Tag Archives: My Life

The C-Word

15 Dec

You know, I’ve always made a joke that my favorite word was the ‘c-word’. I said it was the only four letter word that could literally clear a room, silence a crowd, and shock absolutely everyone but an English person. In England, the word ‘cunt’ is used as liberally as ‘shit’ and is not considered to be any worse…they consider ‘bollocks’ which most Americans don’t even know means ‘balls’ to be worse than ‘fuck’ and that cracks me up.

But the ‘C-word’ has become something else to me in the last few months. It means Cancer. I capitalize it because it is so horrible, so terrifying, and honestly I never thought it would be something I would have to ever really deal with. My parents have both had surgery for melanomas, because in their day no one ever used sunscreen and my Dad had a huge mole removed from his lower back when I was in the sixth grade, and I remember being confused and scared at what it meant, and all I knew was that people kept whispering ‘Cancer’, so I knew it was something awful. But he came home from the hospital and was ok, no treatments, no hair falling out, nothing. Just a bandage where the mole used to be and he was back to normal within a day or two.

My Mom had her bout with melanoma when she was in her fifties, and it was from laying in those damn tanning beds, which she did every Spring to get a ‘base’ tan. That bunch of bullshit that society fed her about how tanning beds were safer than the real sun, blah blah blah, well they ended up turning a mole between her shoulder blades into a cancerous growth that was as big as a grapefruit beneath the skin. If it hadn’t been for her wearing a backless dress to a formal and her doctor/friend noticing that the mole had an unusual shape she would never have known it was even there. So she got the surgery, suffered for a few weeks while she healed thankfully, and now has a ‘mole patrol’ done fairly regularly because as my niece said ‘Nana is polka-dotted’. Her moles are not small or normal looking anymore, now that she is in her sixties they are horrible looking and honestly they make me want to throw up every time I see them, because they make me think that she is going to have to have them all removed and I swear she is going to be more scars than skin on her stomach and back!

But I never tanned, I don’t have but a rare mole here and there, and I keep an eye on them. What I have had problems with for years is my weight. I was diagnosed with hypothyroidism in my twenties, and told I have a goiter. They found it quite by accident while doing a CT on my neck after a car accident. There was a trip to the endocrinologist, a pill that contained radioactive iodine so the goiter would not grow any more, then I was prescribed Synthroid, which I take every day. I was fine for a long time, but I always was on a diet, had to exercise like crazy or I would gain weight, and then sometimes I would lose weight really fast (I never complained about that!) I’ve always had mood swings, but I was diagnosed with Bipolar Disorder a long time ago and the medications kept my moods in check.

Then, about ten years ago I was prescribed Seroquel for my insomnia. I’ve had insomnia since I was a teenager and I’ve taken every drug on the market for it. Some work for a while and quit, others never worked at all- like Ambien and Lunesta. Seroquel knocked me on my ass and even on a low dose I had some really bad side effects, like eating in my sleep. I would wake up in the morning and my kitchen would be a disaster where I had cooked a full meal sometime during the night! I would wake up with a jar of peanut butter, a knife and a bag of bread and a gallon of milk beside my bed, where apparently I had pigged out on sandwiches all night. Consequently, my weight skyrocketed. I talked to my doctor, and she told me that it was a common side effect and that I would just have to either lock my bedroom door so I wouldn’t be able to get out without waking up (yeah, good advice in case of fire or emergency!) or go on a lower dose or different medication. Well, I tried different medications, but would go back every so often to the Seroquel when I was just out of my mind due to lack of sleep. I did my best not to eat as much during the day to combat the night eating, and I exercised as much as I possibly could, but I realized after two and a half years that enough was enough! I told my doctor that I had gained 100 pounds on that Satanic medication and I was not going to turn into a tub of lard just so I could sleep! She agreed and gave me some samples of different medications to try and I thought I was done with that. I worked hard to try to lose the weight, but I was really so tired all the time, and it wasn’t just from lack of sleep. My next checkup’s bloodwork showed that I was what they term ‘prediabetic’, but they said it was probably from the weight gain and that if I lost the weight I would be fine. What a crock of shit!!

I worked my butt off, literally, to lose the weight, and was down to my pre-Serquel weight within eight months. But the doctor had bad news for me, I was diabetic. They put me on pills, told me to stick to a diabetic diet, and learn all I could about the disease. Now, let me say this, no one in my family is diabetic, and it is known to be a genetic disorder. So in all my research, I could not understand WHY I was a diabetic, even with the wight gain and loss. Then add to the fact that the pills weren’t controlling my glucose levels, and I was told I was not a type 2 diabetic, but a type 1, and what they call ‘brittle’, which means you have extreme swings in your blood sugar levels and are difficult to control. I also have polycystic ovarian syndrome, which never caused me much trouble before, but turns out to be a real issue with diabetes because it means your insulin doesn’t work effectively and you have to use a lot more insulin than most people. So I was a diabetic, and a sick one at that. I also had a compromised immune system from it, turns out, and for over two years I was being admitted into the ICU for Diabetic Ketoacidosis roughly every six weeks. Having my period would throw my system out of whack, getting a sinus infection was like a death sentence, and there were a couple of times that I barely made it to the hospital in time to go to the ICU instead of the morgue. I actually had a near death experience during one of those times, but that is the subject for another blog.

