interview for the book, she mentioned a camp that she was a part of- Camp Koru. After talking with her last year, then applying and not being able to go, I’m happy to say that this year I am able to participate in a Surfing Camp for Cancer Survivors…. in Maui!
The camp is designed to bring together survivors who were diagnosed under 40- to teach them a new skill as they learn to accept their “new normal”. So in a few weeks I’ll be trying to surf in Hawaii with several other young survivors!
If it’s anything like snowboarding or water skiing, I’ll be horribly- stiff, awkward, and falling all the time. But I’ll give it a try and see how it goes. It took quite a bit to get to this point. The timing had to work out around my other surgeries. I had to acquire enough PTO again at work. I had to apply and wait for a spot, then get my medical clearance to go. Finally, it’s all working out and I’ll be heading to Hawaii in a few weeks.
I’m extremely excited, but also very nervous because I’m doing this alone. They don’t have camps for “survivor spouses”- though they totally should since that takes just as much courage, strength, and grit to live through. I don’t know who will be there, what they will be like, or how we’ll connect. I’m sure it’ll be great, but this is so far out of my comfort zone I can’t even see it in the distance.
What an opportunity, though, right? Maui, I’ll see you soon.
It’s October, so get out your pink. I’ve been so hesitant to embrace the pink in the past- I think because I feel guilty that other people don’t get a whole month of recognizing their challenges in life. And I was so determined to not let my experience define me. But the further away I get from the shock and fear of what I went through, the more I can see the value in acknowledging the importance of the challenges and celebrating my cancer-free life.
Today was “wear pink” day at work. I almost didn’t wear my shirt because it said “Survivor” on my back. So I wore my work backpack for a lot of the morning to conceal it. Then at lunchtime, we gathered for a picture for all the employees who wore pink to work. And there, one of my closest survivor friends, Melissa Samulak greeted me with the best hug I’ve had in a while.
There are a lot of really crummy things about 2017. But there are at least as many, if not more, wonderful things. One of them was meeting this woman who would fight her own battle shortly after me. I still cannot clearly explain what it feels like to go through cancer treatment while working at a very public place. But the comradery and closeness of walking alongside someone whose experience is similar is something very special. After catching up with her and seeing her beautiful smile, I was reminded that being a survivor isn’t something that should be covered up by a backpack.
Thanks to everyone who wore pink today at work. And to everyone wearing pink at their own workplaces this month.
I’ve been a little absent from posting for a while. Trying to be online a lot less and not over-thinking everything in life. But I do have some good things to share, and I think this month is a good time to restart the blogging. Stay tuned…
A half marathon is 13.1 miles. I’ve run it two times in the past, and both times I thought mile 10 was the worst. By mile 10, my knees were screaming at me to stop. Not because I have an injury, but more like “can we please stop doing this same repetitive motion that we’ve been doing for two hours?! Enough already.” (Kudos to everyone who can do a full marathon, by the way. Especially to Rob, who is in the middle of training for one and so far- killing it. )
In the past, I’ve thought about why 10 was the worst. It was painful and hard (as expected) but for some reason miles 11-13 didn’t seem so bad. I think for those miles, I was close enough to the end that the pain didn’t matter. I was almost done.
Well, in this experience, I’m heading into mile 12 of this race I didn’t sign up for. 10 would have been November’s surgery because I was nearing the end but it was so painful. I’m going into 12 with one more surgery on Friday, then it’s just healing up to cross that finish line and be done with all of this.
Friday is my exchange surgery. They’ll take out the expanders and replace them with implants. The expanders are hard with metal in the back that is stitched inside my skin. Uncomfortable all the time, but I’ve gotten used to it. But now, after Friday, they should actually look and feel more normal. No more strange metal parts in my body. (Whoa- I just realized that’ll be the first time since this started I’ll be metal-free! I had my port placed, a copper IUD, then the expanders. The first two have already been removed… and these will be the last to go! Well, I do have about 50 permanent staples under my right arm from the original mastectomy, but I won’t count those right now because I’m excited.)
Anyway… it’s time for “squishy boobs” and I’m so excited. It will be an outpatient procedure on Friday so I’ll be home that evening. The doctor said I’ll be bruised and feel like I got beat up. But should feel good enough in 2 weeks to return to work and totally healed by 4 weeks.
Mile 12, people… here we go… so close….
Lea is a sister in Christ. A mother, wife, and fellow breast cancer survivor. Though I knew her briefly many years ago, we reconnected in 2017 when she was diagnosed just after me. We’ve shared doctors and specialists, our radiation schedule was almost identical- so much that I would see her name on the list of patients in the radiology suite right after me. Most recently, we’ve seen each other with our families at Stewart’s Caring Place where we’ve gone for their family Halloween and Christmas parties.
Yesterday I heard that she is not doing well. Her cancer has metastasized and is in her bones. Her prognosis is about 5 months. 5 months, friends. I cannot imagine hearing that kind of news. My heart is broken.
Please pray for Lea. I heard that her spirits are up right now, but she is in pain and having trouble walking.
And, only after you’ve prayed for her and her family, I’m asking if you could pray for my heart to have peace with this. First Linsy Biege, then Jennifer Johnston, then Laura Ritter Allio… they are all young women who I’ve met since 2017 who are no longer here. I don’t want this to happen to another one. I can’t help but feel scared. This is the reality of living in the world of that terrible disease. I hate it.
I think this has been the longest I’ve gone without posting an update. Sorry, everyone. That also means there are probably a lot of random things to talk about, but I’ll keep it as brief as possible.
Physically I’m doing really well. At the end of January, my surgeon stopped adding saline to my expanders because my skin won’t stretch anymore. So the size I am now is about the size I’ll be forever- a solid B! I’ll take it!
As planned, I have to stay at this point for 6 months then have one LAST surgery to replace the expanders with implants. So that surgery will be on July 19th. That’s just about 3 months away. I can hardly believe that I’m just 3 months away from the last step of this!
I’m gradually getting used to this body now. My chest and back are uncomfortable all of the time, but usually not painful. The hormone blocker that I have to take for at least 8 more years still causes joint pain, so I feel sore and stiff a lot. I’m trying to stay as active as possible to help with that.
In the last few weeks:
– I had a follow-up ultrasound to monitor the reactive lymph node under my armpit to reassure me (again for the 4th time) that it’s not malignant.
– My radiation oncologist officially discharged me from her care.
– My general surgeon said, “although you’re the highlight of my day, I don’t need to see you anymore”! (Since I have some attachment issues, I asked if I could come back in a year just so I can hear another person tell me I’m healthy.)
– The lymphedema on my right arm/hand is not too bad. The reconstructive surgery broke up some of the scar tissue that was impeding the lymph flow. So now it’s not nearly as swollen. Three of my fingers are large and my arm gets tight and uncomfortable sometimes, but nothing that a night of wearing my compression sleeve/glove can’t help.
Personally, life continues to be a constant mix of laughs, joy, frustration, peace and two pre-teen girls. Rob is busy training for the Akron marathon in September. The girls are busy with school, dance, and friends. We’re getting out to enjoy the nice weather. Work is going well but busier than I’m used to.
I’ve had a couple of sweet days with extended family that I’ll always remember (Toya Groves and Pat Smith- thanks to both of you for two special days.) I’ve also been spending some unexpected time with friends from home- time that is always cherished.
All in all- life is good. Some days the sun is shining and we feel the warmth on our skin. Some days it’s harder to feel it, but we know it’s there because we see the light. One of the greatest blessings we have is the light from the son.