Groundhog Day

Everything is fine. Honestly. It’s fine. I have been in worse positions.

After the doctor drained the fluid in the office, within 24 hours my abdomen was full again. He sent me to the hospital to have a drain placed again. This time the drain was in my lower abdomen, frustratingly where my waistband is. I’ll skip over the pain of the procedure and cumbersome nature of the bag attached to the bottom of the drain.

Two long weeks later, I’ll again skip the graphic description of the removal. I’m instructed to get in the bed, wear a binder, and wait three weeks.

Three more weeks.

I also learned something I feel like I should have known about before I consented to this surgery. Remember when the surgery was going to be a DIEP flap? But it had to transition to a TRAM flap? I did all my research on DIEP flaps.

Part of the reason my abdomen looks misshapen is because they took the left lower abdominal muscle. They did not take the right lower abdominal muscle.

Don’t you think that information is something I should have? Along with “Your drains will be placed in your groin area, the scar will not be in your bikini line and hidden but actually across the center of your stomach”?

So I have keloid scars on my ribs from the drains that I can deal with. Scars that are in my groin from the drains that has puckered my mons. An off center belly button and the sutures to create the belly button have left keloid scars. And a hip to hip scar with puckered skin at both ends of the scar. My abdomen is sunken in on one side, comes to a literal point in the center, and flattens out on the other side. The flat part is where they left the muscle. It causes the other side to look sunken. The dip from above my scar to below my scar is so drastic it creates a shelf.

I’ve been wearing my binder as tight as I can and still be able to breathe, I’ve been resting and letting my abdomen heal. We are trying very hard not to have open wound vac surgery to remove the fluid. I do not want to wear a binder forever. One of the goals of this surgery was to not have to deal with pain constantly.

I fear I’ve traded one pain for the other.

Hey but at least my reconstructed boob looks great so what the fuck am I complaining about, huh?

Once I heal, even if I don’t have the open wound vac surgery, I still have the other symmetry surgery to match my existing breast to the new one. I don’t know that I have the fortitude or desire to do this again. I’m lopsided and misshapen anyways so what does it matter?

Oh you can have “finishing surgery” to clean up anything that’s healed incorrectly. It’s not covered by my insurance because it’s purely cosmetic and costs thousands of dollars and more recovery time.

So I’m just laying in the bed doing the same thing over and over and over and over ……

Just hoping that for once, something goes smoothly.

Drains, ghosts, bomb scares, and donuts.

I woke up late because of who I am as a person. Elder and I rushed out of the house blurry eyed and complaining about the early hour and lack of coffee.

The rain made everything miserable and cold. At the hospital, I drank ice cold contrast. Twice. Waiting for it to work through my system was a test in patience and intestinal fortitude. Once in the room, I was shocked that I needed an iv in addition to the drink. Thankfully I got a tap the first time. This is rare and as it turns out, a high point in the day. The tech told me they are sending the results to my surgeon ASAP but it appears that I don’t have a hernia like my previous blog suggested. It’s a fluid pocket. (Look up seroma if you are curious)

I said to the surgeon “You are so sick of my shit.” He chuckled but didn’t disagree. He drained the fluid as I tried to stay on my feet and not faint. Standing for this procedure is painful and not recommend. It was nearly a liter of fluid but thankfully no pus was in the fluid. Elder was fascinating by the procedure but kept a firm grip on my shoulder. The fluid got on the doctor’s shoes though and I’ll think about that for a while.

If it fills again quickly, I’ll have surgery. If it fills slowly, they may remove it at the office again like today.

While we were in the office, Middle is waiting in the parking lot. She’s sitting in the car watching the door through the rain. She glances up and sees a person gliding passed the window in white. She glances down as her brain catches up with her. She realizes what she’s seen and looks up again. No one is there. She’s shaken and looking around desperately for the “person” that was just there .05 a second ago. When we walk out she’s oblivious to the hell that has just happened in the office and yells across the parking lot “Yo… I think I just saw a ghost!!!!” Elder and I just stopped and said “huh??”

