Happy New Year?

I'm spending the beginning of 2021 and my birthday trying to sort through some new feelings. Fair warning: I'm gonna be talking about nipples a lot. 

I got a call from the plastic surgeon's office yesterday. The receptionist asked me some questions and told me to do some research before going, because I would be getting a shit ton of information at the appointment. I'd already done some light research at the mention of breast reconstruction and/or implants, because I would love to get rid of some of them. They are far too large for my liking, they've sagged my whole life, I've had back problems since I was a teenager, and I gave up on wearing any bra that isn't a bralette or a sports bra a few years ago because "real bras" in my size are uncomfortable and expensive. So because of this my initial thought was that I'd like to get a double or bi-lateral mastectomy. Meaning, they remove all of my breast tissue and put in some implants. Both my surgeon and the receptionist at the plastic surgeon's office mentioned that it may be hard to convince the insurance company to do this because according to my genes, I am not pre-disposed to getting breast cancer again. 

So I started researching again, and was ultimately ok with everything until I started looking into nipple reconstruction. She specifically told me to look into this, because they can't always save the original nipple, and when they do sometimes it ends up in a weird position after surgery. I'd honestly never really thought about having to remove my nipple, and the more I read into the options the more upset I got. For the first time since those first few days after my mammogram, I cried. I don't want to go through this and I don't want to make these kinds of decisions. Apparently a lot mastectomy patients lose feeling in their breasts and nipples, which is kind of the only reason I'd be interested in keeping the nipple in tact. At this point I don't plan on having children or breast feeding, but the thought of losing feeling kind of broke me. I guess the main reason nipple reconstruction or prosthetic nipples are made is for the look of it, and not to restore nerve endings or feeling. So I just don't see the point of any of that. I know some women choose to just leave it off, or cover it with a nipple tattoo. Like, a realistic 3D tattoo of a nipple. Which doesn't really appeal to me either. I'd rather get some actual tattoo art if I'm going that route. 

Hubs found me in the midst of my meltdown and somehow convinced me to get out of bed and sit outside for a while. I guess after that he did some research on his own and made a list of options, which we talked about earlier tonight. He's been a doll through all of this and I'm incredibly thankful to have him. So something I don't think I realized before, is that a mastectomy and a breast reduction aren't really the same thing. I've been talking about getting a breast reduction since I was in college, but I assumed it would be very expensive to do so. Apparently it's often covered by insurance since it can help alleviate a lot of back issues, and I also discovered that a mastectomy combined with a reduction is also a thing that can happen. So I can go the route of a bi-lateral mastectomy so I don't have to do this again, despite what my genes say, but the recovery would probably be more intense. Or, I could have a mastectomy on my left and a reduction on the right, and they can try to make them match that way. The least invasive option would to have them just reconstruct the left breast to the size and shape it is now, which I'm not a huge fan of since they have done nothing but cause me problems. At least I know I have some options now, and I'm feeling a bit more hopeful about it all. Still. Cancer is bullshit. 

I've also held off on telling a ton of people what is going on. My immediate family and in-laws know, and a handful of close friends know. My mom hasn't been handling the news well, but I guess that is to be expected. She let it slip to some of her family about what is going on, and they ended up telling more of her family that we are estranged from. This part of her family is estranged for good reason. They are horrible manipulative people who have done terrible things to my mom and other members of the family, so I happily haven't spoken to them in years. She told me about it earlier tonight and I could tell she felt terrible about it. I was annoyed at first, but I know she didn't intend for the asshole part of the family to find out. I can understand her need to talk to someone about it. I've mostly been writing about it to get everything out of my head thus far, but not everyone copes the same way I do. I have to remember that I'm not the only one being affected by this. I'd planned on telling more people eventually anyway. That was the main reason for starting this blog. I knew people would want to know what is going on, and I knew I would get tired of repeating everything, and I am far better at expressing myself when I can write it out. So I plan on posting it on social media after this post, and then I'm going to go into full avoidance mode and lose myself in the new Stardew Valley updates. 

