Tag Archives: Grief

Bilateral Mastectomies: Scared, but Determined

Update on my health, if you’re interested, if not, please carry on! (TL;DR: Surgery 9/19/18, I’m scared, but determined!)

September 19, 2018. That’s the date I’ll be going in for surgery. I’ll be having bilateral mastectomies with delayed reconstruction. My surgery will begin at approximately 4:30pm, and then I’ll be staying the night in the hospital.

I’m at peace with my decisions about treatment, but I’m pretty scared. I’m scared of quite a few things… 

I’ll be honest, I’m mostly scared of pain. I already have a bum knee and a bum foot on different legs, so mobility is occasionally an issue for me already. I hear that I’ll be unable to lift my arms for a week or two, that just walking to the bathroom will be difficult.

I’m also scared of how my body will look, even after reconstruction, and how that will make me feel. I’m scared of how I will feel about my body’s less than sexy scars and new dimensions.

I’m scared that I’ll gain *more* weight. I know the typical picture in my head of a cancer patient is that they lose weight, but commonly breast cancer patients will gain weight.

I’m scared that the surgeon will find more cancer. I’m scared that if that happens, I will be told they want me to do chemotherapy. I don’t think poisoning my entire body is a good idea. I don’t think the benefit is always worth the misery of chemo. It would have to be a really big difference for me to do that. I’m scared that I’ll have to fight everyone for the right to make that decision.

I’m scared that I’ll get lymphedema (a common after effect.) This is a swelling in the arms from extra fluid in the area that can be very painful and not good for you.

I’m scared that I won’t be able to do my job for awhile and that I’ll drop the ball on something important. I’m the office manager of a small engineering firm and there isn’t any other purely support staff. Everyone else is either an engineer or a drafter, not trained office support personnel. I think it will be okay, but the idea of things not working out like I think they will definitely scares me.

I’m (minorly) scared that the financial impact will be difficult to take, as we get hospital bills and my hours at work are reduced. We are in the extremely fortunate position of having enough money to get by without scrimping. We can go out a lot (a fact I’m sure does not go unnoticed) and take a vacation every once in awhile. If I were to lose my job and my health insurance, well… that wouldn’t be good.

I am really missing my mom right now. The love and support from everyone is really fantastic and I’m so very grateful! But still… I miss my mom. I miss her hugs. I miss her never-wavering support. She wasn’t always the best at being a mom… I don’t think my parents really wanted kids… but she was a good mom, after I became an adult and I didn’t need her for things like, you know, *survival*. She believed in me and was super supportive of me! She thought I was brilliant and funny and kind! And that’s what I thought of her too! I do try to be those things. It doesn’t *always* work. She’s still alive but living in a memory care center and she doesn’t know who I am, and isn’t really verbal anymore. Just a word here and there. Last summer she was in the hospital for a couple of days and I spent many hours there with her. She said “I like you” to me with a smile. I cried as I smiled back and told her that I liked her too, very much. So yeah, missing her right now.

Despite all these fears, I am determined to try my best to be courageous and face these obstacles head on. I am determined not to let this disease define me. I am determined to live my best life, for as long as I can, which should be a long time. I’m only 52. Lots of life left to live, places to visit, people to love, and memories to be made!

Thanks again to everyone reading this and thinking of me and praying for me and sending me encouraging messages. I treasure them all! 

Advertisements

Grief is an Interesting Creature

Grief is an interesting creature. It has fangs and claws, it screams and cries, and yet has soft fur and kind of purrs sometimes. 🦁

There is a strange solace in grief. Mostly I feel a little detached, and a lot fuzzy. Forgetfulness and an inability to concentrate and focus are ever present.

It’s been just over a month since my father died, unexpectedly. Since I found out my first love had passed away three weeks prior. Since I got the diagnosis: Breast Cancer.

These are all things that I am grieving, along with the many fears that come with illness: will I be able to keep my job? If so, will I lose significant income? Will I be hit with huge medical bills? Will they find more cancer when they do surgery? Will I have to do things that don’t feel ‘right’ to me? Will my marriage suffer? Will my friendships suffer? Can I still be more than just my disease? 😢

I am not conscious of grieving most of the time, but the symptoms are all there, even when I say “I’m fine”. I had some of these things before this, but I’ve also been grieving my mom’s long, long, long goodbye for well over 10 years, and grieving my sister’s death last year. Here is a list (from griefwatch.com) of some of the physical, emotional, social, and behavioral symptoms I can truly say I’m experiencing right now. I deleted the ones that didn’t apply to me. There are still a lot of words here…

*Physical*
Feelings of unreality; Physical distress such as chest pains, abdominal pains, headaches, nausea; Change in appetite; Fatigue; Restlessness; Crying and sighing; Feelings of emptiness; Tightness in the throat

*Emotional*
Numbness; Sadness; Anger; Fear; Relief; Irritability; Guilt; Loneliness; Longing; Anxiety; Meaninglessness; Apathy; Vulnerability; Abandonment

*Social*
Overly sensitive; Dependent; Withdrawn; Lack of initiative; Lack of interest

*Behavioral*
Forgetfulness; Slowed thinking; Wandering aimlessly; Trying not to talk about loss in order to help others feel comfortable around them; Needing to retell the story of the loved one’s death / illness; Needing to retell the story of my diagnosis.

