Working during Treatment

Recently I was asked to write about my experience in continuing to work while going through treatment for breast cancer, and my thoughts on ways supervisors may be able to best support employees with short-term or chronic illness.

As I wrote in a previous post, although my direct, administrative manager and co-workers were very supportive throughout my treatment, my direct principal created a harsh work environment for me. This brought undue stress. However, I played my part in allowing it to continue.

Many people have to work through their treatment, and there are laws in place to protect employees from discrimination during short-term or chronic illness. Here are several links that may be helpful when faced with employment issues during a serious illness:

www.cancerandcareers.org

cancer.net/survivorship/life-after-cancer/cancer-and-workplace-discrimination

livestrong.org/we-can-help/managing-your-life-during-treatment/employment-issues

I think the biggest factor is that there is fear on both sides. Fear from the employee over potentially losing their job or losing various aspects of their job, and fear from the employer of diminished job performance from an employee while they are going through treatment (and possibly after treatment).

While it is a personal decision on the part of the employee about how much information, if any, they decide to share with their employer, supervisors and co-workers, I do believe communication is key here. Employees and their direct supervisors should be willing to develop a positive, ongoing rapport about the employee’s work environment, treatment regiment, potential side effects, needed time-off, alternative work accommodations and possible work goals throughout and after treatment.

It may be beneficial for direct supervisors to better inform themselves, in general terms, about the type of illness an employee faces, the types of treatment, side effects and possible complications associated with that illness. Being more informed may help them to better support an employee who is going through treatment.  Keep an open mind and heart.  All businesses have a human element and this is a time to focus on that.

Trust is needed from both sides to bring positive results.  If an employee feels supported, they are more likely to return 110% or more in job performance and productivity during and/or after treatment.  Employees, in turn, need to be forthcoming as to their capabilities and limitations throughout treatment.

I will state, however, that there is a fine line.  I can attest to having divulged too much information at times.  Unfortunately, I don’t believe anything would have helped my particular work situation.   On a number of occasions I spoke with my direct principal to better inform her of my status and efforts to maintain good job performance and a positive work relationship between us only to have her dismiss all of that later.

It can be difficult to continue working through treatment.  Chemotherapy and surgeries, side effects and complications, constant doctor appointments, being poked with needles on a daily basis and all the serious medical decisions can be emotionally, physically and psychologically draining.  It was for me, and working in a harsh environment did not help.  Unfortunately, financially I didn’t have an alternative.  My MedOnc wanted me to take three to five months off for chemo, but this single girl had to pay the bills.  I will say, however, that going to that job every day (aside from treatment and sick days) gave me a sense of purpose and did help me combat some of the side effects of treatment, such as fatigue and depression.

I hope the above information helps someone out there.  Every situation is different and should be handled with care.

Lost

A blessing in disguise. The job change in February was not a good fit (turned out to be more hours, more stress, etc. etc. – the complete opposite of what I was looking for). It was a sign. Even though I would be giving up good pay and benefits, I decided I could no longer live in misery working in the legal field. I had been so unhappy for so long. Honestly, looking back, I had been sabatoging myself at every turn for several years. Eventually, inevitably, it all finally fell apart.

I knew I didn’t want to go back to the legal field, but I was also having a hard time moving forward. I had no clue and felt seriously exhausted after six years battling health issues, making life-altering decisions, caring for my ailing, elderly father and his eventual passing this past December; and then the grief of it all.  So much loss. Add what seemed like the demise of my career and well, it felt like I had hit a very big wall going 100 miles an hour.  

Honestly, all I wanted to do is crawl into a glass box somewhere far inside a wilderness and fall into a deep, deep sleep for about a hundred years–like Snow White after eating the poisoned apple.  This is actually how tired I felt.  Completely exhausted.

So for the past six months, I’ve been in a place of limbo–lots of sleep, depression and a state of just feeling utterly lost. To ensure I could pay my bills, I’ve been driving for Lyft. I decided I would work for myself and become a virtual assistant and notary signing agent. I even created a website and started to develop clients. This is something I could still eventually pursue. However, at present my heart just isn’t in it. I need meaning in my life. Work that compels me to get out of bed every morning.

