December 30, 2014 - The club you never wanted to be in

I opened the email to read that this very morning she had been tested for the BRCA (breast cancer) gene. Her mother had breast cancer in her 40’s and the daughter’s gynecologist recommended she get tested. Insert that dreaded feeling of having sent off for a test and now waiting the weeks for a determination. Not a fun few days, I imagine. I was surprised to find that the email was asking me for words of advice. My reply was a simple “no words until you have a definitive answer” and uttering on about panties in a wad for no reason, hoping for the best, may be a moot point. But the email had my mind pondering. What WOULD my words of opinion be?

A few summers ago I pondered this question for myself in a blog post titled “The Burning Question” (http://tradinginthetatas.blogspot.com/2013/05/may-5-burning-question.html). I recall asking Ron “did we make a mistake in doing this?” As we dissected that question and in turn wrote the words on the screen, I realized regret would not be in my vocabulary of this experience. I don’t want to answer that same question from someone else regarding what path they should choose. It is a personal decision that no one can really walk you through or to. We can share our experiences, but a choice to undergo prophylactic mastectomy is not a decision I want to help you make. Not because I don’t deeply care for you and want to support you, but because I don’t want anyone to ever look back with regret and think of my words of advice. Nor do I want you to find yourself grateful for your decision and think back to my words of advice. Instead I want the decision to be all yours but based on being informed either through the eyes of my experience or that of someone else you may know on this same path. You may fly through with flying colors, or you may find yourself status post multiple surgeries and complications. I simply want you to know that each surgical outcome is individual and not necessarily predictable. You may find yourself consumed with emotions or you go in the OR one day and leave that same day all the same. It’s not predictable. And experiences are certainly not transferrable.

In prophylactic mastectomy:

·        You may feel guilt. As one person put it “we just picked up our ball and went home before the game even started.” We chose to dodge the bullet instead of facing the beast. There’s guilt in choosing that path as so many women face breast cancer. You can at times feel lesser of a woman as a result. But as another friend put it “no one looks down on you for saving your life”. There is no shame in being proactive.

·        You may feel vain. You lop off both boobs in a life sparing measure and find yourself maybe not totally loving their reconstructed counterparts. It would be less vain to remain boob-less indeed, but as I learned in mastectomy, these things carry a powerful sense of self that you would never guess until they are no longer at home on your chest. Sure we banter and prod each other with jests of sag and droop and sizes of miniscule and boulder proportions, but the minute they are no more, you find that sag and droop was absolute perfection. These breasts that use to be a nuisance now carry with them a sense of womanhood and you find just how endearing they can be when you choose to make them no more. My one point of advice I will offer, if given the choice, do immediate reconstruction. If you don’t have that choice, just know you may feel some things you have never felt before during the waiting period. And it’s normal.

·        You may feel pride, and that emotion will surprise you! There is a sense of pride when you can bring yourself to choose removing your breasts. Kind of a feminine empowerment. Or maybe a sense of if I can do this, then I certainly can do (insert whatever you want)…. It’s subtle, but it may be there underneath the other emotions that take forefront on any given day.

·        You may feel financial burden. Even when covered by (and even encouraged to pursue) insurance companies still only pay the majority. The reminder is still rather pricey. So know this in advance. Ask questions up front and get price estimates and quotes from your hospital. Insurance companies are required by law to cover reconstruction if they cover mastectomy, but it still isn’t 100%.

·        You may feel frustration. You will have many restrictions immediately after surgery. You can lift this, you can’t life that. You can take a sponge bath, you can’t shower. You can’t change your own bandages, depending on where they are. You can’t change your clothes by yourself when you can’t lift your arms. And for risk of being too blunt, you may or may not need help in the bathroom. You will have to rely on someone to help you in many areas and for those of you that are super independent, this is incredibly frustrating.

·        You may feel a strong need for a female friend. There are going to be some female things your male counterparts just won’t understand. My husband recognized this early on and called in my mom for reinforcements. Find yourself a gal you want to do life with and put them in your mastectomy pocket. There will be plenty of moments for female laughing (and maybe crying).

·        You may feel indecision. No matter which option you choose, removal or not, you will wonder if you made the right decision. Particularly when things get tough. But as with any choice in life, you do the best you can with the information you have on hand at the time. Do your part to educate yourself, choose, then don’t look back.

·        You may feel nothing at all.

So instead of advice, I can only offer up this 130+ page blog of the triumphs and trials of boob 1 and 2.2. I don’t regret my choice, though it was plagued with 3 more surgeries than intended at the point of the decision, as I am wiser for it and now most certainly to be breast cancer free. After all of this uttered on the many preceding pages of screen, I still would lay down on that table as I did August 7^th. But I know many may not choose that same path given the same experience. In fact, I still haven’t found another woman who chose this fate in my same circumstance (though I am sure she is out there), but I have met many who have chosen his path in response to a BC diagnosis or a BRCA gene confirmation. If you choose to “go for it”, these are women who can share their perspective with you because though we all had very different and similar journeys into mastectomy, I know not one who won’t choose advocacy for you and yours. It’s a club you never want to be in, but once you find yourself inducted, you most certainly feel loved and supported as we all learn the boob is much more complex than we realized and an envelope of skin is never just that. 

