August 25, 2015 - My money is on the boobs

I remember being perfectly "fine" while sleeping last night. I remember showering with considerable ease this morning. I distinctly remember successfully dressing myself, styling my hair, and grabbing breakfast and lunch for the day. I recall the drive into work being uneventful. But then I vivdly recall getting out of the car in the parking deck and things very suddenly not being ok. A very specific spot in my lower back (old injury while snow mobiling a few years back) felt on fire. I don't recall anything happening that morning to cause this. But somehow there it was, an awful undeniable nerve like pain in my lower back. Walking with any sort of dignity was out of the question, but I knew if I could get to my desk chair, I would at least be able to get some relief from movement. Shuffle, shuffle, shuffle, elevator ride, shuffle, shuffle, shuffle, Desk chair. Nope that was not going to work. The chair was actually worse than the movement. Standing up seemed to offer the most relief, which I did for as long as I could at a time throughout the day, but my stamina only allowed that for short bursts of time.

What in the world? I know I turned forty this year, but that didn't happen last night? I'm nestled into forty for several months now and my joints can prove it. Since surgery I'm restricted to sleeping on my back, and very recently added in my left side, but I have to be situated just so, and getting from back to side and back to back again carries it's own challenges. Could I have tweaked something during the night and it just took a few hours to declare itself? Could my reaching for the pen in the out-to-get me rolling desk chair yesterday and almost landing on the floor have resulted in a Big Ole Bucket of Ugliness (BOBU) and is just now having a delayed response? Could my back simply have decided to retaliate because it thought yesterday went just a little too good with my nine hours of very productive work output? Or does my back simply feel left out from the follies of the last 3 years and now quite selfishly decided to force its way into the game? Well Back, whatever your cause,  my boob does not need any empathy (or competition) from you, and joining up teams has definitely put an unneeded kink in my day today. All day I felt home couldn't come soon enough and I am sad to admit I had my first set of tears today in over a week while trying to get home. The desk to the car just seemed too far of a distance to traverse and I couldn't hold it together. I think it was more out of frustration than pain though I am sure the latter impacted the former, but alas the dam broke and my eyelids failed to hold it back. Thankfully, I was alone in the elevator and no one else was the wiser. I got it together quickly and got to the car as quick as I could and made my way home to my trustworthy sofa where I have now duct taped myself for the rest of the evening in the only position I can find comfortable. Geez Louise.

So while the impostors are all dressed up, perky, refusing to be held back and ready to get on with this life despite being stitched, glued and steri-stripped, the back is now doing its best to hold me down.  I'm hoping 2 boobs eager to get on the mend will outweigh one stubborn back who evidently felt left out and wanted part of the action. My money is on the boobs. They have a longer track record and have more than proven their fighting spirit. But I am happy to take your prayer coverage for this very specific item as it certainly has a hold on me right now and is turning my usual chipper demeanor into foul verbiage and troll-like expressions. You guys have done so well at praying me out of my boob predicaments, so here you go. Get to it! No delay!

A little golden nugget in my day that almost makes up for the recent predicaments - I was so pleased to run into a coworker who I did not know was following my story. She so very richly welcomed me back when we ran into each other in the hallway and told me how much she was enjoying seeing my posts pop up in her social media feed each day. What an unexpected source of genuine encouragement she was to me! Too often, when you share a rather sensitive journey publicly as I have done, people often read under the radar. They read your words, but many times are afraid to comment on the issue to you in public for fear of intruding or over stepping boundaries, so instead they remain silent. If only you guys knew how much support it gives me when I hear from you. You encourage me to keep advocating opening about a sensitive topic and you so very much enrich my journey.I am so grateful for for this sincere interaction today and now knowing she is pushing me along and has been for quite some time. It makes the road so much easier when I know I'm not traveling it alone. Plus it never hurts to get compliments when all I can picture is my Gollum-like appearance.  Don't underestimate the power of genuine words from a female. Too often we leave them unsaid and dish out criticism in it's place. Not this gem, she filled me with sunshine exactly when I needed it.

Ok, I distracted you. I take the blame, but now seriously, get to it! No delay!


August 24, 2015- Rolling Chair Stupidity

So while I shuffled about the hallways with turtle speed and remained in a seated position at all costs, I put in a 9 hour work day by working a little when I got home. Now before you guys scold me as I know you told me to take it easy, I compromised by maintaining very low physical demands by staying put at my desk, but achieved a very high productive output. I honestly was on a roll and feel better for the accomplishment as a to-do list can feel overwhelming in and of itself. I honestly felt amazing from an emotional perspective, after having the scaredy-cat jitters when first arriving, so I know it was through your prayers once again that I fared so well in this super busy day. I'm keeping track- that's like Score #7 for you guys. I know I will crash and burn super early tonight, but I feel so great for having done so well on my first day back and knocking a ridiculous amount of bullet points off my to-do list. And it helped a ton having all the "welcome back" visits I received along the way. It really does give me a mental boost.

The day started with me standing in my closet scolding myself for not having thought about clothing the night before when I wasn't feeling rushed. I'm so in tune with pajamas right now after having made them my best friend for the last 15 days that I had not thought through the bra and the appropriate clothing that will incorporate the bra successfully hidden underneath while also being something I can easily put on. So I stood there, and stood there, and stood there starring at it's contents with little clue as to where to begin. It really is a struggle. Not everything "works" right now. And you really want something super flowy/non-constrictive for the impostors. Boob 1 isn't a problem per say, but Boob 3.0 has it's challenges until the incision is completely intact and steri-strips removed. I'm to remove the steri-strips when they start pulling up at the edges. Well gosh darn it, if they aren't stuck on like Gorilla Glue! Not even the slightest lift of an edge. Ron did remove the very bottom last night because we really wanted to get a look at the incision itself to see if it was mending as intended, and low and behold if that was a steri strip that was actually below the incision, put on for good measure I guess. As I've said before. If Lead Plastic Surgeon is anything at all, it's conservative- so he steri-stripped and steri-stripped until his heart was content. Case and Point. Note to self: Perform the clothing tonight before going to bed.

Following the closet spectacle, I successfully navigated the ~20 mile commute from here to there. Successful in that I arrived safe and sounds as did those driving in front of or behind me kind enough to not honk your horn. At one point, I did have to recall which way to turn (I was going the back way to avoid interstate traffic) and I may or may not have sat at a stop sign for tad too long for the liking of the minivan behind me. It wasn't lost on me that she simply was trying to get her little ones to their first day of school and I was inhibiting the peacefulness of that road trip. (Best wishes Joey Jr and Susie Lou, I hope you had a terrific day despite my delaying you!) But all and all, I arrived in a reasonable time frame and maybe no one even picked up on my delinquencies. As with being stared at in the produce aisle, it was probably all in my head and Ms. Minivan Driver didn't even give me a second glance.

The faux pas of the day....dropping my pen on the floor and almost falling out of the rolling chair when trying to bend over without squishing the boob to pick it up. I successfully stayed in the chair but only after apply the grip of death to the right arm rest to keep my butt in the chair and off the floor while exuding a super loud yelp of  somehow tasteful exclamation (Sorry, Leigh and Ivra,  my delightful cubical neighbors, I hope it didn't result in a spilled coffee for you or a startle induced slightly tinkled on pants! And by the way thank you< Leigh< for the welcome back wishes, they did my soul well). Workman's comp probably doesn't apply to rolling-chair-stupidity, huh? I was not successful however in getting my pen off the floor. Luckily, I had a spare. The pen certainly adds some color to the mundane office carpet, right? It will be there ready for pick up next month when I need it.

Super accomplished and hoping it will transcend into tomorrow without negative consequence. And here's to keeping myself off the floor! Clink!

August 23, 2015 - It makes the horrible quite far from so

There was such a sense of dread. I simply did not want to do this surgery. Last time, the recovery from anesthesia had taken a huge toll on me. Twelve days of living in a fog of dizziness and incoherent thoughts. I was confined to the sofa, not because of pain or restriction, but because I simply could not get from here to there in graceful upright movement. It was a definitive anesthesia induced drunkenness that well outlasted it's invitation and made a very simple procedure anything but, and I hated every minute of it. So when surgery number 6 announced it's presence in my calendar appointments, I immediately found distaste for what was to come. And this time, not only would anesthesia be back on the to-do list, but also a more extensive surgery with  scar removal and the placement of a drain. Enough said. I knew this recovery would be worse than the last. The only rational thing to do was to pull you into my journey with your faithful commitment to prayer.

