#but it almost makes me want to ask for the imaging from my uterine/ovary ultrasound from 2021; my insurance wouldn't authorize my $40k

[reinemichele]

Well. I think I'll talk about my kidney cysts another day, I'm still really frustrated with my insurance but I'm trying to be patient and not catastrophize about what all could be wrong since it could be just a week or 2 before my doctor/insurance works out a way to get the CT scan authorized

Anyway, I have my labs tomorrow, and I really don't feel well (pain + exhaustion + nausea) but I don't want to reschedule them again, both because I know I'll just also not feel well next week, and because maybe the lab results would help provide more justification for the CT scan to be authorized, but

You know?

[heal-thy-health]

Bloody hell.

Bloody hell. Literally what I feel like I’m living in most days - a bloody hell.

I miss thinking it was bad bleeding for a week straight once a month, now I would take that any day. Heck, I’d even take two weeks a month, because after you’ve been bleeding for 6 months straight - with one or two days off a month - you kinda get over it. And by kinda I mean you REALLY get over it.

Incredibly I’m not anaemic (yet), much to my doctor’s surprise. Although the bleeding has been getting worse lately and my symptoms seem to be getting out of hand.

Rewind to December 2019 when I first visited the doctor about said problem. I had been for almost two months straight at this point, so I was like “hmmm okay, maybe it’s time to get that checked out”. This is not the first time that I’ve been through something like this, so I brushed it off for far too long. As did the doctor. She told me that this was most likely due to my PCOS and my weight, and said that if I lost weight it would probably go away. I was not leaving that office without a referral to get an ultrasound, so I requested one and she said that it ‘probably wasn’t necessary’ but she would give me one anyway.

Fast forward a week to the morning I went in to get the ultrasound done. I was instructed to drink 1 litre of water and hold it for an hour prior to the appointment. If you’ve ever had to do this, you know how hard this can be. Especially travelling to the imaging centre, where I nearly pissed myself every time I went over a bump. I arrived and checked in, and the receptionist asked me to sit in the waiting area and told me that I would be seen to shortly. 20 excruciatingly long minutes later, the sonographer called my name and I waddled into the examination room, trying so hard to hold myself (well, my bladder) together.

The sonographer was a woman, and she had the most kind voice which so I instantly felt comfortable around her. I quickly explained what was going on, and she proceeded to start the pelvic ultrasound. Once she had taken all the images she needed, she finally let me go to the toilet. Gosh that was a satisfying feeling. I re-entered the room where she told me to hop back onto the bed as it was time for the transvaginal ultrasound. “Shit” I thought, “glad I shaved”. As if that was my biggest worry at the time.

In went the ultrasound wand. “This is the most action I’ve had in months” I nearly said, although I’m sure that would’ve made her as uncomfortable as I was in the moment, so I shut my mouth. She began asking me questions, which was a welcomed distraction. I explained to her that I had been diagnosed with PCOS when I was about 18, and that I had been living with irregular periods since they first started. I also told her that I had been diagnosed with uterine fibroids in the past but it had never been this bad.

Then came the burning question, the one that makes my stomach sink every time I’m asked it, “do you have kids?”. “No” I said, “I wish”. I really was wishing. Every single day since we began trying, and every single day prior to that for many years. I’ve always wanted to be a mother. Anyone who knows me knows how much I love children and how much I yearn to have my own.

We began trying in on July 29, 2019. The fact that I know the exact date off the top of my head should tell you how invested in this I am. Given my history, I knew it wasn’t going to be an easy stunt to get pregnant. I had not had a period for over a year when we began trying, and two months later I started one that never actually ended. I still held hope that this would happen naturally.