December 15, 2014 - Drains, Buttons, and New Boobs. A trio of delight. (Warning: contains pictures)

A few of you were asking a while back for more details on the Breast Drains. Those awful little plastic pliable tubes that create nothing but misery for the beholder. There is no love. Nothing but a loathing that seems to be uniform for all those lucky enough to wake up from a surgical slumber to find them nesting in their breast. They serve a mighty purpose as they literally drain out accumulating fluid that would pool in the breast sack if the drains weren't present. They promote healing time and for some help reduce infection risk. So we have to argue that they are a tremendous addition to both the mastectomy and reconstruction surgical process, but despite their accolades from health care providers, we as retainers of such drains do hate them. Hate is not a word I utter very often, but I do not want you to miss my loathing. I hate drains.

My friend, Rachael, is undergoing reconstruction this month and she sent me some pictures of her drains and buttons (see below) for me to show you and was ok with me disclosing her name. I, in my journey, neglected to capture pictures for you of the drains. I think I must have subconsciously not wanted to give them celebrity status as done in a picture. I wanted them to feel neglected and inconsequential, but in that decision I wasn't able to visually prepare you if you find yourself at mastectomy’s door. She was so gracious to send me her pictures for educational reasons. You can see the drains below – long plastic tubes with bulky bulbs attached at the end. They start inside the breast, then at the exit site they are sutured into place to keep them from shifting around or completely falling out. The bulb has a “button” on the end, which is opened and closed a couple of times a day and emptied after recording the volume amount for the surgeon. Less drainage, better healing time, and the sooner you can pop those babies out! What you can’t see of the drain is inserted and coiled up inside the breast. At times you may have 2 drains (usually following mastectomy) and at times you may have 4 (usually following reconstruction).  If you hate drains like I do, your surgeon may refuse to tell you how many you will have when you wake up from reconstruction so you actually will show up for the procedure and you don’t dread it so much. Oh so kind. The cumbersome details of the drains is you have to “hook” them to your clothing. They are heavy and if they aren't hooked, you risk them dropping abruptly and yanking on the sutures where they are inserted into the breast. And that, folks, is a ton of fun. It’s like a day at the circus, but without all the cute performing animals, amazing acrobatic tricks, and fluffy pastel cotton candy. Ok, so it’s more like a dental procedure without anesthetic. Full disclosure, right? Just trust me, you want to do everything in your power to prevent that “yank” from occurring.

What you do and don’t want to do with drains, and I may or may not be speaking from personal experience (smile):

1. Do NOT clip them to your waist band. You risk heading to the bathroom, pulling your pants down, forgetting they were there and find that you have pulled on the suture stitch. You will know if you have done this because the scream can be heard all the way at the grocery store down the street.

2. Do NOT clip them to you shirt. You find you go to change shirts, forget they are clipped and find that you have pulled on the suture stitch. Again, You will know if you have done this because the scream can be heard all the way at the grocery store down the street. (However, the shirt is the better option than the pant if you have to choose.)

3. DO consider wearing a beautiful ribbon, tie it around your neck, and clip the drains to the ribbon. It’s fashionable and reduces the risk of tugging on the sutures. Also this ribbon can be hung in the shower, once your surgeon clears you of course, to hold your drains up out of the way. Obviously your pants and your shirt fail here.

4. Do NOT let your husband “milk” the drains trying to get every drop of fluid out of the drain line. He may want to do this is if he is a handy-man, or in some cases an engineer, as it is in his nature to have complete removal. This milking causes a suction pressure to develop within the breast and it will create another scream that can be heard around the world. Open the bulb head, empty drain into a measuring cup, record the volume, close the bulb, and then reattach the bulbs to ribbon. That’s all you need to do. No awards for the clean drain lines, my friend. Trust me, you can skip that and save you some not so pleasant experiences.

5. DO feel free to throw a basin at your husband should he accidentally forget to ever so gently lay the bulb on the table while he goes to empty the drainage in the sink. The first time is a freebie, the second you should at least yell “duck” before you hurl the basin in his direction.

6. DO consider cutting a “v” notch in the side of your sports bra.  This V allows the lines of the drain to slip out under your bra without having the tension of the sports bra’s bottom band pressing on the drain. Every bit of pressure on the drain pulls on the suture stitch more.

7. DO consider using some medical tape to “tape up” the drain so that you create some give around the insertion site and allows something between your insertion site and the accidental pull should it occur. The “pull” will be stopped by the tape instead of by the suture stitch.

8. Do NOT feel bad if you have a few tears because of the drains. They aren't comfortable. In fact they are downright uncomfortable. But you will get through it and they will be out in no time flat (you should expect several days up to a week or two depending on how soon your drainage lessens.)

