Ghost

One thing that is never easy for me to do is talk about myself.  Most of the time people seek me out to vent, ask for advice or simply tell me about their days.  But rarely do I try to seek others out to discuss my frustrations.  I thought blogging would help with that and yet I became a ghost, abandoning my current blog.  By no means was that intentional, however discussing cancer is never a comfortable state of being.

So what has happened in this short lapse of time?

At the start of August I received my first round of radiation.  I say first because I do not know yet if it will be my last, one and only, or if I will require more.  Let me start by saying getting radiation sucks ass.  Yup just like that.  Why? Because this procedure requires so much of you, that I didn’t know at the time.  Nor did the doctors say “hey by the way this is what to expect, the real world version”, you know the realistic version of outcomes.

Here is the basics for anyone getting ready to have radiation iodine done.  First, the obvious, you have to go into the hospital and swallow a pill (this part is the easiest).  Prior to that happening (about 3 weeks to a month depending on dose) you must get off all your medications and start a very strict diet about 2 weeks prior to.  So not only do you no longer get to take any of your thyroid meds (the ones that make you feel good). But you now get to go on a diet that isn’t very nutritionally sound, hence leaving you feeling even more drained.

Finally, dooms day comes, you go in to get your pill.  But wait…afterwards, you must remain isolated in your home for a set period of time. I am a mother and wife, does this sound even remotely easy to have happen? No of course not, this requires planning, lots of planning. For example, where will my family stay? What should I pack for them while they are gone? I can’t really go anywhere, so what foods will I need to purchase ahead of time? How will I react to the radiation? Etc etc etc… surprisingly this takes a fair amount of pre-planning for anyone with a family.

So, you plan, make arrangements, pick up a whole bunch of stuff for yourself and THEN dooms day comes. Word of advice, I suggest buying disposable items they don’t suggest which makes no sense, like a tooth brush.  I must eat on disposable plates, but there’s no concern about my tooth brush? Also my doctor suggested lemon drops as this helps to clear the salivary glands that can be affected by radiation (oh the joy I will have describing that one).

So now you may be wondering what to expected during radiation and post? Well don’t expect anyone to give you much advice beyond the little pamphlet you might receive. Well that was my experience… and a frustrating one at that..

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Cancer. Party of 1.

When you have cancer or are in the process of recovering from it, you basically give your entire life to cancer.  Not in a morbid type of way, but there are many reasons it begins to control it…Some things are actually in a good way and have been to my benefit (hard to believe right?). But the truth is simple, your life will change in many ways, some expected and some not.

First and foremost, its a struggle regardless of how bad you have it. Cancer is cancer and it sucks either way. The treatment and recovery can be trying while you patiently wait for the doctors to figure out what exactly they are doing. There is no definitive time line…medicine is a practice for a reason. It isn’t an exact science and we are not in any way shape or form alike in how our individual bodies will react.

Currently I am off all my meds due to some rare antibodies floating around blocking the ability to read my levels clearly. This has created issues with the doctor’s course of treatment and issues for myself as I did not anticipate being off my meds for an extended period of time.

Becoming hypothyroid sucks ass. No really. Your hair falls out. Your entire body slows down. I can hardly eat a normal size meal and if I do, I immediately start feeling like vomiting. I can’t regulate my body temp well. I can’t sleep due to increased restlessness that creeps up during night fall. Which means I am tired all the time. Which also means I am pretty much in constant pain.

As a result of this whirlwind I am under its control of my body 24/7. It tells me if I have enough energy to do anything in my day, even the simplest activities. I’m at my body’s mercy of how it feels and what it needs. Honestly my Type A personality absolutely hates it, as I need to know what will be going on in my day and when, constantly. Not knowing now triggers my anxiety. Not having enough energy to complete some basic tasks triggers my anxiety. Its rather depressing. But on the plus side, the energy I was rob of led me to not give a shit. Whether my hair looks acceptable, if I have make-up on, hell if I forced myself to get up on time not to piss others off because how dare the person with cancer be tired!

