6 months in

It hardly seems like it's been almost six months since my surgery. I've had that time to recover, reflect and regroup and to connect with people I haven't seen or talked to in a long time.  The many phone calls I received and the almost nightly online chats were a very welcome distraction.  The conversations kept me going and made things a lot easier to manage and a lot less lonely.

It seems though, that inevitably, somewhere in each conversation I'm asked "so, how are you doing"?  My standard answer to that is always "I'm doing okay", because in the grand scheme of things, I am. Generally, the follow- up question is about cancer and how I'm dealing with it. Again, I answer with "I'm handling it okay", because I don't know what else to say.

It's difficult to verbally impart how I really feel, as it's quite confusing.  For the most part I really am okay, because I'm still here and still standing.  On the other hand, I'm not totally okay because I'm living with cancer. It's a bit of a conundrum. Some days I'm better than okay, some days I'm not.  I have calm days, trainwreck days and self- pity days.  If I find myself confused at that, there's no way I can expect anyone else to understand.

I can't explain that there's this feeling of perpetually walking around a land mine, because I am constantly afraid of recurrence.  It's hard to work that into a conversation. Besides, my therapist tells me that's a rather unreasonable way of thinking, so I just don't say it.

I recently came across a blog by another cancer patient that validated this feeling.  She described her fear of recurrence  like having a gun pointed at the back of her head. There are equal odds whether the gun is loaded with another cancer bullet, or if the safety is engaged. Like a chant, it whispers "Go live your life, pay no attention to me. Do all the things you'd normally do. I'll just quietly stay right here. I may go off, I may not. But don't worry about it. Much."  I think that's the most accurate description that I've heard so far.  Again though, it's not a great conversation starter. So I don't say it.

When I'm asked if things are getting back to normal, I usually reply with "pretty much".  But there is absolutely nothing that's normal anymore.  The side effects from my medications aren't normal.  The surge of emotions that suddenly attack me without any warning aren't normal.  I can no longer physically do some of the things I used to, and watching other people carry out my tasks certainly isn't normal.  I have a drawer full of prothesis breasts, which is definitely not normal.  None of these things make good phone call topics.

Then there's the next most asked question "you're going to get reconstruction later, aren't you?".  I have no desire to undergo any unnecessary surgery in the future. I've thought a lot about this, and it just doesn't seem like it would be worth the process at this stage of my life.  I'm leaning toward having my daughter design a really cool, bad-ass tattoo instead. So, my answer to the question is "I'm not sure yet", because people don't understand why I would turn down the chance to "feel normal" again.  Although it's mostly my guy friends that don't get it, so there's that to consider, I guess. 

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The other thing I get asked a lot is whether I am considering being an advocate for breast cancer awareness.  I have no intention of it.  I've advocated, fought and educated for too.many other close-to-home illnesses, I'm not interested in doing it again.  I also not up for verbally explaining that to anyone, so I don't tell them.  I just say "we'll see".

I'm starting to feel a bit guilty fibbing with my answers, but it's just too difficult to explain some of these things.  It's easier to give the expected answers than to reveal the weirdo that I truly am.  

These Tears

I've never been much of a crier, since I never thought that tears did much good in the end.  I'm not saying that I never cried, I just didn't do it often or easily.

I could always count on one hand the number of times I cried in the run of a year.  Yet, it's only the end of April, and more tears have escaped my eyes this year than I can number. I still don't find that they do much good, but I'm unable to stop them.

In the past 6 months, my emotional armour has been assaulted to the point of breakage.  There had already been a few dents in that armour, but one doesn't live half a century without a few dents.

The latest barrage of assaults took those dents and punched holes in them.  From an unexpected cancer diagnosis and mastectomy; dealing with life in the new COVID era; to the shocking killings of 22 innocent people in my province, tears were shed in abundance. 

Cancer softened me up some, enough to allow tears on a  more regular basis. The medications cause emotional swings, so that also contributes to the crying. And I currently hate my hair.  My armour didn't stand a chance against all of that.

Tonight's tears are different. As I write this, my eyes are again filled with tears. Tonight's news of a downed Cyclone from HMCS Fredricton has my heart in tatters.  There is no confirmation yet of the outcome, but I know each and every member of that Air Detachment, and consider many of them my friends.  I am worried for their well being and that of their loved ones. Tonight I can't hold the tears back, so I won't even try. These tears are unstoppable anyway.  I cannot fathom the thought of an unpleasant outcome, yet I can't discount the possibility. 

So tonight, I will cry.  For the friends that I care about, for their safety, for their souls. This time, I know I'm not crying alone. 

