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.

 

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.

The Odd Couple

So, the pain is still fairly prominent.  Since I’ve gone back to work, I’ve resorted to popping Tylenol and Aleve.  The prescribed pain medication makes me way too sleepy.  It’s not just the pain.  It’s the totally bizarre feeling of having to get used to a hallowed, morphed chest when you’ve been used to having boobs.  Not just boobs, but D cups.  The prosthesis doesn’t really mask the oddity of this feeling either.  And it seems just as bizarre to have pain and numbness at the same time.  Since my surgeon left the breast skin envelope, it’s all adhering to the chest wall, only there’s so much that it’s bunching up in places.  She did state this would happen.  It’s most annoying at the sides where my arms brush against it.  She stated that if needed, she could go back and take off more of the breast skin that was left, but leaving it this way for now will likely give me better recon results, so as long as I keep in mind this isn’t permanent, but very temporary, I’m okay.

The good news is I found my wallet.  It was on my kitchen table in a bag of firestarters. :-)

Off to Slow Start, but Back to the Grind

Well, I’m still very much in the process of healing.  Today was my first day back at work and now it’s the end of the day and, man, I am so, so sore.  OUCH!  All I want to do is go home, take a hot shower, maybe build a nice fire and climb into the blankets sprawled across my living room sofa.

What can I say about being back at work–?  Apparently, I think it’s been pretty quiet.  Most everyone has been gone or traveling on business.  Everyone seems to be happy to have me back, although I should have tried for the rest of this week off and came back on Monday.  Oh well! :-(

I’ve been hesitant on starting a rigorous meditation/cleanse/yoga/fitness program just yet, at least not until I’m more healed from surgery.  However, today at lunch I decided to get my healthy eating plan started so I ventured to Trader Joe’s.  I spent my entire lunch hour filling my basket with yummy, organic produce, fresh fish and lean chicken.  I was so stoked on stocking my fridge tonight with all this fresh produce.  But it wasn’t meant to be.  As soon as I got to the register, I realized my wallet was missing from my purse.  No cash, lone credit card or check book in sight.  I was completely without monetary means to buy all the yumminess I’d just spent an hour loading into my cart.  Crap!  I hate it when that happens.  What a letdown!  I just hope my wallet is, like, sitting on my kitchen table or something.  Yikes!

Speaking of fitness programs though, my oncologist’s office has referred me to physical therapy to get more rehabilitated before I begin a more rigorous fitness program.  I’m sure that’s best.  After the year I’ve had, I’d like to ease into the best healthy living and fitness for me.  I think that’s the best approach if I want this all to become full-on changes for the rest of life.  Going at something full-force sometimes leads to failed results and I’m not in a place to be pressuring myself.  I need to take it smooth and easy, at least to start.  I realize I need to start setting small goals, but I’m not about to pressure myself with 3-mth, 6-mth, 1 year deadlines, at least not just yet.  I realize 2014 is all about transition for me.  That’s what I need to pray most about.  Let there be transformation, God!!!!  Tons of transformation!!!!  So much so, that no one will recognize me.  So much so, that I won’t even recognize me!!!!

Another battle won

pinkbraWell, I’ve survived M-day!  I honestly thought I’d be an emotional wreck, completely devastated, but a funny thing happened when I woke up from surgery.  I was crackin’ jokes and in good spirits.  I have cried a bit, as I think there’s no way around that.  It is a loss and you have to mourn.

I wore my hot pink, push up bra to my mastectomy surgery, which seemed most appropriate.  Other than that I strived for comfort.

I’m still really groggy, pain meds and all.  I told myself I’m never gonna look at my chest again, but then I catch myself sneakin’ a peek.  I can do this!

I can tell you one thing, if you’re ever in need of mastectomies and in the Austin area, St. David’s HealthCare off Red River and 30th is the place to go.  Best hospital I’ve been to and I’ve been to a few.  The nurses are all excellent, the food is restaurant worthy–really good and you kinda feel like you’re at a resort.  My favorite thing is this awesome water bottle/cup they give you.  I’ll be using this sucker like crazy!  Love it!!!  Ah, the things we can be amused by.