Cancer showed me that some people are straight up two faced loser, who would do anything for a social media photo op. Like look at me giving attention to the sick girl, I can be compassionate too. Well fuck you dude. People with cancer don’t need your sympathy, most days we need a good laugh. The kind a toddler does when he or she is genuinely entertained. I need a hug most days, a “no worries” smile and a friendly shoulder. Cancer led me to find some people are just not genuinely that interested in others except if it makes them look good.

Cancer taught me to slow down. I can’t keep the same pace I did before. And while its only temporary, I still have to embrace a dirty house, a sink full of dishes, a stinky kid and fast-food for dinner kind of days. If that means what energy I do have goes to making my family happy, then that’s just fine.

However, I always have energy for laughter and peanut butter..go figure…

Cancer Induced Hypothyroidism, What That Means For Me.

I feel like I’m in a science fiction movie where they induce different physical ailments to see how the human body reacts.  Then everybody kinda stares at you im an unfamiliar way as they try to figure you out. I can promise that Hashimotos is not one of my fonder illnesses…if I had to choose one. So here’s whats been happening during my hypothyroidism stage that completely suck ass…

Hair Loss

Sadly, your thyroid controls ALOT in connection with your hair (and color as we last found out). Lack of thyroid hormones causes your hair to become dry, brittle and fall out. The falling out part has already begun, I’m losing about a handful daily. The more notable areas are usually on the side of the head. It also drastically reduced my hairs ability to uptake color. This is apparently pretty common as I read, which lead to the color I currently have.

Fatigue/Sleep

Naturally as the metabolism begins to slow down due to lack of thyroid hormones then the body begins to wear more easily. I’m pretty sure no amount of sleep can solve this kind of fatigue.  And in fact sleep often feels impossible, I often can’t fall asleep or stay asleep.  I’ve read this is due to adrenal insufficiency.

Digestion

A slow metabolism means slowed digestion, which as an athlete thats no bueno because food fuels workouts, however if you don’t feel like eating, working out becomes extremely difficult. And ironically, you tend to gain weight as well. Last time, I dropped a drastic amount due to lack of interest in eating…too soon to tell what will happen. However the desire to eat has become non-existent. Which also leads to low energy and crappy digestion…a vicious cycle..

Mental health

Yeah, so when you feel like shit 24/7 you are bound to have some mental struggles, like depression and anxiety. Cancer alone brings these issues on, the worry, the isolation, the physical battle, now add on induced hypothyroidism and you’re asking for a mental battle. Some of which is purely unavoidable due to changes in the physical levels within the body.

You may be asking if there is anything good that would come of this, at this moment, no. In the long run, one can only hope…luckily Summer time allows for some flexibility. It’s hard to be boss, mom to a young boy, daughter, friend and wife. Dinners still have to be made, laundry done, dishes washed (my most neglected duty right now, sorry Eddie), work mamaged. Yet, I still manage to wake up every day, so I have yet a reason to complain…until then…

One Month Post Surgery 

As grateful as I am for all the hard work my doctors have put in, the hardest part is upon me. I saw my specialist last week and in order to prep for radiation I have to get off all my current meds.

So not only do you get to deal with all the unpleasant parts of cancer, now you get to do it along side all your other unpleasant symptoms/conditions…how nice…

Other than that little unexpected hiccup, recovery has been good, in terms of my incision etc. Most of the swelling has receded. However there is still quite a bit of pressure that makes it hard to eat/swallow. Hence my disdand for social activities as I feel retarded, for lack of a better word, due to the movement I make in order to swallow in comfort.

I return in about a month to check my levels again. In normal fashion, my levels were unreadable due to a highly rare condition that presented during my last test. Hopefully this will subside and we can obtain more accurate information, fingers crossed!

Don’t Kiss and Tell…

For a country as large as ours you would think that we would provide more to our people. More services in terms of advocacy, mental health or support, but I think the idea that someone might be broken is something we’d rather not discuss. Like we can’t kiss and tell, because there’s shame in a perceived flaw…a misstep. That the “flaw” is our fault, our problem, and as a result we shouldn’t discuss it.

When I found out I had cancer, I was alone. I was in my car, alone, as the lab handed me the test results without a second thought. And although I later saw my doctor and he went on to explain our plan of action, no one offered me mental health support as a cancer patient. No one mentioned support groups, offered materials to read or literature of what to expect post-op. But why? Are emotions not part of the equation? Which is funny because everyone keeps mentioning how brave and strong I’ve been, which are an emotional state of being. So why not the other possible emotions, frustration, fears etc? Is it because to feel something negative would be met with shame? That I am merely having a pity party for poor me?