9. And here is a freebie that I observed in Rachael’s pictures. DO wear a tube top! It’s brilliant in that it is so much easier not to have to navigate sleeves when you are restricted to not being able to raise your arms up above your head. Brilliant! And now I wish I had figured that one out for myself as I picture those nights Ron, my mom, and I were fighting the wardrobe issues at the end of an exhausting day.

On to the “buttons" seen in the picture below. I did not have this procedure done but wanted you to have this information should you need it. Buttons are used to hold grafted skin in place. Sometimes during mastectomy, so much (hopefully all) of the breast tissue is removed that you find the area under the skin becomes super thin. When that happens, the surgeon will take donor skin and attach it to your skin to provide extra thickness. The skin graft is held in place by buttons while the donor skin incorporates itself into your skin. Once that happens, the buttons can be removed.

Bruising. You can see her sides are significantly bruised. And you may recall seeing bruising in my pictures from last April following my lipografting surgery. This happens when fat is suctioned from one area on your body and then inserted into the breast as part of reconstruction. For those women who are candidates, this reconstruction of the entire new breast using your own fat results in a breast that feel and possibly looks more natural. It’s a bear of a procedure though with extensive recovery times from what I hear. For others, like myself, when an implant is used the relocated fat serves as a barrier between the implant itself and the breast skin when thinning and rippling of the implant occurs over time. My radiation exposure history prevented me from being a candidate for the more natural procedure and thus limited me to the use of implants. I don’t know which procedure is more preferable, but I know more and more women are choosing to avoid implants if possible.

Ok, so there you have completed your semester in Impostor Reconstruction 101. This information will be covered on your midterm exams. Study up! Extra points to Rachael for sharing her pictures with us so we could give you a mental picture if the process. Be praying for her as she is right in the middle of her journey as a breast cancer survivor and balancing life as a wife and mother of young kids. She's an advocate for women navigating breast cancer and is a champ in this process!

You can check back later in the week and we may have more pictures posted.

(Note: The thoughts expressed on this page are my own, so blame me alone if you take issue with anything above. I do know she shares our loathing of drains, but don’t want to misrepresent her.)


Click  www.tradinginthetatas.blogspot.com to access other posts. 

November 26, 2014 - The Silent Spouse

Ron has a friend whose wife has breast cancer and recently underwent mastectomy. I've never met this couple, though I have prayed for them. Ron checked in on them a few weeks ago to see how surgery went. The response was similar to “…going well, we made it…!” Just this week we received a follow-up out of the blue that she was at that very moment being unexpectedly admitted for breast cellulitis.

My heart immediately sank as Ron told me the news. I knew almost to the letter what she was thinking and feeling. That fear of knowing you had made it through the tough surgery with flying colors only to find out you had an unexpected scary complication most likely resulting in a long course of antibiotics and potential removal of everything your breast surgeon had just finished adding. Your new breast is now defunct, damaged goods, lacking quality. It has found itself diseased with bacteria, and honestly …that just sucketh. Plain and simple. It is a bummer of bummers in breast surgery. You find yourself very close to where you started wondering if you have to do it all over again and the past many weeks falling dangerously close to wasted time.

I immediately recalled exactly what I felt, but was quite surprised to hear Ron continue the story without missing a beat to say “Sally, that was the scariest part of our journey for me.” And at that very moment the red light flickered in my head. The thing taken slightly for granted that surfaced from my subconscious. Ron, being the spouse, experienced the same journey and had his own emotions that are often missed in this process, much less supported and advocated for.  I had not really thought about the fact that there were moments he was scared, or worried, or frustrated and that he was often left to maneuver that alone. And more so that those moments of past impacted him enough to immediately want to reach out to this spouse to check on him and offer encouragement and support (which he did and it made my heart melt in love for him). I wish I could have him capture his experience on paper. I would like more insight into that, but I know this Ron and that he is very private and would struggle with finagling the thoughts to a written page. He processes in his own way and quite honestly doesn't adore the literary side of the world. But hearing his simplest of words (Sally, that was the scariest part of our journey for me) and propelling my thoughts to “our journey” (refocusing me that this wasn't my journey alone) and “for me” (bringing to my forefront that he had so much he was sorting through simultaneously as I was) now actuates me to want to advocate not only for the struggles of the woman in mastectomy, but the spouse who is just as blindly navigating something that he perceives to be scary and concerning and so many other things. He’s simply trying to get his wife through the experience intact, and I imagine that leaves him in all sorts of internal quandaries he never once utters aloud as he places her needs over his own. It is its own story. And I think that story virtually remains sadly untold.

