Author: Amanda Lundberg

Fear

When I got home from the hospital, it was scary for Arthur, our little Chihuahua-mix. He was used to me being gone sometimes since I travel for work quite a bit normally. But when I got home, I smelled different and I was hurt. He jumped up next to me on the couch and he was shaking so hard, I could feel it even through the dazed fog I was in. He was so, so scared. Someone had hurt his mum and he was afraid. He’s supposed to protect us. How could this have happened?

 

Edie beagle’s reaction when I got home? I’m… going to avoid her. She smells funny. They’re very different. She’s happy I smell more normal at this time.

 

We’re good now. He still is plastered to me whenever he can be. See, keeping your human safe involves cuddling with them lots and barking at people walking on the next block over. At first, he would sleep with me one night, my husband the next. Currently he sleeps with me on the sofa bed downstairs, Edie beagle sleeps upstairs on her bed next to our bed. All humans are being cared for correctly and to the best of their ability.

Arthur looking at me lovingly from the sofa bed, on top of my comforter.
I'll hug you and squeeze you and love you forever!

 

Fear is everywhere right now. Obviously, a fear of getting sick from COVID-19 and getting friends and loved ones sick and maybe ending up on a ventilator and maybe dying alone. Legitimate fear at the moment? Absolutely.

 

The fear of losing everything you’ve worked for. The fear of losing your job, or if you’ve already lost your job, how you’re going to make ends meet and provide for your family. Do take advantage of unemployment payments if that’s an option - the majority of people want to work and take care of their families. They want to feel productive. This whole staying at home thing can be very tough.

 

But you can do it!! I know you can. Together we will beat this thing, figure it out, and unless you are an essential worker all you have to do is stay home as much as possible. Stay safe. That’s how we are sending each off into the world right now.

Edie on her side on the couch watching TV and not avoiding me.
I'm done avoiding you now that you can sit on this couch again.

 

Tomorrow I am going to my surgeon’s office to get my drains out. I’m ready for them to be removed. Having two little tubes sticking out of your chest is getting annoying. My right one especially seems to want to misbehave. I think it’s because the tube is shorter and I’m right-handed, so I do everything with that side. Once the little bandages that they’d put on around the spot where the drains come out came off, they started annoying me more. We’ve taken to taping gauze loosely over them to keep my compression bra - is it really a bra if it’s not holding up any tatas? - from rubbing on them.

 

I’m ready for them to be gone! So, we will go tomorrow out of our safe place. When we arrive at the hospital, he will drop me off as he’s not allowed to come in. They could have made it happen, but I don’t see a reason to override their protocols. I can go in by myself even though I can’t drive yet. I will wear a mask, eye protection and gloves. I may also wear a head covering because hey, why not? I’ll go up and sign in and ask the important questions we wrote down if they’re not answered while they’re removing the drains.

 

The most important being: How much did my breasts weigh? I must know!

A white crocus flower, looking down on it from above.
I still can't end down much to get good flower shots, so I improvise.

Obviously the most important question. That and how to prevent infection on the drainage sites. I guess that’s important too.

 

Hopefully I’ll keep getting better. Progress is fast some days, slow others. I did work a few times last week, and I seem to be mentally and physically up to the task as long as I don’t work too many hours. And by that I mean, no more than an hour at a time. One job went an hour and a half and I was so done.

 

It’ll get better. It’ll get easier. Take it one day at a time. I’ll take care of me. You take care of you. This too shall pass.

 

Filed under: Uncategorized

Recovery

Done!

 

Kidding. I’m almost two weeks out from surgery and insanely proud that I can do my PT with 2 lb weights and walk 1500 steps in a day. I can also brush my teeth, but not my hair yet. I can’t lift my arms that high. I’m going with quarantine hair, don’t care, though!

 

We came home on March 19th, the day after my surgery, and honestly? I could barely get out of a chair on my own. The ride home was traumatic, as mentioned in my previous post. My mastectomy pillow - a gift from a friend, thank you!! - took care of the top half, but nothing could really help the feeling of stuff shifting in my belly with every turn and curve.

 

It was great!

**Sarcasm in use.

 

So, back to recovery. Today I’m 1,000% better than I was on day one. Every day is getting better/easier. But I’m not back to ‘normal’ by a long shot. The first few days I had to have help getting up - especially out of bed. ‘Bed’ has been the new sofabed in our lovely room we are finally finishing. Except it wasn't until last night that I used it as a bed, and then this morning I couldn’t get out of it on my own. I think of it like a new hurdle to jump over.