Recently, an opportunity has come available working with other young, breast cancer survivors. Yes-meaningful work! I am trying not to get my hopes up too much as I had also fallen back into very unhealthy habits. However, I do still have a shot at this. I have a second interview in a couple of weeks. More on this later as I don’t want to jinx myself.

I know this phase of limbo is meant to catapult me in a new direction, but it has been slow going and I have seemingly been working against the tide instead of flowing with it.

I ask for prayers that I’ll find my way.

Lots goin’ on

I think I recently wrote about the upcoming ultrasound on my left breast.  I’ve had that, and they also did a mammogram on what little remaining tissue existed to squeeze into the mammo machine.  The radiologist’s findings were that one of the lumps felt appeared to be an oily cyst, similar to a pimple.  The more prominent lump appears to be necrotic fatty tissue.  The nurse who gave me the results stated these lumps should eventually be reabsorbed by the body.  They’ve scheduled for me to have a follow up ultrasound in six months.

Also, I’ve never posted here, but the past two years I worked for a ‘horror of a human being’ type boss.  One that threw me under the bus during chemo because “I was out too much for cancer treatment.”  This is something she told me directly.  I endured her crass, shallow and uncaring behavior time and time again.  I finally had, had enough after my father died, and sought out a new job.  I started my new job yesterday and am so, so excited about it!  More pay, my own office, better hours and less stress!

To top it all off, I had an article/blog post published on tinybuddha.com today.  Here’s the link:  http://tinybuddha.com/blog/life-gets-hard-keep-moving-forward-one-step-time/

Things are looking up!  Now I just need to get my workout going and get back to a good eating plan and start really losing this excess weight.  At least I’ve turned the corner and started a new chapter!  So long, old chapter – you taught me a lot but I need to keep moving forward!

Soul-Survivor

I haven’t written here in weeks, maybe a month.  Truth is I’d lost the desire to continue chronicling my journey.  I’ve found it so difficult not to slip back into old, bad habits–A way of punishing myself and/or still trying to cope, miserably, with life’s hard knocks.  And I’ve definitely noticed the more I slip back into the bad, the more numb I become to it all, only adding to the vicious cycle of self-loathing.

A friend reminded me today that I needed to continue the blog and continue writing my book.  I certainly haven’t been giving myself enough credit recently for everything that I’ve gone through, and instead let incredibly small-minded people who’ve only spent very fleeting moments in my life get the better of me.

I’d like to say living through a very serious, pancreatic operation and 6 month recovery, or surviving breast cancer, double-mastectomies and all that accompanies it (which is a hell of a lot!  You just don’t know) were my biggest obstacles, but they are not.  I have always been my biggest obstacle—my addictive habits (that are killing me slowly), my continual relapse into negative thinking, my lack of will power and self-discipline.  Am I courageous?  I don’t know anymore.  I’ve always been strong.  I’ve always had to be strong, but the courage part of it comes and goes.

Here is where I start again.  Maybe God will allow me time and grace to climb back up the mountain after having fallen so far down, yet again.  I just have to keep on keeping on.

I was listening to Queen’s ‘We are the Champions’ this morning on the way into work.  This will be my new theme song for a while.

“We Are The Champions”

I’ve paid my dues Time after time.
I’ve done my sentence
But committed no crime.
And bad mistakes ‒ I’ve made a few.
I’ve had my share of sand kicked in my face
But I’ve come through.

(And I need just go on and on, and on, and on)

We are the champions, my friends,
And we’ll keep on fighting ’til the end.
We are the champions.
We are the champions.
No time for losers
‘Cause we are the champions of the world. …

(Taken from azlyrics.com)

Time to turn onto a new road

I realized this morning that a large part of my grief and depression lately has been based around certain expectations that I had for my life not coming to fruition for whatever reason.   The road is far different than the one I thought I’d be traveling down at this point in my life.

path less traveled

I started my bucket list about 5 years back, before all of my crazy, health stuff.  Everyone around me keeps saying ‘health issues.’  “I heard you’ve had some health issues.”   Health issues?–So polite, or is it? I don’t know why that term bugs me so much.  I had cancer, that’s what I had.

