An anniversary that’s really only important to me has come and gone and so has more than a year since my last blog post, called “Candle #3”. In that post, I spoke of the significance of June 1st in my life. Now, another June 1st has passed and Candle #4 was lit. Amen. These candles mark the anniversary of the double mastectomy that began the journey to eradicate cancer from my body. Multiple surgeries, chemotherapy, daily medications, monthly injections, blood draws, infusions, regular scans and all kinds of therapies and complications (oh hello jugular vein DVT clot – thanks for the surprise visit) are all plot points on this cancer trek to somewhere I still don’t know the name of. “Survivorship-port”? “Thriver-ville”?
Lighting a candle is my way to note something definitive on the map: another year. Another year is quantifiable like the miles between two map dots or the elevation of a steep climb. Taking a moment to look back helps me feel a sense of accomplishment for all those many steps. Anyone who has gone through cancer knows the days that mark the silent yet personally significant “cancerversaries”, but in truth, I think most everyone have silent anniversaries. There is a space between these silent anniversaries that can be so lonely, silent and maybe even dark and arriving to the next anniversary can feel daunting.
As I light my candles each year, I think I’m also trying to shine the light for anyone else who may feel lost as they travel between those spaces of silent anniversaries and may want to give up before the next day slowly unfolds. If that is you, please keep going. It matters. Tomorrow you might go a bit further and before you know it, you will have something to celebrate. Celebrate whatever makes sense for you and mark those milestones. My wish is that you light every candle you get the chance to…eat the cake and dance when you hear your favorite song and if you want to share the picture or write about your experience, this space is for you.
Mugging up is a way to connect, share our stories, and celebrate each other, wherever we are on our journey. In the next year, is there a milestone or anniversary you want to acknowledge, remember or even celebrate? If you want to be a guest blogger and share about a personally significant anniversary, please reach out and we will make plans to get your story on this blog and share in the glow of your candles.
Until next time,
~Mug Up Mermaid
PS – My mom already bought me Candle #5. I look forward to lighting that candle and maybe even tossing some glitter up into the sky. Who knows, maybe you will join me?
Friday was day number 952. Two years, seven months and seven days with my chemo port. For those who don’t know, we broke up. She served her purpose and made chemo and blood work so much easier all those months since my double mastectomy and then a variety of complications. However, she outstayed her welcome and created a painful dvt blood clot in my jugular vein. After a few weeks of IV hydration sessions (I couldn’t swallow when pain was at its worst) and twice a day injections (IN MY STOMACH – ouch), the vascular surgeon said it was time for her to go. It surely felt like time. Actually, I was ready for us to break up a while ago, but then COVID put her squarely in my quarantine bubble and she remained in my “pod”. No social distancing for us. When the vascular surgeon said we had to get her out, I was flooded with gratitude to have something that felt like a tangible and positive rite of passage in this cancer journey. I didn’t need her anymore.
I’ve always been what nurses and phlebotomists call a “hard stick” so the convenience of how all those bags of chemotherapy, blood transfusions, IV hydration, medications and dyes for various scans got into my blood made the port worth it. Early on I thought of it like a blood sucker and the lump of it under my skin, just below my collarbone, looked like I had a permanent hickey on my chest and the wire that went up my neck always bulged out like I was on steroids. I was sensitive about how it looked, especially if I forgot and wore a low cut shirt.
As time went by, I forgot about it unless it was time to be accessed during my monthly labs at the cancer center or if I was face down on a massage or osteopathic table and could feel it being pushed in by my body weight. It became just part of the trail of other scars on my body and I became less self-conscious about it. As everything tied to cancer became less scary, so did my port. I began to appreciate how helpful the port was and like my other scars, I learned to see it as a battle wound that showed I was a warrior. It may sound weird, but I’d often lay my hand on top of it and pray. I was grateful for the chemo it brought into my body to keep me alive. And, I was grateful for the blood that was pulled out to assess where I was in my healing. I even gave her a name – Violet.