 

My lack of being able to get up is mostly due to the surgery on the lower part of my body, so if you’re having a mastectomy only, take heart! My abs were, well, moved about and they’re still getting back to where they should be. I’m not allowed to really do much to help them as of yet. I’m just glad I’ve gone from looking 18 months pregnant to 6 months pregnant or so. Seriously. I think between the day we came home and today I’ve lost 20-30 lbs.

 

I was so bloated and sore when we got home, that the day I finally did a poo - had to be within 3-5 days of surgery or I’d have had to go back and get ‘assistance’  - well… let’s just say things were challenging. I did manage to reach that first time. Had to get assistance the second time. Love does stink, but I’m happy to have someone to help me through it.

 

The lifting me out of bed and assisting in the bathroom - thankfully mostly with showers - has fallen squarely on the shoulders of my husband. And I am so, so happy that he’s here to help. And that he knows how to help because of helping to care for his grandparents in the past. He’s not complained at all, even when I’d call him at 1am to come downstairs because I couldn’t get out of the couch myself to wee.

 

We are also thankful for all the friends and neighbors who have helped us. Every two days since the night we got home, someone has dropped off food. It’s been such a huge burden off his shoulders to not have to cook dinner, and sometimes there’s been enough leftovers for those two nights plus! And apparently everyone I know is an amazing cook. So, so thankful.

 

This post is not linear. My recovery is not linear. Some days I feel great! Most days I need a nap. Some days I’m just tired. The one constant is that my belly swelling is going down daily.

 

I forgot to mention the drains! I have two drains coming out of my body. They are on each side of my chest and are long tubes terminating in what look like little grenades. Several times a day he strips my drains for me. This entails holding one hand pinching the top of the drain tube near where it comes out of my skin and using an alcohol wipe to squeeze the, uh, juice in the drain down towards the JP drain - Jackson-Pratt - and then emptying them. If there’s not a lot in the drain after stripping, we just strip. When you empty them, you clean the tops and the little plug and squeeze it before closing it. That creates the suction to keep the, uh, body juices flowing. If there’s a measurable amount, we empty and then write down the amounts. I’ve got to be below 30 milliliters or whatever it is by next Monday to get them removed. Shouldn’t be a problem.

 

I also need to talk about the mastectomy scars and how that’s going. They don’t hurt. Maybe they did, but the gas and bloating hurt more. I’ve been on just Tylenol for at least a week now. 1000mg, two times a day. Before my first shower, my husband and I sat down to look at the picture the doctors had sent me so he’d know what to expect. Surprises are great! Except when they’re not.

 

Sometimes it feels like my chest is asleep when I touch it. Like, about to wake up, but not really. I’m glad I’m having some feeling at least. Hoping that hugs will be awesome again once I’m healed and social distancing is a thing of the past. I’m also swollen still up top, mostly under my arms where they took the lymph nodes. But that’s what the drains are for, and that’s getting better every day. It just feels weird when I touch it all, but I have to keep touching it to help the nerves know where to regrow.

 

See, there are lots of nerves cut during a mastectomy because they just have to. There’s no way around it. Some people never get feeling back, but I’m hopeful that in time I will.

Two pictures of a woman looking in the same direction - she's supposed to be looking in the opposite direction in the second photo.
My favorite PT explanation photo. Get it?

 

Advice for recovering from stuff: Listen to your doctors. When they tell you to limit activity and not lift more than 10 lbs, there’s a reason for it. When they tell you to do physical therapy, do it! I’m going to try to get my eight exercises done three times today with my 2 lb weights. One down, probably go do it again after I’m done writing this, and then this evening. Eat lots of protein, and don’t worry about the carbs right now. Sleep. As much as your body tells you it wants to, do it. You will not regret it.

 

Filed under: Uncategorized

Escape from Hospital

Part 3

I just love the British hospital instead of ‘the’ hospital.

I was in my room. I’d had two attempted wees. Husband was present. Eventually on the third wee attempt, the flood gates broke loose. My captioner bladder - an uncanny ability to hold excessive amounts of wee for extended periods because ohmigosh your hour-long meeting was now at two hours without a sign of stopping - had reconstituted and I had waited probably too long.

I lost at least 2 lbs in that ‘go’. I promise, all this wee talk is important for my escape plans. Bear with me.

He ordered dinner for me. I was not excited about much, but his suggestion of turkey with gravy and green beans sounded good. I added a brownie and tea. When it arrived, he cut up the turkey for me and you know what? It was pretty good. And the best part? I did not feel sick. At all. I had zero nausea. Nausea is common after general anesthesia. I’m glad I don’t seem to fall into that category.