I don’t know what will happen with the surgeries, my body, whether I’ll be facing more ‘health’ scares in the future given my BRCA1 status; but I have to start living again, or maybe for the first time.  I decided today that while focusing on losing the weight and preparing for my additional surgeries, I’m going to accept this reality and look forward to taking the road less traveled.  I need new things to look forward to.  Maybe I’ll sell everything and go out and see the world.  All I know is it’s time to pull out that old bucket list and start making plans and set new goals for a new life–an unexpected life–and just see where it takes me.  Here’s to hoping new adventures await me, far beyond my expectations.

 

Stuck in conversation with George

It’s taken me a while to think of a title for this post.  I feel like, particularly recently, my head space is in up and down, mostly negative states, but also very revealing–So much clarity.  This is where I’m at though.  I can’t deny that.  This is a massive part of my journey.  In fact, the most important part, and I’ve been struggling deeply with this pain.   I don’t particularly have any friends named George, but I wanted the title to at least present as a little more positive than the rest of the post, so I decided to give my “emotional pain” a name.  George is a good name. 

This has been a time of serious grief, sadness and overall pain for me; not just for the major events I’ve just faced, but a lifetime of heartache that I haven’t allowed myself the opportunity to really grieve or work through without tearing myself down in the process.  I’ve placed so much shame and unworthiness on myself.  Instead of knowing how to parent myself through chaotic events, I allowed a side of me, an enabler, to grow stronger.  If it felt bad, my enabler would say, “it’s okay, have that piece of pizza or cheesecake, smoke that cigarette or have those 3 or 4 glasses of wine.”  How cunning this enabler became. 

I’ve had weight issues most of my life.   Although I was a thin and athletic as a child, the weight problems started while my mother was in and out of the hospital going through cancer treatments.  I guess I was around 10 or 11 when it became noticeable.  I was just a little chubbier than the other girls.  I was 12 years old when she died.  I remember people bringing casserole after casserole to our house.  Our fridge overflowed with them.  From out of these events my addiction to food was born.  I’ve spiraled between thin and fat (mostly fat) ever since.  I don’t think I’ve even recognized myself in a mirror, or in pictures (and those are the worst at giving you a reality check), in 10 or 15 years, maybe more.

Throughout that time more life-altering events occurred–hard, heartbreaking events, and George got fed.  George grew stronger and gorged himself whenever possible, and my addiction festered.   What a lie, a joke I played on myself for so long.  As if food was my comforting friend and my fat a wall of protection from everyone around me.  What cruel deceivers.

I suffered what I believed to be a fairly major rejection this past week, but one that I needed to happen, and the timing of it was quite perfect.  Honestly, I set myself up for it, likely intentionally.  I’ve noticed I tend to do that when things in my life are askew, which is all the time.  I basically acted like a complete, desperate jackass.  I always created an awkward atmosphere around this particular person, which had more to do with everything I’ve been going through; but, it wasn’t something I ever communicated to him.  I know my awkwardness made him uneasy.  Luckily, the rejection forcefully knocked me back into reality.  Though it was a crushing blow to my fragile ego and amplified George’s existence, it ultimately was the exact thing I needed to push me into recovery.  I’m not saying I’m cured or have it all figured out, but for me, the past week or so has meant 10 thousand steps in the right direction–extremely painful, yes, but necessary.  Adversity truly is our greatest teacher.  Everything in life is Teacher, remember that!

Numbing while in Hyperdrive

When you decide to rid yourself of all your numbing vices, reality IS a bitch.  Need I elaborate?  The whole point of numbing one’s self is to escape reality, in particular, the pain of it.   Cancer or not, life can be incredibly painful and you have to feel it at some point.  All the numbing agents in the world can’t make it go away.  Well, I guess they can for a while, otherwise we wouldn’t do them, but in the end they only make everything worse.   Then you find moments of clarity when the question arises, “WTF, how did I get here?”  Like whole blocks of time were erased from your life.  But they weren’t.  You just weren’t paying enough attention.  You were numb.