I'm 15 days post surgery. Therefore the calendar tells me recovery is done. I don't know who sets these recovery parameters. I feel sure it is a group of people who haven't actually had the surgery. Post mastectomy itself- one night in the hospital and 10 days of recovery. Post initial reconstruction- no days in the hospital, 4 weeks of recover. Post cellulitis surgery - well, I didn't follow the projected course and instead had 3 days in the hospital and 3 weeks of IV antibiotics dictating my recovery. Post lipografting - no days in the hospital and 1 week recovery. Post breast tuck for slipped implant- no days on the hospital and 5 days recovery. And now after scar removal surgery - no days in the hospital and 2 weeks recovery. I head back to work full-time tomorrow. Every single surgery previous, I went back to work too soon. But now because of so many of you, I think I am heading back at maybe the right time. You prayed me to a drain that virtually I didn't even feel. I KNOW what horrible days a drain can bring, and this go round it was as if the drain was meant to be there. Score 1 on your behalf. Also missing was the ongoing drunken anesthesia response. From day one I have felt together, coherent, and upright. Score 2 on your behalf. Early on I had to come off pain medications (I'm allergic, and it instilled overwhelming nausea and vomiting), yet my pain score stayed below a 2 the entire recovery without meds. Score 3 on your behalf. Truly, virtually my only worry this time around was the nausea/vomiting. It was bad enough to make up for some of the rest, but I can't even begin to imagine if that were here with pain from the drain and incision and me being in anesthesia drunken state. And I can't hold you accountable (smile) for the nausea, because we didn't know to pray for that in advance. But I very purposely made requests to you for these 3 items (pain, drain, anesthesia) and you brought me through with flying colors! We don't celebrate answered prayer nearly often enough. Too often we chalk it up to coincidence, or our own doing, or aligned stars, but it is so evident here the cause and effect...your prayers, and for that I'm so grateful I serve a mighty God.  It's all too easy to blame him when things don't go our way. Or hate him when something occurs that we don't understand as if he owes it to us explanations. "If God were small enough for us to understand, he wouldn't be big enough to be worshiped." Plain and simple, God is not my puppet for me to mandate outcomes. He is so far above me and set apart from us that he only deserves awe, respect, and worship. And because you went to him on my behalf, he brought me blessings. So thank you for that faithfulness. And where things continue to be a struggle, I figure he must have some purpose for me through that and he is still worthy of great praise.  I'm finally figuring out that my happiness is not his goal, but rather my obedience to his purpose and through that the joy that comes to me. So I endured a little nausea and now am waiting to regain stamina, but evident is Him though this all as he is growing me in wisdom and faith. I was so very much dreading surgery #6, and yet it grew me in so many ways as I once again learned that sometimes in the undesired he brings a greater purpose. And I'm better on the other side through it.

I'm still stitched, glued, and steri-stripped under this tshirt, but I've graduated away from the sports bra (hello flimsy impostor bra lacking underwire and therefore virtually not worth it's presence) and the drain is long gone. I can successfully shower 100% alone and can get all articles of clothing back on without assistance (don't under estimate the power of those two things). I can have Ron inspect the incision each day without a single tear (he has to do that because I can't feel pain due to my lack of nerve endings, so I wouldn't know if there were a problem. After the first reconstruction surgery, I went a full week without knowing there was an open sore at the base of my incision until the surgeon found it at a post-op appt). I have successfully worn non-pajama clothing, applied makeup, and styled my hair on my own once as of last night. And though I can only stand for short periods of time, I was out of my house for 3 full hours yesterday (mostly spent sitting but hey it's an achievement) and didn't collapse in a puddle of exhaustion. So yes, the time is here to reintroduce myself back into my life. It's a tad scary, those first few days, but it is the sure way to bring normalcy back to mastectomy. My routine changes my mindset and my return to a full work days gives me the time stamp of "done". But if you see me at work tomorrow, please note, that look of pallor on my face and shuffle in my step have come along way and "disheveled" is still a fashion style which successfully hides stitches and glue underneath.

A few of my favorite moments:
  • Ron and I almost putting the sports bra on backwards. I will let you bring your own mental image of how hysterical that looks. And daily watching Ron in bewilderment helping me figure those things out. 
  • My "in laws" surprising me at the hospital on surgery day. I don't underestimate the kindness in that moment.
  • My laying naked on the bottom of the tub with a puke bucket in hand and a drain tube coming out of my chest and Ron and I finding a way to laugh as we had to figure out how to get OUT of the deep garden tub.
  • Me singing with the anesthesia resident (ok me singing and her laughing) while she was trying to get me under. 
  • Meeting my sister and parents out for lunch. I felt like crap, but seeing them standing there in excitement of seeing me made me cry there in the middle of the restaurant.
  • The two friends that brought me dinner to help Ron out when their lives are just as busy mine. And the two friends who texted me almost daily to boost my spirits because they knew I detested isolation. 
  • The first time I went out alone to the car to drive, and got in the passenger seat first. I'm not the brightest bulb in the pack.  
  • Ron walking in the room the very moment I am shoving wool socks in my bra. 
  • Ron "fixing" my hair after a shower and pridefully telling my sister he ironed my hair. What a gem. 
  • One friend sending me a card a day outlining her life that week, including her daughter's breakup on the first day of school and her son's college class dramas. It was like watching a miniseries and I adored it. 
  • Seeing "Ms. Hattie" at my post op appointment and it reminding myself this story is so much bigger than me. 
The silver linings are always there, you just have to train yourself to look for them. And once found, it makes the "horrible" quite far from so. 

With all my gratitude for each of you,
Sally

August 18, 2015 - Gosh darn it! We are awesome

I'm supposed to be driving. Lead Plastic Surgeon released me from driving restrictions yesterday. I don't want to drive. Want is the correct word. I CAN drive. But I'm finding I don't want to drive. Let's face it, driving is not comfortable. While I can raise my arms and place them on 9 and 3 (or is it still 10 and 2?), I'm mentally and physically uncomfortable sitting behind the steering wheel. I buckle my seat belt across my chest and while it sits there fairly comfortably as long as I am perfectly still, there is this overlying thought of what if I was in an accident or even make an abrupt stop and my incision is rammed with high force against said seat belt. Or worse, the air bag is deployed. And what about speed bumps? They carry their own folly as my automobile traverses their hardscape.

I'm supposed to be driving. I don't want to drive.

Despite this irrational (rational) dislike for driving in current state, I went to my garage, opened the car door, slid behind the wheel, buckled the seat belt, started the engine, put the car in reverse, and saw my look of intense dislike glaring back at me in the rear view mirror. I could see it plain as day. My face did not want to drive a car. The grocery store is less than half a mile a way. I used the excuse of needing 1 cucumber and 1 tomato to traverse the pavement from here to there. My knuckles, my rear-end, and my teeth were all clinched in disdain as I drove at a ridiculously slow speed the 0.5 mile route where I arrived at the parking space. I put the car in park, unclinched everything I had clinched, and let out a deep sign of relief while refusing to think about the drive back home. My face was still soured in the reflection. It has a mind of it's own and refused to give in to delight.

I unbuckled the seat belt, opened the car door and stood up in the parking lot where I became acutely aware of how out of place I felt. I've felt this before, in fact after every breast surgery. You fully know that on the outside you look like any other women on a mission to restock her pantry, but on the inside you are fully tuned in to the fact that you have two grey and pink wool socks stuffed in your sports bra, one on each side of your incision. Your boobs are squished into the, formerly 2, now  1 "uniboob" that only a sports bra can create. You have not a stitch of makeup on (which is ok were this the only issue, but putting the whole package together creates discord) therefore your ghostly pale post-surgery glow gives away your status. Your hair hangs limply where you husband dried it the previous night in the only way he knew how. You are still wearing the pajama bottoms you had on the past 2 days. And your t shirt carries no curves (gone is the shape and lift of underwire) but instead is replaced by a flat span of uniboob and belly where you are not sure where one begins and the other ends.  In your mind, every eye is on this disheveled poster woman of "disheveled mess". In full awareness of what you have on display, you grab your basket and hobble over to the produce section and grab your 2 items and rush (ok, you are still hobbling) to the self check out aisle so you don't have to face the perky 17 year old check out girl and bag boy. Less than 10 minutes later you are climbing back in your car and then you realize you now have to drive again.

