I’m very open with my struggles of depression and sometimes anxiety. It’s been part of me since my early teens. Though there is a lot of darkness in me, there is also pure joy and sunlight.
I had somewhat stopped leaning on people due to constant disappointment of them not being able to hold me up during my time of need. When a strong person cracks or heaven forbid breaks, instead of being heard and allowed to cry, I’m always told to “buck up” and “be strong.” That’s enormous pressure to always remain in-tact.
In this digital age, the reach and support one can find is vast. Though I long for a local bestie to binge watch Downton Abbey (which I’m watching as I type this) and other fun shows or just hangout chatting, it struck me that I’ve been longing for the wrong thing. I keep focusing on friends in real life who can come over, but I see now I have made great female and male friends from all over the world thanks to social media.
From DMs, to supportive posts, to recorded messages from peeps in the UK, to sweet cards and unexpected gifts…how dare I say I’m lonely even for an instant!
So, as the musician and songwriter Joe Cocker sang With a Little Help from My Friends, that’s exactly why I’m able to write this with a genuine smile on my face. I thank those of you who always take time to connect with me on some level. It means more than you will ever know.
Thought I would also take this opportunity to share memories of fun times from the high school days through mid-20’s. I always get excited to share pictures from my many, many photo albums and scrapbooks.
My 4-year chemoversary was on February 26th. I confess I had many mixed emotions and flashbacks on that day. Anyone who has been reading my blog for some time and/or follows me on social media has seen numerous posts about the chemo curls and how I’ve hated them from day one. Looking in the mirror every single day and not recognizing myself has caused major trauma to my psyche.
Last year was the first year I was able to wear my hair straight without looking like a mushroom head. I was so excited to post the first pictures of my hair blown straight because I recognized my reflection for a brief moment. Though I know none of the comments were meant to be malicious, I confess I was deeply hurt when soooo many commented the straight hair was nice, but I looked cuter with the chemo curls. If I’m being honest, it felt like a slap in the face. Couldn’t they see these curls are a constant reminder of the most painful and horrific time of my life?
I had wanted and needed so desperately to connect with some part of me again. My hair has always been important to me. I come from a long line of women on my mother’s side with glorious hair inherited from my great-great-grandmother Ella. She was a full-blooded Cherokee Indian. Anyone who knows me from when I was little saw how long my mother’s hair used to be. My hair had grown to my shoulder blades and super thick by the time I was 9 years old, but I cut it when I was 10 after seeing Anne of Green Gables. It was the scene when she had to cut her hair into a bob because she wanted to dye her red hair black like Diana Barry, but it turned green. I always had at least a chin length bob or longer.
No one has seen the tears when I realized my hair when worn straight isn’t thick like it used to be. The right side isn’t growing fast at all and looks odd. That’s why I started wearing it curly again. I’m waiting for that right side to catch up.
Here I am 4 years later, and the curls seem to be permanent. The only reason I can handle them at this moment is because I do have the option to blow it straight even with the wonky right side. I didn’t realize how much I needed to know I had options again.
Those 16 rounds of chemo I had to receive were the hardest and scariest 5 months of my entire life. I didn’t know I could feel such pain in my body. I had the motherload of side effects, aside from the hair loss trauma. I went back to my journal during that time and compiled a list of ALL side effects I experienced while on Adriamycin, Cytoxan and Taxol.
Loss of appetite.
Tongue would swell.
Bottom teeth ached.
Toenails turned black.
Loss of taste and smell.
My tongue turned black.
Terrible and painful constipation.
Bone pain from the neulasta shots.
Loss of control of bowel movements.
The palms of my hands and feet looked burned.
Hair growing back completely different and curly.
Fingernail beds lifted and ultimately fell off and so painful.
Weight gain from all the steroids infused before each chemo.
Lack of sleep from all the steroids infused before each chemo.
Dark circles under my eyes – still have them but not as panda like.
Physical weakness to the point I had to use a cane and could no longer drive.
Hair fell out everywhere – head, eyebrows, nose hair, lashes, legs, underarms and lady parts.
Mouth sores (those in chemo now, ask about Gel Clair and use it with the magic mouthwash).
Neuropathy in hands and feet – permanent nerve damage to my feet. Zero feeling from upper balls of my feet through my toes within the first 15 minutes of that very first Taxol chemo.
Ultimately chemo induced fibromyalgia that appeared a year after finishing treatment but not properly diagnosed until two years later.
So, when others think I should just move on or not focus on the negative, what they don’t comprehend is I have permanent damage ALL stemming from the chemo. As a former dancer and musical theatre actress in my younger days, to not feel my feet every single day is traumatic. The days of ballet, musical theatre, swing, salsa and tap days are over. I used to walk so gracefully. Now I have a hard time walking across a parking lot because the numbness can also move up my legs and I’ll fall over. That’s why I have a permanent handicap sign for my car. I feel like I’m 543 instead of 43 now.
No amount of gabapentin, acupuncture and any other “magical” treatment will work because my case is severe and permanent in my feet. The nerves are dead.
The nerves in my hands are still regenerating because they often sting and feel like tiny knives stabbing me. Even as I type this piece my left fingers are rather stabby and hurting. I had to learn how to button clothes and put on earrings, bracelets and necklaces again. I have multiple burns on my left arm from when I’ve lost all feeling in my right hand and dropped the iron. I have a new burn on the left side of my neck from losing feeling in my right hand when using the curling iron a few weeks ago.
