Chronically grieving, single and in pain

Grieving again today. I thought I had picked myself back up, so this uncontrollable crying spell this afternoon came as somewhat of a shock.

Though I have left the Catholic church, I have never lost my faith. So, I decided to go to a non-denominational church this afternoon. I really loved the music and the message. During the service, my left lower back started burning. I tried to block it out and focus.

After the service, I decided to have a look around. I was amazed by the number of volunteers, members and beautiful facility. Then my heart dropped.

Seeing the number of families and all the kids in their fantastic kid’s area was a slap to the face. I will never experience a family the way I had always dreamed. What continues to crush me is it wasn’t MY choice to be medically induced into menopause at 40. It’s not a choice when your medical team tells you due to carrying the ovarian genetic marker, family history, intolerant of medications, and my own personal issues with my cervix and ovaries pre-cancer, this is the only way forward.

My mother found these pics today. I was 29 in the pink. So weird to see my natural black hair. I usually wore my hair up in buns, French braids and twists. When I was 29, I still believed in love and that I would have at least one child. I continue to get offended when women especially mention adoption or fostering to me. I know they mean well, but they aren’t hearing me. If I were married or seriously involved with someone, the conversation would be different.

I’m single. At this point, chronically single. I can barely take care of myself and my cat Nathan post-cancer. I have zero energy to even try dating. I look so physically different now. How come some other warriors got their bodies and hair back? I literally look like an entirely different person.

A friend mentioned that I looked “untried” in my younger days. I have been through many, many trials without it physically altering my inside and outside appearance. I’m an onion with tons of layers. You can bet there are some struggles I’ve never openly revealed on social media.

My weight is slowly starting to go down again. That 1 1/2 months on the prednisone really did a number on me. I can tell my appetite is finally back under control. I’m not having intense cravings. I want to actually plan and cook my meals. My thyroid is normal. I’m not even pre-diabetic. Heck, I’m not even anemic right now.

The chronic pain got out of control, and I couldn’t workout without crying in pain. This is another big struggle. I’m realizing that chronic pain is unpredictable. I can feel semi-decent one day and in excruciating pain the next. I didn’t know this would be life with fibromyalgia and neuropathy. This isn’t going away.

I can’t wait for my palliative care appointment at Emory next month. I am very aware I need help. I don’t have coping skills to manage this kind of grief and pain.

Until next time,

Warrior Megsie

Hurting to Heal

***Trigger Warning***

I’ve been in a very dark place lately. It’s honestly the darkest I’ve been in a few years. I was reaching out to friends seeking words of comfort and compassion. Instead, I felt like most have been trying to “fix” me. The whole adage of “You have to want the change” or “You have the power to change your mindset” or “You should seek therapy if depressed” no longer speak to me. The power of thinking positive no longer works for me. Why?

I was on Instagram this morning. I follow a lot of writers and sites that post quotes. The post I read today is what gave me the push I needed to step back from the ledge. This one below from Digesting Grace spoke to me in the way I needed. It spoke to my soul.

Before I saw that post above, I was starting to plan how I would end my life. I’ve had suicidal thoughts in the past. I’ve battled depression since high school. I acknowledge there is a scary darkness within and work hard to push those thoughts away. So far, my sheer will, and stubbornness has kept me from stepping off the ledge. I’m a huge proponent of therapy. I’ve been in therapy for years until recently.

I realized yesterday that my stress level keeps reaching new highs. The palpable grief is either following me or crushing me. I’ve been questioning the point of my life.

I’m in many online cancer support groups. I always see posts of how their husband and kids keep them going, etc. Well, I have neither, so what is the point of my struggle? I don’t have a legacy to pass down. The items I’ve saved and treasured since I was a child through college mean nothing to everyone but me. I can talk about it with friends and their kids, but they won’t fully understand or truly have a vested interest on the level I do because I’m not related to them.

Why would they care that my college cheerleading jacket looks as pristine as the day I received it?

Why would they care about the meaning behind all my tiaras?

Why would they care about my many, many photo albums and journals?

Why would they care about my beloved scrapbooks?

I then realized the following stressors:

  • The anniversary of a personal tragedy is this week.
  • My three-year cancerversary of my lumpectomy/reconstruction and the nightmare of waking up in the recovery room with blood soaking my sheets behind me because none of the nurses saw a tube was loose until I sat up is this week.
  • My one month of leaving the Catholic faith forever is this week.
  • It has been a month since the shingles insanity and stopping the post-cancer medication with my oncologist’s approval.
  • My next mammogram with MRI is on April 1st.
  • I’ve been medically induced into menopause officially two years now.