That's exactly how it unfolds and a reminder of how ridiculous our thoughts can be sometimes. I'm fully aware that I probably look like any other women in her lounge wear at the grocery store. There is no bulge of the socks to be seen as they cleverly blend in under the tshirt, no visible scar that everyone glares at, simply a wind swept hairdo and a fresh from the gym (?) make-up free face. Sure I shuffle in slow steps but so do most people do after a long leg-workout (convincing, right?). I'm 100% incognito just like everyone else with everyone assuming I came straight from the gym instead of my sofa.....yet somehow in our own mind we think we are anything but. What we think is obvious to the person across the produce aisle is not even on their radar. We would swear every eye is on our incision. We let our self-conscious irrational thoughts dictate reality, and I for one know that is absurd. But it's there, in the middle of the grocery visit, making you crave your sofa where all the presumed weird things about your appearance go un-noticed by the cat.

These thoughts stay with you after the first surgery for many months. You will assume every eye is on your chest (and in some cases it is, people can't help it once they know about your surgery, but theirs is un-intentional and not vindictive, just a reflex to the knowledge). You will feel as though your scar is on the outside of your shirt instead of in. But as time goes on, you eventually stop thinking about your new breasts (it's not that they are good or bad, they are just new) and instead of it being your every waking thought, it becomes a passing moment in your day at best. But it takes a while, so be patient with yourself. If you have subsequent surgeries, the thoughts will return with each trip to the OR, but they are shorter lived - a week, a month, just a wee bit of time. Right now I am right back in the middle of it, but now I have a few "encounters" with people under my belt so it will most certainly fade into the background once again in no time. And I will soon see myself again for who I am - A strong independent woman who loves thunderstorms and seeing big dogs hanging out the back window of a car, who adores the transition of summer to fall, who could spend hours escaping in a historical fiction book, who craves sincere friendship,  who really wants to live with a water view, who married her God-Sent after she gave up on finding him, who is really worth knowing once you get passed her introverted shell, who is mesmerized that Grace is the best life has to offer and thrives in knowing life is so much more because of following Him, who kicked lymphoma in the hiney and chose the "crazy" choice" and now no longer fears breast cancer.

Disheveled, scarred, and embracing our sock filled uniboob. But gosh darn it, we are awesome. Be patient with yourself, it just takes a little time.

August 16, 2015 - Thank you, Ron Howard

The Bravermans yell too much. In that, they are certainly realistic. In that, they are certainly bothersome. But outside of the yelling there most certainly exists a gravitational pull into their endearing chaoses and successes. For me, my endearment lies particularly in Zeek, the 60+ father of the family clan. I can't even put my finger on the why, but it's there pulling me into his orbit of family. He's quirky and odd and delightful all rolled into one. There are others I like and others that push me over the mental ledge, but one never can be sure which will be which from season to season. Not Zeek, he had me at the get go. Yes, I know the Bravermans are fictional, but when you binge watch your way through 3 season in 9 days. they become a reality.

I've learned I very much like a family dinner. In the back yard, under string lights, in wooden chairs that don't match. And I like that attendance is mandatory. I also very much like a steady stream of music (right now for me "Every Kinda People") in the living room with everyone providing their own jive. The more geeky the dance move, the better. And the more people involved, the more endearing. I cherish the baseball game where everyone has their own bleacher spot, or the family crisis where everyone has their own recliner/sofa spot. There is merit to the fictional. And it has surprisingly pulled me in. I feel myself straddling the emotions of a failed adoption, raising a son with Asberger's and preparing him for his first dance, a first kiss for a daughter, a shy son pulled between father and mother, a success not attained, and a college not attended. It's portrayed so well that I forget that I am not part of the Braverman legacy myself. A cousin looking in from just over the wooden fence. So this week, when my least favorite "cousin", Christina, found a lump in her breast, my first reaction was "I wonder if this will play out in a realistic dialogue" and my second "why didn't anyone tell me this was coming and to skip those episodes?"

The timing was off for me, as  Christina headed into surgery the same week as I, but very much spot on in the dialogue it prompted for Ron and I. And I wasn't expecting that. As they wheeled her back into surgery and Adam is left peering through the glass window obviously scared to his core, Ron turns to me and says "There were only two times in all of these surgeries that I was scared. The day they took you to surgery for your cellulitis (I briefly knew of this instance), and just a few days ago when they took you away (this one caught me off guard)." I hit pause and we traded places as the Bravermans turned into sculptures on the screen in front of us, and Ron and I became the action. It was a great moment for me to hear him relay emotions that I knew very little of. He's eluded to this in a round about way one time before (about the cellulitis surgery) but this was the first time I was brought into his emotion of 9 days ago. I won't speak of them in greater detail here as those words were said to me and not this computer screen, but I mention them as a reminder that there are almost always 2 people (if not more) involved in the complex emotions of mastectomy. I've touched on this before, but it came back to mind seeing Adam unravel in his wife's journey.

The second gem portrayed in this particular story line came from a fellow cancer patient when she told Christina about the cycle of a cancer diagnosis. Paraphrased: First, people will come out of the woodwork when they hear your news, even people you don't even know. They flock to you in "support" and it is almost more than you can handle. Well, you need to forget about those people and see who is left 1 month later. Those are your gems and what friendship is truly made of.

Boy, the truth in that statement, and the shame it can bring to mind for me. This nugget applies not only to a malignancy diagnoses (and it most certainly applies there!) but also to any crisis in life. I think of the people I let down by diving in head first at the announcement of the crisis, but failing to stick it through after the first few weeks as my life pulled me out of their orbit and back to my own. I want to be someone who sticks it out with people. They don't have to be the center of my existence, but they need to remain in my orbit for as long as they need me, because crisis is a very lonely place indeed.

While part of me wished I had been warned of this upcoming story line so I could delay my viewing of the the all too realistic/all too hitting too close to home, it was perfectly timed for when Ron happened to be at home on the couch beside me. We had a great dialogue. And I had a good bit of internal self-analysis. The Bravermans (Parenthood being the show) were to be my my escape route, and what a great job they did (thank you, Ron Howard), but they also remarkably timed the story line to create in me a stir of thinking  that would turn into an unexpected character development of self.
Even this late in the mastectomy ballgame, I am still learning new things...about me and about my spouse. And for those of you who continue to grab your spot on the bleachers beside me 6 surgeries later making it past the 1 month mark, you've earned your spot. You know who you are. Our orbits continue to intertwine with sincerity intact.  I appreciate you sticking it out for all 6 innings. I have a thing or two to learn from you.

August 14, 2015 - Yins and Yangs

I want to get in the car and drive. Roll the windows down, open the sunroof, music blaring from the speakers and a tree lined road for as far as the eye can see. Is it too much to ask for? I only want it because I can't have it. I can't drive. And being driven doesn't fill the void. The car is rather uncomfortable right now with the jiggle and the jolt. The stop and the go pushing the boob this way and that. So I sit instead in the living room either working, or getting lost in someone else's world. Women, prepare yourself for that confinement. It comes every time. And while you hate the isolation, having people over is also an effort (well worth it, but you take a few minutes back afterwards). It's the yin and the yang of mastectomy. You want to be out and about, yet you find most comfort behind closed doors. You want to shower, but dread the effort it takes and the energy it zaps. You want to put on real clothes, but find it's a wasted effort when you are hoarded inside your front door. You desperately want to do your part so your spouse gets a break, but you realize you really only add more work when you spill things or need a nap after the effort. So you do a little of this and a little of that hoping to find the happy medium where you find cheer in your day, but don't exhaust yourself in the process. You have to prepare yourself for the frustration of confinement and restricted activity. Plan in advance. Tonight, I'm taking Ron down the loser path in Backgammon. He needs to go down that path. It's over due. Tomorrow night, maybe a movie. Don't discredit living someone else's life for a few hours. But choose carefully, you want to make a wise choice. Things don't sit as well as the usually do when you yourself are not exactly in tune and you don't want to regret the "life swap" you choose. My friend reminds me that after fighting breast cancer, what used to entertain her in a scary movie now disgusts her. Once you fight for you life, you don't enjoy watching others fight for theirs. For me, I can't do high intensity. Not immediately anyway. So for the first few weeks after surgery, I chose light-hearted. It's the way to go for me. Find what fits for you and and don't try to over-achieve by sitting through the most recent horror flick. As soon as you can, plan a dinner out, but keep it low key. A booth in the back where you can be incognito if it ends up being too much. And somewhere quick, so you aren't stuck for 2 hours when you feel you need to be "done" after 1. And don't invite others. Do the test ride yourself first. If that goes well, next time branch out. Sometimes you think you are totally good, until you get yourself there and your quickly see that the getting ready, the getting there, the ordering, the smiling at people you pass was more than you bargained for. Go slow and go low key. Then you can rev it up all you want after the practice run.