This Ron is amazing. And I know I had the luxury of having the most incredible spouse at my side during this life event as he was selfless and supportive and kind beyond words during my emotional outbursts at crazy moments in the day. He changed bandages when I just couldn't bring myself to view the incisions and emptied drains hour after hour when I just couldn't get myself together. He missed sleep. And administered medications so I could get some rest. He cried when I cried. I realize not all men would be so stellar in such moments, but I don’t want to discredit that each spouse feels SOMETHING. The magnitude may vary, and the response will differ on a continuum from amazing to even less than stellar. But underneath the response we must realize there is a motivator. They feel something. Without realizing it, Ron highlighted that point in his concern for this husband and his wife now embracing breast cellulitis.  He very much wanted to support this man who in a flicker of a moment found himself mimicking a main character in our story. And in that role he most certainly would be feeling something.

I’m reminded that I am not a monologue, but instead one voice in a dialogue of many. There is a mother, a father, a sister, a brother, a child, and very much so a spouse who is swimming (dog paddling? gasping for air?) as fast as they possibly can in the very same stream and often in silence. I don’t want to forget that. And I want to advocate for supporting the many supporters of mastectomy, particularly the male spouse who may struggle in silence.

If you find yourself in prayer today, please add this friend and her husband to your words. I imagine they need a pick me up and a miracle of healing, both emotionally and physically. Underneath the silence of the one who supports you very well may lie a soul needing a little support of its own.

  

November 17, 2014 - Turning intentions into quilts

In the past week, I've learned of two new breast cancer diagnoses. It seems to be everywhere. 1 in 9 seems to be an inflated number as I have at least 7 women in my casual or immediate influence who have had the diagnosis and that is who was willing to make it public and I recall. I was particularly struck by one lady in particular who I actually have never met. I was told the story of several women whom got together to create a breast cancer quilt. Each woman working on the quilt had also survived the diagnosis and want to be a supporter of this lady. It was the cutest (albeit non-conventional) quilt covered in cartoonish drawings of various colorful bras. I can’t describe it adequately and that hilarity of the design, which was rather endearing an approaching adorable, isn't the point. The point is that these women got together purposefully, in measurable support, for another lady navigating the breast cancer map. To say I was touched is a lousy description. I kept coming back to the time and energy and purpose. They wanted her to have this quilt in time for her reconstruction surgery. So they set a goal and got it done. So many of you do that well. You see a need. You trampoline yourself right into the middle of it with intention. You show love at every turn and it’s almost auto pilot for you. I don’t know that I want the bra quilt itself (or maybe I do, it was quite magnetic in its draw almost a trance you didn't know you desired) but I know that I want to exude that sort of support for other people. And I fall short of this on almost every level with missed opportunity after missed opportunity. My well intentions become exactly that…intentions. Woe is me.

And therein lies the question, how do I become less “me” focused as I traverse my every day and instead become more focused on you and whatever event is at your doorstep? Isn't that what we all should be about? God commands not only to intentionally love others, but to love them as you love yourself. Screeching halt! I love myself, A LOT! I can even dare say I love others, but how do I show radical love (inconsistent with today’s society) and support consistently, intentionally, and regardless of whether I get love in return. And how can I ensure that love is a priority for me and not just a well intention? It certainly is not innate in me. Well the love is innate, I’m rather good at that, but the active showing of that love often finds itself with the dirty laundry (which I also had intentions of washing last week) in a heap on the floor. This I know….I am really good at thinking about you. I may even drop a card in the mail to you. I cry behind closed doors for you. But am I going to sit for hours on end quilting a bra quilt for you? And with the goal of no personal gain and instead to brighten your day in the midst of your diagnosis? Oh I want to be these women. I want to be more than a few encouraging words found on the pages about Christmas Boobs, or Impostor (implant) ID cards, or concave chests and tears in the shower. I want the drains to be circumstance that fuels action instead of passive words from me to the screen. I certainly don’t want to fail you in your time of need, whatever that need may be. And I painfully know I have failed many of you in the past. I don’t know the breast cancer diagnosis, but I know the road to and from mastectomy. It would be a lost journey if I didn't translate that into measurable love and active support for you and yours. So this is what I am working on. Less passive. More active. Love you more than I love me. “Bra quilts” to show you I mean business. I promise you no bra quilt, but I do promise you I am working hard to be selfless. These boobs shall carry me! (How would you like to see that on a calling card? Mercy! Would you not immediately catapult it into the trash and call for backup! My apologies. Laughing all the same). Just a little insight of life application going on for me right now.

And to the Impostors. Surgery #5 is tidied up in a big red bow and ready for send-off. The fog has lifted and sunny skies are forecasted, meaning I am no longer running into door frames or answering “apple” when you ask me where the sticky note pack is. As delightful as that was, I no longer want to experience that and will have to be losing liters of blood and at risk for death to go back to the operating table. Implants that have fallen to the knee cap can be its own fashion trend and will certainly make gardening or installing hardwoods much easier for me. I will not go back to the OR! (Famous last words, right?) I still have the stitches, which should dissolve after about 12 weeks. I don’t love them. But nowhere, that I am aware of, is it commanded to love your stitches, so no judgment please. They get caught on stuff and the tugging is less than fabulous. I am a weakling with incisions, this is no new revelation to you, and it is what it is. This changed with mastectomy for whatever reason. They sit there underneath the sports bra and I tolerate them. I go back to the surgeon in January for another follow-up. I haven’t yet decided if I will actually go (wink).