A fun sidenote on the eating/drinking water and things - I kept trying to go over my tatas. I was so used to them being there, that I was picking things up and going up and over, then looking down and remembering that I didn’t have to anymore.

I think I’m used to that already. Probably because I’m kinda lazy, to be honest.

I was looking up into the vent in my room and I swear there was a face. A bearded dude looking up. Not scary. Just interesting. I think the drugs helped - it was much less vivid the next morning. My husband tried to look for it with me - not sure if we saw the same faces or not. Some narcotics would have helped him see it better I’m sure.

My blood pressure was high at first. Like 166 over something. It went down overnight and changed depending on who was taking it. I don’t think I’m ever allowed to have my blood pressure taken ‘normally’ ever again because of the lymph nodes they removed - two on each side. For now, it’s my lower left arm.

As I was having dinner and drinking water, I kept raising the cup/fork up to go over my chest as I would have had to in the past. At some point, I realized this, looked down, and thought, I can just go straight up from here! Score. Much easier. I’m pretty good at finding silver linings in any situation.

Gabe wearing sticky electrode pads on his chest removed from Amanda before discharge from hospitalEventually, I sent the husband home to be with the doggos and sleep. I had hope for sleep, but no true expectation of sleeping. My expectations were met as I think the longest I ever ‘slept’ in a stretch was 20 minutes. And even then, it might have just been a meditative state. I’d wake up any time anyone came near my room so I was wide awake any time they came in.

They hooked me up to leg squisher things as soon as I got into my room. I’m sure that’s the technical term. It was to keep clots from forming in my legs overnight. Apparently they are disposable. I should have asked if I could keep the second pair I had on. See, I kept getting up to wee. And not like a small tinkle. No. Pounds at a time. I was traumatized by how much wee I was producing. I am estimating I lost 10-16 lbs in water weight that night. My belly was still enormous from the gas, but the kidneys are FINE.

Anyway, with all the unplugging/replugging, someone trying to get my blood pressure on my leg - that didn’t go well - the leg squishers started to malfunction and beep as I was drifting off. This happened a few times before my tech decided to just replace them. The ones I had on went in the garbage, new ones behaved much better.

I was given a sweet something to drink and then a cup ‘o drugs. Following that, a syringe of some nasty-tasting stuff that I chased with water. Another 15-minute Tylenol drip - the bottles are pretty cool-looking. I think. That’s what I wrote down.

But I also wrote down: “goal: make staff smile → accomplished → hand job. Love them.”
Translation: “Goal: make staff smile → accomplished → *hard job*. Love them.”

I was kinda high and tired when I made my notes, but maybe I’ve forgotten why all the staff were so nice to me…

Anyway, at 4am I was wide-wide awake. Making notes. Reading the breakfast menu. I was starving. I’d gotten off the hook for the 3:30am blood draw, probably by my extensive wee production, so there’s that. But hunger… that was top of mind. I wasn’t going to make it.

I did make it. I called at 6:30am exactly. I was told a 3 minute wait to talk to anyone, but it didn’t take that long. I ordered eggs, bacon, breakfast potatoes, strawberry Greek yogurt, a fruit cup and a banana nut muffin. Coffee and chocolate milk.

I ate most of it when it showed up an hour later. Saved the fruit and muffin for a bit later, but they didn’t last long. Eating without nausea, good appetite: check.

The gyn surgeon people came by at maybe 6am? They used little flashlights to check my scars - all good! They asked me how I was, and also somehow pets were mentioned. Apparently, as they were waiting to go in after the breast surgical team was finished, they were talking about their pets. Cats and dogs were being discussed as they waited. This is a comforting thing for me. All these people poking and prodding and cutting stuff off and out of me? They’re people. Some with pets at home. All with families, people who love the people.

Just a very zen moment for me learning about the pet discussion. No wonder everything went so well!

The other way beyond wee to escape from hospital was flatulence. I needed to fart. I was pumped full of gas, but none was heading toward the exit. I made a note of a possible escape at 6:58am. Because when you’re in hospital, be precise, amiright? The last note I wrote that morning was at 8:05am. DEFINITE FART. Check.

Wee, eating, foofs: Check. I would be allowed to be sent home with a 3-5 day window for number two production. I’ve nailed that one too. Thank goodness. I didn’t want to go back to the hospital because I couldn’t poo.