See, that train of thought is what isolates us even more than being alone. The idea that if we feel upset about our current situation we are in the wrong. We want attention, for others to pity us in our time of need. How about we are just having a bad day? Or having not yet learned to cope in our current situation because no one reached out to say “its okay, its okay to feel anger, frustration, out of sorts.”

Well let me say it now to all those out there, fighting this battle “alone”. You will have emotions that are out of character, in fact you may feel out of place. This disease is isolating, not only during the required portions, but while you are stuck in limbo during these visits and treatments, others are still living.  When you lack the energy you once did and are forced to sit them out, or when you purely need to cry as you hide behind a building at work, unwilling to look weak as you seek mental peace.  This is okay and normal and you are not alone or undeserving of your feelings.

Whoever reads this please note:

If you’ve never gone thru this, don’t give up as a support system to your friend. There are people who only reach out when necessary, who won’t invest in more. Don’t be that person, be the person constantly seeking and supporting the other person. This disease, the visits, the procedures are so overwhelming its often difficult to have enough mental clarity to do so. I simply hate burdening others.

If you are going through, you are free to feel what you do, just don’t become reclused and unwilling to continue to spread the love.

Peace kitties…

Silent Whisper 

Its been about 2 weeks since I’ve posted, not because I have been busy, which I undoubtedly have been, given that I’ve already returned to work….okay rewind, I never really ledt work but still…And not because of disinterest, as I enjoy writing and helping others. Writing has always been a passion of mine, especially poetry.

No. Its due in part, to the struggle with post surgery changes; my physical and consequently, mental struggle in coping with cancer. The silent whisper of my inner voice feeling disjointed by all the metaphysical displacement. Much of which, I am well aware of, is due to the chemical changes that occurs when one removes an important organ from their body.

I knew what the thyroid did, but its level of function in my body’s current state was unknown, until now. It was obviously maintaining my sanity and preventing my own version of Tyler Durden from appearing.  (Not that an appearance from the real Tyler would be bad, just saying the obvious). This state of unrest is quite frustrating for someone who had found a bit of peace in her yogi, gypsy world of life and love.

This almost feels fake. That each morning after my, maybe, 3 hours worth of sleep, if that, I’ll wake up feeling normal. I can go back to feeling like me….

And the Verdict Is?

Like everyone else I have been anxiously awaiting the appointment to follow up with my ENT (he did the surgery) to hear what the final report was. Over the last week I tried my best to focus on my recovery and not the pathology. But that feeling never goes away. That worry and concern about whats to come lingers in the air like thick fog. Not just by me but all those who are near and dear.

Unfortunately as much as I’ve been living life, cancer makes you put things on hold due to its uncertainty.  Even once you’re given the green light, there’s an indefinite waiting period of what ifs

Well today was the wondrous day I got the stitches removed, tape replaced with more tape (yahoo…cue sarcastic side eye look) and then me gracefully fainting in the doctor’s chair. I didn’t used to be such a wuss but the sensation of the stitches being pulled from your neck followed by “hey lets look at this in the mirror” was enough to get my heart racing, sweat developing and that eerie feeling in my stomach that the world would eat me whole. Soon enough I was laying back in the doctor’s chair feeling ready to vomit. Great. Quite embarrassing to say the least.

Minus the reaction to the tape, the incision looks relatively…well…like a normal incision. How else should I describe it? Haha.

So the report. The make or break my future report… I am not sure how I’d describe hearing the results.  Stage one papillary thyroid carcinoma, with no envasion to the surrounding structures, it was contained, which means with some certainty it was only present in the thyroid.

Which starts phase 2 of our treatment plan. Within the next week I’ll be seeing the endocrinologist to start radiation therapy followed by monitoring aka multiple follow ups, labs and so on. I was already on meds but due to thyroiditis present and identified as a additional finding, my levels may definitely need to be adjusted.

The down side of all this? I can’t do yoga yet! I also can’t lift weights either, what kind of woman does this doctor take me for??

Peace and love xxoo 🕉