Mastectomy is complete, and because of reconstruction I have perky boobs. If only it could be summed up truthfully in that one little sentence as if it was a piece of cake. Oh how much I have learned.

Matthew 22:36-40: ³⁶ “Teacher, which is the greatest commandment in the Law?” ³⁷ Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’^{[a] 38} This is the first and greatest commandment. ³⁹ And the second is like it: ‘Love your neighbor as yourself.’^{[b] 40} All the Law and the Prophets hang on these two commandments.”

Galatians 5:14:  For the entire law is fulfilled in keeping this one command: “Love your neighbor as yourself.”

(See Matthew, Mark, Luke, Galatians, James, Romans for more instances of this command).

October 30, 2014 - Do You Have That?

Truth be told, I've been feeling fairly miserable. Miserable is maybe a stretch..more so an isolation or disconnect from the rest of you. Partly to blame was the holed up sequestration to a, mind you, beautiful white sofa for almost two weeks encompassing a confinement to the grey walls and oaked hard woods of my contemporary dwelling. It's a lovely place to be as there is no place like home. But even home doesn't heal all wounds. In part was the mental isolation that comes with any event that holds you stationary while the rest of the world comes and goes from interactions of every day life. The cards of encouragement and texts of "how do you do?" kept a strand of connectivity, but the strand was thin and frayed by design, and instead I fell prey to the loneliness of physical and emotional isolation. And the groggy fog that plagued me much longer than need be did little to help the goal. The newly improved reconstructed boob was no consolation prize. It was starting to feel a little like a sentence. And I do what I tend to do. Embrace the isolation more.  All of those in one big bucket, and I was not the happy go lucky sunny disposition of my usual state. Reconstruction, while imperative from my perspective, is a bear. These impostors were taking it's toll.

I am craving interactions and in need of connectivity to pull me out of my slump. I went back to work, and hoped that would suffice, but work isn't a place for soul healing as we all move around in our hustle and bustle dealing with needs much greater than my own. It's a start, but not a finish. I needed time with women who knew me for what I was the good, the bad, the ugly, and still chose to do life with me along the way. And women who didn't care if my boobs were fresh off of a plastic surgeon's to-do list. It's powerful how much you need and rely on genuine interactions. We as a creation crave true judgement-free connectivity. We long for acceptance regardless of current state. We are a being of relationships. Relationships that matter. Do you have that? Am I that for you? Oh I hope that I am to someone.

So tonight we planned an outing to do some organized painting. People swear it's stress free (it's not, I'm a perfectionist). People swear the outcome will be display worthy (it's not, I'm a perfectionist). People vouch it's a girl's night worth planning (it most certainly is even if you are a perfectionist), particularly with the right people who know how to laugh just because you can when you are recovering from mastectomy surgery. Women who make your cheeks hurt on the drive home because they've been stretched into displays of utter hilarity for 2 solid hours. Women who laugh at themselves because that's simply just worth doing. You walk into the room and you know exactly what you are going to get, and it never disappoints. You feel you have nothing to bring to the table, you pale in comparison in your frumpy frock and disheveled can't-bring-yourself to offer much of anything demeanor. But you find you don't even care because they immediately envelope you in their cocoon of goodness. These women make life worth doing well. And these women make you gasp for air in belly derived chuckles when life has a hiccup. I needed these women more than I realized in foresight, but which became positively concrete in hindsight.

If you don't have such gals in your realm, go and get some stat! (And if you can't find any look me up. I volunteer.) You can do life without them, but that would be a shame and an uphill battle. You need them when you suddenly decide to choose the crazy path. You need them again when you find that the crazy path brings unexpected. And you will need them once again when you find your breast implant at your kneecap, because that's just hysterical and you need someone to laugh at that with you. And when you start to feel the isolation that may follow the hysterical sneak into your oak-floored dwelling, you need them to pick you back up and remind you that frumpy is stylish, disheveled "intoxication" can be laughed at, and droopy boob surgery is nothing like spilled milk.

Bet you can guess which one is mine. I tend to go off road juts a tad when given the option.

October 25, 2014 - A fog, a bruise, and a girl walk into a bar

Ok, well we haven't made it to the bar yet, but we have at least made it out this morning to get my long overdue oil change completed. I figured while I look at the underbelly of the car here at the dealership, I might as well write. The fog is still an unwelcomed guest, but he ventures out each afternoon for several hours to visit someone else, hopefully not you, until the following day when he finds himself right back on my doorstep the following morning. This is day 3 of such behavior, and at least we have a trend. I am hopeful he will soon choose to go out visiting in the mornings as well.