The last thing before I left was for everyone to parade through my room, make sure I looked okay and was happy with their performances. Was I a little high and thought one of the nerve block people had crazy-colored hair? Absolutely. It was a buff covering the hair. But I seemed happy, so everyone was content.

I was kicked out of the hospital around 11am the day after my surgery. Discharged in record time orsomething. The ride home was not fun, but that’s because every movement of the car I think sent some internal organ to the wrong place for a bit. But we made it! I have a special pillow designed for mastectomy patients. I'll show you a full photo of the pillow in the next few days.

seatbelt over mastectomy pillow with dog print pattern

I’m recovering well, and I’ll write more about that soon. Amanda at home with Iowa Hawkeye mugWe are providing a link to click through if you’d like to see my chest scars as I wanted everyone to be able to read all the way to the end without getting queasy or anything. I think they’re beautiful, but I understand if you don’t want to see. If you are interested in possible results of a flat closure but don’t want to see *my* flat closure, I would recommend going to https://notputtingonashirt.org - there you will find many pictures of flat closures that are strangers and not someone you know.

Click here for photo of my mastectomy closures.

Filed under: Uncategorized

Life is But a Dream

Part 2

I had to wee.

This was the most present thing in my mind. I was dreaming. I had to pee. This was not a true dream or a true thing because what really was happening is I was starting to get some sense of feeling back and my stomach was full of gas from the lower body procedure. It was putting pressure on my bladder and everything.

Gotta go! I was dreaming. As with dreams, this dream makes absolutely no sense, but since I remember it, I’ll share it!

Imagine a white background. Got it? Okay. Now, I see a fairly badly drawn cartoon guy - it just was a guy, my dream - in front of it. He’s running. His legs are at 90-degree angles at all times because it’s a terrible animation. He’s dressed like a superhero and all in orange. Light orange on the arms, legs, tummy, part of the face mask. Darker orange on the knees, elbows, crotch area and chest.

Running, running. Gotta find a place to wee. Did I just wee the bed? I’m starting to wake up. I’m starting to become more aware. There is a dance going on around me.The people in recovery all have a job to do as a patient wakes up, and they do it with perfect precision. I have no idea what they’re doing, just that they’re dancing around and doing things. I’m vaguely aware that, as I wake, my hands are tied down out to the side. This doesn’t alarm me because I trust the people around me completely. It’s fine.I’m in and out, and next time I wake up a little more, it’s just me and a nurse who has been assigned to me. My hands are free from restraint.

“Am I still wearing a catheter?” - my first, vitally important question. Probably not the first thing I said, but the first thing I really remember.

“No.”

I’m sure I looked horrified. I was sure I’d wee’d the bed. But it didn’t feel like it, so I drifted off again. As I woke up more, I noticed other dances as other people were brought in. The bed across from me came in, had their dance, and left before I was sent off. The bed next to me was sleeping peacefully. Snoring. It sounded like Edie Beagle’s snores. A definite source of comfort.

Finally, I was getting more awake. I found the clock behind me around 4:30pm. As I became more awake, the nurse talked to me more. “Are you having any pain?” “A little.” Immediately I was hooked up to a 15-minute Tylenol infusion. The pain receded. I think I drifted off again.Hand with IV

My nurse needed to go to a training at 6pm about the coronavirus or COVID-19. I kept telling them they needed to go because I felt that it was very important. Even not high now, I still feel that way, and I think they made it. They ended up having a porter take me to my room.

The porter took me up on the secret elevator and was telling me how they believed it was the end of days. You know, normal talk for someone who is a little high and just out of surgery. It’s cool. I think it’s funny. It’s not end of days. Nope. I won’t allow it.

And then I was in a private room, and oh my gosh I had to wee.

Except I didn’t, really. It was just gas. It really was the perfect setup, though. I’d call for help and the nurses would come get me and I wasn’t wearing anything but my birthday suit under my gown. Very convenient for toilet time!

It was early evening by this time, and my husband came up to be with me for a while before he would go home and sleep. I was in good hands, I didn’t expect him to pretend to try to sleep in the hospital. Plus, the dogs were already confused by a day of other people stopping by to take care of them. A little normal for everyone was a good idea.

Tune in tomorrow for the thrilling conclusion of this part of the story!

Filed under: Uncategorized

What was Surgery Like?

I have no idea. I was asleep.

But I can tell you about the before part and the after part. I’ll try to do that here. My therapist said if you wake up in the middle of the night, just write. That first night in the hospital I did that. I woke up at 3am and wrote down all the weird thoughts and things and stuff. This will be my attempt to interpret those notes and figure out when flatulence first occurred.

