How to Survive a Menty B breaks down medical trauma and illness-induced PTSD with me, a therapist with both PTSD and a Ph.D.
This is my survival guide, my survival story, and my survivor legacy.
How to Survive a Menty B is a library for people navigating the upheaval of medical trauma and PTSD. With each post, I explore a new topic and dissect the role of medical trauma in daily life and relationships.
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When Life Gives You Lemons
Friday 11/5/21
I feel old and ugly today.
Sad and over.
All of a sudden, I aged 20 years. It happened slowly and then all of a sudden. My skin and my nails are shit. My scars are everywhere now. There's nowhere to hide anymore. I just think about the wreckage of my body and my mind and my frayed connection with everything.
I see meaning, and I have hope. But I feel really sad and angry, too. I didn't want anything to change. I didn't want everything to fall apart, and I wouldn’t be better off than I was before or appreciate life more, or whatever.
In the quiet spaces of my mind, where hope and despair mingle, I grapple with the weight of my reality. I understand, on some level, that the fabric of my existence has shifted. The seismic event of cancer has altered my entire landscape; look around me. I stand amidst the ruins of change.
I don’t want any of this to be true, but it clearly is. I do that dance in my mind all night long. Acceptance and resistance. Hope and despair.
The notion that cancer could leave me better or more appreciative of life's fragility is a pill harder to swallow than the bitterest chemotherapy. The truth is, cancer doesn't politely step aside afterward. It's an ugly mile marker, showing a clear before and an after, demanding to be acknowledged and integrated into the narrative of my being.
I’m searching for meaning within the chaos, clinging to hope as a lifeline, all the while knowing that these scars, seen and unseen, have become a part of me, whether I want that to be true or not.
Today, I peek at a reflection in the mirror that feels foreign, bearing the marks of a battle fought fiercely but not without cost. I’m weathered, not just on the surface, but deep within me, where my self-image and identity live.
I have to ask myself how I feel about what I see in the mirror. And I hear all the critics that have ever said anything about a woman’s body, a woman’s breasts, my breasts. I grapple with the dichotomy of feeling devalued by my own critical gaze while knowing, intrinsically, that my worth is unchanged.
I define my own worth. I spent ten years in therapy learning this particular lesson. But here we are. Same old thoughts and all.
It's a cruel trick of the mind to feel 'less than' in a world that equates worth with youth and conventional beauty standards.
I’m starting to see why people bail on this big flap surgery plan and do the implants instead. I'm tired. Physically and mentally, all of it is a lot.
And I'm worried about being ugly. People think, "Well, really, who is gonna see anyway?".
Me, I am.
I already felt the painful stretch and ache of my body being cut apart and sewn back together.
I'm not ready to be an old and in pain all the time. I want a life where I can wish for things, get excited, and feel like I have the energy to do what I like and move my body well.
I should be happy just to be alive. And I am.
I would have died long ago without modern medicine, and I needed these treatments. So, I shouldn't care so much about how I look. But I do.
This is how I knew that going flat could never be my answer at this point in my life. I'm still worried about being ashamed of my appearance, even though it means I slayed a dragon.
Add this to the list of things I need to deal with in therapy.
Saturday 11/6/21
It's November, and I can't believe it. It feels like I barely started Taxol sometimes. Like, I haven't even gone very far. At the same time, I know I have no evidence of disease right now, that I am healing well from surgery, and my mobility is pretty good. And, somehow, I still feel like I am nowhere.
My current plan for my breast reconstruction all feels so far away. The plan is to have the bilateral mastectomy (check), have tissue expanders inserted as a placeholder (got ‘em), and then have a reconstruction surgery called DIEP flap surgery, which uses the fat and tissue from my stomach and hips to make new breasts for me instead of having the foreign material of breast implants in my body.
The tissue expanders are what I’ve got inside me for now. Tissue expanders are like empty balloons made of flexible plastic material. After the removal of both my breasts, they were placed under the skin to fill in the space where my breasts were after all the insides were scooped out. My doctor explained it like an empty pillow case. The pillowcases don’t have anything to hold their shape without the pillows. Tissue expanders are used to gradually create space where the new breast will be since I lost some skin and my nipples during the surgery.
