I returned to the chemo chair about four months ago due to increased symptoms, multiple hospitalizations for small bowel obstructions and an increasing tumor marker that was seriously concerning my oncologist and therefore was concerning to me. After a disastrous first round of the chemo cocktail Doxil and Carboplatin we tweaked some things like making sure I got intravenous hydration the day after drug infusions and plenty of water at home and the following rounds of chemo settled into very unpleasant but tolerable treatments every 28 days. Life settled into the chemotherapy rhythm of three weeks of decent quality of life and one week of crappy quality of life. This is a rhythm I am familiar with. After almost sixty chemotherapy treatments under my belt, I have learned to live like this and even find my blissful moments along the way.
Then suddenly, the rug got pulled out from under my feet. This happened literally to my feet when I developed a dreaded side effect to the Doxil called hand and foot syndrome. My husband had been faithfully icing my hands and my feet during the hours that the doxil was being infused to try and avoid this side effect but it happened anyways.
About a week after the third infusion was complete I woke up one morning early because my feet were on fire. I pulled back the sheets to examine my burning feet and saw that they were cherry red and swollen with a large blister forming on my big toe of my right foot. My heart sank immediately because I knew what was happening and I was terrified as I contemplated how much worse they could get and also how was I going to get up out of bed in that moment and get to the bathroom as my bladder was ready to burst.
Just as I feared, my first step onto the floor was agony. My angry red feet could barely tolerate my body weight and the bathroom seemed miles away instead of the mere 15 feet from my bed. The second step from my bed caused me to cry out in pain, waking my sleeping husband in the predawn hour. He sat straight up in bed immediately on high alert asking me, “what’s wrong?” “Honey, what’s going on?”
I tried to shush him back to sleep but he was quickly by my side to hold me up as I hobbled to the toilet with tears in my eyes. I knew this wasn’t good and that I was facing days if not weeks of pain ahead of me.
Sure enough, after sending my oncologist some detailed pictures and a descriptive text he ordered me off my feet and into bed to heal and cancelled my chemotherapy for at least a week.
That meant over two weeks in bed and minimal walking to the bathroom and around the house. Very minimal.
Cancer can steal so much from survivors and I have to admit to falling into a hole of sadness during the first week stuck in bed. Remember, I only get three weeks of decent quality of life between chemo treatments and my overall quality of life has lowered significantly over the last almost five years since my diagnosis.
I use the tools of yoga like meditation, breathing, and practicing gratitude to combat the sadness that accompanies loss from cancer. Yet there are days when I will see my friends and feel jealousy over their healthy fit bodies. There are days where I will see strangers walking around exercising and I feel jealousy at the ease it seems they are experiencing just walking their dogs or walking with girlfriends and talking and laughing. Those are things that brought me bliss before cancer and that I took so much for granted.
Now, when I do get out for a walk with my special walking partner girlfriend I am extra Grateful to be able to walk that day because my pain levels allow me and extra grateful for the good conversations we have. I know she has to slow her steps for me and that we can’t do the big hills in her neighborhood right now and I am extra grateful that she never seems to mind and she just wants to spend the time with me. I kid around with her that she will have to get some real exercise on the other days of the week when I’m not there with her. She brings me ananda. She brings me bliss with her company and unconditional love and support.
When my very fit friend goes to a gentle yoga class with me I am so grateful because I know the level that she can practice at and I know she has limited time as a working single mom. She brings me bliss with her company and compassionate heart.
When a friend brings me lunch and picnics with me in bed as we visit, this brings me bliss. This is ananda to experience someone’s valuable time that they choose to share with you.
When cancer changes our lives and our physical ability to do many things we used to do it can be hard to find our bliss again. When we see the scars on our bodies, our bald heads shining at us in the mirror, it can be hard to find the bliss of getting dressed up and going out if fashion was something that used to bring us bliss. When our bodies are so radically altered from surgeries, chemotherapy, radiation and cancer itself we feel loss and sadness of the bodies we used to enjoy. As a woman with gynecological cancer my intimate life has been mostly destroyed and I mourn the loss of intimacy with my partner.
You name the hobby, passion, bliss that we used to feel and I bet that cancer has messed it up at least a little bit.
When I was unable to walk recently I spoke to my adult daughter about how sad I was not to see her and my grandson Ryder for awhile while I healed. She asked me what I was doing with my time in bed. Was I watching Handmaids Tale? Was I enjoying any good shows or books?
Another blissful activity for me before chemo brain hit me hard was reading. I was a voracious reader. In the 5th grade I won a contest for most book reports written and turned in 58 of them beating the other students by a landslide. I miss reading books so much. I’ve tried audible books but it’s not the same escape for me.
My daughter suggested a few books she referred to as “steamy beach reads” and I bought one for my kindle and tried to read it. To my surprise I was able to read! I mean the type of reading where you stay up late because you get sucked into the story. Maybe it’s the romantic comedy aspect of the books she recommended that weren’t too deep or maybe it was the steamy romance part....who knows?
I called her the next day and thanked her for helping me read again. For bringing me back some bliss that I missed so much. That mental escape that happens with a good book. We cried together before she recommended me her next “steamy beach read” top pick :).
I passed the next two weeks reading, watching tv and the highlight of my days were the morning visits with my younger grandson Jonny who lives with me. Every morning his mommy brought him up to my bed with some toys and we snuggle and giggle. That is Ananda. He is pure bliss. Watching my daughter in law mother has made me fall in love with her more deeply everyday. It brings me bliss as we grow closer over our shared love for my son and Jonny.
This morning I walked into the oncology office and was able to receive chemotherapy. Another 28 day cycle of a crappy week followed by what I hope will be three decent weeks started today.
I’ve learned from these past few weeks that if you open your heart and mind to new things you can find bliss.
It’s ok to mourn the loss of the things that cancer stole from us and I have done my share of screaming at the universe and asking “why me?” over and over again. I will still see strangers enjoying things that used to be so easy and enjoyable for me and I will feel jealous again I am sure. But maybe these past few weeks will make those moments less intense as I have discovered that I can still find bliss.
I AM BLISS