18. A Week of Weird After a Week of Travel

I’ve been procrastinating writing this post for over a week because I’ve not been in a good headspace.  I’ve been in the weeds.  A couple of weeks ago, I had a follow-up PET scan and brain MRI to establish new baselines after finishing chemo… with mixed results.

The good news: Significant gains in the tumors in all the main organs of my body.  My spleen and liver have shown the greatest improvements, which is really really good as it continues to lengthen the runway.

The not so good news: The cancer in my left iliac had grown substantially, putting it on the radar needing immediate attention.  From the initial appointment with the radiation oncologist, it looks like it will be 20 treatments in all, five days a week for four weeks -- I find out more on Friday.  It is a highly targeted therapy, with a great success rate and minimal side-effects.  My hip has been quite painful and impacting my quality of life, so at least that will be resolved.  My work now is to continue to think of it as something good for my body and overall wellness, and I’m slowly getting there.  Also, the spot that was visible in the brain MRI done at NIH in October is back, at 3mm.  The thing I learned about MRIs is that the image slicing is done in 1cm increments, so my last MRI missed the spot with the way it was sliced because it’s too small to hit the margin.  Nothing to do at this point, it’s small and relatively stable, so we wait and see.  I do feel that my new protocol of diet, exercise and integrative therapies will continue to keep it at bay.

I delayed getting these results until after a trip I took to Portland, I needed a break from all things cancer-related and didn’t want my emotional processing to get in the way of a good time.  I’d signed up to do a four-day creative painting workshop with two of my favorite Portland artists.  One, a brave intuitive painter, the other a modern tribal jewelry designer.  It was the perfect distraction, one that was badly needed.  They were both kind enough to paint a pair of sneakers for me to wear on the trail.  

I had some good creative time and some good creative insights: namely that I’m not a painter, but the contrast between how stretched I was to put paint on canvas and the ease at which I can write was obvious.  Painting while fun, is not called from my soul… and answered that question I’d been curious about.  Below is the one piece from the workshop that I’m most proud of, and was completed in 10 minutes and hardly used a brush!  I was in a group of 14 lovely people, and definitely made some new friends.  And, I always gain a different perspective from the sharing of others, which I always enjoy and learn from.  We’re all creative in our own unique way.  All in all, time and money very well spent!

The time since returning has been strange.  I felt very fatigued for the first two days after returning, it was a lot for me to be in a workshop for seven or eight hours a day.  The next day I had my first non-chemo IV infusion, which was two and a half hours (now every three weeks), as compared to three days every two weeks.  It felt quite liberating to have that time back, and I had my wits about me enough to walk the half hour home afterwards.  I still have an abnormally high dose of Benadryl with the infusion, which leaves me a bit disoriented and tired in the aftermath.  The side-effects in the days afterwards though were significantly less than with my previous chemo experiences.  For example, the sores in my nose that I’d had for the last couple of months have now healed completely.  The red inkblot butterfly tissue artworks have receded into the background… and I know we’re all a little sad about that.    

In the week since treatment, I’ve had a hard time emotionally processing the scan results and have been in a funk.  I’ve had a few days where I’ve woken up very cranky, which is an anomaly for me.  It’s a good indication of my headspace, and a superficial symptom that indicates underlying dis-ease.  Ironic, no?

It usually takes me a day or so to bounce back from these scan results, and a big part of it is that I’m shooting for complete remission, and when the scans don’t reflect that, I’m disappointed.  This, even in the framework of still being able to feel the cancer in my body.  It’s a weird phenomenon.  Especially when 99% of the time I feel optimistic and resilient, and intuitively wholeheartedly know that I’m going to kick this cancer in the butt(hole).  I even have a new cool pair of pointy boots to prove it!

I know that I have every right to have some down days with cancer and treatment, and that these feelings are completely normal.  What’s been concerning is that after a few days, it still lingered.  And it's so very annoying.  I’ve felt angry, sad and frustrated.  Cancer can be hard, treatment can be hard.  I know that I’ve made significant gains against it since diagnosis.  I know that I’m on the right track, and that healing isn’t linear.  It’s just a bugger of a thing to get your head around sometimes.  I continued to keep up with all the things that I know are good for me, and it wasn’t until today that I feel like I’m pulling out of it.  It may have been the appointment with the radiation oncologist and that information on something I’ve been anxious about, or the fact that my hip is a little less painful, it might have been the EVOX session that helped me release some of what I’ve been carrying these last few weeks.  All I know is that I find it hard to write when I don’t have clarity of emotion, but that writing is also a tool to help me process that exact thing.  Lesson learned in that regard… I should have written this last week!

So in all of this, the lesson has been a good reminder that no step forward is ever in vain, even if you take the scenic route.  And didn’t I post that on Instagram over a month ago?