Hard to admit and harder to post that at this point in my treatment that my main problem is boredom. Boredom and cottonmouth. Also an inability to spell moderately difficult words. Can you imagine, exactly how I could be concerned about this when I read pages and pages of side effects including cardiomyopathy, renal damage, liver damage, peripheral neuropathy, nausea, vomiting and rash?
My problem is boredom and dry mouth. And I have the audacity to complain about it. I know I’ll regret it, my silly whine when I could have life threatening side effects. The first chemo hurt so badly I didn’t get off the sofa for four days, sure I was dying of meningitis, but no, I think it was the $5000 shot I got the day after to boost my white blood cells that knocked me down.
How dare I complain when I have benign side effects and 50% shrinkage of my inflammation? “You’re going to regret this for sure Julia.” And feeling remorse last Sunday when during my daily walk my leg sort of disappeared, left me with a feeling of having to consciously lift and move it forward. Later laying on the sofa, I noticed a distinct sensation of numbness and tingling, “Ouch,” I chided myself, “I told you not to complain. You weren’t grateful and now look.”
Hard not to be bored. Hard not to complain. Hard not to be scared beyond when your foot goes numb and you tingle like your Momma did for the last ten years of her life. Hard then not to be upset with yourself for all of the above and then start the process over once and again. I’m only being honest. You know that. Luckily the peripheral neuropathy left the next day and hasn’t returned. The boredom, the wow this is taking a long time and when will it be over and gee I have a modified radical mastectomy to look forward to at the end of twenty weeks and will they get clear margins and will I ever play tennis again?
I want to play tennis again. I’d like to go to Hong Kong. I’m looking forward to the trip my husband is planning in January when this ten month process is complete. And my cancer never starts again. I’m trying to believe. I did some more research on clinical trials. This multi-modal ten month treatment is my best chance. I can tell you I vastly dread and dislike a lifetime of followup that’s looking and looking for something foreign in my body that can’t really be treated. At least not in today’s science. And knowing that instead of these thoughts I should be trusting God to heal and create a cancer free future. It will be so I drone on my cushion, banishing these thoughts that creep in unwanted. Trust God no matter how dark the day may seem, and I do. I am persistent if not perfect. God likes that I’m sure. Persistence.
When they told me my prognosis and diagnosis, sort of in that order, I still didn’t believe. Breast cancer was never in my life plan. Certainly not a breast cancer with 50% survival rate of 2-5 years. I was counting on Hong Kong and then biking in Sicily. “Check my husband’s breast, see where he puts his cell phone? You’ve got the wrong breast,” my mind screamed while my mouth was silent, absolutely doubting the red headed nurse practitioner who’s face went white when she touched my breast and proclaimed pretty clearly my sentence while promising to pray for me. I didn’t want her prayers, I can tell you. I wanted her to shut up and stop talking about Stage 3 and multi-disciplinary teams and chemo starting in less than a week. And aggressive. That’s what I wanted. Can you believe me when I tell you that now I’m doing so well, feeling so fine, that I only notice a difference when I try to pursue an activity? Painting, gardening, cooking, anything I love that I just don’t have the interest and energy to enjoy. I love seeing patients. I love writing. I love watching Netflix and reading. I love playing backgammon and Trivial Pursuit, especially when I win. I’m good at sitting down. Whoever thought my biggest problem would be how to be sick for ten months? How to slow down and do nothing while my body heals and my immune system kick starts the biggest fight of my life to reject this cancer.
I know my good health is due in large part to each of you, my readers, my patients, my friends and family who are praying for me, lifting me up. Believing in me and not the NIH statistics on survival rates. I’d say we’re doing something amazing together. Our cumlative efforts creating the winning team in tonight’s baseball game. Looking out over the field I see myself pounding the ball, it soars over the back fence and as I round the bases, sliding into home, I score the winning run. And you know what else I see? A stadium full of supporters cheering, clapping and waving me round and round. Coming up to bat every Wednesday, we hit another home run. Allowing the Taxol to round the bases too, polymerizing microtubles in this inflammation, keeping on and on and running and rounding first, second and third over and over until all my infusions are finished. Then resting for a few weeks before I go under and they take it out. That’s when I really hear the cheering, the yells, the go Dr. Burns, you’ve got this, you can do it, we love you and we’re here, right here for you. So how can I complain ever about boredom or feel fear of life with one breast instead of two or oral chemotherapy that causes arthritis or followups that proceed every 3 to 6 to then 12 months and showing up for the results, being called into the room only to be sentenced to another round of waiting or or or. What can I fear when I hear the crowd’s roar every time I hit the ball and round the bases? Nothing, I have you beside me. Don’t ever let me go, I need you. We need each other and we will celebrate the power of the Holy Spirit bringing us together in this game of healing love. Strike three you’re are out IBC!
In gratitude, Dr. Burns/Julia