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.

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)

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.

 

The Precipice of Change

On my journey of transformation, a massive, vertical cliff of discomfort and change calls to me.  It says, “come climb my steep, hard surface.  It will be very difficult and perilous, but not impossible.  Here is where the real work begins!”

The past week has been rife with supposed conflict and negativity, and my moods have consistently spiraled downward.  However, if I step back and look at the bigger picture, all of it is pushing me further toward unprecedented change, both internally and externally.  Like a carefully composed opera.  I’m actually being forced to step out of my comfort zone and clearly choose which way I will go on the road ahead. 

I’m a fairly stubborn person (to a fault and in all the wrong ways) and, even in misery, have become quite comfortable in my own situation.  It’s not even close to being the life I desired for myself, but it’s been familiar and comfortable.  I settled into what I believed I deserved.  Now, something out there, or in here, wants to quash those believes.  It doesn’t want this same existence for me.  God, the Universe, that inner seed–Once it starts growing, there’s no stopping it.  The seed of change has sprouted!  Now, I must love it, water and feed it, and call it George :-), so that it will flourish. 

I’ve had to make some incredibly hard choices in recent years, and more to the point, heavier, heartbreaking sacrifices–but they didn’t kill me.  Write it again–They didn’t kill me.  I choose whether my life will be diminished by these events or not.  I can’t kid myself, some days are undeniably hard.  Some days I can barely get out of bed, but I do.   Now I’m trying to face those days while looking through a more open and honest lens.  It doesn’t always work.   

I think some people may think that I’m done with the bad stuff–the hurdles, I survived the cancer.  I’m good now.  But that’s so far from the truth.  Yes, I’ve won that battle for now; but I’ve been seriously wounded and still standing in the full midst of the war.  Like a storm still in full force.  Yes, I survived that massive wave.  It didn’t take me under, but I’m still being rocked this way and that with an, at least perceived, ongoing threat of capsizing. 

Time to climb the precipice.

zion-national-park-1024

System overload–Possible shutdown soon

So, this is where I’m at right now.  About to make what feels like the most crucial, life altering decisions of my life–not that I haven’t already been here before multiple times.  This time it’s different–So much more intense, and close!  The decisions seem more brutal and overwhelming even though I’ve known of these possible scenarios for some time.

I’m still currently not a candidate for immediate reconstruction and my doc is not content on waiting any longer, saying that radiation several months from now won’t be the same as doing it right after chemo.  I know she’s right.  So here are my choices:  (1) do bimx now and delay reconstruction [With this I’m faced with more scarring, more surgeries and giving up a huge, physical part of my sexuality as a woman, at least for a time in delaying reconstruction (I already have a hideous scar from my panc surgery that still needs to be fixed.  Can I also conquer the part of me that still sees my identity as a woman wrapped up in my having breasts?); however, I’d be gaining the most benefit in combating an exceptionally high recurrence rate of a very aggressive, hard to treat cancer that so far, in my case, they caught in its earliest stage with no lymph node involvement]; or, (2) I can still take the easier route of radiation knowing I’d be delaying bimx/recon even longer and still playing with the risk of recurrence, secondary or contralateral breast cancer (highest rate within 3 yrs).

No-brainer, right?   Currently, and quite bizarrely, studies show mastectomy vs. lumpectomy with radiation to have the same survival rates.  The latest studies showing lumpectomy with radiation may even be a safer bet.  Again, though, I’m in the “you got really genetically screwed” category so not sure how much of these studies are based on BRCA1 mutants.  As Nurse Pat at TxOnc told me Thursday, “you don’t have an old person’s cancer, you have a young person’s cancer, which is more aggressive.”

Before you judge or say, “I know what I’d do,” just remember you are not walking in my shoes!  Sometimes having to make the choice seems harder than not, even though you know that having the choice is certainly better.

Can my psyche handle the decisions I’m faced with, now and after?  I don’t know.  I just don’t know.  A friend stated earlier today, “Whether your psyche can take it won’t matter much if you’re gone.”  She’s right; I just have to get in the right headspace about it all.  I have to go through the emotions and the continual processing of it all.  Its torture I tell you!  I have further consults with the RadOnc and my breast surgeon so those will hopefully help in my decision process.