Did I tell you I looked at my scar? I did this on Tuesday as promised and only a few short seconds of spilled tears. But I am getting so much better at this. I think of those women out there that not only embrace their scar, but REALLY embrace it, as in The Scar Project. I am not yet sure how I feel about that, but I do support the awareness they raise and the empowerment they provide. These scars have created a sort of underground (above ground?) society of women all joined by incisions of varying style and degree. But despite the variety, I am sure the incredible box of what they represent are all wrapped in the same paper of emotions though of varying spectrums. I am proud to be part of that society and day by day I inch closer to that embracing and empowerment other ladies of mastectomy said would come. I don't see myself displayed across a canvas, but I do see myself behind the stage in support of getting women through this life event. 1 in 8 is strong number and one I now sit on my mantle in support. Consider me a support bra.

Below is a picture I worked hard to capture tastefully so you will have some perspective of this last surgery should you find yourself there. Only an inch of many, and cropped down to be respectable, I hope. I wasn't able to capture the others, as they are more precariously placed, but this one I could capture on the side. I simply want women to know the scars can fade down to almost nothingness. Well, it will always be something, but I hope more of a badge of honor than an eyesore.

A fog, a bruise, and a girl walk into a car dealership....baby steps.

October 23, 2014- Post Op Day 7 - Intoxicated

A quick update since several of you have been inquiring. I had my first post op appointment with the surgeon yesterday. The incision looks great and now I am only on "bra restrictions" for the next 2 months. Seriously. Makes you chuckle.

The not as good is I am still relatively
"drunk", maybe slightly improved since first thing this morning, from what we think is left over anesthesia. I wax and wane through the day never knowing if the morning will worsen or improve. Yesterday, I started fairly well. I went into work thinking it was do-able and ended the afternoon not well at all. I made it through the day because I had to be there anyway for the late afternoon appointment, but was in tears on the way home. The tears were nothing but a reflection of how how frustrated I was that I felt so "off". We did a panel of labs at the appointment since the surgeon agreed what I am experiencing is not ideal and wanting to make sure nothing bigger was going on that we were missing. We agreed to get some sleep (over 12 hours last night! Mercy), see what the labs show the following day, and see how I am feeling.

Well, today, I'm still "drunk" and have no confidence in driving or doing much of anything else. Results showed an elevated white blood count (but no obvious signs of infection) and an slightly elevated kidney marker.
Nothing specific to help direct us much. The elevated kidney marker happened one surgery before but was much higher then, but we are wondering if maybe my kidneys take a hit with sedation procedures. Kidneys clear the anesthesia out of your system and mine must be working very slowly. We reached out to my Primary Care Physician as well to give her a heads up on what is going on since the surgeon says "I gave up being a normal doctor a long time ago"(Chuckle) and he wants me to follow up with her if things aren't improved by the weekend.

This is SO very frustrating as I desperately want to be back to work and everything else.  I really don't think there is anything that can be "done" for it, just having to wait it out, but I am not the best wait-er, and it's oh not so fun feeling woozey and dizzy and foggy most hours of the day. In fact, it feels pretty debilitating at times.

So that's the quick skinny and about all I feel like typing out right now. In the meantime, Oliver is helping me hold the fort down, but doesn't seem to mind the house arrest near as much as I do.

October 20, 2014: Post Op Day 4 - Messy is better in pairs.

Another night under my belt. I got 12 hours again which is a testament to the lack of fun the previous night. I still can't say I'm rested. I've got this heavy, saturated, damp, occlusive fog persuading my mental faculties from being all they can be. Everything is in slow motion and connected with shifting images. Clear in the center, blurry in the periphery. THIS is why I detest anesthesia (not enough to not get it of course). The detest is strong. It stays with me as an un-welcomed intruder. Nagging and taunting me and laughing when I reach my folly. I haven't had pain medications since Friday afternoon so I know anesthesia is to blame. I loathe it, and it loves me so much so that it sets up residence for days on end. But I'm making do with what I have and apologizing when words come across jumbled, or there is a delay in response to a question asked. Or if I answer "jello" when Ron asks where my shoes are. Ok, that hasn't happened, but there have been some close calls. And the nausea, we have to find a way to part. You're making each hour less love-able.

Last night, we, well lets say Ron, checked out the incision again. Ron still described healthy looking tissues, no redness or drainage. And no fever since Saturday so I think the infection risk is virtually gone now. I've shoved gauze over the area to keep the sports bra from tugging on the stitches. That thought alone makes my stomach somersault in rebellion. I'm squeamish with that, as you know and as I've always been since the very first surgery now 2 years ago. I can hardly even believe that? In many ways it seems like last month when I first stepped under those bright OR lights with Lead Breast Surgeon. But in many ways it seems like a millennium ago. This I know, two years is too long of a time to be dealing with a prophylactic procedure. It should be a one stop shop and you move on. That was not my fate though and is a voucher for the mental toll these procedures can take on women and the complexity that can arise when things don't go exactly as expected. And imagine adding in a definitive cancer diagnosis. Mercy me. That would be a whole new level.