The sonographer kept probing me (with questions AND the ultrasound wand) until she had kind of stumbled over what could potentially be causing my incessant bleeding. “The lining of your uterus is VERY thick” she said, “how long did you say you’ve been bleeding for again?”. “Around two months” I replied, “why’s that?” She proceeded to tell me that I had what looks like endometrial hyperplasia, a condition that she personally had never seen in someone my age; a condition that normally doesn’t affect woman under the age of 40. Of course I did. Of course at 24 I was the freak who had something like this. She kept moving the wand around, taking pictures of my fucked up insides. She then moved it to examine my ovaries. “You’ve got over 30 cysts on each ovary and they’re measuring at about 4x the size that they normally should”. “Love that for me” I said, trying to shake off the feeling that I was about to get even more bad news.

Once the ultrasound was over, she had a quick chat to me about my fertility issues. She said that by the condition of my ovaries and uterus, conceiving naturally was probably going to be impossible for me and gave me the name of an IVF clinic in Sydney that bulk billed. She suggested that I think about it and try to get a referral from my doctor to go there.

I got dressed and left the office, ready to go to work. I didn’t know what to think or what to say. I knew something was wrong, but I didn’t know just how wrong yet.

I called my mum to let her know what was going on and burst into tears. My heart was breaking at the thought of being unable to have kids. Even though it wasn’t actually said, I knew that I most likely wouldn’t even be able to carry a baby with the state that my uterus was in. I hung up the phone and called my boss, again bursting into tears, and she told me to have the day off and go home to rest.

That day was hard, but little did I know that things were about to get a lot harder.

[notaddictedtocoffee]

Make You Better

This is a difficult picture for me to share. Six months ago I had major abdominal surgery that left an 8-inch scar from my pubic bone to just above my belly button. It’s now a keloid scar and I really hate it. So why share it? Because the healing capacity of the body is amazing and I need to remember that. I may not love my scar–I may even try to get it removed someday–but for now I’d like to like my new body just as it is, scars and all. And for me, showing it off and telling my story is part of my healing.

A little over a year ago I made an appointment with my gynecologist because something didn’t feel right with my body. I’m well attuned. In the last few years I’ve had abnormal pap smears, ovarian cysts, and irregular menstrual cycles. It’s not unusual for me to pop into the doctor’s office when I feel something is up. This time I was certain that something had gone terribly wrong with my IUD. You read the horror stories of these devices migrating or causing infections that need to be taken care of ASAP.  So I went in and told the doctor my symptoms: extreme cramping when I normally have little to none, spotting, a particular pain on the left side of my abdominal, and bloating. Some of you may be thinking those are normal symptoms for any woman on her period. But like I said, I know my body and this had been going on for a few weeks (the bloating for a few months) and it was NOT normal for me. The doctor did an exam and saw that my IUD was fine and that everything else looked normal. I thought, “Great! I’m just overreacting.” But she decided to give me a sonogram while I was in there just in case.

I fully expected the technician to tell me there was nothing wrong and to send me on my way. But as I lay on the table, I could tell something was wrong. She didn’t say anything. That was the first clue. Then she started asking about my left side. Finally, she told me that it looked like there was a large mass on my left ovary and that she was concerned about it and recommended that I go and get a fluid-contrast ultrasound with a specialist as soon as possible. Two hours later I was getting my second ultrasound of the day. I can remember standing on a street in Soho crying on the phone to my mom, feeling completely alone, on my way to the second appointment.

Walking into this new location for my second sonogram was a completely different experience from my first. The waiting room had about three other women in their late 40’s waiting for similar tests to be done and they were all scared. This is the place you go when scary shit happens. Of course, you don’t receive results right away. After the specialist confirmed that there was in fact a very large mass, he told me he couldn’t give me a diagnosis. I was going to have to wait about a week before the doctor would be getting in contact with me and, of course, I was planning on being out of the country and basically unreachable by that time. So two weeks of worry before I’d hear anything.