Honestly, every aspect of my life is totally fubar at present and I feel like I’m in system overload and about to seriously shutdown at any minute.  You know that saying about God only giving you what you can handle?  It’s total crap in my book!  One friend brought that exact phrase up to me last year and then said, “God must think you can handle an awful lot.”  I hate hearing the phrase now!  Sorry, I know I’m being a complete downer in this post, but it’s where I’m at and it all should be captured, not just the upbeat, inspirational stuff.

Please send warm thoughts and wishes as my coming days, weeks, months, and possibly years will be harder than I can conceptualize right now.  As if I haven’t already been through the ringer on a consistent basis, well for as long as I can remember now.  Where is the light at the end of this dark tunnel?  Is there one?

UPDATE:  In going back and re-reading additional research articles, doctors opinions and posts from women on the triple-negative foundation forum, those few of us who are BRCA1 with TNBC present with greater risk of recurrence regardless of surgical choice or staging.  TNBC is scary, nasty and tricky.  It doesn’t play by the rules.  “TNBC may harbor more microscopic residual disease” and therefore mastectomy more highly recommended, but not necessarily a safer bet.  It is still possible for microscopic cells to travel to distant sites, be found in residual breast tissue or lymph nodes even after treatment for stage 1 diagnosis and/or bilateral mastectomies.  Conclusion, double mastectomies could save my life or I could be damned regardless.

I’ve never shied away from learning the hard facts.  Information is power, even when it’s difficult to take in.  That said, I’ve read some of this before, but I just didn’t want to believe it.

A woman’s choice of what she is most comfortable with still applies.  Some women have lumpectomies and never get TNBC or other type breast cancer again and some have double mastectomies at an early stage or even prophylactically (preventive, before cancer) and are then diagnosed as stage 4.  As with the rest of life, I guess, it’s all a crapshoot.

Trudging

So, slowly over the course of the day I’ve stopped crying.  I’m trudging with heavy foot and brow.  How literary of me.  I had to seek out further inspirational quotes, like the ones I’ve already added to my sidebar aren’t enough.  Anyway, added more, which I think helped a little to bring me back to an acceptance-type state of mind.  I don’t know.  If I didn’t have these crappy, emotional days, and express them here, the good days wouldn’t seem to count as much.  None of us can be strong all the time, and who really wants to be.  Sometimes things just suck and its hard, so hard.  I’m not out of the woods and all the inspirational quotes in the world don’t seem to help the process move any faster.  Sometimes things just suck!  

But, hopefully, after the smoke clears, I’ll get up again.

Tears

My bad days have lasted longer this time.  So long.  Maybe they gave me a double dose this time knowing it’d be my last.  Out of work for three days.  I think my firm is ready for me to take a flying leap.  Today is not a good day.  Their recentment shows!

I’m having such a hard time and I can’t stop crying.  I just can’t stop.  I’m supposed to pull it together and be strong.  Inspiring, right? 

No, this all sucks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Last of the toxic waste dump days–hopefully

The past two days I think have been the worst of my bad days.  Thank God that was the last of my AC treatments.  I feel like death warmed over.  I start Taxol in two weeks.  I’ll have 12 weeks of that, but my doctor and nurses said the AC is supposed to be the worst of it so I’m hoping the Taxol will be smoother sailing.

Zombie mode

Aside from stepping out my front door to greet my brother, sister-in-law and nephew on my front porch, I’ve been held up inside riding the wave of bad days.  Movies and TV galore.  You can never see enough Law and Order SVU.  I did rent “Warm Bodies” on PPV.  I have to say, I’ve been sick of the overkill of zombie movies in recent years, but Warm Bodies was a refreshing surprise.  Love the angle of corpse’s point of view.  Loved it! :-D  Feeling better and plan to be to my old self tomorrow.

On another note, diet plan has been difficult.  It seems what I desire most during bad days is fruit.  Citrus, water-filled fruit!  May need to rethink cutting fruit altogether.

zombie