We got up a little before 5am. Both freaked out, cranky. Somehow we convinced the dogs to go out and potty - they knew something was up. Usually they sleep until we get up and then Arthur refuses to potty until he’s vibrating or he gets a walk. We got everyone to wee and were packed in the car and headed off by 5:20am.Arthur our Chihuahua laying on the blankets

I was drinking my Gatorade as they told me to. I hadn’t been allowed to eat after midnight - I stopped at around 8pm - but was allowed to drink up to three hours before my procedure. And drink Gatorade. The sugar and electrolytes will help. That I did in the car on the way in. I had downed 16 ounces of water before we left the house.

We arrived, parked, took the elevator up and signed in on the kiosk. We were sent to the waiting room. I remember brown. Why are waiting rooms always brown in hospitals? I’m sure I could get a better description if I asked my husband, but maybe he will want to do a guest post about the brown-ness or non-brown-ness of the waiting room?

This is the story from my perspective. Brown. There was a board on the wall where you could track your patient’s progress. All I ever saw was “Wait Room In” - after that, the board was just for him to track my progress. It was like an arrivals/departures board in an airport. Only you really cared about the line you were looking for, everyone around you was looking for a different flight.

They took me back. I was given a gown to change into and some fun mesh underwear because my body had decided to give me a parting gift over the weekend. One last hurrah for the reproductive bits. Anyway, the mesh undies. My sister said to take home extra because you know what? They’re really quite comfortable. I did not, but I’ll see if I can figure out where to get them from and keep a stash on hand.

They also put in an IV on my left hand at this time. You know, one of those that they plug in/unplug as needed. Stole some blood, had me wee in a cup, gave me some stuff I’m sure. I think I took a little ketchup thingy full of pills. This whole part is kind of a blur. My breast surgeon came in to see me and write her initials on my chest, asking if we had any questions - husband was with me by this point. Only question I had, and still waiting on the answer because pathology is not back yet, is how much did my tatas weigh? You know, important stuff. Almost everyone who was anyone involved in my surgery came in to say hi during this time. My anesthesiologist had a last name of a Ninja Turtle. I knew I was safe.

It was during this pre-surgery prep time that I also got my tramp stamp. For those unfamiliar, a “tramp stamp” is a colorful term for a tattoo on one’s lower back. Mine was just stick on. It was to protect my back during the procedures and seems to have done a stellar job. I’ve had zero pain on my lower back.

After all this initial poking and prodding was done, I was wheeled away to get my nerve blockers. A mastectomy is not a gentle surgery. They have to cut through lots of nerves in your chest to remove the breast tissue. And I had compounded the fun for the nerve block team by having two procedures in one day. I sat up on the edge of the bed and they put a tray table in front of me with a pillow on it. I leaned over this. There was an ultrasound machine in front of me. This allowed them to guide the nerve block needles - tiny needles - into the areas near my spine they were targeting to block.

They had to tell me to put my head down at least twice, I know this. I remember the weirdest things. They sedated me and then started finding the nerve block places. Two on the upper body, two on the lower body. Near the spine, not in it, one shot on each side in each region. Tiny needles. I felt very little. Then I was laid back down and I think I was there for a time while that part kicked in.

The next part I recall is being wheeled into the operating room. It was white, of course. I was looking up at the huge lights above me. I don’t think we have a room in the house that they’d work in, but they’re pretty in a way. I looked to my left and saw my hero anesthesiologist. All was going to be fine. I looked back up and the mask was on my face. I was told, “Take a couple of deep breaths.”

I breathed deeply.

That’s all I remember until I was dreaming before waking up in recovery.

Tune in tomorrow when I wake up and have a weird dream that I remember!

Filed under: Uncategorized

Surgery Went Fine

I had surgery on Wednesday, March 18th, 2020. It was a double mastectomy with sentinel lymph node removal. That means they put some dye into my veins and saw which lymph nodes were the most direct to the breast on both sides. They removed two nodes from each side, I believe, which is good because that means they didn’t see anything of concern. I also had a salpingo-oophorectomy and full hysterectomy the same day. They took out all of my reproductive internal stuff because that was at higher risk of cancer too. Go genetics!

I’m going to write a more complete update for you soon. I took notes in the hospital of everything I remembered from the arrival through my surgery, recovery room - the lady next to me fell asleep and snored, sounding like Edie beagle. It was very comforting, actually. And through the night. I am pretty sure I even wrote down what time I farted for sure because when you’re trying to escape from a hospital bed, the thing they care about the most is bodily functions.

