July 31, 2015 - G force

Last night was not an ideal night. A frustrating thing leading up to a mastectomy related procedure is it pulls you right back into the initial event. I can't blame my crappy evening on mastectomy as that seems too vague, but I can and do blame it on my awareness of what is to come. I was having a terrific week for all practical reasons and then wham! Thursday evening arrives and I'm fully aware surgery is less than a week away all because of the calendar flipping to a new day. That was the only change and it plummeted me into ugliness, the mood being so foul I sent myself unexplained to my room to regroup.

I placed myself on the bed, under the covers, away from my household and brewed while fears floated right to left, back to front, up to down. The thoughts of soon having to wake Ron up to take me to the bathroom got under my skin. The need to have him lift me up and down from the couch subdued me. The awareness that bandage care would be scheduled and tears would flow plopped right into the middle of my perfectly fine evening just thirty minutes before. I could only see the trials, not the triumph and it sucked everything out of me rather quickly. I couldn't even admit it to Ron, as it felt so trivial and embarrassing to have found myself in this place all because the calendar date did exactly what it was intended to do...change.

It's real and it's primal and it doesn't have to have a reason. Just three days ago I was celebrating my perspective. Pride before the fall, huh? But here it is, the rollercoaster of feminine thoughts and emotions, and sometimes you just find yourself on the ride strapped in and under the influence of it's g force. You rationally comprehend the absurdity of the moment, but you are buckled in and fail to get off. I'm not the only one that had found myself there, and sadly that provides me some comfort.
Full-disclosure and an accurate vantage point of the face of mastectomy. Sometimes there is laughter, sometimes not so much. I am where I am and that status point changes a lot this week. But thankfully the ride stopped after my slumber and now I'm just left with the lingering after thoughts. I credit prayer and thankful to those who provide it in real time at beck and call.

July 28, 2015 - Hideous Packaging

My friend, V, sent me a very thoughtful gift in the mail in preparation for my upcoming surgery. She herself had recently completed mastectomy and found the most perfect shirt to use in the immediate day post surgery. Appropriately colored pink for advocacy and equipped with Velcro easy access and well placed pockets for housing drains.  I found myself wondering how in the world I had not come across something similar in the last 5 surgeries. The perfect gift of practicality and also a fashionable camouflage for what lie underneath its Velcro closures. And above all of that practicality was a tender heart of a friend who understood the dread I’m experiencing now about a week before my next surgery. My posts are a bit more frequent this month than previous months. A testament of my daily thoughts focused on what is to come.

“The universe delivered me a beautiful gift in hideous packaging.” Author: Susan Rebecca White in A place at the Table.

Have you ever been dealt something in life that you truly wondered "could this possibly be any worse than it is"? While this quote doesn’t apply to the gift I received in the mail as it was a beautiful gift in beautiful packaging, boy is the quote ever so fitting for my mastectomy. Hideous packaging in an understatement (ok, so maybe a smidge of an overstatement as hideous really is a very strong word, but you get the idea). This process has been way more involved and life changing than I ever could have imagined. While the scars were somewhat better than I ever expected, the turmoil of the process and its effects on “life” were so much more. Never could I have imagined how this would turn some weeks upside down. How much I would dread a surgical drain. How I would sit in the middle of a play on my birthday while infusing antibiotics for my cellulitis. How I WOULD actually care what they looked like afterwards. How I would cry at the drop of a hat early on in this process…and it always stupidly timed itself in the middle of a medical appointment with the surgeons. How much this would affect Ron as he tried to navigate me. How much money would be involved. How much impact it would have on everyday life in the immediate after and how I would detest the physical isolation being cooped up at home after each procedure.

But you know what? I also never imagined how much joy I would get in that chaos. The relationships that would form. The triumphs of going through pain with a spouse. Those little moments in the middle of the night where I look over and see Ron lying in the floor next to me because if I am not comfortable in the bed, neither is he. Those times when you run into a friend who has had mastectomy and you feel that immediate bond of “I know your struggle”. The tears that flow in unison with friends while you all sit in a booth at a restaurant because they care so much about you. Dinner that arrived on a doorstep and cards that arrived in the mail. The humor I would find in the most ridiculous of moments like when doing my strength exercises in my kitchen doorway. Or when I realize every single article of clothing or swimwear I owned would fit quite differently 2 weeks later. And therein lies the beauties of mastectomy. It was the most hideous of packages (this need for mastectomy) but out came the most beautiful gifts of life. I wouldn’t change a single moment of it. Truly I wouldn’t, because I am so much more of a woman after this journey, despite thinking I might be so much less. I am not defined as a woman by these missing breasts, but I most certainly am defined by the triumphs, and relationships, and personal growth that come out of it. I would do it all over again. Every single minute of it.