When I met with my gynecologist, she told me that the mass was a large uterine fibroid–a muscular tumor on the uterus that’s almost always noncancerous– that would need to be removed. But because she didn’t do those kinds of surgeries, she’d have to send me to one of her colleagues. So I met with the new doctor and found out that I had two options with a fibroid this size: a myomectomy, which opens up the abdomen horizontally to remove it or a laparoscopic myomectomy, which is much less invasive by using a robot to go in two small places in my abdomen and cutting up the fibroid inside of me to remove it piece by piece. This seemed like a no brainer—the less invasive option. BUT the laparoscopic surgery did come with a caveat. Although they didn’t think it was cancerous and would do everything they could to determine whether it was benign, there was no guarantee that the fibroid wasn’t cancerous until the inside of the fibroid was tested. Meaning, that if it did turn out to be cancerous, once they cut it up inside me it would spread the cancer all over the place. Though rare, it does happen. And this surgeon didn’t perform laparoscopic surgery, so I’d have to be referred to yet another surgeon. I agreed to meet with the other surgeon, who I couldn’t see for another month and a half, and she was awesome. She told me that I was definitely going to have laparoscopic surgery and we scheduled it. For personal reasons, I pushed the surgery until August and because the fibroid was not an immediate concern, my surgeon was okay with that. I had to have an MRI and an endometrial biopsy before surgery as a final step in testing for cancer.

I took myself to my surgery. Alone. These are the times that you remember how hard it is living across the country and away from all your family. Sure, if I had asked, a friend would have taken me. In fact, a friend picked me up and brought me all the way back to Brooklyn. But it was still a very lonely experience. If I had been home, there would have been a whole roomful of family members with me. And hours later when I woke up, my surgeon came in and told me that the fibroid was still inside of me because it was much larger than expected and didn’t look like a fibroid. The gynecological oncologist who happened to be on call that day came in to take a look at the mass while I was in surgery and agreed that more testing should be done before they removed it. He would eventually become my new surgeon simply because he was on call that day and already looked at my fibroid. I had no choice in the matter and was told that if I wanted a new surgeon I’d have to go to a different hospital. I was left with a large mass still inside me, bruising from my rib cage to my pelvis, and a surgeon I didn’t particularly like.

Step one was to schedule the surgery. The end of September was the earliest I could get in and I’d need a biopsy, which consisted of a 10-inch needle going straight through my abdomen–while I was awake–to take a specimen. This came back inconclusive but left me with yet another large bruise on my abdomen. Next came another biopsy and a CT scan. The second biopsy also came back inconclusive. The results for the CT scan were maybe the scariest I’ve ever been through. My boyfriend sat and held my hand as my surgeon showed us images of a suspicious shadow on my liver. Basically, with this large mass that already had two inconclusive biopsies and something on my liver, if it were cancerous, it would likely be Stage III. I’d need another MRI to get a better look at my liver. And my surgery was postponed.

Since the first two biopsies weren’t showing anything definitive, I was sent to a gastroenterologist for an endoscopic biopsy. There was a time when saying, I have a biopsy this week was just normal conversation for me. But I finally got a benign result this time and the MRI showed that my liver was fine and we could move forward with the surgery.

At this point, because of the position of the fibroid, my surgeon thought he was going to have to take out my left ovary. I had to sign paperwork giving my surgeon permission to remove the ovary as well as a full hysterectomy if he got in there and it was worse than expected. And because of the large size (it had grown quite a bit since my first MRI) and placement of the fibroid, he would have to go in with a vertical cut instead of a horizontal one. I had a lot of stress and uncertainty going into the surgery, but it went as well as it could go. The mass was removed and tested—came back benign! But I had numbness in my right thigh from the surgery that my doctor reassured me would go away in a couple of weeks. Because of the numbness, I had no strength in my leg and I fell twice while in recovery at the hospital. I had exceptionally bad nurses who left giant bruises on my arms and wouldn’t take me to the bathroom for hours after I had asked them. I had trouble walking up and down stairs because of the leg and I had to go back for a follow-up with my surgeon a week after the surgery. In hindsight, I definitely should have taken a cab. I didn’t. I took the subway, stairs and all, all the way from Brooklyn to Manhattan, and then I fell about one block from my doctor’s office. This was not the last of my falls. And I still have the numbness in my leg that my surgeon now tells me I’ll likely always have.