Today, I'm running a slight fever. I was suspicious when I couldn't cool off while sleeping last night. At one point, I was having a terrible dream (which I rarely do) and Ron realized I was struggling in my sleep. He reached over to wake me and felt I was blazing hot. Then the "hot flashes" continued after getting out of bed. It's subtle per the oral thermostat, but definitive per my inability to cool off today. There are no signs of anything. Skin in the perfect color. Pain is unchanged. Incision intact without any oozing. So I believe we are good to go. But it is there, underlying hopefully to stay undeclared. I kind of need it to stay undeclared.  And in addition to the yin and the yangs of mastectomy above, there is always the underlying worry that something will not go as planned. You always have in the back of your mind the what ifs. I simply want to be boring. The vomiting earlier this week sort of ruined that dream of mine, but I had reset the slate to try again. Average. Uneventful. I'd settle for Bs and Cs. I don't have to be an A student here.  I'm embracing average and I'm striving for boring.

Yins and Yangs. Underlying worry. It's just part of it and knowing that upfront helps circumvent the frustration. Lessons learned. I am collecting them.

August 13, 2015 - One hand on the house

She was coming out of the exam room door as I was sitting down in the waiting room. I would place her in her early 70s, african american, wearing a matching grey flowy pant and top with a long waistline. The familiar bulge of the drain bulb situated at her hip under her long top. Her hair was in braids close to her scalp with grey and black color weaving through the rows. Wire rimmed glasses and a look of uncertainty on her face. Arms straight down at her side and shoulders curved in. Her husband held her elbow as she shuffled her step beside us to meet another elderly couple who must have joined them for the visit. "He said I couldn't even go outside. No walks, no yard work, no nothing. I said 'not even sitting outside? I can't stay inside all the time'." The lady friend said "you can't even walk outside?". The husband interjected "well, we convinced him to let us pull the patio table chair over and she can sit under the shade." The male friend asked "Dr. _____ said this?"  The husband,"No, lead plastic surgeon after we met with Dr. _____". And the mumbling continued as they gathered their stuff and headed to check out. Ron and I turned and looked at each other knowing exactly who had given these instructions as we had heard the exact thing 3 years before. We too had replied "not even to the mailbox?"

Several things struck me about this. This was her first appointment after her mastectomy surgery. She had just received a lot of information she needed to process. Her friends wanted to support her so they probably drove her and her husband to the appointment. While she looked a little overwhelmed, she looked content. And her husband was there in stride with her taking great care. It was a picture of everything you would want it to be. And it was familiar.

Ron and I got called back. Blanch, the most delightful new nurse was there. She'd been in this role for 3 months now and prior to that she did....get this....wood working. She used to build furniture and decided to go to nursing school. She was the most likable person you would ever meet. She raved about working with Lead Plastic Surgeon. I questioned her on this, and she said, no seriously he is so wonderful to work with. There need to be more delightful people in oncology. In fact, there should be a rule that un-delightful people need not apply. It really can change just about anything. They set you at ease, and they too can laugh about boob jokes.

Lead Plastic Surgeon arrived to inspect the goods. Then he ask, "have you looked at it?". He knows me too well. I told him Ron had, and then I grinned. He said "can you look at it now with me?" He's gentle and I appreciate that. We walked over to the full length mirror and studied the art before us. The difference was immediate. No longer was there the flat shelf on the right that existed before. It had rounded out. He said it would take a few more months to fully transform, but the surgery worked for what I needed it to (appearance) and for what he needed it to (functionality). He said he couldn't believe what he found inside. My body had rejected the implant and had encapsulated it not once, but twice with scar tissue. He said he removed the first capsule, but then found another one under that. Over time, it would have worsened, and then hardened, and become very painful. In that moment, I knew we had made the right decision to have the surgery. It calmed my soul. His only concern now is how thin the skin was after separating off all the scar tissue, so he placed a new mesh sling between the implant and the skin to 1) support the weight of the implant 2) provide more thickness to the skin. If all goes as planned, the skin will attach itself to the mesh making a thicker barrier. With my original surgery 3 years ago, he had also placed the mesh layer, but my body never incorporated it like it was supposed to (this was found when I got cellulitis and had to remove the implant). So we really want this one to incorporate this go round to help my skin out. And we want to prevent encapsulation of the left side. I guess all of these complications we've had are a reflection of how radiated tissue (my chest) simply doesn't function the way you would hope with normal healthy tissue. And why Lead Plastic Surgeon has been so conservative with me from the get go. Anyway, the area appears to be healing nicely at the incision, and the drain is now out. Mission accomplished so far.

Drain out! (Poor Blanche, she had to endure my counting and heavy breathing and getting everyone on the same page of removing on "six".)
Antibiotics for 5 more days.
Sports bra 24 hours a day for 1 more week, then flimsy bra for 2 months
Lifting restrictions for 3 more weeks
No driving 5 more days
I can now sleep on my unaffected left side
Ron back to work at the office today. Eeekkk!

On my way out, I told Lead Plastic Surgeon I observed the 70 year old couple leaving and the discussion I over heard. He responded with "keep one hand touching the house, I have to be so literal with you ladies. "  I greatly appreciate his conservative approach. He has a true care with best intentions at heart. And he lets me cry when I need to cry. You will be happy to know that I was all smiles yesterday. I hope the same for Ms Hattie, as I will call her. I know she has a long road ahead.


Headed out to the appointment. Excited for drain removal day. 

August 12, 2015 - Let it "be".

There have been moments during this 3 year journey where I felt “less”. Less of a person, less of a wife, less of a woman.  Not necessarily in the way you might be thinking, but rather in a “why did this bother me so much” kind of way.  I felt guilty that this would get under my skin sometimes. It's hard to admit that in the open like this. But it's honesty. And honesty is important in this. There were moments when I felt like I should be doing “better” at all of this. I would get so frustrated with myself when I would get upset. I scolded myself when I would cry at the smallest of things. I felt like an idiot when it took me months to look at the scars after the second surgery. The only reason I looked after the first surgery is because the medical resident came to remove the bandages the morning after surgery not knowing the Lead Breast surgeon didn’t want me to watch him do it. (you can find the start of that story here Part 1 and the end of that story Part 2 ). So I can’t even take pride in the fact that I looked. It sort of just happened. There was one moment in my very first solo shower that I looked, but I ended up balling my eyes out in the process so where is the pride in that? (I know there is some pride that can be found there, but you really wanted it to be a “better” moment for yourself.)

If this surgery #6 has taught me anything it’s this. 1) Sometimes you don’t have control over your emotions, and there is no shame in that. 2) The exact same experience on paper can be a totally different experience from one person to the next.  3) Time heals everything. Maybe not fully, but enough to do things differently as you go.  

It is not that these are totally new revelations, but certainly a heightened awareness of. 

I’ve really had very little “trouble” this go round. The drain is the perfect example. I recall meeting people along the way who kind of looked at me funny when I relay my intense dislike to my drains. They truly were one of the most physically painful parts of surgery 1 and surgery 2.  So when I would hear women say they didn’t have this intense hate for them as I did, I immediately felt like I must have been very high maintenance with a very low threshold for pain. I felt “less” of a person because I let the drains bother me so much. Well, little did I know that sometimes drains truly don’t hurt all that much. I had never experienced that before. And I have no idea why the first 2 go rounds they would bring me to tears and this go round I sometimes forget it is there. It’s a terrific reminder that though 2 women can both have a drain, one may be super painful and one may be neutral. That’s not a reflection of the woman and her pain tolerance, but maybe a reflection of the state of the breast, or the technique it was put in, or whatever reason. The women loathing the drain is not “less”, she is just having a different experience for no fault or reward of her own.