And therefore, I am trying to go into surgery number 6 next week with this mindset. I purposely wake up every morning mixing my dread with my optimistic anticipation of what can come. Every moment of this is an opportunity to forge more of what I have already gotten. Ron and I will have more “moments” under our marriage belt. I know more tears will flow, as they are flowing even as I type this words, but through those tears come understanding and an in-depth awareness of Sally and what molds me. I know there will be more relationships forged, just as occurred with the arrival of the “perfect shirt” in the mail. We are all a community of people surviving life…and as stated in previous posts, hopefully thriving! Mastectomy makes me better at being me. As did lymphoma. As did cleft lips. As did heart break. As did loss. As did a period of time where I had no boobs. I loathed it. But I am a better version of me because of it. I may have left a little piece of me behind in various places along the way, but I certainly made up for that in what I gained.

“The universe delivered me a beautiful gift in hideous packaging” is so nicely coupled with the old hymnal verse “To God be the glory, great things he has done.” I can still hear mom and dad in my head belting this out from the pew.

July 21, 2015 - ING

The data can be overwhelming, as I read paragraph after paragraph in preparation for an inservice I’m working on, but also in preparation for an upcoming appointment. The risk factors associated with the treatment of malignancy are numerous to say the least and continue to soar as time passes. The more your read, the more you wonder how in the world anyone survives anything at all. Radiation alone drastically increases your risks of secondary conditions: breast cancer (MRIs and mammograms every six month – or in some cases mastectomy), skin cancers (yearly dermatology appointments), colon cancer (colonoscopy every 5 years starting 10 years after your last radiation dose or age 35 – whichever is the latter), cardiac insufficiency (doppler and ekg 10 years after therapy end, echocardiogram every 2 years), pulmonary fibrosis (Baseline PFTs then routinely afterwards), and the list goes on. This doesn’t even begin to factor in those risks associated with chemotherapy dosing which only catapults the list into another realm.  As I continued to read, I could easily find myself overwhelmed at the numbers and wondering how in the world does one stay on top of all of that without falling into a spiral of paranoia at what might come.  I am also suddenly aware I am incredibly behind on my “routine” follow-up appointments. In fact, I had only met one task, mastectomy. So I’ve spent the last few days getting appointments scheduled and follow up calendars planned in an attempt at outsmarting fate. I most definitely see the needs for cancer patients to be enrolled in long-term care follow-up clinics and am wondering why I had not done the same for myself. It feels…fearful…knowing the data.

There is a fine line between fear and proactive, and I am working to maintain the latter instead of the falling prey to the former. I fully believe that God may have specific plans for my future in my health, just as he has used my mastectomy in so many ways, but I also believe he gives me a brain to try and circumvent medical mishap. So I choose to be purposeful moving forward in my medical follow-up. Dermatology appointment scheduled. Cardiology appointment in the works. Colonoscopy…..Ron, please hold my hand…also in the works. Pulmonary appointment, on the to-do list. And the others, I will get to you in good time. But first let me fit in a surgery to fix boob 2.2. First things first, right? Attitude adjustment in the works as well. While mastectomy created a good bit of disruption to my every day existence and that is ongoing in the immediate after each surgery, I would be a fool not to recognize the gifts it has brought in the process as well. Instead of embracing the bitterness of circumstance, I’m choosing to bring to the forefront the great. And I’m enlightened by how much better I know myself in the process. Isn’t it crazy how you absolutely know you have everything about yourself all figured out, but in the fast swoop of an unexpected circumstance you can find some undiscovered nooks and crannies of your personality? Or awareness of how much circumstance can mold you into something changed, could be better, could be worse, on the other side. My heart is much deeper for relationships here on this side. And my awareness of “what is on the outside is not always what is on the inside” is more finely tuned in my interactions with others I run into from day to day. We are continually morphing as we get from here to there. An additional little nugget I’ve gleaned is the appreciation of “while things can always be worse” that doesn’t mean I am not feeling every single moment of what I am in. Only you can measure how something affects you, there is no gold standard or bar to be set. Yes things can always be worse, but things are still your reality of here and now. And they may impact you deeply.