So we are all sitting at Booksamillion waiting on Youngest to get off of work. I’m slowly recovering. Elder is discussing ghost stories with Middle when we all get a Snapchat from Youngest.

A man has rushed into her work, left a black duffle bag in a chair and excused himself to the rest room. He leaves the restroom and does a fast power walk out. Youngest sees him break into a fast sprint as soon as he’s out the door and RUN down the road. Everyone stops. She goes to alert the manager. (I’m going to skip the details where the manager does nothing and leaves a 19 year old in charge of a bomb scare. She’s informed by the district manager to call the non emergency number for police. 15 terrifying minutes later (because it isn’t an emergency and the manager is a fuckwad) one police officer arrives. Using bare, ungloved hands this guy just opens the bag. Thankfully everything was fine. I have things to say about how the police officer handled the situation, though.

He lifts out a protein shaker cup of hard boiled eggs. Youngest says “Is that…. eggs?” Everyone draws a relieved breath. Inside the bag is a cup of eggs, a cup of either urine or apple juice, and marijuana. The officer puts everything back in the bag and shrugs his shoulders. He doesn’t take the bag. He suggests to leave the duffle bag outside and if the guy doesn’t come back, to just throw it away.

Youngest writes her incident report and meets us to relay the events of the day. Once she’s done, I let her know about my abdominal issues and Middle says “That’s nothing. I saw a ghost.”

Everyone is drinking coffee and indulging in dark humor while we decompress.

Youngest gasps and says “oh no no no… John Mulaney and his wife are getting a divorce.” As if on cue, all four of us burst into tears in public. Eventually the decision to get donuts is made.

But wait… there’s more

I have been improving slowly. Frustratingly slow progress that tests my patience is not my forte apparently. But here I am.

I can see the finish line. My final consultation with the surgeon to discuss my last surgery is next Monday and I’m counting the hours. I have visions of lacy bras and matching panties. I have visions of a back and shoulders that isn’t leaning or compensating. I can see years stretching out in front of me of no phantom breast pain or internal itching/nerve pain. But most importantly I can see a future that doesn’t include cancer.

I’m officially in remission.

My general practitioner knows of my upcoming surgeon appointment and sent me a text message. He was checking on me and I was happy to report my blood pressure is normal, my energy level is returning. The incision sites both harvested and transplanted are healed. I mentioned a tidbit that was nagging me and he asked for clarification. “My abdomen is weird. Misshapen. Hard and pointy.” Once I fumbled through my explanation he said he’d need to see what I’m trying to explain. I said “I have a feeling I’m going to be making an appointment, huh?”

Which brings me to today, sitting in his office. He has a guess but can’t confirm anything.

I am being sent to the hospital for ct scans and x rays bright and early on Monday morning, before my appointment with the surgeon. Hopefully the results will be faxed over before my appointment.

The doctor thinks I have a post surgical hernia.

Yup.

Guess what fixes that?

Surgery.

The catch is the plastics surgeon may need to refer me to general for this. The other catch is that not all hernia surgery can be done laparoscopically. The other catch is this will set my last remaining surgery back even farther.

Yup.

collections

I used to collect people. I was so starved for validation and acceptance, I needed the constant stream of people in my life.

When my children were small, there were always extra children around. I rarely said no to a sleepover. I was the room mother, I was the Girl Scout leader.

If we were friends, I’d invite you for coffee constantly. If we were lovers, I’d make sure you received the best nude pictures. If we were in a relationship, we were either fighting or making up. If we broke up, it was imperative that we remain friends. I had any number of friends, family, children, lovers, ex lovers, current relationships swirling around me all the time. I was privy to the latest gossip. I soaked everything in, desperate for connection.

I couldn’t be alone.

It took a few more burns than I would have liked to learn the value of alone, to learn the value of quality.

I have a handful of people I’d drop everything for, a few more that are lovely people when we occasionally see each other, and a bunch of people I’d throw a nod to if our paths crossed. But growing into a person that is content without the constant stream of people and energy has been challenging.

