Today's Success: I'm Not Crazy

When people ask me how I'm doing, I usually say, "I feel nearly 100%!" Which is true. Physically, I feel great. There's no pain, hardly any discomfort, and the adhesive on the incisions have nearly faded away completely. I wish I could go swimming and work out like I mean it, but those are just some of those things that I have to trust I'm not ready for just yet.

I try to be honest sometimes and say that while I feel physically hale, emotionally, I'm kind of a wreck. Exactly one week after surgery, I started to feel melancholy. The week after that, I still felt sad and was responding to conflicts with unreasonable amounts of emotion. This past week, lots of crying and lots of loneliness. It wasn't until this past Friday that I kinda started to think that maybe my emotional excesses weren't just me being needy and lonely. Maybe there was something going on with my body.

That's when I found tons of articles about post-surgical depression. Apparently, loads of people suffer from this and it's not something surgeons warn you about. I can see why, but I wish I'd known to expect something like this. What's "this" you ask? It feels a lot like postpartum blues. I don't feel like hurting myself or others, and I don't necessarily have trouble sleeping. I'm just SAD all the time, I cry all the time, and I'm almost always fighting a growing panic/worry about the future. This also makes it very awkward for me to be in large groups because I don't know if I should be hiding my emotions and faking happiness (fake it till you make it, right?) or make everyone uncomfortable with my silent brooding. And like anxiety, I'm never sure when I'll start to feel unstable and want the safety of my own home.

So, Friday. I was crying since I woke up that morning, but at least I ate something. I made myself breakfast, sat in front of the tv to eat, and then bawled all over myself. I got up to wash dishes, I'm a weeping willow. And actually that's misleading. It sounds like I was weeping femininely into a hanky when in reality it was ugly crying. For what? I couldn't tell you. I felt lonely, for sure. I felt upset that we hadn't anticipated this isolation and planned for it. I never would have believed you, anyway, because I generally enjoy doing shit by myself.

The crying was concerning to me, and after reading a ton of articles, I finally made an appointment with Dr. Chelsea, my PCP. Charlie called her office back and made the appointment for sooner. When I saw her, she explained to me that even though I still have my ovaries and so NOT plummeting into menopause, the uterus also produces hormones that I'm no longer getting because, duh, no more uterus. In other words, I may be experiencing a sort of temporary mini-menopause that should even out over time. She asked if I was feeling hot flashes or if I was experiencing mood swings, and it's been so hot that I can't tell about the hot flashes, but most definitely on the mood swings. So, she's given me some stuff to do and some meds to take, but the best thing that happened was that she listened to me, answered my questions, and explained stuff to me. I felt heard and seen and taken seriously and I didn't feel bad about unburdening myself.

Being honest about our feelings is complicated. Do we fake? Should we be honest? Find some in-between balance? And it's easy to tell folks about physical discomfort and recovery-- no one flinches when I say my incisions still hurt or that I can't lift anything more than a few pounds or that I can't swim in the ocean for another few weeks. But many people don't know what to say in response to emotional pain, and I'm more inclined to hide it to avoid making other people feel uncomfortable. They can't tell you to take a pill or drink more water to fix the problem. Ha! But, apparently, a doctor can.

We'll see if we can nip this in the bud. I'm lucky because Charlie has also been supportive and loving and attentive. He encourages me to talk about how I feel, he reminds me that what I feel is legitimate, and he comforts me always. I'm used to (trying to) tackle challenges on my own and to feeling independent, so it's hard to need someone else. It's hard to rely on other people because they could let you down, and when you're feeling as vulnerable as I have been, another let down can do a person in. No can handle.

I ask that you be patient with me. I ask that you remember that though my body looks and feels almost the same as always, inside, I'm not so tough. Inside, I'm struggling to be that same person. Generally speaking, I'm an optimistic person: I have faith that things will get better. I believe that even now. But it's not always easy. Be patient with me.

What Lucky Feels Like: An Ode to My Sister's Kids

I am very close to my sister's kids, Sheldyn, Judah, and Shayne. I like to think that I've helped raise them since I've babysat each of them since birth and have seen them nearly every day of their lives. They choose, like today, to come over to our house even if Noah and Lucy aren't home, and they play with us or watch movies with us or help Charlie make dinner. I couldn't love them more if they were children borne of my own body.