It’s true, you simply have to move through the pain.  At some point you have to stop, FEEL IT and move through it.  It really is the only way.  It’s certainly a process though–Not a 24-hour turn-around type task.

I’ve been seeing a counselor to help me sort through all of this.  She is also a breast cancer survivor.  The social worker at Texas Oncology was able to get me in to see her through the Flatwater Foundation (http://flatwaterfoundation.org/).  My counselor said I’ve had so much going on for so long that I haven’t had time to grieve any of it.  I’ve literally had one major crisis to handle after another, back-to-back, for the past five years.   And these aren’t like, “hey I just broke up with my boyfriend” type crises, I wish.  These are “I have to think about removing organs from my body or I might die” type crises.   Serious life and death situations back-to-back for 5 years.

In August 2009, my stepmother passed away from advanced melanoma.  About seven or eight months before she died, around January/February 2009, I was diagnosed with a very rare, pancreatic cyst.  My father also needed a lot of assistance during this time with my stepmother’s illness and passing.  Then in the fall of 2009, I also assisted my father in his battle with her four daughters over his life estate in the house.  This was all very stressful and I was way too in the middle of things, a place I really didn’t want to be.  However, at that time I felt I had to help my father.

Upon being diagnosed with the pancreatic cyst, I began meeting with specialists and surgeons and was having tons of testing and blood work done.  Two years of trying to characterize the cyst, this entailed a number of endoscopic procedures and biopsies.  Then came the decision to do pancreatic surgery and finding a specialized surgeon for that (I ended up going to Houston).  In the middle of all of this I finally did the BRCA testing, which came back positive for a BRCA1 mutation.

Once you’re deemed a BRCA mutant, you are automatically placed in the cancer pool and they start watching you like a hawk as it’s only a matter of time in the medical community’s mind before you get it.  I started seeing a medical oncologist regularly.  One of the top in Austin.  Then started the serious breast screening, the first being a breast MRI (it would switch between that and a diagnostic mammogram every six months).   With the first breast MRI came a huge scare from my medical oncologist and breast surgeon that they’d found not one spot, but four in my right breast.  At that time, they all turned out to be false positives, but you can’t imagine what the stress of not knowing and waiting for results does to a person over the space of a week or two.  They nearly called off my scheduled, pancreatic surgery in place of possible cancer treatment for the breast.

2009 and 2010 were a virtual maze of dr. appts, tests, research and decision making.  My pancreatic surgeon also presented me with the option of removing my ovaries at the time of having the pancreatic surgery.  That alone took a good while of serious contemplation, research, decision-making, consulting with all sorts of medical professionals (including finding a gynecological oncologist surgeon for the procedure), talking with other women with mutations, going to conferences regarding BRCA mutations, tons more research, making pros and cons lists, getting advice from friends, digging deep and “going to the mountain” so to speak, etc. etc.  I was only 36 at this time.

After finding out my breasts were okay but still possible ticking time bombs, I then had to make the decision to follow through with the distal pancreatectomy with splenectomy and possible bilateral oophorectomy (mind you, the pancreatic surgery alone is deemed very dangerous.  I was told by several doctors and general surgeons that they are told in medical school to stay away from the pancreas.  My gastroenterologist basically scared the crap out of me for two years, always with a line like, “you’re young, you’ll probably live through it.”).

November 2, 2010, surgery day, this went fine initially.  And then about a week or so after started the massive complications–almost 6 months worth.  I came close to dying several times during this period.  You can’t imagine how brutal this was.  Now I’m considered a Type 1 diabetic and I have a major, complex abdominal hernia and gruesome scar that still need to be repaired.  By the end of 2011, I started scouting various surgeons for the hernia repair and preventive, plastic surgery for my breasts.  My biggest issue being my weight.  All the surgeons wanted me to lose a significant amount before going ahead with the surgery.  Best results are at ideal/goal weight.  I’ll tell you now; this is easier said than done, having battled weight issues since my early teens.