StDavidsCup

December 5th

I drove to San Antonio yesterday and met with the plastic surgeon, Dr. Minas Chrysopoulo at PRMA Plastic Surgery, regarding my reconstruction options with respect to the DIEP procedure under a delayed recon scenario.  I’m still not fully decided on the method I want but I will have time to think on that later.  The consultation went far better than I anticipated.  I was dreading it at first since things weren’t improved for me from my last visit with him, but from the start he was very understanding and compassionate and added I’ve been through quite a lot the past few years and I needed to give myself a break.  He felt I was making the right decision, stating that I was being very logical about it all and that if I were his wife, he’d tell me to do the same thing.

He first stated that reconstructively, particularly with flap procedures, they have no problem working with radiated skin.  However, the benefits of going ahead with the mastectomies and delaying reconstruction, even with more scarring, far outweigh having radiation, simply due to potential, long-term health effects that can be caused by radiation.  He was also very pleased to hear my breast surgeon is breast conservative and reconstructive-friendly and the method she plans to use sounds like a very good one.  The one downside being the fact that I’d have to mentally prepare myself to live in this state for a period of time, which will take some considerable mental and emotional strength, but with a continued understanding that it is just a means to an end–That it all can and will be fixed.

We mapped out options such as utilizing expanders, but in the end, after various scenarios were discussed, we both felt given my understandable fear of surgery and current potential for complications, having the mastectomies alone and making time before reconstruction was likely the best way to go.  He also stated he didn’t have any problem with having my complex hernia repair done at the same time as the revision surgery (2nd stage of recon).  That made me feel better too, as that means one less surgery and he can make everything cosmetically more aesthetically pleasing.  All in all, the consultation went really well and made me feel better about moving forward with my chosen course.

I then made it back to Austin for my pre-surgical testing.  Later I attended my firm’s holiday dinner.  It was at Eddie V’s.  Everything was delish and we all had a good time.

The Breast Dilemma

So, I’ve pretty much accepted surgery as the logical, smart way to go here; and I’ve resigned myself to the fact it’s going to happen.  In fact, I’ve already scheduled for it.  December 10th.  So close!  I’m already starting to have anxiety about it.  Maybe my friend, Beth, is right, “just rip that bandaid off quick.”

It’s weird, even though I know of my mutation and triple-negative cancer, my brain wants to find any other possible option.  Even with how long I’ve known of this potential fate, it’s so hard to accept, even now, with everything I’ve been through and everything I know about it.  It’s so crazy how much the brain resists, even though I know it’s the right decision and best chance I have.  I guess it is the obvious reaction of the brain, I mean, we are talking about lopping off parts of the body here.  I guess I should still count myself lucky as many women don’t have the choice and/or have to endure both radiation and mastectomies.  Hell, I may still be looking at same depending on how my pathology comes back after mastectomies.  Some woman request radiation even after mastectomies and chemo, and against doctors recommendations because they want to choose absolutely every weapon in the arsenal.  Personally, not sure if this is helpful or overkill if not recommended as radiation can have it’s own significant short and long term effects.

I’ve met with my breast surgeon and feel comfortable with what she’s said, although I still need to consult with the plastic surgeon as well.  I also met with the RadOnc and felt good about the consultation and my brain does see it as the easier route in the short term, but I also feel radiation is likely a treatment to avoid if at all possible.

Fortunately, I was able to get an appt with the plastic surgeon I’ve chosen to do my reconstruction.  I’ve met with him previously, but feel it’s probably best to do another consult to make sure everyone is on the same page pre-mastectomies.  It’s really close to the actual surgery date though, so I hope everything falls in line as it should.

