Before I begin, a word of caution. If talk of gastrointestinal distress grosses you out, or you don't want to think about mine, turn back now. I will be as discrete as possible but, this is a story of elimination. After all, everybody poops.
If you follow me on Facebook, you've probably noticed I'm not myself lately. Yes, there is something wrong. I've been vague, because I haven't wanted to talk about it, and because it's a lot. I had thought it would all be over in February, but little did I know one last thing would pop up that would send me into the worst and longest lasting panic of my life. Never had I been so certain that the big bad C had come for me at last as I had in the last few weeks. I said a week or two ago, it hasn't gone back to bed yet, but it's in its room. Now, it hasn't gone to sleep yet, but at least it's back in bed. So what exactly happened? Let me take you back to about last September.
If you follow me on Facebook you also know a lot has changed for me in the last 5 years. I've remarried to a wonderful man named Jon. He has two daughters from a previous marriage, I have Eva, and together we have Amelia. My dear husband has a chronic health issue. It is not mine to share, so I will not. But if you know us, you probably know. It can potentially be serious, but in his case is well managed. It is not life shortening, but can have eventual complications. So there's that. About last September, his well controlled condition popped up a routine flare. A short course of medicine put it back in check, or so we thought. Little did I know it was only the beginning.
We welcomed October by taking a family trip. Jon, his youngest, myself, and Amelia, all went to Niagara Falls. His oldest is in college, and we assumed Eva would have more fun playing with her grandparents. We had a great time! Though Amelia struggles with sleeping away from home, she started developing cold symptoms, and on the last day Jon woke up feeling lousy. Another flare up? Perhaps, but he had cold symptoms as well. The following weekend, we were all down with it. It was just a cold, right? Well, why am I having sudden urges to run to the bathroom, now? That's not a cold. Uh oh.
Oh yes. We ALL had COVID-19. All of us except Eva, who we assume was the first of us with it and had already passed it. It passed us all reasonably uneventfully, but not without me having panic attacks about potentially infecting people. Thankfully, to my knowledge, all remained well. Aaaand that's where my anxiety began running wild.
Well, COVID triggered another flare up for Jon. Which brings us now to November. I saw a spot of red on his face and wondered if he had cut himself. No, he said, that spot has been there a while, but it was annoying him so he scrubbed his face pretty good. Huh. I didn't like that. So I did the worst thing one could possibly do and hit the Google. It came up with all manner of things but what did my eyes immediately hone in on? Amelanotic melanoma.
Melanoma, you say? Isn't that usually black? Well, yes. But not always. In rare cases it can be skin colored, or, RED. Absolutely nothing in the world could talk me down at that point, until he went to see his doctor. She confirmed that it was a benign spot, but, it was something that if left untreated, in 10% of the population, it can turn into non-melanoma skin cancer.
WHAT???? Well, she's not a dermatologist, how does she know it's not? Did she biopsy it? Did she look at it under magnification? She froze it, but what if it doesn't respond? Does that mean it's turned? How long does it take for it to turn? And this is how my mind runs. 24 hours a day, 7 days a week. Well, this ruined my birthday. I spent the entire day in a panic because I was convinced it had turned. And he had a second spot that I saw, that they didn't talk about. And now he has a sinus infection. Would he PLEASE go back to his doctor? He did, and I tagged along.
I did ask my questions of the PA we saw. I felt better, he said there was no risk in waiting until he could see the dermatologist (in freaking FEBRUARY), he sees no reason to believe it's anything malignant. Okay. So I'm able to put it away for a while. Christmas comes, Christmas goes. And the day after is where my fun begins.
I woke up in... we will just say gastrointestinal distress. To keep it brief and minimize the TMI, the bathroom became my bestie. After 4 days, I went and saw my doctor. As quickly as it started, it stopped. I carried on with my life. Immediately after that Eva got the flu and was vomiting for 4 days straight. THAT was fun, but we got a quick diagnosis of influenza and started managing it. Then as the end of January approached, with Jesse's anniversary looming, I'm in the shower washing and found a tiny lump on my rear end. Something I'd never noticed before. I didn't think much of it, pimples happen even on our bottoms, and I moved on. A few days later I decided I better check to see if it's still there. It was. So I decided I better try to set up a mirror to look at the thing. Aaaand it's brown,
Insert new melanoma panic attack here.
I instantly called dermatology and told them what I found. They didn't have an opening for 3 weeks. Well, that of course will not do with my anxiety. So I called my doctor, and she could get me in 2 days later. That's more like it! And she has never misdiagnosed me, in over 20 years of being her patient. So my day comes, she looks it over, she magnifies it, she measures it, and she says, well, it's perfectly round with an even border, and it's tiny. Only 3 mm. But it's new, and there's a small discoloration to it. So don't hit the panic button (too late) but it's still worth seeing a dermatologist for it.
That went over about as well as you can expect. She gave me her assurance that she didn't believe it to be melanoma, but what if this was the time she was wrong? On a hunch from my psychologist I started looking to see if anyone in Rochester did self-schedule appointments. I don't want to make a hundred phone calls only to be told they had nothing for 2 months. I found one, who had been with the hospital system for years, and just opened her own practice. She had a spot open, at 9:00 on Jesse's anniversary.