Tonight was difficult for me because I've been feeling very lonely. In the last three weeks, I've spent many hours alone each weekday while everyone else is at work or school. Even when I leave the house, I'm usually alone. Normally, this doesn't bother me. I don't shy away from eating at restaurants by myself, and I don't need company to see a movie or go to the beach. I usually relish time alone. But this is too much, I think. Three weeks is too long to be alone. You gotta read some articles about the ineffectiveness of solitary confinement in prisons and the articles written for seniors about the dangers of spending too much time in solitude. Too much time alone can mess you up, and despite my appreciation for solitude, I enjoy hanging out with friends, especially over food.

But tonight was hard. I'd had a dream a couple of nights ago that I was at first too shame to share with even my husband. It seemed so silly. Long story short, I dreamed I was an uneaten, unwanted cake on a table. Other cakes were on the table and being chosen by people. I hadn't realized the sadness of that dream until I talked about it out loud. No longer silly, it just felt depressing.

So I was crying. I couldn't stop myself. And Shelley's kids had unexpectedly come over (which is a huge benefit of living only a minute away from each other) and were filling my house with laughter, ping pong, and lots of loud voices. Still, I couldn't stop myself. These kids are a soothing presence to me even when they're being jerk faces. Still, I couldn't stop myself from crying. Charlie, of course, was there to support me. I joke around that I'm long-suffering, but even if I am, I'm not the only one. The amazing thing, though, is that Shelley's kids supported me, too. Judah and Shayne didn't hesitate to come give me hugs-- Shayne even came back later and gave me a hug all by herself. Sheldyn, not big on affection, tidied up part of my living room.

When I'd gotten back home a few hours later from dinner with some friends, my entire living room had been tidied. I had to wake up Charlie to find out who'd done it. My nieces of course, and I had to call them immediately (despite the late hour) and thank them. I told Shayne, who is only in the second grade, that it meant a lot to me that they tried to cheer me up even though they had no idea what was bothering me. Their compassion is astounding and humbling. When they came to hug me, I was a sweaty, weepy mess, and not one of them made a comment or pulled away.

The title of this blog says I'm lucky, and I am. Tonight, the four of them surrounded me with love. That's how lucky I am-- I had four people looking out for my well being when some folks don't even have one. However, it isn't just luck. I've invested time into those three little kids. I've been invited and allowed to be a pretty damn good aunty to them, and I think I am. My own kids are awesome people, too, and I think I've been a pretty decent mom, yet there's something special about being a good aunty and having nieces and nephews who return that love back to you

How it Went Down or Ten Easy Steps to Reproductive Freedom

1. For most of my adult life, I've had heavy periods. I hate justifying to nurses and doctors (and even friends and coworkers sometimes) that I know what "heavy" is, so I'm not going to do that here. Pretty much whatever people think heavy is and then multiply that by ten. Unless you've had a transfusion because of your period, my heaviness is probably heavier than yours. And it isn't a competition, I'm just trying to establish that what I was living with was unreasonable, unhealthy, and soul-sucking.

2. In the beginning of 2017, I started keeping track of how long and bad my periods were by using a period tracking app. Thanks to Christine P. because I'd never thought of using one before, and it was pretty handy. The problem with the one I chose, however, was that there wasn't enough nuance. There were only three icons to describe heaviness, and I couldn't figure out how to determine what typical heavy was (which I experienced) and ridiculously heavy (which I also experienced). Anyway, I started keeping track because they started to get worse. They were more unpredictable: longer, shorter, early, late, start then stop then start again. I was trying to see if I could figure it out.

At some point in 2017, my gynecologist was going to put me on an IUD. He said they'd order it then call me to make an appointment to place it. Weeks went by and I hadn't heard from them, so I called back, the nurse said they'd call me back after checking on my claim, and again, no call back. I let it drop because I wasn't overly thrilled about being on birth control, even if it meant controlling my periods. I was on the pill once years ago and all I did was cry and cry.