Maybe my journey was a little longer because of all of my radiation exposure. Three surgeries routine (mastectomy, reconstruction, and lipografting) and two surgeries from complications (cellulitis and slipped implant plus some delayed wound healing after reconstruction began). Lead Plastic Surgeon had said it could go either way, and that was the very reason his choices were always so conservative along the way. I respect that in him, though it delayed my time course some. Slow still gets across the line, right? I HAVE to think this is the last surgery. Odds point to that for as time goes along, surely the risk of complication lessens in tandem. This was my journey, my moment, and I see the last book chapter on the horizon. It's sitting there beckoning me. Calling my name to ink the last period.

Ron is back at work today. That alone seems a little more familiar. Meanwhile, I'm here drooling on the sofa with Oliver. Once step closer. I'm still shooting for work on Wednesday, in just 2 days. But I just need to get myself "together" a little bit more. Less glassy eyed, a little more confidence and sanity, and a little less wobble. I don;t need coworkers wondering what I am on or scaring them with my less than steadfast gaze. I feel so very little from the actual incision. Again, a blessing of having no nerve endings in my lower quadrant of the breast. At times I feel a tug, or a minimal discomfort, or a menace of an itch. But basically, it's just there coexisting. I'm planning on looking at it myself before I go back to work . It just needs to happen. And I hope you will notice this will be a blow out in timing compared to previous surgeries where it took me months to look. I'm gaining ground you know. I'm not the wuss I once was. Laughing. Ok, I'm still sort of the wuss. And I'm sure I will cry a bit, but then it will be done. I'm figuring out the crying isn't about sadness. I'm not sad.  Not even a bit.The crying when I, or even anyone else, sees the scar is something more primal. The scar is reflective of the decision, and the decision was unexpected, and unexpected is something I am not (I pride myself in being able to get through just about anything with my head held high and my sanity in check with perspective in tow). This "unexpected" for the first time in my life rolled me up into complex ball which tumbled me down the hill as I sorted and analyzed and struggled to grasp at anything that made sense to me. Note, I really am still normal and the same ole rational Sally, but underneath the mastectomy bandage lies something mixed in for good measure. There is something to these breasts that I don't fully understand, but it mingles with an identity. The great news is it doesn't hold me back and in fact it sculpts me into something even better. With each passing month (and surgery!) I'm closer to the design God intended in this moment. I actually can find happiness in my mastectomy. I appreciate the ongoing challenge, and the way it surprised me about myself, and the outcome is surreal. I'm more confident in myself as I navigate this unexpected. I'm also more relate-able as I've grown to truly love everyone around me and value what they bring to my life. Even the unlovable became lovable, as I can see how people are molded by their circumstances and everyone has something underneath that the rest of the world around them aren't privy to. Ron laughs when we are driving down the road and he gets frustrated with a slow driver. I yell out "they may be returning home from mastectomy surgery, Ron!" We all have something. Every single one of us are one decision or one mishap away from "messy". I'm them, they are me. Both messy and getting through it all. So I'm grateful for these 5 surgical moments and it propelling me into a better Sally. I don't have it all down pat, but I'm less embarrassed over crying over a mastectomy scar, more likely to cry with you over yours, and more encouraged as each scar heals what lies within. God is gracious indeed.

My one and only hope for my transparency to you these last two years is that one of you will survive your moment a little more intact, no matter what that moment is, because of something in mine. And that you will see it's ok and totally normal to be  a little "unsettled" and "messy" as you go as long as you are still moving forward and grabbing onto perspective along the way. Your story isn't only for you. Don't deny someone else the opportunity to help you through it or for them to utilize and mimic some glimmer of sanity you may have in the process. It's better to be messy in pairs, I say. Hope is contagious.

Be gone, anesthesia! Your role is now over. You're definitely holding me back. And scar, I've got your number. Be prepared for a formal meeting in the next 24 hour. You don't own me..."and sometimes we just have to deal with what the good Lord gave us".

Joshua 1:9 

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

October 19, 2014 - Post Op Day 3 -Delayed, but finished all the same.

Last night, Ron and I had committed to taking off the surgical bra, the bandage, and finishing a shower. Well sometimes the best of intentions fall to the way side. I had had such a great Saturday feeling great without pain medication. I could barely feel the incision at all and my grogginess was wearing off. Score one for Team McCollum. However, as the evening came about I realized just how tired I was from being up all day feeling great. A few tears during dinner and a hurried step to climb into bed to shut down for the night, but then remembering we still had the tasks with the bandage hanging over our heads. I was committed, simply just to get it off my plate on the day we were supposed to. It was a goal of mine, but as we started the process and got down to the bandage, Ron in his wisdom realized the bandage removal  (it was larger than we expected and every inch covered in tape) was going to be more than I could handle in my exhausted state, much less tackling a shower after it's removal. We decided to abandon ship and delay the removal to today when I was more rested.  What difference does a 12 hour delay make, right? Climb in bed and settled in for the night.

