Day 138

Today has been rough. I feel completely devoid of any energy. Even talking is taking more than I have to give. I realize that part of this is because I am severely anemic at the moment. I take an immune suppressant to keep my ulcerative colitis under control. However, the drug is also making me anemic. I have been anemic for a long time but now it has dipped below 100.[1]Because of this anemia, I also have some malformed red blood cells. This is really scary especially with the breast cancer. I see the surgeon on Wednesday. I hope to get some answes then.

May 26

 

[1]Low hemoglobin/anemia makes executive functioning difficult. It makes you tired and drowsy.

Days since breast cancer diagnosis: 15

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Day 137 – the ‘ground hog tooth day’ edition

Well, another day, another crown comes off. FML. Here’s a picture of me at the lab. I’ve been having fun times lately!

May 25

Days since breast cancer diagnosis: 14

Day 134

Not much to say today. I am still waiting and ‘looking’ for information from the surgeon. No call today.

May 22

Days since breast cancer diagnosis: 11

Day 133 – the ‘The Pain™’ edition

May 21The Pain™ is different from normal colon pain – the pain I deal with most days and that can be somewhat controlled with pain medication. The Pain™ arrives without much fuss or bother. Suddenly, it’s just there. I don’t always recognize when The Pain™ has made itself known as it has many aliases. But by about Day 3 of constant, unremitting, unrelenting pain that will not be tamed by any combination of pain medication I have in my arsenal, I know The Pain™ has arrived.

It arrived on May 12, one day after my cancer diagnosis. Throughout the diagnostic period – so from my mammogram/ultrasound on April 27 through to my appointment with my doctor on May 11, my colon had behaved itself. I had some pain, as I almost always do, but it was not deep and it didn’t last. I have learned to be grateful for the small mercies my colon bestows upon me. That time I had H1N1 flu – my colon took a vacation, I am thinking it went somewhere relaxing.[1]When my mother died and I had to identify her body and help plan the funeral in addition to dealing with crazy, super cheap step-siblings, my colon went somewhere else. This was a shorter trip though as it returned before the crisis was completely over. I never count on my colon taking a vacation when I need it to but I sure do I appreciate it. I initially blamed this round of The Pain™ on Mary’s crackers that were both gluten free and vegan[2]. Basically, they are made of ground of whole grains, bark and wood pulp all bad things for an ulcerated colon.

Yesterday evening, at around 9pm, I noticed the pain was gone. Just gone. I hadn’t taken anything.[3]It was like a miracle.[4]What happened certainly did not seem to account for all that pain being gone. But gone it was.[5]Who was I to argue? I woke up at around 9 am today and it was still gone. I told Deb and we had a little mini-celebration, rolled over and went back to sleep. When I finally got up, I was greeted by long-lost friend tenesmus. This is familiar and compares to The Pain™ like a mosquito bite would to a full-on fire ant attack, that you survive.

So now with The Pain™ becoming a memory, I get to face the breast cancer diagnosis again. I wake up sad and the tears are rolling before I even get dressed. I am not used to living in emotion land. My whole life has been spent, in one way or another, avoiding my feelings and losing the map. I blame this on the fact that I am adopted and that I spent the first 4 ½ months of my life in a hospital waiting to be adopted. I am not sure why it took so long in 1965. Maybe they didn’t do the pre-planning that is done now. I really do not believe I ever attached properly to any being until I got my first dog.[6]

I much prefer to live in my head. And it is this absence of information[7]that has gotten in the way of me getting more information. I have not googled anything because I don’t want information without context; I am afraid that if I look, I won’t stop crying. Again, this is very abnormal behavior for me. I am all about the information as much as Meghan Trainor is all about the bass. I am strong when I’m in information land, I can solve all of the problems and I can make plans. I can’t do any of that now and it’s really fucking hard.

I do know that the surgeon’s office has received my referral marked ‘urgent.’ Apparently, they are waiting for a supplemental report and then they will get me in. I am also hoping that the surgeon will deal with another pressing issue I have. I have a scar, from pyoderma gangrenosum that I developed in 2008. It turned into p’eau d’orange (skin that is inflamed and resembles an orange) in 2012 and it has been getting much worse. So much worse that it seriously affects my mobility and may be contributing to my pain. I am hoping that both things can be done at the same time. After all, it’s similar surgery,[8]and it will mean I only have to go under a general anesthetic once instead of twice. But of course, I can’t plan for this yet because I haven’t spoken to the surgeon.

I am planning for my return trip to intellectual land. I believe I have overstayed my welcome where I am now.

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[1]Which, if you know me, would not be a vacation in the sun. It was likely a short drive away, in a nice hotel or cabin where all my needs could be easily met and where I was comfortable. This is not easy to accomplish when you reside in my body that does not fit most furniture.

[2]I remain deeply suspicious of those crackers and although they tasted ok, those of us who ate them all agreed that they could use more salt. Do those who eat gluten free and vegan have something against salt?

[3]After a while, I stop wasting good drugs on bad pain that won’t go anyway.

[4]Ok, well something happened, but it was minor and too much information for me to even publish on my blog.