Tissue expanders help stretch and grow the skin over time, even though I have plenty of room, and we could really pump things up here. But the prep is important for making room for the fat transfer, which will replace the lost breast tissue, and for letting things settle down in there before doing another extensive surgery in the same place.
Every week or so, I’ll go into my doctor’s office to get a syringe of saline injected into each expander. This stretches the skin and helps determine the desired final breast size. When Dr. Dayan approves, the nurse increases the amount of saline inside the expander to achieve the desired breast size.
I never thought about how they stick more and more saline in there, but the process was fascinating.
The tissue expanders have a metal port on them, which is inside my body. The nurse came in with a tiny magnet to put over my breast to find exactly where the metal port was. She checks twice, puts an X, and then inserts a needle into the port in my breast and adds a syringe of saline to each breast.
Over several weeks to months, the expander will slowly be filled with saline through this port during quick doctor visits. Since my breasts are completely numb now and forever, I don’t feel anything when this happens, and it doesn’t leave me sore after a fill-up.
It’s weird to watch a big ass needle go into your boob and not feel a thing.
Once the skin is stretched enough and we have a size that works, the tissue expanders will be removed, and then there is an even more extensive surgery that puts my own fat into my breast pockets.
(But that is a whole other process in itself. Let’s just get there, I guess.)
Damn, that’s a lot of steps.
Sunday 11/7/21
My dad arrived yesterday, and I feel happier that he is here. I can always put on a better attitude and try harder to do everything I want to do when he is here.
I still have one drain on the left side. I'm still sleeping in a recliner and then on the couch for the night. One day, I will return to my side of the mattress with my warm cat babies and my husband snuggled up.
It is so gorgeous outside today. Sunshine, blue sky, crisp air, the leaves are about to start falling off the trees in heaps. It smells comforting.
It's pouring out of me lately. Something happened. I feel it now. The weight of the surgeries, chemo, blood draws, and hormones. All the losses flood in at once.
My biological material will never get passed on in the world. I am sad about that. But I am also somehow okay with it. It is heartbreaking and ok at the same time. Is that even possible?
I will be able to find meaning, no matter what. I will figure out a way, somehow.
But it is sad to think about. I am afraid of being lonely in old age. No one will be there to take care of me, and I will die alone, surrounded by strangers and unloved in the world.
To die unloved and alone. That's a pretty harsh thought.
So is dying young. I guess we never win.
Monday 11/8/21
My left drain fell out today.
Both of these drains (and the additional two I started with) were shoved in and STITCHED to my skin. They both detached themselves and slipped out of my body. Ugh, what in the fuck is going on.
This is gross, but without having drains, I have to squeeze my body to get fluid out. I grab a breast (a tissue expander?) and hold it close to me, squeezing a little. And with the other hand, I have the cup under the wound and watch fluid drain out of my body.
When life gives you lemons, drain your surgical wound. Like a disgusting juicer machine.
I told my doctors, but since I have an appointment next week, they will take a look then. I guess it’s not a big deal.
It would be a relief to have a week off from going in. So, I'm just waiting for these holes to close, and then I am back to chugging along toward recovery and a new routine.
Tuesday 11/9/21
I slept a little last night. The drains being out is a big help
I'm contemplating just going with implants. The dermal matrix that was inserted with the tissue expanders will provide some breast shape, and then my implants can fit in the pocket we have created.
I don't want to do this anymore, the waiting for recovery and the tiny milestones along the way, and the damn drains.
And I am still super worried about cutting my stomach and leaving this big scar by doing the DIEP flap surgery.
And even though they don't cut muscle during the surgery, I am afraid I will have long-term pain and weakness.
I’m exhausted and scared.
I already can't feel my breasts or anything from my clavicles to the bottom of my ribs. My breasts feel like they are asleep, itchy, or like nothing at all.
Inside, I feel like my chest got carved out.
I don’t like the idea of having to have surgeries every ten years to exchange the implants for the rest of my life if I go that route. Apparently, that’s part of the deal.
However, they are outpatient procedures, and compared to the stay of a DIEP flap surgery, that sounds nice. The DIEP flap surgery is 3-5 nights in the hospital after cutting chunks cut off and reattaching them somewhere else.
I'm already freaking out. I'm scared.
Cant I try implants first, and then once I don't feel like such shit anymore, or that I have a little strength and life back in me, I can do this big one?