My body is permanently changed from the chemo, from head to toe. This is one costume I’ve never desired to wear. From chronic pain to neuropathy to thin and wonky hair to burns, I continue to feel like an actress playing the greatest role of my life – ME.
I’m strolling down memory lane remembering my very first audition for a musical in May 1990. It was Grease. Over two hundred kids auditioned and only 30 or so were chosen. I was one of the youngest ones in the cast and was a cheerleader. Kind of fitting, huh? I had one line that always got a laugh when I sat on Doody’s lap.
I was bullied a lot in the high school days and never truly fit in. I was “too different.” So why am I bringing this up? Well, it reminded me of a time where I felt a part of something big and special.
I felt accepted.
I felt liked.
I felt magical.
I felt seen.
That’s how I feel in cancerland. I’ve longed to find my place in the world. I never thought I would find this kind of acceptance for just being plain ‘ole ME. I’ve dealt with some in cancerland who are bullies and rude and who tried to bring me down and doubt myself. Fortunately, going through cancer has given me a thicker skin and made me intolerant of bullshit.
There was a time in my life pre-cancer where I didn’t feel like I had any friends. I had isolated myself which is completely against my nature. I wasn’t confident. I had become this anxiety ridden and insecure woman.
I can honestly say my cancer treatments not only killed the cancer, it also killed that insecurity and anxiety that had kept me stagnant from moving forward in life. It’s strange that it took something life-threating for me to realize that I been a walking zombie just going through the motions with no feeling other than despair.
Fast forward to present day, and I feel like the ME who once stepped on that stage in Grease. I’m fostering friendships both in and out of cancerland. I can honestly say I have friends locally to hang out with now, but I also have friends out of state and internationally who I can facetime or Skype with too. They are just as supportive and caring as the few who are here locally.
I feel confident.
I feel encouraged.
I feel loved.
I feel supported.
So, I leave you with the video of the finale in Greaseclick here because that’s how I feel about all the incredible people that keep coming into my life. There is a new pep in my step. My heart is doing cartwheels. Dare I say, I’m actually having some FUN.
I think many cancer patients/survivors grieve for some part of themselves that’s been lost to this horrible disease. When you add the loss of body parts or the body that you used to know, the grief becomes greater. Then when cancer makes you infertile when you’re still of childbearing age, there’s another type of grief that is palpable.
One of the hardest paths I’ve had to travel post-cancer has been due to the choice of having a child being taken away. Since I was intolerant of the medications to help prevent recurrence for pre-menopausal women, I had to be medically induced into menopause in 2017, so I could try the medications for post-menopausal women. Plus, during my pre-cancer days, I had ongoing issues with my cervix and ovaries – multiple abnormal pap smears and cysts the size of lemons on my ovaries. I had a bicornuate uterus which means it was heart-shaped, so high risk for miscarriages and premature birth.
It’s painfully clear that I would’ve struggled to get pregnant and/or carry a baby to full term. Do I want to live, or die doesn’t seem like a fair choice.
I had stopped blogging about my feelings on infertility because I would get so hurt when people would say, “just adopt or foster.” It’s such a callous thing to say even though I know they were trying to be supportive. I constantly wanted to scream that I’m chronically single!!!
I grew up with divorced parents where my mother had sole custody of me. I saw how hard it was to raise me as single, divorced woman. It truly took an amazing village to help raise and support my mother and I and know we were blessed to have such amazing support. That’s why I would never want to raise a child on my own unless forced due to a divorce. I’ve cost my mother a fortune, even as an adult.
I would never willingly adopt or foster a vulnerable child without being able to fully support them financially and emotionally. I physically don’t have the energy to handle raising a child on my own. I can barely keep myself afloat with medical bills constantly hanging over me and chronic pain that can often turn excruciating. How would that be fair to a child? They need more than just love.
The part I struggle with the most is the longing to share my childhood and college memories, values and wisdom with a child.
Fast forward to Friday evening when I was talking with my friend Francesca. I mentioned her a lot last year because we partnered together to write an abstract that we were selected to present titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers at the 16th Annual American Psychosocial Oncology Society(APOS) in Atlanta in February 2019. It’s honestly one of the proudest moments of my life post-cancer thus far.
Though I’m 20+ years older than Francesca, who is studying for the MCAT’s, she is authentic, thoughtful, brilliant and compassionate among other fantastic qualities. She floored me by saying she thought of me like a godmother, an aunt and a big sister rolled into one. She said I didn’t need to only think I can impart wisdom or share my memories and values with a child.
The way she said those words…her tone and inflection just touched my heart and gave me a new perspective on my infertility. As you can imagine, I was brought to tears but tears of joy and appreciation. Francesca was surprised I didn’t seem to realize that’s how she viewed me.
I had been so stuck on the grieving train thinking only about the loss of a baby or young child, I never thought about the true impact I could make and have apparently been making on an actual young adult outside the cancer world. I’ve mentored over the years but never had anyone say what Francesca said to me with such sincerity.
Yes, I still feel the loss of choice, but have gained a new and unexpected perspective on this loss. I do have so much love to give and little words of wisdom to impart. I’m usually very observant but completely missed seeing I’ve been making a positive impact on someone for almost two years.
My life on the cancer train just took a lovely turn on an unexpected path which has given me a new sense of hope and purpose. Words matter. I see now that I matter too.