When I was first being diagnosed with cancer, writing a blog was my answer to how do I let everyone who cares and is asking know what’s happening, as it’s happening, without sending and responding to messages becoming my new full time job. Things were changing so rapidly then – trying to figure out a diagnosis and treatment – that it felt necessary to write and share often.
In between relapses, there was little to write about and as I settled into the monthly rhythm of my clinical trial, I had almost forgotten what it was like to need to update. Now, here I am back in a funny space of changing plans and tests and side effects, trying to figure out what treatment will look like and so much love and concern sent my way that I feel bubble wrapped in it as I bounce between phone calls and appointments and patient portal messages, trying to navigate an uncertain treatment road.
However, in the last week, the road has leveled somewhat, so I feel like it’s time to dust off my updating skills.
The tentative plan for treatment right from bad scan day was some combination of radiation and re-starting the chemo pill I took during my clinical trial, but getting to the starting point has been less than straightforward. First it was meeting with a radiation oncologist at Penn. Her hope was to be able to do proton therapy and to be able to hit the spots in my lungs and my abdomen. If you have no idea what proton therapy is, welcome to the club! You need multiple medical and doctoral degrees to understand it. It’s a specialized type of radiation therapy that uses proton beams instead of x-rays and allows for more precise targeting and less damage to healthy tissue nearby. I imagine it like the mathematical equivalent of landing a human on the moon, but on a microscopic level inside of a living, breathing body. Altogether her plan would mean 5-8 days of radiation therapy.
I’m not great at math and logistical planning is not my strong suit, but as my brain turned that over, I could not quite figure out how that would happen. Radiation treatments are about thirty minutes to an hour long and have to happen on consecutive days. Penn Medicine in Philadelphia is either a two and a half hour round trip train ride or a 4-hour round trip drive on one of the most traffic-laden, accident riddled portions of the Pennsylvania Turnpike. Her wheels were already turning before she saw mine smoking. “Is that logistically possible for you to make it here? I know it’s a long way and you have work and kids” she said. I nearly cried. I have sat with doctors over the years who are concerned solely with the treatment and the tests and making it all happen as soon as possible. I get that and have accommodated it (with much help and flexibility). But the compassion and understanding that my life continues to go on -all the band rehearsals and soccer practices and grocery shopping and the laundry, oh the laundry – in the midst of cancer, was striking from someone who’s job is really just to have a comprehensive knowledge of radiation physics, anatomy and molecular biology. Thank God for good doctors.
Thank God also that of the 48 proton therapy centers in the US, Penn Medicine is one of the leaders and that their secondary proton therapy center is in Lancaster, just a 30 minute drive! With the approval from insurance for proton therapy and the approval from my oncologist and radiation oncologist to do treatment in Lancaster instead of Philly, I got set up with another radiation oncologist who would be the one overseeing my direct treatment.
I have a memory of being at my in-laws soon after Joe and I got married. My mother-in-law has display cases of her collection of depression glassware in each color. It’s beautiful. Each piece, each set, had been carefully sought after. Hours spent combing through antique stores and garage sales to find the missing saucer or glass. As we looked at it and she shared about it, I remember her asking if I knew what I might want to collect. The question struck me and it’s something I’ve come back to a few times through my life – what do I collect? If you have been to my house you might say I collect books, lined neatly by color and genre flanking the picture window on my living room shelves. If you’ve seen the shelves in my basement you would argue that there is a greater collection of jigsaw puzzles than there are books in my house and you wouldn’t be far off. But what I have been feeling in the last decade, is that maybe I am actually a collector of doctors and specialists. Between cancer and its impacts on other systems of my body, I rival most octogenarians for number of doctor appointments and names on my rolodex of specialists.
There is a strange tension I live in in the midst of this collection. A couple weeks ago, after battling a virus of some kind, I ended up at the Oncology Evaluation Center (imagine an urgent care/emergency room just for cancer patients) at Penn with pretty severe dehydration and fortunately, lots of testing revealed, nothing more serious. But as I laid in another hospital bed listening to the hum and drip of the IV fluids, covered by a formerly warmed, but scratchy hospital blanket, I wanted desperately to open my eyes and be anywhere else. The smells, the questions, the tests, the needles, the ginger ale and the jello. I just wanted this to not be a reality I was a part of. And then, I was grateful. I needed care and with one message an appointment was made and I was whisked (generously by my parents) to a world class hospital where there was a clean room waiting for me, a nurse gently taking my vitals and a doctor making sure every angle was looked at to figure out why I was feeling so badly. What good people. I added the OEC number to my collection.
The tension was there again this week as I added once more to my collection at my proton therapy mapping. For the proton beams to be at the exact same spot for every single treatment, there is some pretty intense planning that has to happen. The first time I had radiation therapy it was in my neck and upper chest. In order to insure I was always still and lined up correctly, a mold was made of my head and shoulders that then clipped to the radiation table. Then three small dots where tattooed across my middle so they could line me up.
This time is not quite so awful, but because they are radiating in my abdomen around some critical organs, they have to minimize my ability to take deep belly breaths. So imagine an inflatable whoopie cushion that is filled with air and then strapped across my abdomen by a WWE championship belt. Then, I have to hold my arms above my head like I am being held in a full nelson while they shift me slightly – up a little, over a little, back just a little. When they get it right, they mark all over you with sharpie like a human Pictionary pad. Then you hold it for 25 minutes while you go in and out of the CT scanner. When they feel like it’s perfect, you get more tattoos – 4 to be exact.
It will take about one more week for them to use all the information they gathered to put together the exact coordinates and mathiness of my treatment, so I imagine I will start the first week of June. In the meantime, I started my chemo pill again this week. So far so good, but I don’t know that I have ever been so hyper aware of everything happening in my body. I am just waiting for every terrible side effect or hint that it is going to take me out once a month like it did before.
Painful and absurd and funny and annoying and so incredibly amazing that this technology exists and I can receive this treatment. Anger and peace. Frustration and humor. Annoyance and joy. Grief and gratitude. And I feel pinned between them all.
Thank you for your love and concern. I am blown away all over again by the support for Joe and I both and our kids. Thank you for cards and check-ins and random acts of holy goodness like macaroni and cheese pizza. We just keep moving forward through it all, allowing whatever the feeling we feel pinned between that day to be ok. One day at a time. One treatment at a time. One collection at a time.
Daring to Hope 