I don’t physically recognize myself. I consistently struggle with this unnatural chemo-induced curly hair. It will never be naturally straight again. This is it. I’ve been struggling with my weight since I turned 30 thanks to all the different antidepressants, hormone changes and now induced menopause. I was always very thin but muscular up until my 30th birthday. Then add all the steroids from chemo and the many, many surgeries and steroids post-treatment, no wonder I’m presently the size of a southern whale!

When I make the statement the right man for me doesn’t exist in this life, I’m consistently told the right man will love me no matter what size I am. Well, that’s untrue. I’ve always been drawn to preppy or artsy men.  

I’ll talk about race for a hot minute.

I’ve always been teased and bullied by the bulk of black men and women growing up and as an adult. I’m “different” and constantly told over the years that I dress, act and sound white. I’ve heard this within my own family, too. How about I dress, act and sound like an intelligent woman with a bit of flair?

Then I always hear from the bulk of white men and women that I “speak so well” and “you don’t act like you’re black.” What does that even mean?!

When I was Catholic, I would always have white men and women asking me if I go to the black Catholic church. It’s blow after blow of realizing they don’t see me as a woman of this parish. They see me as a black woman of this parish, and therefore, should go to the black parish.

The only type of men I seem to attract (except when I lived in LA) even when I was a size 6 are black thugs with gold teeth or creepy, old white guys. There was the occasional “my type” but the timing or compatibility wasn’t there. That is why I can make the statement that I won’t find love in this life.

When I look at my features (especially when thinner), I’ve always seen more than “just black.” My mother is biracial, and my father is black. My international friends are the only ones who actually notice that I’m a mix of a unique recipe in a beautiful and positive way. ­

I continue to deal with chronic pain, weight gain, unnaturally curly hair, soul crushing loss of what can never be, and what I didn’t know I wanted until all my lady parts were removed with zero sex drive. The enormity of these permanent and unwanted changes literally sucks my breath away.

Yet, seeing that post from Digesting Grace on Instagram this morning has given me the gentle but powerful nudge to find that miracle in my darkness. I suppose that’s what being resilient is all about.

Until next time,

Warrior Megsie

Power of PTSD: Part II

As I live through my third World Cancer Day, I don’t feel super excitement or jumping around like a cheerleader shouting, “I’m still alive!” Instead, I continue to feel like a shell of who I once was physically, mentally, emotionally and financially. I’m doing well in the spiritual department, which is a refreshing surprise.

I’m constantly being told that one day I will adjust to this “new normal.” My three-year cancerversary is in March and I don’t feel any closer to this acceptance I’m supposed to feel.  Will the grief over my body betraying me ever go away?

I’m struck by PTSD every single time I look in the mirror. It’s bad enough dealing with chronic pain (nerves and joints), insomnia, nightmares and anxiety on a daily basis. Each time I look in the mirror or take a selfie, I’m still surprised by my reflection – the hair, the weight, the skin.

Fellow warriors keep telling me that my hair will go back to how it was pre-cancer. Well, I’m going on three years’ post-chemo and these curly coils seem to be permanent. I know the curls look cute and maybe even make me look younger, but I can’t stop missing my “real” hair. I miss doing French braids, French twists, ballerina buns, pigtails, etc. There aren’t a lot of options with this short hair. It’s growing out and down instead of just down.

Then I look at my skin. It’s so ultrasensitive now. The only fragrance my skin can handle is coconut. I have never liked the smell of coconut.

I had dermatitis flare up on my eyelids, which caused an emergency trip to the dermatologist three weeks ago. This has been happening for the past 15 months or so. My eyelids are so dark from past scratching and irritation. I thought having those horrible dark circles under my eyes was bad enough.

Well, I was freaked out by how suddenly this latest flare-up that happened and the pain. So, instead of seeing the PA, I wanted to see one of the dermatologists to get another opinion. Well, this doctor upset me so badly that I nearly went postal on him. He kept saying stress could be causing this. I kept telling him no and that it must be something I’m using or coming into contact with. Every single time I said that he kept saying it could be stress. My blood pressure was getting to a boiling point.

Once again, a doctor was not hearing me. By the time I left the doctor’s office, I was beyond livid. He said my cancer didn’t cause any of these flare-ups. Um…WTF?! My cancer treatments have directly caused my skin to completely change and become super sensitive. I used to get acid peels back in the day for gosh sakes! Now, I can’t even use perfumed soap!