The Best Outcome

Late last week, I received the news that I will not need chemotherapy for my cancer treatment. I'm not sure what the oncologist had tested for, but whatever it was, my numbers were low enough that chemo wouldn't be of any more benefit than the immunotherapy treatment. It's a lot easier to take a pill than go through chemo.

As a Capricorn, it's often hard to find my "inner child", but I literally skipped down the sidewalk of the hospital that day.  My sister was several feet behind me, unsure of whether to join me or pretend she didn't know me. Fortunately she chose the former.  

The relief that I felt is indescribable. I'd gone into the appointment expecting the worst and ended up with the best outcome I could hope for.  For the next five years, my chances of recurrence will be slightly higher than the average person, but the specialists seem very pleased with how everything has gone so far.  I can't explain how devastating the thought of losing my hair was. I know that's not what the big picture was about, but I'm really happy I don't need to endure that.

I still have a lot more to deal with, but knowing that chemo isn't included in that is a huge boost.  The immunotherapy drug is causing a few inconveniences like nausea, tiredness and hot flashes (on a scale I didn't realise existed).  The nerve pain medication causes fatigue as well, but it's starting to work and gives me plausible nap excuses. Overall, none of these things are insurmountable and my hope is that it all eases up as my system adjusts.

My return to work will have to wait a bit longer as I'll need to have frequent lymphatic massage appointments to help with the edema, and weekly physio to regain full range of motion in my arm. There's also the counseling sessions to help me deal with the new reality of my life, but I think these are all pretty good trade offs for the chemo. So for now, I'm too busy to go back to work.  

This outcome (so far) makes me feel very lucky. Anyone who knows me well also knows that my name and "luck" usually are never in the same sentence.  This time, luck was on my side. From the initial pain that I shouldn't have had at that early stage, to the fact that the tumor stayed in situ and the break on treatment, I truly feel like I had a protective force around me.

Aside from luck, I believe that positivity manifests what is needed. I'm not known to be an overly positive gal when it comes to my life, but I really had a lot of backup for this. The abundance of positive messages, texts, gifts, visits and support from my huge army of friends and family played a big role in getting me through the hardest days I've ever faced. There's no way I could have stayed intact if I'd battled this alone, thankfully I didn't have to. I love and appreciate each and every one of these friends more than they will ever know and will never forget their kindness. 

Now if someone could find me a mask, some Purell and a roll of toilet paper, my damaged immune system would appreciate it.  The only Corona anything that I want to deal with is the kind in a bottle that goes well with a lime wedge.

The Good, The Bad and The Ugly

My post surgery appointment went amazingly well.  The tumor ended up being half the size of what appeared on the mammography images, and was only 2 centimeters.  No lymph nodes were invaded and no other surprises were found during surgery.  Radiation is not necessary and I appear to be a good candidate for hormone immunotherapy rather than chemo.  My oncologist will make the final decision on that later this week. She has opted to send a pathology sample to California for further testing to ensure that immunotherapy will be enough. Better safe than sorry, so my fingers are crossed again.  That's the "good" part (except for the agonizing waiting).

The "bad" part is a little more complex.  I ended up with neuropathic pain from some nerve damage under my arm, but that is not uncommon with lymph node removal.  The meds they gave me for that ended up causing fluid buildup under my arm, and I'm now on medications to combat this new wrinkle in recovery.  My nightstand is covered in prescription bottles and it's messing with my feng shui.

There is no way to accurately describe the pain from fluid buildup, but it's almost like the skin in that area has third degree burns.  Add in the 24/7 nausea from the nerve pain medication, and the stabbing pain in my armpit from the nerve damage and you may get the picture. 

Honestly, I'm already tired of all of this post surgery nonsense and pain.  I really can't envision having to also endure chemo.  I've had seven weeks of nonstop pain, and I'm ready to admit defeat.   I just can't see myself being strong enough to go through the effects of chemo.  I'm already wanting to just say "to hell with it" and take my chances.  I won't, but it's tempting. 

Don't get me wrong, I'm truly grateful for the good results, but my "Eeyore" tendencies have pushed my mood as far down as it can go. 

The ugly part is that I'm still struggling with the new normal that my life has become.  I know that adjusting will take some time, but I'm impatient to just feel like "me" again (and a little uncertain as to what "me" actually will be, because it sure won't be the same).  

I'm also struggling  with what I want to do when this is all over. I enjoy my job and I miss it, but I really think I'd like to do something where I can help people and make a positive difference to their day.  I no longer seem to have the wherewithal to spend my days doing the same things over and over, and feeling no sense of accomplishment.  This has been weighing heavily on me, and it's difficult to make a decision between financial security or personal happiness.  