I'm not terribly superstitious, but this instantly put up my flags. Was this a good sign or a bad one? Well, I couldn't wait another 2 weeks for an answer, so I took it. I burst into tears in her office and explained about my anxiety and my history. She didn't waste time or mince words, she took one look and said "That looks like a common mole to me! But in my patients with anxiety sometimes they feel better if we remove it and biopsy it any-" YES!! She didn't even have the whole phrase out. So it was removed, and biopsied, and is normal. So now, we just have Jon's long awaited appointment and then my anxiety can settle, right??
Guess again, girl friend.
Valentine's night. I went to bed feeling perfectly fine. Wednesday morning I wake up with the same intestinal distress I'd had the day after Christmas. I braced myself for another 4 days of fun, cursing the fact that I'd caught the stomach bug again. But then day 5 came and I wasn't better. Then 6. Jon encouraged me to call my doctor. I felt stupid. Surely it would pass? It didn't. I started losing weight because I couldn't eat.
Uh oh.
And now my anxiety is awake again. Could I have colon cancer? Again the worst thing you can do is the exact thing I did. Hello, Google. The one thing I was clinging to is that there was no blood. I assumed as well that symptoms wouldn't pop up out of nowhere, but then Google says, sudden changes. Well, my doctor ran some tests. Looking for common infections, parasites, bacteria. All negative. A week became two. Now I'm emailing my psych in tears because I just can't stop the intrusive thoughts. Jon is concerned because it's consuming me. (He isn't wrong) But I can't stop it. Once it starts, trying to stop those thoughts is about as easy as telling the Niagara River to stop falling. I have no control. And that's what I'm trying to work on with my psych.
Finally after the 2 week mark I see my doctor again. The queasiness has passed and the weight I lost is coming back. (The first time ever in my life I'm HAPPY to be gaining weight) I'm having a normal day every once in a while. My doctor has a theory that I have either IBS or IBD. It's also not lost on either of us that both of these attacks started within days of my lady time. But why won't this one quit? So, she sent me to a gastroenterologist for more tests. She and the gastro both confirmed, my symptoms DO NOT line up with colon cancer and the gastro is so certain of that, she will not order me a colonoscopy unless any of my tests turn up abnormal. She even ordered one they usually reserve for patients recovering from cancer, because it can detect certain signatures of tumors in the blood.
All tests returned normal, except that my potassium is low. Not surprising considering the circumstances. And now my leg cramps when I try to exercise are also explained! Now I seem to be having one day of semi-normal, and one day of semi-distress. The tentative diagnosis is IBS, though I'm not done with doctors until I have a confirmed diagnosis and a plan of action rather than "just take some Imodium".
While all of this is going on, I'm dealing with finishing my second bachelors, in computer science. Scrambling to finish my last project by the deadline. And, I've been having pain in my hands and shoulders since the summer. The shoulder is a strained rotator cuff. Orthopedist suspects it's due to the size of my chest. Good news for me in trying to get the insurance company to pony up and pay to have them reduced! My hands, well, I've had several trigger fingers which is a form of tenosynovitis. Why it keeps happening, we don't know. Is it related to my bowel issues? I would be surprised, but stranger things have happened.
This has been my life, since the end of the summer. I am exhausted. I'm not my usual sunshiney self. I haven't been cooking or baking, which has become a major component of who I am. And it's because my mental health has been taking one hit after another for months. It would be easy to just tell myself to stop. And I wish I could! But I am officially diagnosed with PTSD because of what I went through with Jesse. I was predisposed to mental health and anxiety problems before, and this has made it so much worse. I've dabbled with a variety of medications with a varying degree of help, and side effects, and we're still looking for the answer. My psychologist and I are starting work on cognitive processing therapy to try to help me when those thoughts rise up. Because even though I've put it to bed this time, it's just a matter of time until something else comes along.
I've talked to a few other people with my particular brand of phobia. We all agree, that it feels like we're just sitting here and waiting for cancer to strike. The only thing I can imagine worse than what I've already been through is losing one of my kids. So of course I worry about them. I know what it feels like to lose a husband and I don't want to experience that again. So I worry about him. I'm not ready to lose a parent, a sibling, a niece, a nephew, so I worry about all of them (including in-law of the same). Of course I worry for my friends and their families as well. As for me? I don't fear my mortality. I haven't lived a blameless life but I try to be a good person. All the signs I've gotten from Jesse have enforced my belief that there is something more when this life is over. So I am not afraid. But, I know the pain my family would feel if it happened, and so I fear that for them. That is the fear that stops me in my tracks.
My psychologist has encouraged me to start writing again. Whether it's something I ever share with people or not, writing often helps me. Sometimes I have a great a-ha moment while my thoughts are tumbling out uncensored. I had a few on my first CPT assignment. My fear comes from my lack of control. I don't like when my fate is out of my own hands because bad things happen. It's the helplessness that feeds the fear. And that's why I can't leave the Google alone. I feel like, maybe I'll find that one golden nugget of information that will help me feel better. Sometimes I actually do! Usually I find more that makes it worse. But I feel like knowledge gives me a little bit more control back. I'm probably wrong. But that's how my mind works.
It's a messed up world in here. I put on a mask for so long during Jesse's treatments and in the early days after his passing that I didn't know how to take it off. And now I'm afraid some of the wounds have festered, and this is how they're manifesting. Until about a year ago I seemed to have it under control, but all hell has broken loose and now it's all spilling out.
Next month, I finally get the tattoo I've been planning and perfecting in my mind for ages. I am incorporating the ';' for mental health, the grey ribbon for Jesse, and the mighty phoenix to remind myself to keep rising up.
Better days will come.
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