Hoping to do that this week.

It’s taken me this long to write something to post. I’ve been tired. Everything takes so much longer than it should, and I’m glad I had been taking the time to remind myself constantly that I need to be patient. I’m already doing more today than I did yesterday. Like I sat outside for a bit and also was able to let the dogs out. The big one eluding me so far is, well… poo. Gotta get that function going ASAP or they’ll make me go back so they can poke at it or whatever.

I’m doing everything I can and taking all the stuff to help that. This too shall pass. Hopefully by noon tomorrow.

I’ve seen my scars. I will show them on here, maybe at various phases, and with fair warning. They actually look really good, but still might freak some people out. I totally understand. I’m very pleased with the care taken to ensure I am as flat as possible, including under my arms which is a tougher area to get flat. That’s where the lymph nodes are taken from. My scars span about 16 inches across my chest and under my arms with a gap in the middle.

So far, I’m comfortable and happy. Well, except the gassy part. They pump your belly full of gas for the lower surgery portion, and that’s honestly been the worst part for me. Looking 9 months pregnant, and feeling it, and unable to do anything that might strain that area. It’s made it kind of difficult to get up, but I have great help from my husband. We work together to get me up and moving about. I did get off the couch alone today, though, so hopefully I’ll be less reliant on his help soon. He doesn’t mind, but it’s good if I can do more on my own and prove I’m making progress.

That’s it for now. My life is get up, take some drugs - down to just Tylenol and stool softeners already - wander around, eat, sleep. Just be patient because everything takes so much longer than it used to.

See you soon. Thanks for being there for me through all this.

Filed under: Uncategorized

Pre-Surgery Wrap-Up

This is my 60th blog post since June, I guess. So, a quick recap.

 

June: Diagnosed with triple negative invasive ductal carcinoma in my right breast and ductal carcinoma in situ on my left breast. I had a genetic test and it came back showing I have a BRCA1 mutation.

 

“In situ” means “in position” - basically, it’s cancer that’s going to start at some point. It’s just waiting for its moment.

 

Triple negative breast cancer is 10-15% of all breast cancers and means that it is not caused by hormones. This type of cancer grows and spreads faster, the treatment options are limited - I was offered one type of chemotherapy before I went on my experimental drug - and generally have a worse outcome than ‘normal’ breast cancers.

A selfie with my newest short sassy hairdo and lots of cleavage showing.
New 'do before the big to do!

 

I was getting screened. We caught it much, much earlier than if I had not been getting screened. Yay family history! At the time I was initially diagnosed, I had a breast MRI and a full body PET scan. The MRI said, yep! Cancer. The PET scan agreed. The best part? It showed no sign of cancer beyond what we had found.

 

Assuming they don’t find cancer in my lymph nodes or when they do my reproductive organ removal? 5-year survival rate is approx. 91%. Those are good odds.

 

Where are we? BRCA! The BRCA mutations - 1 and 2 - are carried in a very small percentage of the population. Lucky me? There are other mutations that have been linked to breast cancer, but these are the most ‘common’ - so we’ll stick with this. I am BRCA1. I had a 55-65% chance of getting breast cancer by age 70. I beat that! Ha! I also had a higher chance of a triple negative cancer. Winning…?

 

My chance of ovarian cancer? 35-70% because they really have no idea for sure. Your chance, as a ‘normal’ female? Less than 2%. So don’t freak out. You’re probably fine.

 

This is why prophylactic mastectomy and salpingo-oophorectomy are a thing. Prophylactic means removing it before you get something, such as cancer. I would have done that if I’d known. Truly. I am choosing to remove my ovaries, fallopian tubes, uterus and cervix even though they show no signs of cancer at this time.

 

All of this surgery will reduce the chance of cancer appearing in my body again by 85-95%. I’ll happily trade away my breasts and reproductive organs for those odds. I’ve got a lot of stuff to do still.

 

Recap: Breast cancer/both sides, genes that apparently want to kill me, chopping a bunch of stuff off/out so I can live a long and happy life.

 

Cancer will always be a part of my life. I’ll have to continue being screened for stuff for forever, but, hey! No more mammograms! Hopefully I’ll be one and done with this surgery on Wednesday. That will alleviate my fear of laws changing and my insurance being able to evict me because I’m a pre-existing condition. That’s what I’ll be for the rest of my life, so if you are in a place where you are healthy and can advocate for sensible health laws, please do. The sick people get tired of being the only ones to say, “Uhm. These laws are dumb and need to change to protect all citizens, not just those who can afford to pay for it.”