Between the ongoing physical pain, the emotional back and forth and the mental worries about my future, I feel like I'm in the middle of a gunfight armed with a dull butterknife.

I envision this good, bad and ugly as a showdown between mind, body and spirit.  It wasn't one of the things I'd expected to battle, but that's where things are these days . I arrived at this showdown highly unprepared and woefully unarmed.  Hopefully I can dodge the bullets until I can at least find a better butterknife. Or water pistol.

What They Don't Tell You

These past few weeks have been a hell of a year.  There are a lot of things that no one tells you about cancer, surgery, and the multiple effects they can have on ordinary life.  A good friend of mine who has been on his own ride with cancer, did warn me at the beginning that I'd either not know enough things or I'd be inundated with too many things I don't need to know. He has his own blog (The Cancer Sucks Chronicles) and encouraged me to start writing on this site again as a release of sorts, so here I am. Blame him.

Once more, I feel the need to complain about the pain side of the surgery. Partly because I'm still furious about it and partly because I feel entitled to a little whining. I wasn't expecting this level of pain, and wasn't led to believe it would be as bad as it has been.  "Minor discomfort around the incision" is what I was told to expect. That misleading statement was not only wrong, but somewhat cruel.  There should be an entire handbook dedicated to the potential pain, and "minor discomfort" is definitely not how I'd describe it.  Mind you, the way I would probably word it would likely have to be heavily censored. 

I truly believe that with any surgery, and especially one where you lose a physical part of yourself, there should be a longer and more frank discussion around what to realistically expect.  A little counseling session on the pain level that may occur and some guidance on how to cope with it should be standard practice. It would also help to have the surgeon and family physician in agreement on pain management methods before the surgery.  It could save the patient some long days of unnecessary and unreasonable pain.

A conversation on the emotional impact of cancer should also be part of a universal  care plan.  Some blunt talk about the feelings you'll likely have about not just having cancer (which is a huge shock to start with), but things like seeing your body for the first time after the bandages come off.  I thought I was more prepared for that than I actually I was. I think if someone had talked with me in detail about how things might look after surgery and to expect that first glance to be devastating, my meltdown may have been gentler and shorter.

 I wish someone on the medical team had mentioned that emotional anguish is the other half of this battle. It may have made me feel a little less defeated. I mean, I knew I'd only have one breast (obviously) but the puckered stitches, swelling and bruised skin looked like a weird science experiment.  I didn't expect that, and hadn't really thought a lot of it before the surgery.  Some warning would have been nice. This is going to take a very long time to get used to and for once, I'm really glad that I'm unattached.  I may never be comfortable enough with myself to ever again consider any other relationship status. No one mentioned that, but they should have.

A hint at the possibility of workplace separation anxiety would also have been beneficial.  After working full-time for 38 years, I don't know how to be at home for 6 months and keep my sanity.  I honestly didn't think I'd miss my job so much, and that being out of the loop on everything would feel so isolating. It's only been a month, but I feel like I don't belong anymore, even though I know that's not the case. At least I hope it isn't.  No one talks about that, either. When you spend more than half your life doing something and then suddenly you're forced to stop, it's hard to not feel cut off.  It's like someone stole my identity and it's hard to deal with.  This also was never mentioned, but it's another thing that should be.

I've spent many years challenging the lack of mental health professionals and services in Nova Scotia. I've seen too many failures and tragedies in the system and I now see another shortfall. Preventative counseling -  it should exist, yet it doesn't.  Physicians and surgeons know that cancer and it's baggage is likely to take a huge emotional toll on their patients, yet we don't have enough mental health professionals to be an integral part of the care team. It's also been proven that with a good frame of mind, patients will more easily recover from the physical trauma of surgery.  It's kind of tough to have a good frame of mind when you're dealing with this, though.  I'm thankful that I have friends who themselves have been through this to help guide me. I'm thankful that the physical things were dealt with very quickly, but I'm disappointed that an equally important part of this process wasn't addressed at all. Not before, or after the surgery. It seems wrong to me.

Fortunately, I have this forum to get things off of my chest (no pun intended).  Even though I have my family and some very good friends for support, who have all offered to let me vent to them, I won't. I couldn't anyway,  because there are too many times that I can't explain how I feel, probably because I don't even understand it myself. I don't want any of them to feel bad because they can't fix it, and I've often been on that side of the coin so I know that would happen.  I fear they would get very tired of me, very quickly. Besides, everyone has their own bullshit to deal with, they don't need mine piled on.