3. By the end of December 2017, I'd been bleeding for two months straight. I called my gynecologist. He put me on a birth control pill and put in an order for another IUD. It takes a while for them to order it, then the pharmacy calls to verify everything, it gets sent to the doctor, and then you gotta make an appointment for it to be inserted. Long process. In the meantime, I was still bleeding heavily and was diagnosed anemic. By my internist, not my gynecologist. Because yes, I was seeing her about this same issue, too. In fact, she'd diagnosed me anemic long before I first saw her about my period problems, but didn't know the cause at that time. So, my numbers were dismal. In August 2017, my hemoglobin was 9.5 (normal values between 11.2-15.7, according to the lab results). In January 2017, it was 8.5, and most recently last month was back up to 9.5.

4. The anemia sucked. I know some of you are/have been anemic. I was tired, short of breath all the time, suffered muscle weakness and cramps, was cold and pale. I couldn't think clearly, I couldn't focus, couldn't remember the names of things. Walking to the bus stop, I was breathing heavily, and whenever I stood up, I was light-headed and faint. Once, I went to Ala Moana Shopping Center with my mom and Lucy. We were only in Macys for less than an hour and I told my mom I had to go home. I was shivering and light-headed and was afraid I'd faint. And it wasn't easy to build up my iron stores when I was continuously bleeding. I was taking multiple iron supplements and a multi-vitamin daily, in addition to eating iron rich foods (red meat, mussels, clams, mushrooms, and dark leafy greens, etc.) and avoiding caffeinated drinks like coffee. In fact, I'm so used to avoiding coffee that I've only had three cups of coffee since my surgery. I just forget that I can drink it now.

5. So, the first IUD finally gets put in. I go back a couple of weeks later for a follow-up, but my gynecologist can't find it. He does an ultrasound right then and there, and it's still eludes him. He schedules another ultrasound at Queens, and they don't find it. It's concluded that my body expelled the IUD. I'm unwilling to give up, so I ask him if we can try again, and we do. In the meantime, I continue with the birth control pills (which do nothing, by the way, in terms of regulating my flow) until the new IUD comes in. This time, I actually catch the IUD as my body expels it a few days later.

Backing up a bit, my doctor expects that the IUD will eventually regulate my period. He says that after I get my next period, I need to call him immediately because he wanted me to get another ultrasound sometime between days four and seven of my cycle. He says that an ultrasound on those days will give him the best picture if I have any fibroids or other anomalies, I guess. I never make that call because I never stop bleeding.

6. My gynecologist recommends the Nexplanon implant. He doesn't do that procedure, but another doctor in their practice does it for me. That doctor seems unsurprised that I've expelled two IUDs because of my history of heavy flows (see? THAT'S how heavy. Didn't even notice, couldn't even feel two IUDs leave my body). His opinion is that the Nexplanon won't actually work because he thinks fibroids are to blame for my problems and the implant won't affect the fibroids. But I'm willing to try anything at this point. Again, there's a waiting period in which the pharmacy calls me, they send the device to the doctor, and we make an appointment for insertion. This doctor changes my appointment time TWICE and insertion is delayed by weeks.

7. Not too long after the Nexplanon is inserted, I begin a new period. At the worst part of it, I'm changing a pad AND tampon at least every 20 minutes, and experiencing pelvic pain and bloating. I could be at work or out with family and friends or at someone's house or whatever and have to go to the bathroom every 15-20 minutes. So I would avoid doing anything I didn't actually have to do. I remember when I told Meredith I couldn't go to foam rolling class with her. I'd declined other invitations before with half-truths (we're doing family night, I have to do something else, blah blah blah), but I felt bad. I didn't want her to stop inviting me, so I told her the truth. I said that I was afraid to go because I was bleeding heavily and that foam rolling seemed like wringing a wet rag dry. I pretty much avoided the beach-- a usual place of refuge, if you recall.

8. That last period was in August. I tried to see my gynecologist, but the first nurse never even recorded that I called, let alone expected a call back (as told to me by the second nurse I spoke to at the end of the day). But my internist squeezed me in the next day and ran labs. Low hemoglobin again, of course.