With all of this going on, I found out that the pain I had been experiencing that I attributed to diabetes was actually Fibromyalgia, and then my thyroid was doing crazy things that they could not figure out at the hospital. They could not get my dosage of Synthroid right, I had seen three endocrinologists-each one worse than the next, and I found out that my goiter was not just growing but that I had developed nodules all over my thyroid and possibly my parathyroid glands. My vitamin D level was so low I actually broke the record at the hospital! My calcium level was low to, and neither one of those made sense because I was already on supplements. My doctor put me on huge doses of both (50,000 iu of D) and so much Calcium that I just took it by the handfuls. I also drink milk, eat yogurt every day, and eat cheeses and other calcium-rich foods. I try to get outside for about 10 minutes a day so the vitamin D metabolizes (yeah, turns out we need sun after all). But when my doctor told me that the reason I felt like shit and was so tired all the time was because of my thyroid, he told me I had to get to a GOOD endocrinologist ASAP. That scared me. I started doing research on the internet about goiters and nodules and parathyroid problems, and dammitol everything I was experiencing fit with some serious problems.

So week before last I went to the endocrinologist that was recommended by a woman my husband works with. She credits him with saving her life, and she’s a smart cookie, so I managed to get an appointment with him. I had to wait three months for him to see me, but it was worth it. He was great, he talked to me like I was a person, answered my questions, and ordered an ultrasound, a sleep study, labs and then a follow-up appointment to see where to go from there. I felt like I had finally found a savior.

I had my ultrasound appointment this past Tuesday. I went by myself because my husband is swamped at work, and honestly I was terrified. You see, I practically grew up in a hospital. My mother was House Supervisor at our local hospital, and when I got sick at school, or we had a snow day I would sometimes just go to the hospital and hang out. I would go to different departments and ask questions about what went on and the various techs would teach me how the machines worked, what they did, and I found it all fascinating. Add to that the fact that our dinner conversation every night was about what went on at the hospital that day, who came in (this was before HIPPA) and what they had done, and I had a really good grasp of the medical processes. I sat in that waiting room with a migraine, caused by my nervousness about the possible results of the test and having several doctors tell me my thyroid felt like ‘a bunch of grapes’ because of the nodules (each one of which could be cancerous, and I was a wreck. I have never in my life been scared of a medical procedure, I’m the kind of patient that watches the needle being inserted for an IV, tells the nurse to go ahead and dig until she finds the vein, never gets claustrophobic in a scan, and I’ve never had stagefright in my life. But this time it was different. I went into the procedure room, and the sweet young tech covered my white sweater with a towel and told me to lay back on the pillow, which as under my shoulder blades so my neck would be hyper-extended. I immediately had to sit up, I was nauseous. I apologized, and she asked me if I wanted to reschedule. I told her no, absolutely not, that I just had a headache and I would be fine. There was NO way I was waiting and rescheduling. So I carefully laid back down on the towel, and before I could stop it I threw up like a fountain! I threw up on her, the machinery, the floor, I tried to catch it with the towel, but all I had in me was coffee and some diet Mountain Dew and it wasn’t stopping for anything. I was mortified!

She was really sweet about the whole thing, asked me if I was ok, and I apologized about a hundred times. She got everything cleaned up while I tried not to cry, and then once everything was back in order she started the ultrasound. Now, I’ve had ultrasounds done before. I’ve had them done of my thyroid before back when I was first diagnosed with the goiter, so I know how many ‘clicks’ to expect.

She started, and I swear it was like over a hundred clicks, and she just kept going. Terror was ripping through me like I had never felt before. She even called in another tech to observe, and I know when that happens they are seeing something very unusual and want to make sure they don’t miss anything. They were dead silent, only pointing at the screen, click, click, click, click. Finally, I asked her if she could tell me anything, and she got this look on her face, and said that no, the radiologist would have to read it then my doctor would talk to me.

The C-word is no longer a four letter word. The C-word now has six letters and yeah, it shocks entire rooms and stops all conversations. It doesn’t shock because it’s profane, it scares the hell out of everyone within earshot. I’m at the beginning of the journey that will tell me if I’m it’s victim, if I will just need surgery, or treatment that will make me sick as hell and lose all my hair-my waist length thick red hair that my husband loves so much, or if I will die because it has metastasized and is slowly eating me inside out. There are no dice to roll, there is only waiting, hoping, praying-a lot of praying, and wondering if I will be one of the lucky ones who survives this nightmare. I’m not afraid of dying, I’m afraid of suffering, my suffering, my husband’s suffering, my daughter’s suffering, my friend’s suffering, and missing out on the wonderful things I’ve been looking forward to for years. I want to see my daughter become a successful woman, marry, have me some beautiful grandchildren. I want to finish my degrees so I can practice and do some good for those in need. I want to grow old and comfortable with my wonderful husband. I want to see my family together, finally, for Christmas. That last one may be possible only with me, my husband, my daughter and her husband and children, but dammit I want a happy family Christmas!

Right now, though, I’m scared. I’m more scared than I’ve ever been in my entire life. I don’t have any alternatives but to deal with it, though, and it’s terrifying. I want to cry all the time, I want to hide away and pretend none of it is true, I want to twitch my nose and make it all go away. But none of that is possible, and the best I can do is to try not to share too much of my fear with my loved ones, because I’m afraid if they know just how serious this all is, they will suffer. I won’t be the cause of their suffering, not any more than I have to be. So I’ll just write here about it, and it’ll be our little secret, ok?