Catching Up

I haven’t blogged for a while, so this is a kind of catching up post.

I’ve also been fighting off mild depression, which has felt as though it’s been ‘catching up’ with me every day.  I guess it’s time that I dealt with it, apparently many folks are dealing with a mild, persistent sadness while we’re all in lockdown for an unspecified time.

A large part of the sadness is due to the ongoing cancer, the new diagnosis of Leukemia (well, new in February) and feeling as if I just can’t get past this damned disease.

The current plan for my leukemia is one HUGE and very tough round of chemo while I stayed in the hospital for 7 weeks.  That part is over, and I’m glad I’m done with it.

Then two further chemo sessions were planned, as an out patient, with recovery at home.  I’ve finished one of those sessions and have one to go, but I’ve had a rougher time getting past the side effects of the second chemo session than anyone expected.

The third (and final) chemo session was supposed to happen 4 weeks after session #2, but it’s still not been scheduled.  I’m having a tough time getting my platelets and hemoglobin up to the levels needed to go forward, and I’m having a tougher time with the side effects of the myriad drugs I’m on (many are prophylactic, to fight off fungal or viral or bacterial infections). I’ve had a great deal of exhaustion and dizziness recently, so I made up a spread sheet of all of the side effects I’m dealing with.  Yep, no wonder I’m dizzy…

I have no idea how long I’ll be on these drugs, but considering I don’t even have my final chemo scheduled, I’m assuming it will be quite a while.  I was switched from Prozac to Cymbalta to deal with my depression, it seems to be working well.  I’ve just started a search for a therapist I can visit via Zoom, and I’ve returned to the Living With Loss group at the local Gilda’s Club (also via Zoom) and it felt very good to see my old friends in a grid on my computer screen.

But I haven’t really had a chance to ride my trike, and that’s become a symbol for recovery for me.  I went out and sat on it once (which winded me terribly!) but I haven’t actually pedaled it yet.  I know I will, I can visualize it, but it’s important to be honest about what I’m actually able to accomplish.  When you have intimate knowledge of what you can and can’t do, sometimes the well-meaning cheerleaders are hard to listen to.

Cancer is a marathon.  That analogy works better for me than cancer being a battle, or a war. My own cancer has felt like several marathons, one after the other.  I’m definitely in it for the long haul, I fully expect to make it to the finish line.  The kindnesses of friends on FaceBook and Twitter are like those cups of water that people hand to runners as they breeze by.

This marathon takes focus, just like riding up Ramsey Hill in the St. Paul Bike Classic (which I used to participate in every year.)  The well-meaning folks screaming support to the cyclists from the cliff at the top of the hill have always had the opposite effect on me, they would make me break my focus, lose my rhythm, finally I would dismount and just walk my bike up the final 100 feet to the top of the hill.  I guess I’m not a ‘screaming support’ kind of person.

Today I showered.  Those of you who’ve dealt (or are dealing) with energy sapping conditions will understand what a big deal a shower is.  I still can’t stand up for a full shower, I have a blue shower seat that makes full body washing possible.  I always feel like Wonder Woman after a shower, albeit Wonder Woman with a bit of an energy problem.  I’m going to attempt a short walk later today, but first I’ll sit and gather myself, allowing my energy to regenerate.

And that is what makes me sad.  I feel like I’m living in Groundhog Day.  For almost 2 years I feel as though I’m doing the same things, getting poked for labs, tests, scans, physical therapy when I’m too exhausted to stand, celebrating getting my own breakfast as if I’ve just cooked a banquet for 100.  I’m tired of being this person, this weak, sick, overwhelmed person who tries so hard to see the positive in my life.  I’m tired of the peripheral neuropathy in both legs that makes me feel as if my limbs have constantly ‘fallen asleep.’

I know how fortunate I am, I really do.  I try to honor that, and mention it whenever I get the chance.  But at the same time I’m sick to death of being so close to death.  And at the same time I realize there’s nothing to do but accept my current situation, try to make the best of it, and live as fully as I’m able to.  Which means constant nausea and dizziness, sleeping 18 hours a day, getting blood drawn twice a week and regular infusions, and continuing to wrap my mind around life without Gerry.

And there it is.  The hardest thing in the world to deal with, the thing that makes the cancer feel like a personal attack at times, instead of just an unfortunate roll of the dice.  Missing Gerry is the hardest thing I do, I know it’s so hard for the kids and for his family back in NY, too.  The fact that I had 12 years to contemplate and prepare for his leaving us does make it a bit easier, it really does.  But at times the pain of knowing I’ll never hug that dear man again is almost overwhelming.

I confessed to Andy back in November that I felt as though I were going backwards.  I had been healing from the Lymphoma pretty well since finishing chemo in January.  Learning to walk again, applying for and actually getting a job (which I had to walk away from because my health began to deteriorate – my first hint that something was going wrong.)

Andy, already devastated by the loss of their Father and exhausted in their role of ‘caregiver of the house’, wouldn’t have it.  “You’re FINE, you’re getting better.”

And I felt guilty for bringing up my fear that the cancer was back.  But the cancer was back.  This time as Leukemia, brought on by the chemo that had destroyed the Lymphoma, which is apparently a not uncommon situation.

I’m tired.  I’m scared.  I want to live for 40 more years so I can see Halley’s Comet.  Some days the fear is overwhelming, hell, I’d settle for 10 more years, I’d love to see a grandchild someday.  Recently the exhaustion and fear have been haunting me, I think I’m feeling the miles I’ve already run, and I need to be better about pacing myself.

And, of course, I have a great deal of joy in my life, too.  Being with my kids, laughing with Max, hugging Andy, all of us enjoying a game of scrabble or a piece of chocolate cake, these are golden moments.  I love our pets, and they show me so much love that I KNOW they understand that I’m not 100% healthy right now.  The new house is lovely, the previous owners were gardeners and we’re the beneficiaries of their hard work!  I have a lilac tree and a hydrangea bush right outside of my bedroom window.  Now if we could only get ourselves unpacked…

Professionally, I’m submitting a few designs to Interweave Crochet tomorrow, and I may send some submissions to Vogue Knitting now that Norah Gaughan will be the new editor-in-chief.  I feel so happy and hopeful about this, my mind feels clear enough to handle the mental gymnastics required to create a pattern.

And, of course, I have that tricycle just waiting for me to ride it.  Until then, I have my walker, and I’ll be off for my walk this afternoon.  Maybe I’ll take the dog and ask Max to join us…