The scars are another example. I mentioned my ability or inability to look at them during these surgeries. The first and second go round (which really could be one experience in and of itself since the two surgeries happened with 2 weeks of each other) it took me MONTHS to really sit down and look at these scars head on. It was simply a mental block, that I was having a difficult time trying to navigate. It was primal. It was innate. It was some block that I couldn’t surmount in that given moment. But with surgery 3 (cellulitis and implant replacement) and 4 (lipografting) and 5 (skin tuck), I really didn’t have any trouble at all mainly because there really wasn’t a new scar per se. And now that we have surgery 6, though I haven’t looked yet, I think it will come very soon. And I don’t dry heave at the thought of it, which really is spectacular since I have done enough heaving in the past 48 hours to last me a lifetime thank you very much.  So it isn’t so much the scar itself that is the issue, but rather my underlying state of mind at the moment the scar occurs. For the first 2 surgeries, going boobless for a bit really messed me up. I would have never dreamed that would have been the case. But it happened. And it was deep. And that scar represented something else at the time. I don’t know that I will ever have that fully figured out, but I know that the scar I have today with surgery #6, though it truly is the exact same scar, is more of a triumph than a hill to get over. I’m not “less” for what I felt then, and I am not “more” for what I feel now. It is just different. And Bessie Sue most likely will feel something totally different in the exact same details.

So we need to quit being so hard on ourselves. Yes, things can always be worse, and yes, things can always be better. But things can also just “be”. I am no less of a woman, I am no less of a human, I am no less of a wife. In fact, after these six surgeries, in many ways I am “more”.  And you are no less of a woman/human/wife/mother for whatever you are navigating (in 95% of cases anyway; there are times we simply make bad choices and continue to make them over and over again) and you can just “be” without comparing yourself to Trudy Mae down the street in similar circumstance. Your journey is yours. And you should be empowered by that!

I’m heading back to that room again in a few hours. That room of emotions. The Breast Cancer Center Waiting Room. I used to walk through that room all the time (before surgery 1) with little to no thought of its contents. It used to be a room full of people waiting for an appointment. Now, it is so much more. A woman waiting to see if the lump means anything. A husband trying to hold it together because he knows his wife is mentally hanging from a thread. A grandmother who really wanted to be at the card game last night, but was instead puking her stomach out after the chemo dose. A graduate student who now has one breast and is trying creative ways to make that obsolete to the “guy” she met who could be the one. A newly wed who simply wanted to start a family and now has to put that on hold. The 40 year old wife with no kids who chose to have a double mastectomy because she was dead set against going through breast cancer having already beat cancer once but had no idea what she was getting in to (yeah, that one is me).  It’s hard to walk into that room the same way I used to oblivious to what that room contains. And now I walk in knowing that for each of these, there is nothing "less" in what they are experiencing. And I really hope they figure that out too. 

The stories change you. And I’m oh so glad that they do. 

August 11, 2015 - A near case of community puker

Everything is on about a 2 second delay. You speak your sentence to me, 2 seconds later I hear the first word, but by then you have finished the sentence and I missed the rest of it. You ask a question. I know what you asked, but it takes me 2 seconds to figure out the words I need to respond. Blog posting takes forever with more "backspaces" that progress forward. I'm simply slow to do anything. You can forget multitasking. It doesn't exist right now, though I am an expert at mutitasking, and multitasking well. But the art form is lost on me today. The record speed is stuck on wobbly slooooowww mmmoooootttiiiiooonnnn.

I'm blaming the poor sleeping last night. I started out in the bed and slept a few hours, then stared at the ceiling a few more hours, then navigated myself into the floor beside the bed ( a sight!) nestled between 3 pillows, on one pillow, and with my knees over 2 pillows where I got a few more hours. Then, neglected to remember that getting onto the floor is fine, but having to get up off the floor without using your arms is a whole other ordeal. I want you to try it. I should have thought that through better in foresight, instead of the comedy that would ensure in hindsight. Go ahead. Mentally strap your arms to your side. Start standing up. Lower yourself down onto your back and then roll onto your a"safe side" and get back up again. You will cheat, as I do, and use at least your right elbow and left palm for 3 seconds while trying to convince yourself and your husband watching that you didn't. The alternative is spending the next 2 months stuck on the floor. Now imagine all of that that with a drain in your side and stitches in your chest. And the urgency of needing to empty your bladder. Really, that just really makes it more delightful. No laughing in the process, that creates a bigger ordeal and a mess to clean p when you couldn't get up quick enough for the potty break. It's crucial you stay purposeful and driven. ; )

I can also blame the anti-nausea medication. The heaving returned full force this morning almost immediately after waking up on the floor this morning. We sat down to empty the breast drain and in under 5 seconds flat I was in full abdomen heaves and this wave of nausea continued for 3 hours. At one point, I was laying naked on the bottom of the tub in 6 inches of water (after having finished a sponge bath) while holding a puke bucket. Another sight to behold. Moving made it worse, laying in water made me ...well it made me clean and that just needed to happen. Then noon came around and 2 anti-nausea doses later and I was semi-good to go again. That's how it rolls. Come on super quick and stay an hour or stay all day and then be gone almost as quickly as it came. There is no gradual onset/offset. It's WHAM! Full steam impact.  I wanted so very much to be good for today since yesterday was such a great day. My parents and sister (oh the excitement!) were coming for a quick lunch with me and I really needed to be great. Well, I settled for not puking at least while they were here. My sister is a community puker, so it would have been quite the disaster had I wretched in her presence. Blessings that both I and my sister maintained our stomach contents and now that they are gone, I am hoping the evening remains uneventful.

In summary.....everything on a 2 second delay, severe nausea, heaving, naked in a tub holding a bucket, lunch without puking, now on the sofa for the rest of the day. Re-do with anticipated improvement planned for tomorrow. The roller coaster of post surgery with Sally.

Tomorrow is the followup appointment with Lead Plastic Surgeon. After a little show and tell, the drain coming out! I'm super grateful! Though, I truly hate the moment around removing the drain. Clip the stitch and yank out the tube. All 3+ feet of it (how they get so much tube coiled up in a small space I will never understand). I don't love it. I don't watch it. I sit on the exam table singing twinkle twinkle little star. But I am ready for the other side of the drain. Get it out! Only a small bit of hyperventilation.

August 10, 2015 - Apologies to Mr. Stay-at-Home Dad Minivan Driver

I just snuck out of the house. Ron was working at the breakfast table and I pretended to head to the bathroom and Shazam! Out the front door I went! You can blame my mom. She's free spirited like that. I just got off the phone with her and she planted the seed asking me if I had been walking yet. She's know how much I detest being stuck in this house for days on end. (Yes, ladies, I know you love having some time not at work and at home alone without kids, and errands, and stuff, but there is a huge difference when you HAVE to be at home). Yesterday, I tried to walk, but it was so hot and humid. And when I mean walk, I mean like to the mailbox and back all of 30 feet. But I knew Lead Plastic Surgeon would kick my hiney if I sweated with these stitches in and a drain still in place. So I abandoned ship at the front door. But today, while on the phone with mom I saw the overcast skies and knew today would be my chance! I hung up the phone and sleuthed my way down the front hall way quiet as a mouse to the front door, Pushed it open, and there it was....my escape! Full disclosure, I walked maybe 40 feet and at all times was in my yard, but it felt like I was in Nantucket headed for a picnic with a blanket and cheese and crackers. The breeze in my hair! And I admit I broke out in a little hip jive at my feat! Sorry to Mr. Stay At Home Dad who so unfortunately timed his drive by in the minivan right when I gave the little hip jive to the side to the fake music in my head. Your kids are probably scarred for life at that sight! Picture Elaine/Seinfield. Enough said. Thanks mom for planting the seed. I shall repeat the escape tonight and this time I will take Ron for a longer stroll. I may just add 10 more feet and bring real music. These escapes keep you sane. Or at least bring you sanity for 10 minutes and sometimes that is all you need. Mastectomy tip #165. Find a way to get outside, even if it is to a chair on the back patio.