After talking myself down from almost going postal, I called the dermatologist’s office to file a complaint the next day. Instead of being impulsive, I have learned to sleep on it. If I’m still feeling salty the next day, then I will take action, no matter what.

The woman I spoke with was well-trained because she handled me with such compassion and professionalism that I wanted to reach through the phone and hug her. She didn’t once say, “No one has ever complained about that doctor” or “He didn’t mean to act that way.” She completely validated my feelings and said, “I hear you and so sorry you didn’t feel heard.” She then made sure to note that I don’t ever want to be seen by that doctor again or even walk by him if I have an appointment with someone else because just the thought of running into him would cause undue stress.

I did some detective work with my products to find the one constant item I’ve been using for the past 15 months. I found the culprit – makeup remover wipes. I now use baby wipes. Heck, if it’s gentle enough to use on a baby’s skin, then it should be gentle enough for my eyelids. So far, I am seeing good results.

The fast heartbeat, nausea, angst, and jittery feelings seem to be the norm anytime I go to a doctor appointment, see my reflection or notice yet another side effect popping up. I didn’t ask for any of this. PTSD, as it relates to the cancer experience, is real and not to be ignored.

Until next time,

Warrior Megsie

Power of PTSD: Part I

From the moment I see the familiar buildings of where I had my treatments, consultations, and follow-ups, I immediately get hot, shaky with nerves and want to burst into tears. Then I park. I haven’t even opened my car door and already filled with so much emotion.

I haven’t written in spell because I’ve had many doctor appointments and needed to absorb all the information being thrown at me. I have a new oncologist, had a horrible experience with a new dermatologist and recently met with my amazing plastic surgeon in the past three weeks.

I’m now on my 4th and hopefully final oncologist. I decided to go back to Piedmont Cancer Institute and left Emory Winship Cancer Institute. I also went back to having a male oncologist rather than female, especially after the horrible experience with the female oncologist at Emory.

I refused to accept what the Emory oncologist was telling me. She said since I’m allergic to Tamoxifen, Evista, Lupron injections and Arimidex, there was nothing else she could do. I’ve felt so angry, scared and just horrified that an oncologist would say that and then ask, “So why are you here if you don’t have cancer anymore?”

It was that moment where I realized there is no real guide for post-treatment. At which moment do you stop seeing an oncologist and get handed off to your primary doctor? I had to take time to think about this and gather more inner strength to start the advocating process all over again.

Thanks to some recommendations from my cancer support groups, I decided to go back to Piedmont and meet with a new oncologist. I met him on January 22nd. I had four fellow warriors recommend him. They were right! He IS fantastic! He came in prepared. He has a sense of humor. He didn’t talk down to me. He was compassionate but also real with me. He said I ABSOLUTELY need to be monitored by an oncologist for 10-15 years. He was horrified by what that Emory oncologist told me. He said he had TWO options for me to consider, and that it wasn’t too late to start another post-treatment medication.

I immediately started crying because I felt HEARD!!!! I’m almost at my three-year mark of being NED (will be on 3/28). We talked at length about a plan of action, especially because my cancer was 100% ER/PR +. Even with the hysterectomy and oophorectomy, I still need hormone therapy. His facial expression when I said I haven’t been on any post-treatment medication since June 2017 was one of fear and amazement that I haven’t had a recurrence.

So, I am going on my third week of Aromasin. It’s been strange starting this medication while also being on an intense regime of prednisone for a dermatological issue. I just started feeling some side effects from it on Sunday. If you’ve read past posts, you will know I had horrible reactions to other medications, so I’m a wreck about trying this new one. I’m already feeling the stiff joints in my arms and fingers. I’m thirsty, but I think that’s in part of the prednisone, too. My sleep is completely off.

Yet, I still feel hopeful. Why? Well, my body has had time to heal from the many, many surgeries. I think it’s ready to handle a new treatment. Plus, since I now have Fibromyalgia, the pain from the Aromasin won’t be as challenging to handle since I’m in chronic pain every day.

I shall end here for the moment because I must get ready for work. That will have to be an entirely separate post. lol I will come back and write about what happened with the dermatologist and detail my appointment with my plastic surgeon that I had yesterday.

So stay tuned for more updates this week…I shall call it Part II.

Life On The Cancer Train continues…

Until next time,

Warrior Megsie