Then in 2012, I had to make the decision to make a job transition.  Not something I wanted at the time, but felt pressured to make.  This was huge in itself as I’d been working for my previous firm for 12 and half years and could have easily settled in and retired from there, but I was a little restless regardless and my firm started downsizing so I sought work elsewhere.  Right after starting in my position with my new firm, I traveled to Boston for a friend’s wedding and got into a car accident.  Although no one was injured, this in itself turned into a months long, stressful and chaotic situation for my other friend and me as we battled with the rental car company, other driver and insurance companies.

Also within this time, around March 2013, my father had massive, congestive heart failure and was in the hospital and a nursery facility for 6-8 weeks and then needed assistance after returning home.  This brings us to the spring of 2013 and my breast cancer diagnosis and subsequent lumpectomy, 5 months of chemo and double mastectomies, from which I’ve only been recovering since January of this year, 2014.

In February of this year my father fell, fractured his skull and suffered severe bleeding in his brain.  He has spent weeks in the hospital and now doing rehab at a nursing facility.  My brother and I have been sorting through and dealing with his finances and personal needs.  All of which my father has made more difficult for everyone around him–Never thinking ahead, but letting things fell apart and leaving us to pick up the pieces.

In the midst of all of this I’ve personally struggled financially, was failing in the performance of my new job and let all the ordinary maintenance of relationships, home and life fall by the wayside.

Now my counselor says that since some of these burdens have been lifted from me, my brain, heart and body have made way for some sort of extreme grieving process, of which I’ve only started.  It’s very hard and feels like a lot of emotional baggage.  Very saddening and it’s hard to pull out of a depressed state.  I veered off the road at some point and am now lost in the woods.  I am focusing on trying to maintain my new eating plan, daily exercise and I’m back to taking my daily supplements.  However, I currently still feel like I’m mired neck deep in negative, sad, angry and bitter feelings and thoughts.  Almost like I can’t see straight–Just plain screwed up.  I’m trying to find my way out of this darkness as I don’t want these feelings to stay.  I have to find a way of accepting and moving forward.  It’s a bitch to say the least!

All this time I’ve been stuck in hyperdrive, just trying to survive and make it through things.  It’s only when we slow down that we are able to assess the damage.  The loss of what I anticipated life to look like.  The loss or delay of anticipated family and happiness.  My counselor says these things are still possible.  It takes getting past believing it’s all fubar.  Transformation has its setbacks.

 

Removing ovaries cuts risk of death in gene carriers (USA Today)

Liz Szabo, USA TODAY 4:03 p.m. EST February 24, 2014

Removing ovaries cuts risk of death but causes serious side effects.

Women who inherit mutations in high-risk genes that sharply increase the risk of breast or ovarian cancer can reduce their risk of death by 77% by having their ovaries removed by age 35, a new study shows.

The study involved mutations in the genes BRCA1 and BRCA2, which cause 5% to 10% of breast cancers and 15% of ovarian cancers, according to the National Cancer Institute.

Up to 70% of women who learn that they carry these mutations choose to have their ovaries removed to reduce the risk of ovarian and breast cancer, research shows.

In the study, in Monday’s Journal of Clinical Oncology, surgery offered different benefits based on the exact mutation.

Women with a mutation in the gene BRCA1 get the clearest benefit to ovary-removal surgery by age 35, says study author Steven Narod, a professor of medicine at the University of Toronto. His study didn’t find any ovarian cancers in women with BRCA2 mutations until age 40. So BRCA2 carriers can likely wait until age 40 for ovarian removal, he says. … [click here to read more]

Off with the wig, Baby!

Okay, so this morning I decided it was time to go rogue at work, so off with the wig!!!  Finally!!!  They are so hot and itchy!  My hair is still super, super short but at least covering my head enough, I think.  I’ve gotten rave reviews from my co-workers, so that’s good!  Here are a few wigless selfies I took today at work.  Wig be damned!  Yay!

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