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.

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!

Screening update

With every focus on my father recently, I never posted an update regarding my last visit to my breast surgeon, in which she requested a follow up visit because she was concerned about several lumps in my left breast area.  I went back for that follow up and she re-examined and then she said she felt comfortable that it was likely scar tissue from surgery.  She wants to follow up with me again in six months.  That was a good thing, I think.  I recently also visited my oncologist, who agreed with my BSs assessment.  She also ordered for me to undergo another CT of my chest and abdomen as well as a trans-vaginal ultrasound.  All in line with conservative, follow up screening for my “unique” case history.  Cheers to me I guess!  Please wish me luck and good fortune–That I will receive only good results!  My CT and ultrasound are scheduled for December 29, 2014.

Damn my blood pressure!

I have one doctor’s office that operates fairly mindlessly. They are extremely overburdened with patients.  I feel like one of many cattle being herded every time I pay them a visit.  My own doctor there, who I’ve been seeing for five years now (granted I can only get in to see her about once a year, if that), doesn’t even remember who I am.  On my last visit with her she thought I was a new patient.  Seriously, I do understand she has a heavy flow of patients, but damn if I haven’t heard from enough doctors and surgeons how unique my medical history is.  And believe me, being told this by specialists who see unique cases all the time is not in the least bit reassuring.  My case seems to certainly be unique enough to definitely stand out a bit.

Anyway, my only shining light there is my doctor’s nurse practitioner, who I do see more frequently. She always remembers me and what is said in our visits.  She is the one, mindful eye in the whole practice, in my opinion.

Today I had my usual, follow up visit with her. My lack of focus recently with my father’s passing, etc. is clearly present, and lately, more often than not, I’ve overlooked something that I needed to stay mindful of.

You see, women who’ve had double-mastectomies such as me must be careful not to have our blood pressure taken via the arms. This is primarily due to the resection of lymph nodes from our chest area during surgery.  The pressure caused by blood pressure cuffs and other things can cause lymphedema in the arms and/or upper torso area.

Today the nurse mindlessly placed the cuff on my arm and I mindlessly conceded. With every quick squeeze of her hand on the little ball, it grew tighter and tighter.  It felt like my arm was being severed off.  I screamed, “No, you can’t do that, I’ve had double-mastectomies – Get it off, get it off!”  I then quickly pulled the velcroed cuff off my arm and yelled out “dammit!”  I was infuriated with myself, the nurse and their office in general.  At myself for not realizing it until it was already happening to me and with the nurse and practice for continually not noting in my chart this serious thing they needed to be alert about.  Right then I apologized to her, noting my father had just passed and therefore my ability to focus was askew.  I then asked her to boldly note my chart, to specifically add it in the computer while I was standing there, about this very important thing.  Also, as soon as I stepped in the nurse practitioner’s office, I promptly told her this can’t happen again.

Doctor’s offices, particularly nurses need to be more in tune to this. This is something I’m going to look at ways to promote better care of.  Yes, this is something I will work on!  I mean, what if I was taken to the hospital unconscious and no one knew to be careful of this.  My nurse practitioner suggested today that maybe I should think about one of those medical alert bracelets.  I’ll have to investigate this more to be sure that would make the difference.  Stay tuned on this one.

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)

Always Wait to Worry

I had a follow appt with my breast surgeon today.  She noticed two small lumps/nodules near the scar tissue on my left side that she wants to reassess in 6 weeks to 2 months.  She figures it’s related to the scarring and/or my drain site and said since it’s where my left breast tissue used to be, she is less worried than if it were in my right (as that’s where the cancer was).  It makes sense as due to the amount of nymph nodes she took from my left breast, it had a harder time draining than the right.  In any event, I messaged close friends it’s a little unsettling in the news dept., but no worries unless there’s actually something to worry about.  I have to remind myself the docs never take chances with us mutant girls.  Better to be on the safe side of things. ;)

Decoding Annie Parker Review

They changed the date of the movie to May 19th instead of May 22nd.  I went last night for the screening hosted by Casting for Recovery (or CFR – http://castingforrecovery.org/home), an organization that provides fly fishing retreats all over the US for breast cancer survivors of all stages.  You may ask, fly fishing?  But it provides a gentle activity for those who have limited mobility in their chest and upper arms due to breast surgery.  Pretty cool actually!  I can see how good this idea is as I had to do physical therapy after my surgery.  CFR was founded in Vermont by two women, one a reconstructive surgeon and the other a professional fly fisher.  I may apply and learn to fly fish.  Why the hell not–looks to be a totally fun, Zen-like, tranquil experience.

I was worried I might cry at parts of the film, with it matching so closely to my own experience, and I was having a bad day emotionally yesterday anyway.  I didn’t cry though, and actually laughed at a number of moments.  I wish more people would see this film, just to have a better understanding.   Starring Samantha Morton and Helen Hunt, this film is based on true events.  “Decoding Annie Parker tells the life affirming story of two remarkable women; the irrepressible Annie Parker, a three time cancer survivor and the geneticist Mary-Claire King whose discovery of the breast cancer BRCA gene mutation is considered one of the most important discoveries of the 20th century,” (taken from http://www.rottentomatoes.com/m/decoding_annie_parker/). 

I related overwhelmingly to so many parts of this movie, specifically to what Annie Parker went through.  I laughed at the parts where she constantly gave herself breast exams–checking for lumps.  While watching a movie with her husband or at the dinner table with friends.  You can become obsessed with “feeling yourself up” on a highly frequent basis when you know BC runs in your family or find out you have the gene mutation.  I thought, omg, that was totally me too!   I almost felt this was my story and I’m glad such films are being made and recognized today.  It creates so much more awareness around the reality surrounding women with BRCA mutations.

They had a question and answer session afterward with a genetic counselor and a hematologist/oncologist.  I sat quietly and listened as several questions were raised about genetic testing for BRCA mutations, new drugs on the market, statistics and family histories.  While listening to the questions asked and feeling a majority of attendees were of the general population (meaning not having and likely not remotely in danger of having a mutation like mine), I realized at that moment how fairly unique I was.  Not that anyone wants to be unique in this way, of that I can assure you, but it is what it is.  One woman asked what the ratio of having a BRCA mutation is in women.  In the general population (excluding the Ashkenazi Jewish population) it’s 1 in 400. 

 

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.

 

Damn old fart – WHAT?

So my hair is coming back.  Yay!  Only thing is it appears to be coming in gray with white hairs here and there.  Yikes!  I’m not old yet–Way too young for gray and white hairs!!!  Ugh! :-(  I guess at least it is coming back in.  I’ve noticed my eye lashes and eye brows coming back too.  I had another follow up with my surgeon today and so far everything looks good and seems to be healing fine.  That’s all good news!

No pain, No Gain

Dag-blamitt! :-)  I’m still having significant pain issues.  Why does it take so long to heal?   I’m ready to start implementing changes and getting into a good fitness routine.  That’s hard to do when your body doesn’t yet want to cooperate.  Some things I can start implementing.  Now that I found my wallet, it’s time to revisit Trader Joe’s and get transitioned to a more macrobiotic/raw foods based diet.  I feel I’m just going to have to work through the pain, grin and bear it so to speak, as that may be the only way to heal.  I have to move the upper part of my body.  I think if I’d chosen a full mastectomy vs. skin-sparing, I wouldn’t have such pain issues.  I think the majority of the pain comes from the remaining skin bunching and adhering to the chest wall, basically scar tissue type pain.   Hopefully, I’ll get into the Star Program at Seton Hospital that my oncologist’s office has referred me to and start physical therapy to get me into better shape to start a good fitness program.