So, I haven't been on FFN for a really long time.
And I logged in last night for the first time in about a year and a half, and I found that a lot of people have been private messaging me and not getting a response. So I'm here to explain. I've seen sick. Like, really sick.
The thing about being sick is that with the exception of things like cold and flu which hit quickly and then get over with quickly, the big stuff tends to creep up on you slowly over time so that for me, anyway, at first it was just being a little more tired and thinking that maybe I needed some rest or whatever. Because I HAVE to work and I HAVE to take care of my family, writing was the thing that I could give up, even though that's very much unlike me. When you're tired and sick and completely lack energy, you may not have the energy, or even the desire to do things you used to enjoy. It's happens with depression, but it also happens with physical ailments, like, in my case, what turned out to be cancer.
When I started messaging people explaining why I'd been away, a few people said "Is there anything I can do to help?" The biggest obstacle at this point is cost, so if anyone is at all serious about offering help, one of my friends created a Go Fund Me account for me, and you can donate if you want to. The way to get there is to type zqcj8w after the DOTCOMSLASH part of their web address, or search for my last name, shulter.
Anyway, as relates to being here, it was at first sort of "I finished all my long stories and I've got a lot going on, so I guess I'll take a break" but then the inspiration for the next story never hit. I don't remember when that was. I'm sure I could figure it out by looking through my story postings, but the point is, it happened.
The next thing that happened that I noticed was a feeling that was sort of like depression. I was always tired and my mood was really lousy. I tried to improve my diet, to sleep on a more regular schedule, to exercise, get more sunlight, take vitamins, whatever. Nothing really worked.
In November 2014, I went on a vacation thinking that maybe I just needed some time away. When I got back, though, I don't think I felt any better.
In February 2015, things were really bad. I went to the doctor and asked him to run all the bloodwork he could possibly run. My regular doctor wasn't in, and the young just-out-of-med-school guy who saw me didn't take me very seriously. He felt I was just working too much and being too stressed out. He recommended a couple of over-the-counter products for some ailments I mentioned. He agreed to run the bloodwork, but when I got it back, I saw all he had run was a standard CBC. I had actually told him specifically that I felt really bad, like I was dying, in fact, and that I wanted to know what was killing me before it did. I specifically cautioned him that I'm not in the habit of being overly dramatic about my health. He didn't act any more alarmed. He told me to come back in 3-6 months if things weren't better.
I went back in 5 weeks instead. I had made lifestyle changes and nutritional changes and I wanted to see if they made a difference in my bloodwork. I got a different provider this time, but still not my regular doctor. This one recommended a mammogram. I don't know if she recommended that because she was suspecting cancer or just being thorough (or trying to be, because she missed the real problem!) The mammogram came back normal, but I felt worse, so I kept going back. I finally demanded a referral to a gastroenterologist and got one. But my regular clinic didn't call in the referral, and the specialist didn't realize my health plan allows me to self-refer, so there were delays yet again. At some point I got frustrated with the process and decided to be melodramatic with the person on the phone. I said "I need to know if I have cancer." I wasn't even that serious. I mean, I knew I had something serious, but I was expecting a diagnosis like lupus, or maybe fibromyalgia. But like I said, I decided that being melodramatic might get results. And medical personnel tend to jump when someone says "cancer."
So, April 30, 2015 I had an appointment with a gastroenterologist, and May 4, 2015 I had an endoscopy and colonoscopy. When I woke up from that, my gastroenterologist sent me immediately to a colorectal surgeon literally the same day. By the next day I had biopsy results showing squamous cell cancer and an appointment for both a PET-CT and an oncologist on May 11.
Treatment was going to be six or more weeks of chemotherapy and radiation concurrently. Chemo meant having surgery to have a port put in because they can't inject this particular type of chemo into the veins of your arms. Also, because that would affect fertility and my husband and I were planning to have a child within the next year or two, I was sent to a reproductive endocrinologist. Ultimately, the oocyte harvesting and fertilizing was unsuccessful, but through that procedure one of the doctors found something else that needed to be removed, so I had another surgery. That made five total since May 4.
It all sounded pretty routine, and the doctors were very positive. They told me that it was a curable type of cancer and that many people are even able to work during treatment. They said that most people with this type of cancer and this type of chemo don't even lose their hair. Those that do only lose part of it. They told me that one woman, a school teacher, wore the chemo port at work and her students didn't even notice anything. I went into the whole mess very positive because of all that. I posted pictures on my facebook account on June 29, the day I started chemo. The biggest worry I had at that point was wearing the little device and having clients—in particular child clients—ask about it. I didn't want to tell young people who are struggling with their own stuff that their therapist has cancer. I was glad my hair wasn't going to fall out, because maybe no one would really even notice I was sick.
It didn't work that way, though.
Within less than 24 hours of starting chemo, all the stereotypical chemo type reactions started. Think TV portrayal only much, much worse. It's the kind of nausea that doesn't go away after you vomit, and that doesn't go away after a few days. It just lasts and lasts. Radiation causes burns on the skin like sunburn only worse. I was being irradiated daily from the waist to mid-thigh. Unlike sunlight, which only burns the skin that is exposed to the sun, medical radiation penetrates all areas, including very sensitive tissue. The pain was excruciating. I probably wouldn't have been able to walk, but since I was so nauseous, I really didn't try. For almost ten weeks, life consisted entirely of my bed and the path from my bed to the bathroom.