I swore that given my past and the situation with my ex, I’d not over extend myself to him. I don’t feel the need to check on him and make sure we will remain friends. I’m not forcing anything.

Recently I started to doubt myself. Maybe I should check on him. Maybe I should try harder. Maybe I should invite him for coffee…. I’m a mean spirited person, I should have more compassion. I should be better at a whole list of humanitarian issues.

It is what it is. I’m at peace with where I am.

I don’t need to soothe feelings and be a caretaker, I reminded myself that I don’t have to do anything to remain a good person. I don’t feel guilty. It’s strange to not feel guilty.

I like myself. I love myself. I am reminding myself that I don’t need a collection. I don’t have a responsibility to anyone but myself.

But growth is really hard sometimes.

Insomnia

I recently went over 30 hours without sleep. Eventually I stopped counting because I couldn’t read the clock.

My head pounded, my vision blurred, and thoughts scattered. Eventually I walked into the living room and looked at Middle for help. I’d tried dark and quiet. I tried a soothing repetitive motion but it isn’t as effective as it is when someone else does it. I tried meditating and was desperate enough to count backwards from 100. She handed me a pill that isn’t a sleeping pill but makes me sleepy nonetheless. I know I fight the effects of medication so I thought maybe I’d be in worse shape.

I slept for the next 36 hours in 3-4 hour increments with 30-45 minutes of awake time. By the time those 65-70 hours were over I didn’t know what day it was or if I’d missed anything important.

I felt like I had a hangover for several days. Those dried out sea sponges that are cracked and brittle was what I imagined. I drank protein shakes and Powerade attempting to help my body.

Finally I felt like I was on track. I checked in with my body and tried to chalk this up to some strange fluke.

Until it happened again. This time once I hit the 24 hour awake period I drank water, took a very hot shower and took a pill. I darkened my room and laid down.

I don’t remember drifting off to sleep. I don’t know how long I slept. It has been an incredibly strange week and a half.

I’m trying my best to not make this a habit.

I know one thing, though.

I am so tired of being tired. Can this next phase be a tiny bit easier?

Normal

Warning: nude-ish pic attached

My blood pressure is right in that middle range where it’s too high to be considered low and too low to be considered normal. One or two more points in either direction and we’d have a definitive answer but when has my body ever cooperated? I do feel mostly like myself, though, so that’s good.

When it’s late in the day and I’ve been active, my body will nudge me in the right direction. I get snippy and I have to sit down or things are pulling tight and I have to force myself to stretch out and relax. The amount of times I’ve heard a medical professional tell me to trust the process is maddening.

Normal is a relative term and I’ve never been big on trust.

But here I am 2 months after my surgery forcing myself to rest and trust my doctors. It has been a very long two months.

I am drinking mostly decaf with a caffeinated drink occasionally, …. I could go down the list of healthy, beneficial things I’m doing for myself.

All I really want is to have this last surgery and paint my kitchen and I don’t have an abundance of patience.

Gah, who knew self improvement would be such hard work? At this point I’m just complaining that I get tired toward the evening.

I was asked if I was happy with the results of my surgery on my quest for *normal*…. I’d already decided that no matter what the outcome was, I’d be happy with it. So my answer is yes. I’m happy with the results.

Did I anticipate these results taking two entire months of recovery?

No. No, I did not.

Hopefully future me will be happy with the final results. But for now, this is the two month post surgery result:

Mt. Washmore

My dryer died this week. I wore a binder that feels amazing for a few hours until suddenly I have to have it OFF right that second. My other binders are dirty…. because laundry and dryer stuff. Not that I could reach into the bottom of the washer to begin with but still.

The amount of laundry this house generates is astounding. There’s a new puppy that “excited pees” so life is interesting. My trash wasn’t picked up for literally no reason so we’ve got trash just piled on the island. I really should recycle.

So I’m getting back into the swing of things slowly and the amount of bullshit awaiting me is overwhelming.