Why did I call her Violet? The color violet made me think of life and passion and rebirth and the future – all spiritual qualities that are the foundation of my faith. Violet is spiritually calming and also feels a bit sparkly and magical to me. Instead of feeling attacked by poisons meant to kill the cancer that came into my port, I started to think about the blood that came OUT of the port for all the tests. Life flowing in and flowing out, in constant motion like the ocean and the tides that wash our shores every day. If you have ever seen that thin violet line between the ocean and the sky right at sunrise or sunset, you know what I mean. It connects the sky and the water and when the sun shines just right, the reflections are magical. There is beauty and promise in each sunrise and in each sunset. So, Violet represented life and passion and spirituality and beauty and maybe a bit of magic – all running through my healing body and then flowing out through my prayers and actions. Violet was the conduit for all that, until she wasn’t.
When COVID restrictions required me to work from home and my days became filled with seemingly non-stop Zoom meetings, suddenly, I couldn’t help but stare at Violet as I saw myself in that little “Brady Bunch Zoom square”. Seeing yourself on a computer screen all day gives plenty of time for self-criticism and hyper awareness of every blemish and bump and if I didn’t wear the right kind of top, I’d often be self conscious and tug at my shirt or sweater and try to hide Violet. I doubt anyone else really saw her, but to me, it was like a neon sign… HEY EVERYONE – SHE’S STILL A CANCER PATIENT!
Truth is, I am a cancer patient with all kinds of complicated other medical challenges. On my best days, I roll up my sleeves, get dirt under my fingernails and work hard as I cultivate the seeds of my faith. Other days, there can be a lot of stones to move and honestly, I’d like to throw them far away.
When the surgeon told me at the beginning of last week that the port would be coming out, he very carefully explained the procedure and we agreed to do it as soon as possible which meant not going to the hospital and having anesthesia. I’d be awake for the procedure and I asked if I could see the port after he removed it. He didn’t blink and think I was weird. In fact, he told me that it would be interesting to find out what color it was and that sometimes they are… purple. Violet.
So, on day #952, Violet was removed by the surgeon. He knew I was hoping it was purple, and I wish this story had a nice neat bow for the ending where OF COURSE, the port was purple. But, it was milky white. Almost ghost-like.
It is now a few days later and I still haven’t found a good way to end this blog post. However, I do have a funny story to share and let’s face it, there haven’t been enough funny stories lately, and in this story, I think I found the best way to end 952 days of travel with Violet.
When the surgeon walked in the room late last Friday afternoon, I immediately smiled. It wasn’t his kind eyes that made me smile (and he did have very kind eyes – isn’t that something we all appreciate even more now with everyone wearing masks?) or the fact that the physician assistant had put on music (I remember making a joke about the song selection but I’ve already forgotten what songs were played)… it was the fact that he was wearing a Scooby-Doo Mystery Machine surgical scrub cap. Mystery Machine for the win! Maybe that’s why Violet turned out to be milky white – after all, Shaggy, Velma, Fred, Daphne and Scooby-Doo looked for ghosts, right? And, while it didn’t happen, I’ve been imagining that as the surgeon showed me the color of my port the physician assistant said (in her best Velma voice) “jinkies”! And then, in this make-believe magic world, the surgeon certainly would have replied (in his best Fred voice), “Well gang, I guess that wraps up the mystery”!
Zoinks! I think all this means that I’m meant to buy a Mystery Machine as our time of social distancing from COVID ends. I want to plan a road rip and I’d love to have friends join me in search of mysteries and a bit of fun. If I find purple (Violet) Scooby snacks, who wants to plan a crazy and fun summer adventure? Surely there are mysteries out there we can help solve and have a ton of shenanigans living out our 12 year old dreams?
So, I’m off to find those purple colored Scooby snacks and maybe I’ll get team t-shirts ready and as our time of social distancing with COVID ends, maybe our Mystery Machine adventures will will be a blessed chunck of time where we can relax together knowing the scariest part of our days will be whether the coin collector or the headless specter or the thawed cavemen will be the ones to jump out and mess our day’s plans and not an unseen virus. There is a lot of adventurin’ in my plans for the post-Covid days ahead. Who wants to ride along? I’ll even let you drive, if you have kind eyes.