 

And the last point I’ll make: Support each other. Whether it’s a cancer diagnosis or a global pandemic, we need to support each other. And support choice. I had options and choices to make about my treatment. I am choosing flat closure, no reconstruction. Others may choose reconstruction with implants or with a fat transfer surgery. Support us.

 

I am choosing not to do any fertility treatments/harvesting of eggs. Others choose to go through that process because the cancer treatments may very well remove your ability to reproduce. Support us.

 

It’s impossible to know what choices you’ll make unless you’re in a particular situation, so please just support each other. And be nice. Darn it.

 

Note: Gabe, my husband, will send an update after my surgery either Wednesday or Thursday this week. I’ll update as soon as I’m able as well. If you’re on self-quarantine/social distancing, it’s time to find a hobby! Mine is having surgery in the middle of a global pandemic, apparently.

 

Filed under: Uncategorized

Time Won’t Stop

Nope. It won’t. Never has, never will. Unless some of those science fiction things happen or I become a superhero who can stop time. It could happen?

 

I’m about a week out from surgery. Writing this on Tuesday, may not get it published until Wednesday. This week is lots of work and little things and a party. Gotta have a party. Dinner with our neighbors one night, party on Saturday, hopefully get my toes done after asking my surgeon if pretty toes were okay for surgery. Approved! Off I go. Get my hair chopped some more. Chiropractor appointment.

 

All pretty normal stuff. It’s just weird to think this is the last time I’ll be doing any of these things with my tatas and reproductive organs. We’ve had a lot of fun times, after all.

 

I don’t think it’s truly possible to fully wrap your head around this kind of thing. I look fine. I feel fine. I am fine. But… next week I’m going to remove body parts. It’s not because I was injured and they need to remove my X part so I will survive. It’s because of cancer. Because if we do this, it’s less likely I’ll get cancer.

 

Does it remove the risk entirely? Nope. But reduces it greatly.

 

So, here we are at the choice bit. I choose to accept this and move forward with my life. I can pretend that all my diet and exercise finally worked, just in a really weird way, so maybe I need a running coach and aim to do a 5K because I’ll be able to run without holding my tatas down.

 

I choose to be happy. I am lucky. I have so many people who love me. I have so many people praying for me and my recovery. So many people are thinking about me and hoping I do well. I’m not really sick. I honestly never have been through this whole thing. The most sick I got was before I started treatment and drank too much wine and who knows what else. Not my finest hour, but it was part of my grieving process, I think. I’ve been moving through the process and I think, at the moment, I’m at acceptance.

 

That doesn't mean that I won’t backtrack and have “Why me??” moments. It’s a process. Not a one and done.

 

It’s weird how everything in my life has kind of been leading up to now. I spend a crazy amount of time listening to people talk. I’ve had Carol Dweck mentioned quite a few times in talks and I do need to read some of this Stanford professor’s literature on mindset. But I’ve heard a lot about it in talks I’ve captioned. And I feel like somehow, somewhere along the way, I adopted that mindset for my life.

 

I don’t let little things get to me. I’ve gotten much better at that over the past year. Working on mindset is a process. It’s a marathon, not a sprint. That’s so cliche. It’s like an armor, though. Someone could say something to me that could be taken badly, but i don’t. Maybe I’m just oblivious. That’s entirely possible.

 

I don't let other people’s opinions or thoughts dictate how I am going to live my life. And I try to project kindness and happy out into the world as much as I can. Although, it’s okay to be sad. I imagine I’ll be sad a lot this coming week and the weeks that follow. I’ll be missing a piece of me, although I am thankful it’s only physical.

 

Homework for today for readers: Be kind to anyone you meet. If they are coughing, maybe avoid them though. And if something happens to you that can be fixed - flat tire, stepped in dog poo, etc - don’t get too upset about it. This thing is fleeting and has no bearing on the arc of your life. It’s a moment. A crappy moment (see what I did there… hahaha… I’m funny), but a moment that you won’t remember a year from now.

 

And maybe read something by Carol Dweck and give me a summary to review.

 

Filed under: Uncategorized

We’ve Been Busy

I’ll use that as my excuse for not writing last week. So, let’s jump right in, shall we? Gratuitious picture of me in a red, low cut dress showing off my tatas.