I decided, aside from divine, spiritual guidence and deep contemplation, to put together a little pros and cons list to help me with my decision making.  Thought I’d share here:

BiMx w/DELAYED Recon

 

Radiation

PROS

 

CONS

 

PROS

 

CONS

Most significant risk reduction for cancer recurrence, 2nd cancer or contralateral cancer of the breast
***
Loss of breasts for a period of time until recon
***
Allows me to keep my natural breasts for a longer period of time while I work to become better candidate for immediate recon
***
Risk of recurrence, 2nd cancer or contralateral cancer still significant
***
Closer to new boobs (1st surgical step done), which means LESS complications, risks, surgical and recovery times when recon happens
***
2-3 week recovery time
***
Approx. treatment time –
5-20 mins max each day, therefore can do before work or on lunch hour
***
5-6 weeks of every day targeted radiation
***
Will force me to recognize I am NOT my breasts
***
Will have to wear prosthetics until recon
***
No immediate surgery or time off from work
***
Short and long term effects
***
Will force me to become fit and healthy
***
Possible, significant, psychological damage–
On the plus side, may force me to learn to detach from my earthly, egoic mind and deepen my spirituality
***
Will have to continually moisturize radiated area every day for life
***
Will force me to re-evaluate my life in its entirety
***
No guarantee BC will not recur
***
Limits reconstruction options (size, type of recon, etc.)
***
More time to get healthy without full worry of immediate cancer recurrence or unrealistic deadlines to contend with
***
More scarring than with immediate recon, but would have scars regardless
***
Recon may need to be delayed even longer in order for radiated skin to heal
***
More time to evaluate best recon options/surgeons – Dr. Chrysopoulo still top of list!
***
May limit future treatment options
***
Less surgery at one time, less to be fearful of–Baby steps!
***
Why add an unnecessary treatment if you plan on doing bimx/recon anyway
***

 

Sorting through it all

I hung out with my friend, Connie, on Saturday.  We grabbed some lunch, did a little shopping, got a mani/pedi, and then had a little dinner.  She brought up a crucial point I must consider in making my decision.  I have to think about which choice will not limit my future reconstructive or treatment options.

You can only have so much radiation in your lifetime.  They cut you off after a certain amount.  Makes sense–Who wants to spend the rest of their lives glowing like a neon light bulb and irradiating everything in their path.  Radiation may also limit my reconstructive options.  Plus, I planned to have boob surgery regardless.  In choosing radiation, I’d likely have to wait much longer for bimx/recon surgery.

I think now that it may just be more favorable for me to separate the mastectomy and reconstruction for a number of reasons (i.e., safety–it lessens the risk of complications, less surgery and recovery time, less trauma and contemplation over choices).  Many women choose to wait on reconstruction simply because they don’t want having to think about reconstruction to intervere with the cancer treatment itself.  Plus, with my hightened fear of any surgery, in this respect, taking it one step at a time would be more beneficial.

The fear of reconstruction has kept me from really going for prophylactic surgery prior to this.  Reconstruction has more risk of complications (failure of implants or flaps, higher rates of poor wound healing, skin and donor tissue necrosis, and the list goes on).  Mastectomy alone, as with all surgery, has its risks, but I’ve already been through the mega trauma of serious surgery with major complications and my fears of having these surgeries together are valid.  I’ve already witnessed first hand the misery complications produce.  Separation will allow for a slower induction into the long, reconstructive surgery process.

With delayed reconstuction, my fear is what psychological damage may come in the aftermath of the mastectomies alone.  I was never really into shoes, but after my panc surgery, I totally become a shoe girl.  The higher the heel, the prettier the style, I had to have it.  I wanted some small part of me to feel pretty and feminine when the rest of me didn’t.  Who knows how intensified such a feeling could become after mastectomies.  This is a very scary concept for me.   All of this comes secondary to the simple fact I’m doing this to try and save my own life, but it doesn’t lessen the valid, emotional trauma I’m still faced with.

I watched Super Soul Sunday yesterday with Mark Nepo and Kris Carr (two of my favorites).   In listening to Mark Nepo’s conversation with Oprah and the words of Kris Carr, I was able to gain a greater understanding of my own personal growth in relation to my cancer.  I see the role it’s playing in opening/awakening me to my own spiritual path.  I understand more clearly about my own conscienceness and the power and strength that come from surrender and acceptance.

I know we are all constantly learning, changing and evolving.  My hope is that I am able to surrender to and accept making such a profound choice with enough strength and courage to lessen any psychological hardship.  My desire is for such growth to bring me to a state of grace, acceptance, extreme self-worth and self-love.  This, in turn, may help me to dismantle some of my own false beliefs about the shallow, physical aspects of beauty and gain a truer understanding of my own womanhood.

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.