9. About a week later, I go back to see my gynecologist. He finally says those beautiful words, "Let's do the hysterectomy." I wanted to weep. I wanted it that very day! But because he doesn't do the robotic surgery, he refers me to another doctor in the practice. This requires more time for a consultation and examination. It's this doctor that finally does the biopsy, which wasn't even on my own radar. The biopsy was pretty uncomfortable. It wasn't as bad as I remember the foley catheter being-- I had tears for the foley, but nothing but gasps and squeezed eyes for the biopsy. The results, he reported, was that the cells were precancerous. Good thing I was getting the hysterectomy, he said, because that's what we would have done, anyway.

10. The hysterectomy should have only lasted three hours, but it took five. Charlie says not only did no one communicate to him why it was taking so long, the staff was actually rude to him. Surgery went long because of the C-section scarring, but otherwise it was successful. I was home by 5pm the same day. I slept a lot. Charlie and the kids took good care of me, feeding me healthy and appropriate meals, keeping my water cup filled and fresh, bringing me my meds (ibuprofen and stool softener) on time. I needed help standing up, sitting down, and walking at first, but the pain and discomfort wasn't nearly as bad as I'd expected. Today, just shy of two weeks post-op, I feel almost normal. I've actually slept lying down two nights in a row, I went out all day yesterday ALONE, and even the itching around my incisions has subsided. I get very tired going out, I can't wear most of my clothes yet because it squeezes and rubs the surgery site, but I've stopped taking all meds. Oh, and I can't carry, push, or pull anything over ten pounds still. At least I'm pooping, though. Hallelujah for that.

There were times in the last year when the bleeding wasn't terrible. It was like white noise in the background. I wasn't anemic during those times and I could do most of what I wanted, like work out vigorously and spend the day at the mall. But I also still felt during the best of times this tiredness and grogginess that wasn't necessarily always physical. I couldn't be motivated to tidy up, for example. I couldn't make the effort for the tiniest of tasks.

I'm sure some of you shake your head at me sharing this information so publicly like it's gross. A gross overshare. The reason I share is because my experiences resonate with others, as evidenced by the many women who have shared with me their own similar experiences. Bleeding constantly for a year AND bleeding ridiculously heavy for large portions of a year takes a hard toll. The physical limitations and discomforts I can handle, but the emotional and psychological challenges are great. Again, if I hadn't had the hysterectomy scheduled for the day after my period started (which was only a couple of weeks after my last period), I would have despaired. I don't know what that would have looked like. It is depressing. Your whole life revolves around bleeding. You plan when you bathe, sleep, leave the house around it. You plan your outfit down to the underwear. There are clothes, mostly shorts and pants, that I haven't worn in months because I was afraid of a leak.

Don't worry. I'm not gonna get on my soapbox this time. I just wanted to provide a brief record of what I went through. For those of you who think this is an overshare probably aren't reading this far anyway, but I'd kick you if I could for your opinion. Women are made to feel shame about their periods. We aren't encouraged to talk about it, we hide the fact that we're bleeding, we discreetly put our pads and/or tampons in our pockets or a cute bag when we go to change, and we're mortified at the slightest leak. This is normal. So normal that we don't even question it.

Whoops, sorry. I said I wasn't going to do that. I'm just saying that it's difficult for many women to talk about what's going on with their bodies because we are constantly being encouraged to shut up about it. And even though that encouragement is not always mean spirited, it's still a silencing. Ugh, I'm killing me. I sound like my sharing is a fricken act of martyrdom. Please understand that I don't take myself that seriously.

Anyway, I hope this helps someone. Even if it doesn't, it helps me to remember. My journey isn't pau yet. We don't know what can happen, and life can change in an instant. If anyone wants to talk about their challenges and journey, feel free to send me a private message or text or email. If you just need someone to vent to, I believe I'm a sympathetic ear, go ahead and vent. If you are despairing, I've been there, too.

Finally, I have an appointment tomorrow to get the Nexplanon removed from my arm. I believe it's making me an emotional wreck. Despite overcoming these obstacles, I find myself sad all the time, and it's getting harder and harder to fight that back even knowing that the birth control is likely playing with me. I hope that its removal will mean an improvement in my emotional well being. I just want to feel okay again. I want to feel like myself again. I'm ready to be healthy and active and happy.