Navigating “post lymphoma” life for some reason feels pretty overwhelming right now. I am sure the breast surgery being in my immediate future might be the source of that, but also this preparation for preventing future medical mishaps which now clutters my calendar with no regard for co-inhabitants of the time slot. It all has to be worked in and it’s all for the good of me as a whole. It makes survival more active, less passive. Because surviving never really ends, does it? We will all always be surviving something. And while the event itself comes to an end (hopefully), we are left with the positive and negative aftermath that we incorporate into our everyday lives…forever…in some capacity each and every day. You never go back to life before malignancy, or divorce, or assault, or parenthood, or achievement. It’s there knitting its way into your decisions, and perspectives, and motivations, and fears. Conscious or not, it’s there influencing almost everything about you. And that is the way it will be each and every day moving forward.

Sometimes I feel better knowing the colonoscopy is NOT scheduled as that mandates the scope will never find an “aftermath”. But if I’m being truthful for myself, this thought process is choosing fear. And that fear is a method of survivorship I want very much not to embrace.

I am not a survivor. I am surviv-ING. It’s not a fixed point on the timeline, it’s the timeline itself. This, I finally understand.

Psalm 16:11 You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

July 14, 2015 - Return to Sender!

It was lying midway through the stack of mail, sandwiched between an overpriced clothing catalog and a reminder to schedule a termite inspection. But I saw it immediately – the over sized oblong envelope with royal blue writing. I can recognize that envelope a mile away by now, yet I still hold out hope each time that it contains an invitation to a magical masquerade ball, or a collection of forgotten snapshots from a recent trip. Yet it is never that. Not even once is it that! The return address immediately betrays the sender. Division of Plastic Surgery. Woe is me.  

Immediately, my funk returned. I do this every stinking time- the dread, the loathing, the sulking. I don’t know why I let this affect me like it does, but it seeps in from the outer regions of Pluto and finds itself right in the forefront of my mind. It only took the arrival of post-surgery documents to send me bee-lining straight from delightful to disgruntled. I really wanted to overachieve and postpone disgruntled until the night before surgery, but alas, the dang mailing. I am beyond grateful that I spent the last 5 months, for the most part anyway, putting this 6^th surgery out of my mind. I worked very hard to claim life in that very moment instead of dread of what was coming in early August. I definitely had “most improved” in that aspect compared to previous surgeries, but the mailing came super early this go round and now here I sit dreading August 6^th as if it contains the plague. Boob 2.2 will now be Boob 2.3. Ridiculous, I know. One, who names there implants? And two, ridiculous that two surgeries turned into six. (You can find the background for this upcoming surgery # 6  here (January 2015) and in conclusion here (February 2015). If you haven’t been keeping up, I don’t blame you a bit.) But I am very much aware that God is still the God of disgruntled and he will meet me exactly where I am.  Ron is still the king of best caregiver ever and he is all geared up for shoving pillows here and peaking under bandages there. And I am still the queen of distraction (ok, I totally over sell that attribute cause I’m really not great at that at all) but distraction is on the to-do list all the same…along with buying gauze, and alcohol swabs, and oh I don’t know, maybe ice cream!

The surgery mocks me in my waking hours. The pesky little sucker drain that now consumes me all because of an oblong envelope arriving several weeks early NOT containing an invitation to a magical masquerade ball. RETURN TO SENDER!

Double mastectomies almost seem common place now. Sandra Lee, food network host, underwent mastectomy just this week. And there barely goes a month that I don't hear of another person adding mastectomy to their medical list. Celebrities have made the mastectomy discussion more common place and the physical effects a little less taboo. Angelina Jolie braved that path publicly last year. Christina Applegate in 2008. Comedian Wanda Sykes and TV host Giuliana Rancic in 2011. Kathy Bates 2012. And then there is Sharon Osbourne, also in 2012, who chose mastectomy for prophylaxis after diagnosis with the BRCA gene. The list is growing not only for breast cancer but for prevention alike. No one is immune to its grasps it seems, yet we all find ourselves shocked when it lands on our doorstep. My heart gets a little heavier with each new announcement. I know how those moments feel, and I know how mundane life becomes quite un-mundane, if even for a few days, but more likely for many months after you emerge from the OR room. So for those of us not in the limelight of fame, mastectomy seems a little more do-able because of their open discussions of such. But at the same time, I want to shout it from the rooftops that it is the stories of the not so famous, not only of the famous, that better get me through mastectomy moments. These stories are a bit more relate-able for me with similar circumstance and day-to-day events and challenges. (Please know, I'm not saying celebrities are not every day people, I'm just saying they have resources and access to options that may vary from some of the rest of us. So their journey is different, though similar, even if in minute ways.) I imagine what wonders we could do if the celebrity partnered up with the not-so-famous to share both sides of this life. Mastectomy just may have a few less scars when approached with knowledge from someone who traveled the road before you.

And with that we keep trucking on and I see this next surgery in my headlights. Hopefully a little wiser with each passing one.