Here's to 2021; my 34th year of living, and a year full of doctor's appointments.

MRnIghtmare

Let me explain to you how awful getting an MRI is: It's like being in a very small rocket ship, like it's made for a small monkey but they just decided to put a full sized adult in it instead, and you also don't get to go anywhere cool. You just stay on the ground while all of the blasters burn up and 30 minutes later they pull you out and tell you to go home. Also there's a needle in your arm.

Hubs came into the imaging center with me, only to leave shortly after because the waiting room was very crowded and there was nowhere for us to sit. I filled out some paperwork and was told to go into a different waiting room by the front desk clerk who was yelling instructions at everyone in the room.

When I was called back the nurse asked me the same questions on my paperwork, and then asked me if this was my first MRI. When I said it was, she asked if my surgeon had explained to me what would happen, and was surprised when I told her I had no idea what was going to happen. I'm finding that a lot of these offices kind of assume that someone else has explained things to me when in reality I'm kind of just along for the ride. I digress, she explained the process to me and answered all my questions. Normally MRI scans are done with the patient on their back, but since this was for my breasts, I would be laying on my stomach, and it would take about 30 minutes. I knew enough about it to not wear anything with metal. Since I opted for some leggings I got to keep my pants on. They gave me two gowns to wear, one from behind and one for the front, I suppose to keep my boobs from escaping. I then got an IV with a saline solution injected into me, and the connector was taped to my arm while I waited for the MRI machine to become available. She told me that they would be injecting a dye solution during the MRI just to see if it would reveal anything they may have missed in the initial scans. I've only ever encountered needles while getting my blood drawn, and that happens about twice a year for me, so I'm used to butterfly needles, but this was a little thicker and more uncomfortable. I could feel the entry point getting sore while I sat there, but nothing burned or hurt while the nurse was injecting me. 

I could hear the tech talking to the person in the MRI machine before me, and she was asking her to hold her breath, much like I had to do during my mammogram, but for longer periods of time. I tried holding my breath along with her, just to see if I would have any issues doing so myself, and it was touch and go, but I figured I'd survive. 

When the tech got to me, she was super thorough and funny. The table I had to lay on had two holes for my breasts to go, and my head fit into a head rest facing down. She told me this was obviously invented by a man and there was no graceful way to go about it and I couldn't really be decent while getting situated, but at least they wouldn't squeeze my boobs like the mammogram did. She gave me some ear plugs (because this thing is fucking loud). I climbed onto the table and it was honestly pretty comfortable except for the portion between the holes pushing into my sternum. Then it became way more uncomfortable. She strapped my arms to my side after attaching the dye solution to my IV and gave me a "panic button" to hit if I needed anything. Then she started moving me into the tube, and this is where I discovered that I'm claustrophobic. Various people had asked me if I was claustrophobic before I went in, and I told them I didn't think so, but I'd never been shoved in a metal tube before. I'm also a plus size lady, so the tube pressed my arms down even more, further demonstrating that I am t r a p p e d. The tech asked if I was ok, and I said I wasn't sure. I was slightly panicking and almost asked her to take me out and tell her I couldn't do it. She came around to my head and moved some of the tissue away from my face, revealing a window to the floor and asked if that helped at all, and it honestly helped a ton. At least I could see outside of the machine and I felt like I could breath. I don't know if there is a similar window on the top of the machine, because I doubt I'd be able to handle being in there if all I could see was metal. 

Fortunately, I wasn't asked to hold my breath at all, so I guess the woman before me was getting her lungs scanned. I laid strapped to the table inside a metal noise machine for about 30 minutes. After about 5 minutes my body kind of relaxed and I got used to the straps and the table. I couldn't really see where I was positioned, but I get the impression that my legs weren't inside the tube because they were cold, while the top half of my body warmed up while the machine was scanning. I didn't really have any concept of time, but I imagine the first scans took about 15 to 20 minutes. The tech told me I was doing really well, and that she was going to inject the dye into my IV and it might feel cold. It was an odd feeling, but not painful. After that, the scans took about 10 more minutes and I was done. 