I’m in therapy (because I’m always in therapy!) and that’s helpful. It’s the only place I’ve truly mourned my dad, cried my eyes out and yelled about the unfairness of it all. The finality of knowing I will never get what I wanted from him. The child inside of me is wailing about feeling unwanted and unloved, never feeling good enough, never feeling like my dad and I knew each other. Knowing those things will never be fixed now. Even when I knew it intellectually before he died, the child in me hoped. That hope died with him. That’s really hard.💔

Therapy is also proving helpful for John and I to communicate better. He’s also joined a club he never wanted to join: Breast Cancer Husband/Partner/S.O. He’s joining me in some of my therapy sessions to help us communicate better. To help validate both of our feelings and identify where the rocks are that we keep stubbing our toes on. *Ouch!* is a common emotional feeling for both of us, because everything is just simmering below the surface and it doesn’t take much to erupt into an argument. Feeling selfish, feeling like the other is being selfish, feeling abandoned, feeling helpless. None of it is fun.

All of it is life. 👩‍❤️‍👨

Just keep swimming… 🐠


“My sister is dying…”

For the last 26 hours, since I was given the news that my sister’s cancer is inoperable, my every thought seems to begin with “My sister is dying…” and then fragments from there. Simple muscle memory activities, the things I would expect to proceed without error, are done incorrectly, in the wrong order, with steps mixed up and/or left out. I find myself rehearsing in my head what needs to be done next to finish an activity. And even then, they all seem to start with “My sister is dying. What do I do next?” Today I put my phone in the fridge. I hit the wrong buttons on the microwave. I immediately forgot the answers to questions I asked and had to ask again. I walked myself through doing the laundry, step-by-step narration in my head.

I think about what I might be wanting to hear if it were me. “My sister is dying. What does she need from me? What can I say that will reassure her? What do I do next?” I think about who she worries about, and what she might need to know. She never married, has no kids, no life partner, but still she will be leaving people she loves behind. People she might worry about. Is she worrying about her mother, my step-mother? I will be there for her. I will reassure my sister that her leaving this world will not leave her mother alone. I will tell her I love her, that I don’t want to lose her. But I also feel the need to reassure her that it will be okay to go, when it’s time. It’s what I would want to know. That my loved ones would have each other, that they would not be alone, that they had companions both in grieving and in living again with this new hole in their lives that is sure to come. “My sister is dying. What do I do next?

I don’t know how much time there will be before she goes, but I don’t think it will be enough, because it could never be enough. I also think it will be too much, because when there is pain and suffering involved, surely there will be too much. I feel helpless, and angry, and unspeakably sad, and afraid, and ill-equipped to cope with what is happening. Over a day later, my thoughts still start, “My sister is dying. What do I do next?” and then fracture into little vignettes of stop-motion animation, stuttering across my brain. I am operating in a fog.

She will be 46 next month. I imagine (I hope) she will be here still. Then the seasonal holidays will be upon us before you know it. Will she be here for all of them? Some of them? Any of them? How will this change my feelings about the holidays? They are already bittersweet, at best. How will she feel? If it were me, I think I would worry about leaving a sad memory, to accompany all future holidays for everyone. I don’t want this for her. I don’t want her to feel responsible for managing the feelings and thoughts of the people surround her. I don’t know if she will dwell on this. “My sister is dying. What do I do next?” I will tell her it’s okay to let any of those guilty feelings go.

I will give her the gift of my imaginary beautiful walled garden, my safe sanctuary, and my imaginary lion, who protects me, and my imaginary mama-bear, who nurtures and cares for me, and my imaginary wise owl, who counsels and teaches me, and I will hope that these bring her comfort in the same way they do for me. “My sister is dying. Here is the love I know how to give. What do I do next?

I am temporarily broken. After all this, when I am put back together, there will hopefully be light shining through the cracks in my surface. My new normal. I have learned that the best way to heal myself emotionally  is to be present for someone else, someone dealing with whatever I’ve already gone through. To give them tools for getting through to the other side. While I would certainly prefer not having the hard times, I know that my experience is redeemed if  I am here for the next broken person the world puts in my path with the same or similar wounds. “My sister is dying. I feel helpless. What do I do next?

Tomorrow’s goals:

  • Be loving.
  • Be present.
  • Show up.
  • Listen.
  • Ask how I can help.
  • Forgive myself for making mistakes as I do these things
  • Keep doing these things.