I'm having a great day. And that makes me a little "high" on life. Gone is the nausea and dry heaving and I welcome in a little boost of energy. In mastectomy, as with any event that lasts more than a day, you find you sort days into simply "good" or "bad". This is because every day has a little good, and every day has a little bad, so you find the trend of the events of the day and then  place the day on the scale for final categorization. If you spend more of your day on the success side, it is good. If you spend more of the day moody/nauseated/in pain, it is bad. Simple calculations. I'm not keeping count, but I have had only 1 bad day since surgery. This hasn't happened before and it is well worth high-fiving over. And today, I am going to open up the option of "great". Whoa, step back! Sally has lost her mind! No m'am, I am just playing the optimistic card. I usually reserve the "great" categorization for much further out, but this drain (Sir Gregory) has changed my world! He simply co-exists with me. Not friend. Not foe. And believe me when I tell you that this is life changing when it comes to breast drains. Nobel peace prize kind of stuff. Yesterday, he only sucked out of me 10 ml of fluid. He's simply doing his job and leaving me be. And for that, I am opening up "great"! I also showered yesterday. Sort of by myself. As in I stood in the shower, and Ron stood outside the curtain handing me stuff back and forth. Soap, wash cloth, accolades of "you rock!". No tears. All success! He did have to pat me dry and dress me since I can't bend and reach very well. You should see the calamity of trying to get a sports bra on when you can't raise your arms. Lucy and Ethel have nothing on Ron and I in those moments. Contorted this way and that and then getting it on only to see the front is really the side and all sorts of mishap. But we find our groove and manage to get both boobs squished into place with minimal pain or words of vain. But one step closer to independence. See, it was a very good day. And today, God is sending me thunderstorms according to my weather app. It really can't get any better.

Sleeping is a little bit of a challenge. I am a side/stomach/side/stomach sleeper. I am basically all over the place in the course of a night. But with mastectomy surgery. Your only option is on your back. You may have the luxury of choosing flat or elevated, but the back is where it is...for many months to come. Sometimes you just need a little side roll. And little snuggles with the side of your face on the pillow. And clutching of the knees up to the chest and the blanket tucking you all in. You get to where you crave that. And you loath that you can't do that. It is kind of like where you only crave chick-fil-a on Sundays. The only day they are closed. But worse. Last night, I got very creative, though unsuccessful in my attempt to fake my mind into thinking I was on my side. I shoved a pillow up on my left side so I could pretend it was the mattress. And I turned my head to the left to feel my face on the pillow case. It was a miserable substitution, but just another glimpse in this world. Side sleepers unite! I definitely don't take it for granted.

I've been off pain meds now for almost 36 hours. It helps not having the "fog" that comes with that. And the pain really is quite minimal this go round. Again, likely due to the location of the incision and not having nerve endings in that area of the breast. Lead Plastic Surgeon evidently noted that while he was removing the scar tissue. While he had to take out more than he anticipated, the lack of nerve ending helped me out. That's an interesting "tidbid" in mastectomy. When the breast surgeon removes the breast tissue along with that goes the nerves, the blood supply, the fat, the everything. Everything between the skin surface down to the pectoral muscle. So you are left with virtually no sensations in the breast at all. That's good when it comes to pain perception. Bad when it comes to other things. It's almost like a phantom limb. Sometimes you itch, but it is an itch you can't scratch. And sometimes you have severe pain, but the pain is hard to get to. Hopefully, over time, some of the nerves repopulate the area. Sometimes they don't. It's more of an issue with blood vessels as you really need to have blood supply to the area to support the skin left over and such. No blood, can mean cell death. I say all of that as background that it is a blessing that I don't have nerve endings in this case because it really helps with the pain control. I have an incision I virtually can't feel. Instead what I feel is bruising more along the under fold of the breast. And this makes sense because that is where I start to have feeling again. And this is where he dug out most of the scar tissue. And then there is a feeling of "fullness" where there is swelling under the skin due to the manipulation. Ok, science class over, but maybe some of you like this type of information. Makes the pieces fit together a little easier.

The thunderstorm is almost here. I'm feeling a little giddy. I'm taking myself to press my face to the window. I will be there for a while. Ron has to go to the store today. I may try and con him into letting me be the chocolate lab hanging out the back window. Whoa, I am really breaking all kinds of boundaries. Thanks, mom.




August 9, 2015 - Continued Post op day 2 -The Aftermath Arrived

Well, we found ourselves right in the middle of the aftermath. What a successful Friday we had with virtually no pain and great demeanor in tow. We were on a "high" of success at how well this was going and were passing each other mental high-fives considering surgery was just 24 hours before. We were sailing!

Then.....Saturday came. It was an absolute crash and burn. The aftermath had arrived and it felt relentless. But not in the ways we expected. The morning started out really well. We were rested, my swelling was reducing (I virtually had peed out Lake Michigan) and the pain was almost non-existent considering what it could have been. Then with one stop at the stop sign and a left turn it went downhill with no brakes. The rush of nausea was overwhelming and as the day went on it progressed to heaving and hoeing over and over again. Heave after heave without much output was wrecking the "does and don't" lists of post surgery. I literally asked Ron to make sure the drain was still stitched to my side (it was.) after one round. The only thing we can think is that the anti-nausea meds used during surgery had worn off and using the pain medication was adding to the problems 10 fold. Additionally, every thing I ate was getting stuck in my esophagus, perfectly portrayed by the snake swallowing the egg. I could not get anything to go down. And it was frustrating. Because surprisingly I was hungry. It was just a big ole situation of ugliness. All-day-long. The good news is we figured it out like we always do and we just got through it, because we've had worse and there were silver linings in that I had little pain and the drain was still my friend.  We just stayed focused as we knew we still had to do the mandatory shower and bandage removal at 48 hours.

Long gone were the aspirations of capturing some photos for you dear ladies, and our only goal was getting through the shower with the contents of my stomach in my stomach and not part of our shower and with as little tears as possible. We became very goal oriented and just got it done. Thankfully, Ron excels as being task oriented, so we made the list and mentally checked it off as we went.. We had the foresight of my lying on the bed so we could get everything off without me falling face on the ground. First went the shirt. The surgical vest.  The gauze fluff. The betadine orange crush slush. And then the bandages. I really wanted to capture a picture of the bandage for you, but as we got down to everything there really wasn't a way to do that tastefully, and I was just on super speed mode of getting this off our plate and me back to the sofa. Ron gently peeled the edges up (I recall him saying something about fort knox and that these boys sure did know how to seal a bandage) and was able to get it off with very few tears from me. Underneath, everything looked like it should - 7 or 8 steri strips over a glue sealant over an incision running north to south under the nipple (the same incision we had before just now reopened and resealed) and deep under the skin another set of stitches. Off to the side, under the arm pit, is the drain insertion site also bandaged with a stitch holding the drain in the skin. I now can say all of that without heaving. A huge increase from surgery number 1. I haven't yet looked at anything as yesterday was all about getting everything done and me back intact to the living-room. But Ron inspected it all and gave me the thumbs up that we could head to the shower. Basically it was more of me standing zombie like at the back of the shower while Ron did all of the work. I'm still restricted in that I can't raise my arms or use them to pull or push anything. So there is no reaching, no lifting to wash my hair, no anything. Basically, you are the car at the car wash. And very honestly, you just want to get through it. And we did it. And only with a few spilled tears. MAJOR improvement from previous times. I'm over achieving. We got the hair washed a dried, a sport bra back on, and back to the sofa I went...then, I'm sad to say for all of you that were praying me through my day.... it went further downhill. The GI symptoms came back in full force and that was the rest of our day. I will spare you the details, but know Ron and I have a few more moments under our mastectomy timeline and we were very grateful to be climbing into bed last night with hopes of today bringing something better. Though Ron gets total kudos for the rock star that he was. I get nothing. I was a wreck. I felt awful. Every heave had me exhausted and ever ho had me grabbing my drain. Needless to say, we slept 10 hour last night. No more vomiting. A little more settled stomach and as of mid-day yesterday, no more pain medications. I am choosing my battles right now and I would rather have a little soreness than experience anything close to yesterday again. I'm going med free and wishing for the best! 