I felt a bit dizzy and was told to drink a lot of water to flush the solution out of my system. When hubs picked me up he asked if they'd given me a Xanax because I seemed very mellow. I laughed and said no, I'd just done a lot of breathing exercises as to not panic. If anything, I felt exhausted from it all. The tech asked if I'd have to do this every year, and I told her I fucking hoped not, but I suppose that is a possibility. I'm told there is a different type of MRI scanner that is open and not as terrifying, so I may need to look into that possibility in the future.

I got some Pad Thai and donuts out of the trip though.

Genetics

 Up until now, all of my appointments have been within the same branch of hospitals and doctors as my primary doctor, and they've all happened relatively quickly. The genetic counselor is at a different hospital, and everything there is slow and unorganized. 

I'd been contacted pretty quickly about making an appointment, but I'd mistakenly thought the date was a week earlier. I think because the surgeon had given me a two week deadline, I assumed that this appointment would be scheduled earlier. So I showed up, ran around to several different offices who had no idea what was going on because their receptionist wasn't there, waited 20 minutes for a partially blind woman to check me in, only to find out that I'd come on the wrong day. 

When I showed up on the correct day, things were still slow, but at least there was a receptionist. She was being trained, but was nice and actually spoke to me, so I didn't mind as much. I'd been emailed some paperwork to fill out the week before about family history and genetic background, and I'd sent it back the next day, but they apparently hadn't gotten it, so I had to send it to the counselor again. They eventually found it in their spam folder and printed it out for him to look at while I was in the office meeting with him. He asked if I'd thought about what kind of surgery I wanted, and I told him I wasn't sure what I needed yet since I hadn't met with everyone yet. 

He went into more details about what different genetic strands could tell them about the cancer and how it would respond to treatment. The pathology results had finally come back, revealing that it isn't triple negative, and is only considered stage 1. He told me that the results would also tell them if I was more susceptible to different kind of cancers, which could lead to me needing more yearly cancer screenings, or possibly more surgeries. In the case of some cancer, like ovarian cancer, there isn't a good way to screen for it, so if I'm found to have a genetic strand that is likely to develop ovarian cancer, they may want to remove my ovaries and fallopian tubes. He was very interested in the fact that I have some Ashkenazi Jewish heritage, because I guess there are some very specific genetic mutations that are more prone to certain diseases. It's a very small part of my ancestry, and it's only from heresy not an actual genetic test, but it's still there. I'd be interested to know if they could tell me more about my ancestry from a blood test, but I doubt they would be looking into that kind of thing. I refuse to get a genetic test from the internet because those companies can keep and sell that information later. 

At the end of the appointment I got my blood drawn twice and was sent on my way.

The Story So Far

 It's weird; I've always had a feeling that I would get breast cancer. I just always assumed it would be later in my life, not when I'm 33. 

This "journey" started about a month ago. I guess you would call it a journey, even if it's a kind of shitty one. I'd felt a lump in my left breast several months earlier, but didn't tell my doctor about it until my annual check up. She also felt it, and she thought it was just some fibrous tissue, but wanted me to get a mammogram just to check it out. The imaging center called me the next day and made an appointment for the end of that week.

Everything moved relatively quickly at my appointment. I guess I'm used to my doctor always running a bit late (I think it's usually because she's talking to her patients, though. She's done the same for me, which I appreciate so it doesn't bother me too much). I filled out some paperwork and was asked to sit in a smaller waiting room specifically for mammogram patients. No one had really told me what to prepare for ahead of time, so I'd done some of my own research into what to expect. I didn't wear any deodorant because apparently it can mess with the mammography. I wore comfortable separates as opposed to a dress, so I could keep my pants on during the exam. They took me to a dressing room with a curtain and gave me a "gown" to put on. I use quotations, because it was more like a cape than a gown. It had one arm hole that was stitched loosely and the other side was free, and it snapped in the front. I kind of appreciate how it fit, to be honest. 