 

On February 24th, I signed away my tatas. The paperwork is done, so my only thing to do now is stay healthy until surgery on March 18th. I can do this! Today was my last pre-surgery oncologist appointment. They wanted a gallon of blood. Everyone wants my blood right now. It’s kind of disconcerting.

 

Last week I worked on a job in Australia, so the time difference was pretty extreme. I was done by 2am, though, but it did kinda throw me off for the entire week. Another excuse for not writing. Saturday we went to our local humane society’s grand opening. We did not come home with any dogs, but if I could have snuck them out without my husband noticing, things might have been different. Teehee….

 

Saturday night we volunteered at a beer festival. It was our first time. We’d probably do it again, but maybe pick the Saturday afternoon session and also insist on backup if we were in a station like that again. I was on my feet from 5pm to 11pm - it’s been a while since that’s happened! Overall, it was a good experience. Would do again. Only had to notify law enforcement of one possible problem drunk.

 

And then Monday happened. I had breakfast with a friend, a 1.5 hour job and a massage, and yet somehow I ended up having no free time yesterday and being on the go until I got home after 5pm. Days like that happen, I guess. It was a good day, just went too fast.

A selfi with Arthur chi-mix, he's holding my face, which is him asking to have more pets.
Attack dog.

Who am I kidding? Every day is going too fast at the moment. Two weeks from tomorrow I have major surgery. And other than, oh, the cancer, I’m fine. I don’t feel sick. I don’t look sick. I kinda look like a Korean pop star because I haven’t gotten my hair cut since December - just not as cool, though, because I am not a K-Pop star. Nope.

A selfie of me tyring to look like a K-pop star.
Strike a pose!

 

Looking at my schedule this week and next, it’s busy with work - gotta keep making money - and also with friends and things to do. I hope it doesn’t go too fast, but I know it will.

 

A big thank you, again, to everyone who has helped me during this time. I hope I can be helpful to those who need it in the future. I’m working hard - maybe too hard? - to try to get things straightened up with us and all our finances so we can pay it forward very soon. Soon may be a few years, but, hey, I’ve still got a student loan payment. Was hoping to knock that one out by the time I was 40. Oh well!

 

Cheers!

 

Filed under: Uncategorized

Therapy

I’m in many types of therapy. My favorite is massage therapy. I also have been going to the chiropractor for a long time and getting therapy there. My job is very sedentary, so I end up spending a lot of time and money just keeping myself going to work. The latest therapy is just therapy. Talking to someone outside of this whole fiasco who has nothing to gain/lose by my feelings or thoughts on the subject.

 

I haven’t had very many of these types of therapy sessions. Perhaps I should have started sooner, but I feel like my therapist and I both are on the same page when it comes to what we need to work on. I’m very good at dealing with current and past trauma or issues. I’m very good - now - at self-talk and encouraging myself to get through tough times. I try not to engage in negative self-talk, which probably makes me very annoying to some people. I have no desire to ever be upset, so when things happen that should upset me, I often disallow it and instead focus on what can be done to fix it or what could have been done differently to avoid it. Or if those aren’t options, accepting the fact that bad things happen to good people every day and move on.

 

Basically, things that should bring me to my knees and cause me issues, I choose not to allow it. The only thing I allow is sadness where it’s warranted. I get sad when I think about my Mom and missing her. I get sad when I think of all our doggos that have gone to the rainbow bridge. I get sad when I think about friends who are hurting or sick or in pain.

 

But I do not get sad or upset over things outside of my control. If I did, I wouldn’t be able to function very well.

 

So, back to therapy. We are focusing forward. I’m apparently completely okay with being flat. That caused me zero anxiety. Going into menopause? That is what is causing me anxiety. It’s not that I’m upset about never having children or anything like that, I’m upset and worried about future me suffering from heart disease and having a heart attack and not being around as long as I’m supposed to.

 

We are working on this. I wish it were an irrational fear, but my Mom had her first heart attack at 48. I’m less than 10 years away from that, and my surgery will bring an increase risk of heart attack and bone density loss.

 

We will work on what I can do to mitigate this. All I can really do is to do what you’re supposed to do: Eat healthy and exercise.

 

So, I imagine I’ll continue therapy after surgery to continue working on this. I do recommend therapy for anyone who needs it, but I’m also quite aware of the prohibitive cost. I wish everyone could talk to someone outside of themselves and their situation who could help them. It’s weird how helpful it is.

 

Even for someone like me who thinks they can handle anything and works on their mental state every day to try to make sure of it. This is my first time in therapy, and I’m glad I’m able to go and talk to someone about my fears without being judged.

 

Filed under: Uncategorized