My Strange Relationship with Cancer

I began writing another blog all about my surgery and recovery, and maybe I'll actually finish it. You probably won't be interested, but it'll be a great record of history for me and possibly my daughter. Because mine isn't simply a heritage of heavy menstrual bleeding, fibroids, and endometriosis, it's a heritage of cancer.

My doctors so nonchalantly spoke to each other and to me about my grade 1 endometrial cancer that I  didn't realize at first that they were saying I had cancer. Writing that out just now put a lump in my throat, and I have to wonder if the Nexplanon implant is amping up my emotions. Anyway. They were so casual about it even as they said it was a good thing I'd already decided to do the surgery and that I wouldn't need to follow up with chemotherapy or radiation. Jenna was the one who broke it to me. "Grade 1 IS cancer!"

Prior to the surgery, my surgeon (who is not my usual gynecologist) did a biopsy. He called me a few days later to report that they were precancerous cells. I was at work at the Theatre and couldn't talk so I Googled. I wasn't worried. And when my surgeon reminded me again post-op that it was a good thing I'd had the hysterectomy and that I wouldn't need further treatment, I still didn't get it. I was very groggy and in pain.

Then I had my first post-op appointment yesterday. My surgeon and my usual gynecologist were talking about the extensive internal scarring from my C-sections ("Who did your surgeries," he demanded. "It's no wonder you had pain!"). The scarring made it one of the most difficult surgeries he's performed, he informed me, and it took at least an hour to get past it. He even showed me a picture, which I didn't understand because I have no frame of reference. And then my surgeon told my doctor about the grade 1 endometrial cancer that got cut out with my uterus. They nodded and said what a good decision it was, and I still didn't get it.

Apparently, I dodged a bullet. I had cancer and no longer have it because the offending organ was already removed. My feelings and thoughts about this are complicated. Because I didn't have to live with cancer or fight it or mull over the rest of my life for weeks, months, years at a time. I didn't have to struggle with it. It almost feels as if it never even happened. Obviously, I didn't even know I had it after the doctors had told me about it!

Both Charlie and Beth have said that it was a good thing I took my troubles seriously. There were times in the last year that I hadn't heard back from my gynecologist's office for weeks. And I always say that I've been living with this for the last year, but it has really been much of my life and got progressively worse in the last couple of years. It was only last November when I bled for two months that I finally said something must really be wrong. What might have happened if I did nothing?

But it isn't really about cancer. That didn't motivate me. The emotional and physical toll of bleeding so heavily and fighting so hard to build up my iron stores to stave off anemia and blood transfusions were what guided me. I couldn't live like that indefinitely. In fact, I had just gotten my period AGAIN the day before my surgery, and I swear if I hadn't had that hysterectomy on the calendar, I likely would have despaired.

So I don't know what I'm supposed to think or feel about this cancer I didn't know I had. If you look it up, my grade 1 endometrial cancer (which can take many different forms, and at the time that I'm writing this, I don't know what mine was) was not likely to metastasize. It wasn't an aggressive thing. I know startlingly little about what my condition was and how this will affect me in the future. It came and went, and I didn't have to grieve or worry or think about treatment. And at the same time I wonder why none of my doctors thought to do the biopsy. How much trouble might I have been saved? Why didn't any of my doctors (and, not including the surgeon, I saw two Ob/Gyns and my internist) think to do the biopsy sooner?

I have friends and family who have fought and lived through cancer diagnoses and treatment. I have been fearful for them and thrilled for them. I respected them for what they had to endure. For their strength and even their weaknesses and for their continued struggles for wellness despite their fears. That was not me. I feel a fraud. I have no claim to my disease if I didn't even know it existed. It's just weird.

Anyway, I've shared this story with my family. My sisters and their daughters need to know. I didn't know how to tell my friends or if I even should tell them. And maybe I made the wrong decision, especially since I don't have all the information right now. I'm going back on Friday to get that damn Nexplanon removed, hallelujah! I'll ask then. But writing is thinking and I've got nothing but time to think (thus my intense desire to not be at home today, and yet here I am, writing this blog). Maybe you'll have insight you'd like to share with me, in which case, please do. I don't want sympathy, though, because I don't deserve it. I'm good already and I didn't suffer. I'm gonna go distract myself with yet another activity that will take me outside of my house and hopefully outside of my brain.