But some of these things won’t wait. So I’m having to be an adult. Being an adult sucks. I’m antsy and itchy and edgy but I lack the energy to do most of it.

Waiting on yourself is worse than waiting on someone else. Finding that balance of healing and healed, finding the balance between needs to be done vs what I can let slide is constant and takes mental energy.

My physical energy is even less than my mental energy.

I’m already on a good track, though. I’ve got a good plan in place.

I just need to be able to reach the bottom of the washer.

Waves

One moment the pain is a dull roar and the next it’s a panicked scream.

I sit up swiftly at first, but then slower and slower as the days drag on.

The rush fills my head until my brain pounds inside my skull and stars shoot down to my toes.

I’m cinched in tight, holding my breath.

Butterflies dance in my stomach. If I open my mouth they will fly out in the form of screams.

Open your eyes they say. Open your eyes I whisper. Blood pools in my navel.

The shower washes it all away…

Until the next wave.

Wide Awake and Asleep

So I drove… guess what you use to drive? Stomach muscles. Yup.

Who knew!

Huge mistake!! What was I thinking?

So today has been a bit of a rest day. I don’t know how true it is scientifically that you heal when you sleep but everyone keeps excusing me for my multiple naps and odd hours. Someone will call or text and I will respond hours later, if at all. I know that’s rude and I do have good intentions. I’m grateful that I’m being given a pass on communication right now.

I have slept 10,12,16 in a 24 hour period for days in a row. I can’t seem to help it. Sometimes you take a nap and sometimes the nap takes you.

Thankfully I’ve trained my children well. They never knew when I’d sleep or when I’d be up while I was going through treatment. It became a general rule that if I’m asleep they don’t wake me up unless the house was on fire. So they just understood during this recovery experience to allow me to sleep.

I’m also sleeping more solidly because I don’t spend time fighting drains. Eventually this will all even out and I’ll not feel like Rip Van Winkle.

I called my doctor and the nurse told me I can have forbidden foods sparingly in moderation so I had my first piece of chocolate. If I had known what this chocolate tasted like, I would have certainly chosen differently. I may go in search of something more worth my while next week.

Tomorrow I am going to move more, not drive a car, and attempt a more predictable sleep schedule.

Tonight…. I’m going back to sleep.

patience is a virtue

To say this experience has been trying and tiring would be an understatement but finally I have some good news.

Finally.

All of my drains have been removed!!!!!

I put on real clothes today, including a sports bra type thing. Although I have to wait to have surgery on my right original breast for symmetry, I’m pretty happy with how I felt in clothes today.

The incision hasn’t fully healed so I’m to take this next month and allow my body the time it needs. I didn’t learn this lesson when I went through Chemo. I was two weeks out of treatment and went back to work. It took another three months to stop vomiting. I was so run down that my job asked me to resign.

This time? The amount of nothing I have done is bewildering. I’ve slept almost as much as I did during my treatment. I pushed myself too quickly when I got home from the hospital and I paid for it and I think it set me back. Patience is not something I have an abundance of when it comes to my own well-being but I was stopped in my tracks. My body demanded rest and eventually I succumbed to it.

I started to have guilt that the house is a mess and the laundry is piled high but eventually I let all that go. It took a few stern talking-tos and there have been a few times I’ve grabbed my phone and fired off a frustrated “I’m in pain. I’m done. The house is a mess. Why did I do this”text. Thankfully those texts are met equally with support and encouragement. The guilt is still there but much less than originally felt.

Being on the mend with positive feedback from both of my doctors feels really good as well. All of the issues that cropped up have been dealt with. The only real complaint I have at all is that pedialyte tastes the way I imagine shit tastes. I’ve also slowly gone from my pain being a constant 9 to just feeling sore. So that’s good.

The timeline is all over the place though. I thought by now I’d be done with my second surgery and well on my way to the next chapter of my life. No. This entire journey has taught me that my body needs to be respected and there is no timeline.

So there ya go. I’m better but still waiting.