It never fails to amaze but also anger me when women question my infertility. On Mother’s Day, I posted below.
I would think no explanation would be needed with this post. I’m not questioning if I am infertile or not. I’m not asking about IVF. I’m clearly stating I AM infertile thanks to cancer. Period. Yet, I inevitably get responses of “miracles happen every day” or “I was infertile once and then gave birth” or “Just believe, and it will happen.”
The insensitivity in those comments make me burn. No one has a right to question without knowing the particulars of the situation. Then when I comment on it, I get the common response of “I was just trying to give you hope.”
The world of infertility is a delicate, sensitive, and emotional topic for men and women. I wish people would stop trying to “fix” the situation, especially when they don’t personally know the person.
I shouldn’t have to post that I had to be medically induced into menopause at 40 because I was intolerant of all post-treatment medications for pre-menopausal women.
I shouldn’t have to post that I had a septate uterus which is a deformity of the uterus, that happens during fetal development before birth. A membrane called the septum divides the inner portion of uterus, at its middle. It has been associated with an increase in the risk of miscarriage, premature delivery, and malpresentation. It’s associated with poorest reproductive outcomes.
I shouldn’t have to post that that aside from discovering I had a septate uterus, my surgical report from the hysterectomy and salpingo oophorectomy also stated I had endometriosis.
Though I know the comments weren’t intentionally made to be hurtful, they were still super insensitive and felt like a kick in the gut. I simply wanted to post for those women who truly are infertile that I know how difficult Mother’s Day can be. If you ever see a woman or a man post about infertility, please do not make those kinds of comments because you do not know the backstory.
Unless the Lord thinks I should have an Immaculate Conception, there is no hoping for a miracle. If someone is asking a question about infertility in their post, that’s the only time it’s appropriate to make those comments. When someone is like me is being vulnerable and stating their truth, don’t kick them below the belt like that. Ever.
I’ve been struggling with the term “essential” for the past few weeks. I have a visceral reaction each time I hear it on the news or read it on social media. In the midst of this COVID-19 pandemic, I was deemed unessential by my former employer and unessential by my medical team. I didn’t realize how much I want to be classified as an “essential” person.
As I wrote in my previous blog post, I was laid off on April 3rd, and it was a shock. I never once thought I was in danger of losing my job and had considered my skills and talent essential. The coldness and dismissive way I was laid off has done a number on my psyche.
Since I’m not on any post-treatment medications for my breast cancer, my oncologist said I only need to see him in-person once a year. My body is intolerant of ALL post-treatment medications at this time. I was told I fall into a category of women whose body just cannot tolerate anything currently on the market. My breast cancer surgeon wants to see me every six months for scans. Once again, I feel like a little pink fish tossed out into sea in the middle of swarming great white sharks. How long will I float before I get bitten with metastatic cancer?
If the corporate world and medical world don’t think I’m essential, then how should I classify myself?
I look at my spreadsheet that lists all my medical bills (yes; I keep a spreadsheet) and think they have no trouble taking my money and calling me during a pandemic asking for payment. I guess my money or lack thereof is essential but not my body.
I fully admit my depression and anxiety is swinging like a monkey at a jungle gym. I have way too many unknowns happening in my life. I can handle one but not multiple. Trying to stay motivated and some days are tougher than others. If I’m not considered essential, then what is my purpose?
Well, when I get too stuck in my head, I need to DO something to give the illusion that I’m essential. So, I went grocery shopping with my mother (she paid since I’m unemployed) and bought food to deliver to St. Andrew Catholic Church so they can give it to St. Vincent de Paul’s food bank, and delivered food to a the women’s shelter The Drake House. I felt this surge of energy and felt essential in doing something kind. I can’t bare to think of people and children going hungry at any time but especially during an economic shutdown.
Then I felt essential again yesterday as I led a 15-minute session about writing to feel and heal at the GRYT Cancer and Mental Health Summit online. I had so much fun preparing for it all week and then to talk about my struggles and how writing helps gauge my mental health was hugely cathartic. If what I said resonated with at least two people, then mission accomplished.
I have no idea what this week will bring. Here’s what’s running through my head right now.
Will I get a job interview?
Will my true purpose be revealed to me?
Will I get a job doing what I genuinely love that doesn’t deplete my soul?
Will my unemployment funds miraculously show up in my back account since I can’t get a human on the phone at the department of labor?
Hopefully, I can find something to do that will make me feel essential this week and keep the thick veil of depression and anxiety from suffocating me.
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.