Today, I've successfully swallowed some yogurt. I have very little drain out put. And I am upright with no heaving and for the record and full disclosure, my lower gut is empty as well. I'm starting fresh today. A friend just dropped by some food for dinner so that we can think a little less about meals today and more about feeling better. Our goal is simply to be most improved. Yesterday, I didn't pass the SATs though my pencils were sharpened, and today I get to have a do-over. And I am grateful for that and that has me feeling a bit more optimistic. Though I fear another shower is going to have to come....baby steps. 

We did it and Ron did smile at me this morning and I at him. We are always better for the worse. Post op day #2 done and now off to #3. 

August 8, 2015 - Post Op Day 2 - Reviving the Sock Trend

I've learned when I ask you for specific prayer focus, you come through with flying colors. Yesterday, it was pain control and excess fluid accumulation. You came through for me! Thank you. I think I peed an entire ocean last night, and today we can really see the difference. My hands are no longer painful and the swelling is coming down. While I can now feel Sir Gregory (the drain), it is still way better than it has been in previous surgeries. So we celebrate that win.  I am having some skin breakdown under the surgical vest where the seams meet my skin, but we will get that all salved (ya'll know I hate the word salve) up in no time and it should only cause some irritation that will hopefully go away when I get into a softer sports bra. Ron and I got a little chuckle when we started grabbing running socks and shoving them under the bra seams. I thought the days of stuffing bras with socks ended years ago. = ) But alas, we revived the trend and you would have laughed at the outcome. One striped sock here, one polka dot sock there. But boy did they do the trick, at least temporarily saving me from the seams.

So I now need to shift your prayers to nausea which hit me like a 95 mph truck this morning out of no where. I sat down to eat breakfast and I didn't even get the first bite before Ron was running for the bucket. Massive hot and cold flashes coming in waves. So we have delayed the surgical vest removal and shower until that subsides. I didn't want to be in a shower when that hits me again and it is really zapping of my energy reserves. The shower is tough enough for me I didn't want to add that to the picture. I think the amazing anti nausea regimen we used yesterday just finally wore off. Thankfully I had some left over phenergan from previous surgeries so I am not loaded up on that. Pray this stays under control because there is no fun in yacking with a drain in and also it wipes my energy out which thwarts the timeline we had in place for the mandatory shower we have to do today.

So this is just a quick update for focused prayers. I will get a more detailed update done tonight or tomorrow after the shower. I'm actually looking forward to the shower (that's a first!) simply because I am ready to get out of this vest since it is aggravating my sensitive skin. And as promised, I will try to capture some pics that I missed taking the previous 5 surgeries. For those of you facing this in your future, pictures are a way better descriptor than words.

As always, thanks for your pushing me from behind. The hill is so easily traversed with all of you in tow.

August 7, 2015 - Surgery #6 - Post Op Day 1

Three years ago today I had my bilateral mastectomy. Most people celebrate with cake and ice cream, or maybe dinner out, or even a trip to commemorate the moment and the purpose it served.  Me, I celebrated with another trip to the operating room. I imagine you are up to date on that by now, but if not, you can find the details in previous posts. No worries, I am going to find a way to have ice cream again today (again in that my dad got me goodberry's yesterday) as you can't have it too often. Thank you so much for all the thoughts and support you offered Ron and I these past 3 years over the span of 6 surgeries. I promise you an update on yesterday, so here it goes. Hang in there with me as there are jumbled medicated thoughts, but also a lot to cover not so much for you casual readers, but I want the whole picture for women who may find themselve in similar shoes. I am trying hard to capture the technical details for you this go round instead of just the emotional aspects.

Yesterday started super early. We were up at 4 to shower (the full scrub down with antibacterial scrub) before needing to arrive at the hospital by 5:15. Surgery was scheduled for 7:30. On the drive in, in the dark and passing very few cars, I was able to sit back and reflect on this moment. My sweet husband there beside me ready to dive in head first for another round of care giving. He's the best, you know, and this journey has been all the more do-able because of him and all he is/does for me. Today would be no different. He's been checking in with me all week asking me how I am holding up. He knew this road was going to be tough for me mentally again and he wanted to stay ahead of that. Surprisingly (or not as so many of you have been showering me in prayer) I was feeling very peaceful. Thank you for that, for getting me there!

In usual fashion pre-op took a while for me. I have the most ornery veins I inherited from my mother. Stick one and the vein blew. Stick two, successful but only enough to infuse one med to get me asleep. They would have to place a better line once they had me under. I consider this a win because last time it was 4 attempts. So we were already off to a good start. My sweet little nurse, Stella, was doing orientation, and I don't think she knew what she was getting when she signed up for my case. Next came the anesthesiology group. Also another win! Dr. Anesthesiology had taken extra time the previous day to read up on my history because he had heard of my mishaps with the medications and wanted to be proactive in coming up with a good plan, so he and his resident came in and sat down with me in advance to discuss what our options were. Historically, I am very difficult to get under and very difficult to bring back out. The last surgery it was 12 days before I had rid myself of the "medication stupor" which was really scary for me and Ron. So he was extremely thoughtful in his approached and wanted to involve my thoughts in the plan. I have a lot of medication allergies most of which are related to narcotics. I also have lot of nausea following procedures and yacking with stitches in your chest is a little less than entertaining. Needless to say, his proactive approach scored many points in my books and we have a very successful post op recovery as a result. And so far, not a single bit of nausea (thank you, Emend.) 

Next came lead plastic surgeon with his trusty black sharpie pen. I charged him the usual fee and slipped the gown down for his ink up. Incision here, stitches here, scrape out tissue here, drain here, and so on. I've heard wind that he is very matter of fact and no-nonsense in his care giving, but it has been so great to see him now joking around with me and giving in to my prodding to lighten his demeanor. Yesterday, he cracked a joke about how if I just stood leaning sideways, this boob mishap wouldn't be so noticeable. And said when I am eighty, my boobs will only look 40. He's come a long way! Plan was now in place, boobs were Picasso-fied, one last visit with mom, dad, and Ron and I was off to the OR. I remember lying on the table and looking up to see the anesthesiology resident and thanking her for being there in a room full of men. I was expecting her to represent on my behalf. We gave a high-five then she strapped my arms down and introduced me to my versed infusion.

Surgery was about 2 hours and Ron met with Lead Plastic Surgeon afterwards for the full update. Everything went as planned there was just a little more scar tissue in the breast than he has imagined going in. He was able to take the implant out, put it in an antibiotic soak (the implant went to the pool!), scrape out all the scar tissue, then put the implant back in after it finished its swim. Who knew my implant would spend the day at the pool while I was passed out on a table? Now he is all back in place with sutures, glue, steri-strips, bandaging, and a new next door neighbor, my friend the drain. And life is back to post op recovery mode. After about 2 hours in recovery, I was able to go home. I recall Ron going out ahead of me to get the car, so the transport team loaded me up in a wheel chair and pushed me out into the waiting room and there stood my sister-in-law, Megan, Ron's mom, and Megan's boyfriend. For the first time that day I cried. I thought I would make it through with no tears, but seeing their faces and my mom and dad starring back at me reminded me the value of family and what purpose they serve when you find yourself in an aftermath. The love was more than I could hold and the tears just came. I will forgive those tears as they came from a very sweet moment! I was trying so hard not to cry this go around. 

We got me home with the help of my mom and dad so Ron could run out and pick up prescriptions and some lunch for us. Ladies, keep this in mind, if you have surgery you need TWO people with you the day you get home. You are too groggy to go on errands with your caregiver and riding in the care is less than delightful, so you need someone to stay with you while he/she goes to get your post op antibiotics and such, Planning tip #423. Planning tip #424 - make them come back with ice cream. Your throat is going to be very sore from the intubation tube (for whatever reason this go round has been the toughest for me in that). Anyway, having mom and dad here that afternoon to help us just find up from down was super helpful for logistics and just for the emotional support that comes from people that love you.