The tech walked me through everything while it was going on. There was a lot of boob maneuvering, but that is to be expected. I remember my mom telling me about it when I was a teenager and being mortified at the thought of someone seeing me half naked. I don't know if I've mellowed out since then or if it just comes with age, but it didn't really bother me. Each breast had to be lifted and placed onto a plate that was then squished with another plate in order to get the image. It was a little uncomfortable, but not unbearable. The more annoying part was having to hold my breath while the image was being taken. Overall, it was quick and painless. 

I was taken back to the dressing room and told that a radiologist would look at the images and determine if I needed an ultrasound to look closer into the lump. She told me either way, I'd get my results at the end of the appointment. I mistakenly took this to mean that I could put my clothes back on. The tech came back and laughed, told me to undress again and put the cape back on, and that I'd need to get ready for an ultrasound. I was starting to get a bit worried at this point, but kept it together. 

I was taken to the ultrasound room and asked to lay on a table while the ultrasound tech did her thing and smeared the area with jelly and moved the wand around the lump. She told me that the radiologist would be in shortly to check everything. The radiologist came in and the tech moved the wand around some more and showed some color on the screen. The radiologist asked if I could see the mass; and I could. He introduced himself, told me he'd been doing this for a long time. He said he was sorry, but this was cancer and that he'd pray for me. He then said he'd need to schedule a biopsy to officially diagnose it, and that they would leave the room to let me get dressed. To say that I was overwhelmed is an understatement. I immediately cried when they left the room and dressed as quickly as possible. The tech had asked me to come get her when I was done, but I just sat on the table and cried. She ended up coming back in to check on me and tried to comfort me while scheduling a biopsy. They apparently didn't have anything available until two weeks later, but she talked the doctor into seeing me the next week so I wouldn't have to wait as long. I left as quickly as possible and held it together until hubs pulled the car around and I explained everything to him. 

Him, his mom, and my mom were all very annoyed that I was told I have cancer before having a biopsy. I was upset for the rest of the weekend, but I'd gotten a few days off to deal with the biopsy. The same tech who did my mammogram prepped me for the biopsy. Every time she saw me looking at the ultrasound screen she would explain what they were looking at. I think her name is Nancy, and I liked her a lot. A different radiologist ended up doing the biopsy and I liked him a lot better. He didn't tell me he would pray for me, and I appreciated that. He kept it professional but personable. He has a niece named Tegan, but pronounced like "Teegan." He stuck the area with the lump with Novocain so I wouldn't feel anything. The actual extraction of tissue was done with a machine, and it was pretty loud, but not alarmingly so. The whole process went by pretty quickly and I was out of there in about two hours. 

The next week I got the call from the nicer radiologist saying that I had stage 2 Invasive Ductal Carcinoma. He asked if I wanted him to schedule a surgeon and I told him I wanted to talk to my doctor and he said that was completely fine. I called the doctor's office after and got an appointment the next day. 

Hubs came with me to the doctor's appointment. I find I like having him there as another set of ears, because I can't always process things quickly enough to ask questions I need to. He also has an audible memory and records everything on his phone, so that helps. I love my doctor, and we had a good chat about everything. I think she was worried that I was in shock because I was relatively calm, until I told her that I'd basically been told two weeks ago that I had cancer, and not the day before when the radiologist called me. She set me up with a surgeon and an oncologist that day. 

The meeting with the surgeon happened shortly after, and I was given a lot of information. Since I am young, she said I'd probably be given every treatment available, but she wasn't sure about the order since the pathology results hadn't come back from the radiologist yet (the initial results had, but not the more detailed notes). So at some point I would be getting surgery, radiation, hormone therapy, and possibly chemo. She gave me a booklet with a lot of information that I honestly haven't looked into yet. She told me about "triple negative" which would mean my genes aren't receptive to hormone treatment, and that would mean my treatment would be a little more aggressive. She told me they'd send referrals for an MRI to check my lymph nodes, to a genetic counselor, and to the oncologist. She wanted all of those done in two weeks, but as of right now I only have the genetic counselor scheduled and haven't heard from the Oncologist or about an MRI.