The treatment was only supposed to be six weeks, but there were delays because I missed a day when the clinic was closed for July 4. I missed a day the follow week when I was too sick to get there. I missed another day the week after that when I was in the emergency room all day for unexpected complications. My white blood cells got as low as 1.7. They said if they got as low as 1.0 they would have to admit me to the hospital. I had to take two weeks off radiation because the burns were so bad. This delayed the end of the chemo as well, because they were supposed to be simultaneous.
When treatment finally ended, (mid August I believe, but honestly, I'm not sure) I expected to start feeling better pretty quickly, but it didn't happen. They had warned me that I was going to feel fatigued, but what I actually felt was beyond any description I had from any doctor or any other patient who had gotten the same treatment as me. By early September my heart raced and I felt winded and out of breath with any exertion at all. Doctors kept telling me "You just need to build yourself back up" but the more I tried to do that, the most exhausted I became.
On September 18th, a friend called an ambulance for me. My heart checked out okay, but they offered to take me to the hospital just in case. I elected to follow up with a cardiologist privately, but the cardiologist couldn't get me scheduled until the middle of October. On September 25, my resting heart rate was about 100 and it increased whenever I did anything. I couldn't walk more than about 10 steps without having to stop and catch my breath, even if I walked slowly. Talking exhausted me. Sitting at my desk trying to type caused me to get so winded I felt like I'd been running, and I would have to stop and catch my breath. Yes, from typing. I gave up and let myself be admitted to the hospital. They did blood work for cardiac enzymes, both an electrocardiogram and an echocardiogram, a CT scan of my chest, a sonogram of my heart, a pulmonary function test, and a CT with contrast to look for blockages. All of these procedures took four days total, so I was admitted and spent three nights there. I don't even remember most of it, because they gave me beta-blockers, and when that didn't help, they decided the problem was anxiety and gave me Xanax and Ativan, alternatingly. By day four there, though, they said that everything checked out, there was nothing wrong with me. They decided to put me on beta blockers and send me home. The beta-blockers literally did nothing. My heartrate was still ridiculously high, and I still felt like crap. The next day I tried to work, because I had to, because I can't just lie around the rest of my life and do nothing. But I felt awful. The day after that was a religious holiday, but I stayed home and lay in bed all day. When the holiday was over, I did an internet search on my phone for "How can I lower my heartrate" and told me to have my doctor check my hormone levels.
This made logical sense, because isn't that why they made all the fertility attempts with me back in May and June? But everyone seemed to have forgotten that by the end of treatment. I did a search for the symptoms of menopause and determined I had all of them. I called my ObGyn and got in the same day. It was a Thursday. I sat in his office and cried. And then I realized I'd been crying a LOT and everyone had been saying it was because I'd been "through so much" and I realized that I wasn't crying because I had cancer or because I thought I might die or because I was afraid to die, or even because I wanted to die and was probably going to live after all or anything like that. I was crying for absolutely no reason. Just one more symptom of a hormonal imbalance. Or rather, a complete lack of hormones. Yup. Everything was OFF THE CHART LOW. Whereas natural menopause takes sometimes a decade, medical menopause happens much, much faster. Since I hadn't had any organs removed, doctors didn't think about it, but you don't have to have it REMOVED you just have to have it so damaged by radiation that it fails to function.
So, my doctor prescribed some meds and I actually started feeling better within 24 hours. But, of course, he said he would take weeks to get back to feeling truly normal. That was on the 24th of September.
It's January now, and I'm still not to "normal" yet. Also, I have to have at least two more surgeries. One to biopsy and make sure there's no more cancer, and another to remove the chemo port if I'm cleared. If I NOT cleared through the biopsy, I have to make a decision to do treatment again or not. I can't imagine doing it again at this point, but you never really know what you're going to do until you do it, right?
I'll be having a CT scan a couple times a year sarcasm yay, more radiation! So, that's nice. /sarcasm
So, that's about the story for now. I won't classify myself "back to normal" until the inspiration for another long story hits, whether it's a fan fiction piece or an original piece, but I'm thinking I could start slowly, posting more drabbles and such just to get into the writing process again.
Also, I noticed that sometime after I lost the energy to write but very likely before I actually had a diagnosis, the forum that used to be located at disappeared. I checked last night just to make sure, and something else appears to have been posted there, but I'm not sure exactly what. Another thing that happened while I was out sick was that I failed to renew the website , therefore the location of the website where people were able to buy Leroux Erik plush toys is also gone. I can get that one back up and running, but it will take some time. There had been talk, long ago, of making a second plush toy, a Red Death version of Erik. I have no idea whether that is ever going to be possible, but the idea of it has not entirely left my mind. I'll get back to you down the road on that. Right now, I have to focus on working pretty hard to try to catch up from when I was off work for so many weeks and also to collect money to pay medical bills that really piled up (hence the zqcj8w account my friend set up) so please don't expect much from me in the way of stories. It will, however, be nice to read a few, perhaps, as that takes less energy than writing and posting.
Finally, if you are reading this as a long post at the end of one of my stories and happen to be following other stories and see that there are updates to them, those are just THIS post being posted there as well because each different story tends to have different followers and as such, I'm posting in all of them.
Again, sorry I've been away, and hope to be back. I miss you guys.