So I think  I'll just vent here because it's the easiest way, and if I'm boring anyone, they can stop reading at any point and scroll to something else. I won't even know, no harm done. 

As mentioned earlier, blame the guy who encouraged me to write again. 

Step One - Check

I'm almost 2 weeks post mastectomy.  All in all, it wasn't horrible, but it hasn't been a walk in the park, either.

On surgery day, while waiting for my ex husband to come pick us up (amicable divorce, long story), nerves got the better of me. I'm glad I hadn't been allowed any food for hours beforehand (no more detail should be needed here).

Everyone was tense on the drive over, probably feeding off of my energy.  The directions on the hospital paperwork skipped a step, and after sitting in a waiting room with a few expectant grandparents and fathers for 30 minutes, I began to panic that we weren't in the right area.  We weren't.   Well, we WERE, but no one had told me there was paperwork to pick up first, several floors down.  Once I realized that, then I panicked because time was ticking away wasted.

After sorting it out and following the blue train to the red boat and then the green wave back to the 3rd floor, I was already done with patience.  Anyone who has been to that particular hospital will know what I mean.   

The staff were running behind, my daughter was getting antsy (usually followed by mouthy), my sister was a wreck and the ex was nowhere to be found.  I was getting annoyed and dumbfounded as to how the first surgery of the day (mine) could be "backed" up when my surgeon and anesthesiologist were there and ready to turn me into a one-tit wonder.  

The meltdown came when the ex walked around the corner with coffee and bagels.  In hindsight, I'm sure he thought I was already in surgery.  However, after many married years of him doing many things like that, it was the tip of the iceberg. I had really hoped to keep my mascara intact for the surgery, but the coffee scent undid me. And yes, I went into that OR looking as good as I possibly could, because screw cancer.

By noon, I was home and settled on the couch.  There wasn't much discomfort, but I was pretty medicated so probably just hadn't felt it as much.

Three days later, I felt it.  I mean, really felt it (and still am). I had assumed I would have some pain at the main surgery area, but haven't so far.  The pain I do have is under my arm and feels like I'm being pinched, stabbed, burned and beaten simultaneously. 

I have no information on how the surgery went, if there was anything of concern etc.

My surgeon is an excellent slicer/dicer, but he appears to not know how to "people".

He also wouldn't prescribe anything for pain and said Tylenol should be enough.

He was wrong.  Very wrong. 

I see him in February for the post op appointment. When he's done talking, I may jusk kick him in the man parts till he drops and then toss him a bottle of Tylenol.  

My next blog post could be from jail. 

The Countdown

Well, two blog posts in one week.  That's new.  Usually it's months, sometimes a year between posts. It's 5 a.m. and I can't sleep.  The thoughts in my head needed to come out, and this seemed like a good time to write.

It's 26  hours till surgery time, and I still don't feel ready.  I'm prepared in the sense of button-up clothing, pain med stockpiles and chore schedules for "the others", but I'm not ready for the rest of it.

My boobs never meant much to me before, especially since I'm not particularly well endowed in that area.  Now, however, they mean much more to me than they ever did.  I'm not sure how to navigate only having one.  I never really had a ton of cleavage, but now I won't have any at all.  What's going to catch the crumbs? Where is the boob sweat gonna go when I have a hot flash??  How uncomfortable is that damn prothesis going to be? How will I wear strapless anything when they don't make strapless bras for prothesis boobs?  All things I took for granted, and seemingly superficial, but all valid questions for any woman.

I'm at the mercy of the unknown right now.  I have a fear of something happening during surgery.  I am worried that the surgeon will find more than he planned on finding once he starts.  Scared that there may be cancer in my lymph nodes.  Terrified that this may be bigger than expected.  Holding my breath that the new pain in the other breast isn't also cancer.

Fear is new to me, and I don't like it.

I'm not someone who is accustomed to feeling fear.  I've been through many curveballs in life that brought worry, sorrow, challenges and heartache.  Nothing really brought fear, though.  Until now.  I don't know how to navigate it and calm myself and it sucks

In hindsight, I probably should have made some time for counseling, but I didn't.  With all of the preparation, appointments, paperwork and Christmas, there just wasn't a lot of free time for that.  So, now I have 26 hours to counsel myself for this new reality.   Too bad I can't bill for that, those people make a good penny.

Once again, today I will be leaning on friends and family to keep me away from the ledge.  It's a long drop down, thankfully they all carry a lifeline rope.