It's a lot of info for one post, but that is the situation so far. 

The Timeline

This page will be updated with more information when I receive it. This is meant to be an overview of my treatments and the information I receive. 

- Summer of 2020: I noticed a lump in my left breast. I kept an eye on it, knowing I would have my yearly exam in a few months. The lump stayed there, with no obvious changes. 

- November 16th, 2020: I had my yearly check up/pap/breast exam with my PCP, in which I told her about it and she felt it herself. Said she wanted me to get it checked out, even if she thought it was just benign. 

- November 20th, 2020: My first ever mammogram. Then a breast ultrasound. Then I was told I have cancer. But not "officially," only a biopsy could confirm that. The radiologist told me he would pray for me. I cried by myself in the ultrasound room.

- November 25th, 2020: My Breast biopsy. The same nurse who did my mammogram was there for my biopsy. She was very kind and explained everything to me when she saw me looking at the ultrasound as the needle was going in. She even let me look at my sample after it was done. A different radiologist than before did the extraction. I liked him a lot better. He has a niece named Tegan, but pronounced differently.

- December 1st, 2020: The radiologist called me to confirm my breast cancer diagnosis. Invasive Ductal Carcinoma.

- December 2nd, 2020: Met with my PCP again to go over a plan and who I would be meeting with. Hubs came along and she got to meet him for the first time. She said he was a cute lumberjack. 

- December 4th, 2020: My first meeting with the surgeon. We didn't have all of the genetic information back from the Pathologist, so she didn't have a definitive timeline or order of treatment for me. She told me that since I am young and this is abnormal, I would eventually get every treatment they had: surgery, radiation, pills, and chemo, but she needed more information to know which order to go in. She gave me two weeks to hopefully schedule an MRI, a meeting with the Oncologist, and a meeting with the Genetic Counselor, and they would all be calling me to schedule them. She gave me a booklet and explained what triple negative meant. I honestly don't remember what she said, but I understood at the time and I'm sure I will end up googling it later.

- December 18th, 2020: Met with the Genetic Counselor. We went over some paperwork and what could happen depending on the result of the genetic tests. They will hopefully determine if the cancer is genetic or environmental, and whether I am more susceptible to other cancers. My pathology notes came back and I am not triple negative, meaning I am more receptive to hormone therapy. Because of these circumstances, my cancer is considered stage 1 instead of the stage 2 initially thought. They drew blood for two different tests. 

- December 22nd, 2020: My first ever MRI. I understand that they are medically necessary, but holy shit I am not a fan. 

- December 29th, 2020: Second meeting with the surgeon. MRI came back, and there isn't anything in my lymph nodes or the right breast, but the tumor is bigger than originally thought, but still manageable. They still want to hear from the oncologist before we plan any surgery, but I was also referred to a plastic surgeon for a consultation. I also got a call from the genetic counselor and I am not predisposed to more breast cancer or any other cancers. 

- December 31st, 2020: Originally this was supposed to be my Oncologist appointment, but they had to reschedule -_-

- January 11th, 2021 (8am): Consultation with the Plastic Surgeon. I got to wear a tiny paper vest while the doctor awkwardly lifted my boob up to look at it. His staff members are super nice and informative, but I didn't care for him. I don't think I've ever really liked a male doctor, though. He was fine. General points: I will probs need an implant, I will probs lose the nipple, and I can definitely get a reduction on both sides.

- January 11th, 2021 (10:30am): Finally time to see the Oncologist. They just moved offices and everything is awful and unorganized. I basically waited for two hours to see the doctor and she didn't say much. We are going for surgery first, then probably chemo after unless the test results on the tumor dictate that I don't need it, but I probably will. I also got asked a lot if I have/want children, because it's possible I won't menstruate after chemo.

- January 12th, 2021: Third meeting with the surgeon. Single Mastectomy with reconstruction and a reduction on the other side.

- January 20th, 2021: Pre-Op appointment. They gave me some cloths to wipe down the surgical area the night before.