Every biopsy was done at the hospital as an outpatient procedure and every doctor’s appointment was at an oncologist’s office. So on top of feeling completely out of control with what was happening with my body, I was entering these waiting rooms full of cancer patients, all much older than I was. It was scary. And I went to almost every appointment alone. I’ll admit that I isolated myself a bit even though I had support through my boyfriend and my friends. It’s a different feeling from having family available to you though. I always felt like I was being a burden asking for help.

My sister flew to New York from Washington twice. She had already booked a flight when my surgery got rescheduled, so we had a fun weekend together and then two weeks later she came back for the actual surgery. She wasn’t able to stay as long as the first time and help me after the surgery, but she still came. She also kept everyone in my extended family informed about what was going on because I just couldn’t deal with telling one more person what was happening to my body. I had friends picking me up from the hospital, taking care of my dog Ginger, bringing me Kool-Aid and candy just because I asked. And I had my sweet, understanding boyfriend who stayed with me, took care of me after the surgery, gently suggested that I maybe wait to take a shower until he got home from work so that I didn’t slip and hurt myself while I was alone, put up with my being sick from the pain meds, and was an all-around rock star. He put up with my crying and moodiness, all while telling me how great I was doing. No doubt, he and my sister took the brunt of my obnoxious behavior leading up to the surgery.

Just before Thanksgiving I was finally persuaded to get evaluated for physical therapy because of the weakness in my right leg. It would be another month and a half before I’d start physical therapy, women’s health therapy, and mental health therapy—all at the same time. Physical therapy and women’s health therapy went great. I exceeded my PT’s expectations and after a few months I was able to stop going. Mental health therapy was a different story. I was diagnosed with severe depression and minor anxiety. It’s something that I’ve been ashamed of even though everyone I’ve told has been supportive. I think that a large part of it is that there’s still a stigma attached to depression and I also feel like I shouldn’t be depressed. I don’t have cancer, I have all of my reproductive organs; overall, I’m very healthy now. What do I have to be depressed about?

I’ve been seeing my therapist for about three months now and she’s helped me feel more okay about my depression and helped me realize that I’ve been through a lot physically and emotionally in the last year, and it’s okay that I’m depressed. I had a cancer scare. My body was poked and prodded for months. I had very little control of what happened to me. And the fibroid could come back. For a long time it was all I could do not to cry about every little thing. Something small could send me into a tailspin of the blues in a second. I’ve struggled with motivation, social activities, and just being positive about pretty much anything.

I recently found out that on top of the depression, I have a pretty bad iron deficiency, which can cause extreme fatigue, irritability, and mood swings. I’ve essentially been a monster to be around with both the iron deficiency and depression. One of the worst feelings is knowing your depression is difficult for your loved ones and not being able to do anything about it. But I just started taking antidepressants a couple weeks ago along with iron and I can’t believe how much better I feel. I’ve felt so terrible for so long that I forgot what my normal feels like. I’m not saying I’m magically better or don’t have my lows anymore. Because I do. But it’s like carrying several heavy, cumbersome items and someone suddenly handing you a bag to use. It’s still heavy to carry, but it’s much more manageable. I’ve also started going to the gym regularly and taking yoga classes. Exercise has always helped me manage my depression in the past and it’s definitely helping my recovery now. I know I’m still going to have ups and downs, but for the first time in a long time I feel like I’m starting to be okay again.

WARNING: This next picture is of my fibroid and it is gross. Stop now if you will be forever in emotional distress by viewing it.

I did warn you.

About Today by The National

Make You Better by The Decemberists