I'm so lucky in that I have had terrific pain control this go round. Nothing is perfect, but it is a huge improvement from what we were expecting. The surgeon had warned Ron that because there was a lot of scar tissue removed, it could be painful later that day, but having very few nerve endings in my breast (there were removed with the initial mastectomy) has been a great treat for me. And guess what? I have virtually no pain at the drain site. WHAT!?!?!?! How can that even be? I had the absolute worse time with the drain the last three times I have had them, but this go round it is as if we are best friends! I can now love him for the healing he brings instead of loathing him for the pain he brought. I've named him Sir Gregory and we've become tolerant of each other. I will get some better pictures for you tomorrow, but below you can see the suction bulb on the end and how we drain the fluid out in a measuring cup. The fluid starts bright red and over several days will start to clear to a light tea color as the internal bleeding lessens.  I'm grow able in that who ever would have thought I would find appreciation for a drain. Sir Gregory, you have earned a place at my table/boob. I'm also happy to report we have emptied it twice now and the volume is already decreasing and I haven't shed a single tear with that. The drains can be quite unbearable most of the time, so for me to be having this neutral experience with it this go round is only a testament to the power of your prayers. I had you praying for 2 specific things - the drains and my emotions. Both are soaring high!

So let's transition prayers to this now:

1) We need some sleep and I need to get some fluid out of my body. We were up at least once every 90 minutes (I stopped counting after my 7th trip) throughout the night with me having to go potty. I have so much fluid on board from all of the drugs, the IV fluids and my general ability to retain water. Last night, my arms and hands had swollen up to the point that I couldn't bend my fingers without a lot of pain. So we are working hard to get the fluid out...and that means multiple trips to the potty around the clock. Well because I am not coherent per se, Ron has to go with me. And because I can't use my arms, he has to dress and undress me for the potty trips. Somehow we are not only civil, but joyful this morning after very little sleep. I love that about us. 

2) Pray for the pain control to stay so well managed. I really couldn't imagine it being any better considering what all happened to the breast yesterday. It is swollen, but that will lessen over time. And my hands are still really swollen today, so pray for all that pain to stay manageable. 

Tomorrow is a big day in that the surgical bra gets to come off. We will take the bra off, remove the top set of bandages, and inspect the incisions underneath followed by a shower. Ok, this is where I will be at risk in having some tears flow, but I am feeling optimistic! I will get you pictures tomorrow of the surgical bra and bandaging if I can capture it tastefully. And also of the drain incision so you can have a mental picture (those of you that may need this information in the future,)

I feel sure this post is all over the place with words and such. My apologies for that, but it is what I could get on the screen at this current time with these meds on board. Most of all I wanted to update you since so many of you reached out to me yesterday and I couldn't get back to you in real time. Your love is so evident and that is what gets us through mastectomy! Thank you from Ron and I and boob 1 and Boob 3.0 (the surgeon said 2.3 wouldn't suffice after all this effort on his part).

Love you all and more updates tomorrow.

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August 3, 2015 - Pencils sharpened

She emailed me today, asking me to call her when I get a chance. As soon as I saw the sender, I knew what it was about. I’ve hit the 2 day window before surgery. Somehow seven months have passed and now here I sit with Thursday morning staring me in the face. I waited to call her back. I pushed it off on purpose. I wanted a few more minutes of not having the discussion. I was controlling the situation. I’m admittedly bad about doing that.  

You need to shower the night before and the morning of surgery. You are first case, so you need to arrive early. No makeup, no deodorant, no hair product, just come fresh from the shower. He will be taking the implant out on the right side and removing scar tissue then replacing the implant and placing drains and stitches. He will tell you all of this again the morning of. After surgery you will wake up in a surgical vest. Keep the surgical vest on for 48 hours. Keep the fluff in place and just let it be. Every 8-12 hours empty the drain and record the volume. Your goal should be less than 30 ml in 24 hours. The drainage volume should decrease and the color should become lighter with less clots with each passing day.  If volume increases, call us. Forty eight hours later, take off the vest and inspect the incision sites. Remove the bandages, if there is significant redness, call us. If redness grows after that time point call us. You can start to shower after 2 days, no scrubbing the site, just let water flow over it. Do not let water touch the drain insertion site, keep that bandage in place until the drains come out. Come back a week later and we will see if we can remove the stitches and take out the drain. No lifting until further notice. (And I quote) “Keep your arms pterodactyl style.” (And I just now learned how to spell pterodactyl!) Stay in a sports bra 24 hours a day for the next month. Don’t forget to bring a picture ID when you check in.  (By the way, why in the world would that be needed? Would someone really sneak in and try to change places with me for this specific surgery? Just saying. If you would, give me a call.)

I called her back. This was her instruction. All of which I could have stated verbatim. I am a pro now. But it was refreshing to know I didn’t have to rely on my memory. But the phone call also made it totally real.  Not even 12 hours later, the phone rings again. Anesthesia screening. Yep, it’s really happening. They certainly won’t let me forget it.

It’s that feeling you get when you were sharpening your pencils before the SAT exam in highschool. That is almost exactly what it feels like in this time period leading up. Your stomach drops and you feel the underlying nausea, and your heart rate isn’t exactly at baseline. There is nothing you can do but go in and sit down at the desk. It’s simple awareness of what it is. It’s not fear for me; it’s dread. God’s will supersedes my own, so I fear not the outcome, but I certainly don’t want the recovery time.

I still have laundry to do, bed sheets to change, clean towels to hang and meals to prep and freeze, but I’ve already done a lot to make every day moments a tad more manageable in the healing period. And what I have neglected to accomplish, Ron will step in to complete the task in real time. He’s good like that.


Thursday morning 7:30.  My pencils are sharpened. Now, I just need to sit down in the desk. 

August 1, 2015 Wardrobes you don't even own

One benefit of rationale thoughts this go round is you are able to think of some really practical things you can do in advance of surgery to make post-op less stressful for your spouse (and yourself!) Ron and I spent the morning working on some landscaping at a local school with our church. What a treat to see so many people come together to better school environments for the upcoming year. I love that this group of believers feel so passionate about local missions. And it was a perfectly timed reminder of service for other people. Well, after an exhausting few hours in the heat, i found some A/C and sat down to make the to do list of all that needs to happen in the next four days. Laundry, cleaning, etc. But high on that list was tackling the waredrobe...all with my spouse in mind.
One very frustrating thing post-op is what you can and can't wear. For the first 48 hours you are stuck in a vecroed surgical "bra" stuffed full of "gauze stuffing". It's hysterical (and sad) to look down and see this stuffing oozing out of your cotton contraption meant to hold everything in place. Well this "bra" is pretty bulky and cumbersome, so only certain shirts are going to fit over and contain this masterpiece. Plus, there are two drains bubbling out from the underside. Oversized and soft is the only suitable option for shirts, and also old because inevitably you will ink iodine, left over from surgery, onto them. After 48 hours in this delightful set up, you score the big win and "get" to transition to a normal sports bra. One you've cut little notches into to keep the elastic from pressuring into the drain tubes.  The sports bras are suitable for about a month, then you get to graduate to adorable little flimsy brassieres minus the adorable and absent of the necessary under wire you've learned to embrace since adolescence. These are your wardrobe partners for about two months. Perfect for an evening on the town! ; )
Then there are pajamas and pants -yoga style is the ONLY way to go because your overwhelmed spouse, or sister, or mother, or dearest friend ever have to help you get all of this on you with little to no assistance from yourself. You can't raise your arms, lift any weight, or "pull" or tug with the affected side(s) for many weeks. So you get to rely on your life savers to somehow get you from one days wear to another, all without yelling because he can't find the blue tshirt with a grey sportsbra, underwear, and grey yoga capris, while you sit back trying to explain which drawer each can be found in and in which laundry basket in which bedroom, then remembering in your medication induced stupor that everything you just described you don't even own but are what you saw your friend wearing at the landscaping project at the local school with your church group. Yes, there is high probability of chaos and shed tears simply trying to navigate with your life saver the need to get something on your body, in a reasonable time, that actually fits.
So while Ron is in the backyard finishing up a yard project we started weeks ago, I'm inside creating a post surgery corner in my closet of sortable wardrobe items that can be grabbed at any time by my sweet Ron. Bras laid out in stages of when each can be worn. And yoga pants, and shirts, and undies. He's going to be so grateful when i show him because we certainly didn't have this mastered in the five times previous. Old dog, amazing new functional tricks that save your sanity when you are walking the thin line in mastectomy surgery, or any surgery for that matter.
Next, spaghetti sauce frozen in baggies for thawing. Then freshly cleaned bathtubs so we can take our pick of which will be easiest to navigate for shampooing and pouring a cup of water over my hair.
Oh the things you learn and wish you had known the first few times around. Now it's here for you.


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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.