- January 25th, 2021: Surgery went well. I have two drains that I have to empty every 4 to 6 hours and I am sleeping a lot and the pain is slowly getting better. I'm having heartburn when I eat, which is annoying, but causing me to eat slower, which I guess is a good thing. The plastic surgeon also told me to do arm exercises and breathing exercises like 20 times an hour so my arm won't heal incorrectly and I won't get pneumonia.

 

- February 1, 2021: Follow-up with Plastic Surgeon. They removed the adhesives on my surgical incision as well as my drain ports. I have to deal with my drains for another week, but they refilled my pain pill prescription.

- February 8, 2021: Plastic Surgeon. Removed one of the drains, which hurt like hell. Gave me more antibiotics because the cut was pretty red.

- February 9th, 2021: Post-Op appointment with cancer surgeon. Pointless visit.  Arrived 15 minutes early and I had to wait about 45 minutes in the waiting room. When I got back there she just asked me when I'm seeing other doctors and looked at my the incision and asked what medications I'm taking. She gave me a referral for a radiation oncologist. The whole thing took three minutes and could have easily been done over the phone. She said she wanted to see me in a month. The check-out receptionist then gave me some passive aggressive service because I couldn't do an afternoon appointment exactly one month from today. Asked her to look for other days, and she continued to be passive aggressive. Saying that she's a popular doctor so there aren't more options. Like, I'm not going to rearrange my schedule for a doctor that isn't even really treating me anymore and just asks me what my other doctors are doing. 😡

- February 12th, 2021: Oncologist appointment. A more informative visit. She went over my pathology results and explained the steps to take next. She wanted to order an Oncotype test, to see if I would actually need chemotherapy or not. She said that wouldn't happen until my surgery scar is more healed, and then we would start chemo if necessary. The last step would be taking anti-estrogen pills for 10 years, including something that would jump start menopause for me. She ordered the test and I'll see her back in two weeks.

- February 15, 2021: Plastic Surgeon. My remaining drain is still draining too much fluid to warrant removing, but they said the scar is less red and looks better. 

- February 22, 2021: Plastic surgeon. My drain is still draining a lot of fluid and my scar looks a lot better, but there is still a large part that is scabbed over, and has spread out from the original incision. The plan is for him to cut that scab out and sew it together again, probably some time later this week or next week. He hopes that will speed up the healing process and the draining process, so he can begin expanding my implant on a weekly basis.

- February 24, 2021: "local procedure" at the plastic surgeon. Basically they scraped the rest of my scar out and tightened up the incision since it was sperating and sewed it back up. Took about 45 minutes and I didn't feel a thing!

- March 1st, 2021: Oncologist. I DON'T HAVE TO GET CHEMO!!!! We also talked about starting hormone therapy and several ways in which they could make me post-menapausal.

- March 1st, 2021: Plastic surgeon follow-up: I FINALLY GOT MY DRAIN OUT!!! Also, my new incision is healing up well!

- March 3rd, 2021: Radiologist. I DO NOT NEED RADIATION EITHER!!

- March 12, 2021: Plastic Surgeon. I got my first "expansion" in my temporary implant. 

- March 23, 2021: Cancer Surgeon. Not a lot happened. I tried to call ahead and get out of it, but apparently I have to follow up with this surgeon for a few years at this point. I have another follow up in 3 months. 

- March 29, 2021: Oncologist. We started shots of Zolodex to stop my periods. I have to get a shot every month, unless I decide to get my ovaries taken out at some point in the future. Next month we will start an anti-estrogen  pill. 

- April 5, 2021: Plastic Surgeon. Second injection for my tissue expander.

- April 19th, 2021: Plastic Surgeon. Third injection. 

- April 26, 2021: Oncologist. Zolodex shot and hormone therapy.

- May 5, 2021: Plastic Surgeon. Final injection before surgery.

- May 24, 2021: Oncologist. Zolodex shot.

- June 14th, 2021: Breast reconstructive surgery.

- June 21, 2021: Oncologist. Zolodex shot.

- June 29, 2021: Cancer Surgeon. 3 month follow up.