[5]For those of you keeping track – it was 8 days.

[6]Those of you who have known me for a long time will remember Tippy the Tiny Terrorist. God, I loved that dog and I remain forever grateful to Gale for entrusting her care to me.

[7]And a goddamned long weekend which normally love.

[8]Removing unwanted bits and bobs.

 

 

Days since breast cancer diagnosis: 10

Day 132 – the ‘where will the Kleenex go?’ edition

May 20Well, I am now a person who has cancer. I have been for a whole week, at least officially. Who knows how long that tumour has been slowly growing in my breast. I am hoping beyond hope that it has been caught early.

It’s interesting. When I think about having cancer, I see rooms full of half-bald people in those hospital recliners getting chemo shoved into their veins. This is what scares the hell out of me. Besides the fact that poison[1]is going into you, it’s the getting the fucking IV started. I have shit veins. It takes usually at least 5 pokes and that’s if the nurse is good at what she’s doing and listens to me about where to go. When they get egotistical and think they know better that’s when we get into trouble. I wish they would trust patients more. I am a veteran of the medical system. It is precisely the re-entry into the medical world that scares me the most. Just the thought of going through this again throws me into a panic attack.

When my doctor gave me my biopsy results. I asked her to advocate for me. I explained a bit of my history[2]. I told her my history with IV antibiotics and colonoscopies when I have felt everything. She flat out said she couldn’t advocate for me and that ‘they wouldn’t listen to me anyway.’ Isn’t patient advocacy one of the roles of the family doctor?[3]Even if she didn’t want to do it or had no intention to do it wouldn’t a human being tell a panic-stricken woman, who has just been diagnosed with breast cancer, that she would do her best?

The one thing she’s good at is making referrals. She told me to call her office on Friday if I hadn’t heard anything from a surgeon. I called and apparently, they are waiting on a supplemental report that should have come on Friday. Of course, it’s a long weekend[4]but right now is just getting in the way of my life. Right now, I am hoping to have surgery by the end of next week at the latest.

Surgery doesn’t scare me. The nice thing about surgery is that every day you get a little better. You do the exercises they tell you to, you get up and walk so you can have a shit so they can let you go home. Although, given that they are not messing with my intestines maybe that won’t be a requirement. I suspect that recovery will be quite painful but I am no stranger to pain and I can handle it.

I am having one existential crisis about the loss of my breasts. Where will I store my Kleenexes if I no longer wear a bra?

_________________

[1]Which will ironically save your life

[2]She doesn’t have my medical records from my old doctor, if I thought she would read them, I would pay the $85 for them. What’s even scarier is that she hasn’t asked for them.

[3]She told me that I should ‘self-advocate’.

[4]Which I normally live for.

 

 

Days since breast cancer diagnosis: 9

Day 131

My front tooth crown fell off again. I am hoping they can just glue it. I am not up for another crown, in addition to the one I have to do next Thursday. Seriously, I can’t take much more. I just want to have my surgery and be done. In the meantime, I want to be left alone to do what I want. I am angry and sad. Woo hoo! It’s a 2 emotion day.

I got my crown put back on. I meant to take a picture while I was outside lest you all think I never leave the house. Trust me, it doesn’t happen often so it should be chronicled for posterity’s sake. Anyway, here’s another picture of me in my office. I am now listening to music so I am a little happier.

 

 

Days since breast cancer diagnosis: 8

Day 130

Today has been a bit better than yesterday. Right now, I am focused on self-care as much as possible. I think it’s working. At least my mood is improved. Still cried today though. I want a big sign that says how many days it’s been since I cried. I think it would be stuck on zero a lot.

 

 

Days since breast cancer diagnosis: 7

Day 129

May 17
It’s hard to wake up feeling sad. It seems like everything you try to do takes so long or is completely futile.
 
Mood-wise, I have been doing mostly ok. But the combination of the stress of being recently diagnosed with breast cancer and the pain in my colon have conspired to make me even more miserable and sad. I am already stuck in the vicious circle whereby increased pain makes me anxious and more anxiety increases the pain. It’s really hard to stop it in its tracks.
 
I am a serious introvert. I need my time alone, especially when I am sad and struggling. I never like to be the centre of attention for any reason. Even though I know Deb is trying to help me, I sometimes need her to leave me be to sort it out on my own. Because I will sort it out – it’s what I do best.
 
Those who know me best would not describe me as a patient person. Over the last couple of years, I have become much more patient. I really noticed this calmness that came over me when I entered my 50s. There just didn’t seem to be any reason to invest that much emotional energy in trying to hurry things along over which I had no control. So, I have become much better at waiting. However, I am struggling here because there is a cancer in my right breast that needs to be removed. I just want a date and some certainty in my life. Cancer definitely robs you of certainty.
 
I have not yet received my appointment with a surgeon. I am to call my doctor’s office if I have not heard anything by tomorrow. While my doctor may be lacking in anything remotely connected to emotional availability, she does seem proficient at making referrals. All of her other referrals have happened very quickly. So, I wait, as patiently as possible.

 

Days since breast cancer diagnosis: 6