I mean, no one is making me. I like to be efficient and logical. And a part of me is like fuck it, I have nothing going on. Let's do the big one. I'm here now, in the mindset, and have the support. My youth is on my side, even with my battered body.
Ugh, I’m back to wishing this wasn’t happening.
I'd like to know if the scars get cleaned up at some point in time. Mine are already particularly gnarly.
Wednesday 11/10/21
My skin is entirely over the adhesives on bandaids and is super irritated. So, today's instructions from the doctor are to try not to move and leave the bandages off to dry the wounds out.
I am still thinking about what I want to do next with my body. I'm scared of more pain and more loss of sensation.
Ugh, this damn Taxol bone pain is hurtful today.
Thursday 11/11/21
The left wound site is closed, and the breast isn't too swollen. It's a little sensitive, but it's okay.
The right side is much less leaky but still going a bit. The hole is more closed than the other day. My skin can't deal with any more adhesive, so there are no bandages again today; I hope things dry out. The skin under my boob is sensitive and itchy too. I want to shower, scrub everything, shave, and then lay down to dry off, but that day is not today.
But I'm resting now and taking my billions of questions to the doctor on Monday. I need to write them all down.
Holy shit, my bones are fucking hurting today. They always hurt, but very noticeably yesterday and even more today.
Lay down and movie day for me today. Taxol is a real motherfucker.
Tuesday 11/16/21
Yesterday was a letdown.
I had all my questions ready for the doctor, and everything stood at a standstill. Whether it's a quick trip or not, going there is exhausting. But yesterday, we waited an hour and a half in the waiting room for the appointment.
Finally, we were taken back, and Dr. Dayan came in and changed the plan. Since the right drain hole site was still open and leaking fluid, he wanted to put me on a week of antibiotics. He also did a culture of the fluid from the wound. Then he milked my breast.
I really don’t know what else to call it.
I was flat on my back on the table, and Dr. Dayan, his nurse, and Matt were in the room. Dr. Dayan grabbed a handful of my right breast, pressed down against my chest hard, and juiced that lemon to the rind.
A lot of my chest is numb, so it was uncomfortable and painful, but not terrible. Just from watching, I know it didn’t hurt as bad as it looked.
I'm not being hyperbolic with my juicing metaphor. He grabbed, squeezed, and twisted, getting a shit ton of fluid to come draining out of my wound on the side of my chest and caught it with a cup.
I had a direct view of Matt's face while he was watching this happen, and it told me a lot about what was coming out of the side of me. This is the same guy who has been tending to my wounds for weeks now and dumping my drains and everything. And his face was one I hadn't seen—total shock and horror.
I just watched it all since I couldn't feel any of it. Physically or emotionally.
I did happen to feel Dr. Dayan clean the wound hole out with alcohol and then jam a swab in the wound for the culture. I felt it quite well. I guess it's not entirely numb all the time.
My whole chest is sore today, but it actually feels much better than being swollen and leaky. And the wound sites have scabbed over and closed, which is the first time I have been healing in the right direction in a while. I am hoping it will heal up nicely.
I almost wish he could have juiced the other one, but it's been closed for a while now.
The tissue expanders feel weird even when they aren't feeling bad. It's a strange pokey plastic sensation, and they are hard to the touch.
What will the implants be like?
I'm on the implant plan for now. Maybe I can heal and feel like myself and decide what to do.
If I hate it, we change.
It's just really sinking in that I am not okay. I wish my bones didn't hurt and that I could do more stuff without having to get tired or for the pain to get worse.
I'm sure most people feel that way. I'm just exhausted.
Yesterday was long, and I felt like a waste for the first time.
I'm not getting cured now; I'm just trying to look more like me. So, it feels less important sometimes. However, this is quality-of-life stuff—the point of living through the treatment.
Every damn thing that has happened is sinking in.
The pain and dissociation, the freakish body symptoms, and the side effects, both short-term and long-term. The time, the money, the waiting. I don't even know what's worse. And then there is all the loss. My fertility, my breasts, my body, my fucking mind.
I am exhausted. I am weary. I could have cried at the doctor last night because I was exhausted.
I was exhausted from being awake, getting ready, getting to my appointment, and then sitting in the waiting room. My body was over it, and my pain was too high just because the day had happened.