About an hour into my sleep I woke up with severe abdominal cramps and nausea and vomiting. I literally crawled myself back and forth from the bed to the bathroom about every hour. At one point in the night I had a short little nap on the bathroom floor. Yes, I know that is disgusting, but sometimes you have to make do with what you have at that very moment. Believe me when I say, this was not on my life's bucket list, but I can check it off all the same. I was miserable and it had nothing to do with the incision except for when it impeded my crawling back and forth. It would have been a hoot had it not been so pathetic.

Ten 10 hours later and I was a new woman. My abdominal symptoms have almost resolved, just a little lingering nausea, but I am functional and alert and oriented! Strong improvement. We decided to tackle bandage first thing after breakfast to get it done with once and for all. It didn't take that much coaxing, as I was ready to get it over with, but it did take some heavy breathing, a few unneeded tears, followed by begging to stop and count for 5 seconds before tearing more of the tape away (repeat x 30). It actually went quicker than it has in the past, and I equate that to my getting better with each passing bandage. Of note, I still didn't look myself, as I never do during bandage removal, but Ron did as he always does and described it to me so I could start my mental preparation. It's rather large spanning the entire width of the breast and is covered with stitches and a glue adhesive, but according to Ron the tissue looks healthy with minimal drainage. Back into the infamous sports bras and I'm in tact as a whole person once again and back on the sofa.

I'm through the tough part now. I did it. The bandage is off, and I didn't smack Ron upside the forehead. Score two for Team McCollum. I survived the 5th surgery intact both mentally and physically. There never was a doubt really, but I don't love this emotional woman I became with mastectomy. But for whatever reason, I'm now quite taxing with bandages and scars. It is what it is, and it serves whatever purpose it serves. Maybe I'm even better for it on the other side, maybe. At least I know Boob 1.i and 2.2 are better on the other side. Both implants are exactly where they should be, without one slipping down into my knee cap. Talk about fashionably awkward.

Ron is headed back to work tomorrow, and I can't say I adore that, but that is more about my insecurity than my health. That first day he goes back is always tough for me as I worry about the "what ifs" (and I bore easily), but it's always fine and I quickly realize that as I get into my day. I plan on sleeping most of it away anyway. Just the anticipation of that first day that doesn't go smoothly. I'm working hard to get enough energy (still quite the groggy person) and mobility (can't move m arms over my head and have a 5 lb weight lifting restriction) back to go back to work myself on Wednesday. The surgeon thinks it is totally possible (Shhh, it's our secret that he's been wrong the previous 4 surgeries but he doesn't need to know). The sooner I get back to work, the sooner this surgery is behind me. Warning: if you see me at work with my clothes on backwards or inside out, just know I did my best considering. I can't be perfect all the time!

October 18, 2014 - Post Op Day 2 - A tisket, a tasket.

Post Op day 2. I may still be a tad bit delusional, as I'm walking around singing "a tisket, a tasket, a boobie in a basket." Have mercy on anyone around me today. Chuckle!

The great news is still virtually no pain. It helps that I have little to no nerve endings in my breast, so there's little pain to be had in that area. A definite benefit of mastectomy. Yesterday, I was running a low grade fever and that too has resolved so far for today. That's the best news of all actually. No fever, no infection. Still sluggish, and coughing up junk, but things are progressing nicely from our perspective.

Today's the day the surgical bra and fluff comes off. Not sure how i feel about that yet. Historically that's been a tough day for me. While I want this bra off (too much Velcro, too much itch, too much confinement) I dislike the discovery of what lies underneath. It won't be a huge shocker, I hope, since I know how wide the scar is since i saw the art drawing before surgery, but I still know my stomach churns each time I think about the aftermath. I've always sucked at this part of mastectomy. I'm delaying it until tonight. Ron and I will tag team getting it all off then I get to have my first shower. You guys might want to prepare yourself for a little squealing if you live close by. I can do it, I know, but that doesn't mean I have to like it. Surely it will be better than previous unveilings. Less boob sag is a good thing, right? But the scar...woe is me. I wish I could be like other women who just take the scars in stride, but something about that changed with mastectomy. I'm squeamish, and I never was before all of this.  I can look at my knee scars all day long, no problem, but not these. Warning, neighborhood dogs may join in in the howling.

I slept 12 hours last night. Not consecutively, but close. It's tough for side sleepers to be restricted to back sleeping. But you will be proud to know I only used 4 pillows. Down from like 14 with my first two surgeries. I'm breaking all kinds of records, right! All is good. Very good considering.

It's going to be a great day. I can't say the same for the evening tasks, but maybe I will surprise myself. Ron renamed boob 1 to boob 1.i (improved boob 1, it doesn't get a new number since it didn't get a new implant). So boob 1.i joins the ranks of boob 2.2. Oh the things you do when you are bored sitting in preop getting lines placed. We are like four year olds, but if you can't laugh and be silly what can you do? So thankful for humor in all of this.

A tisket, a tasket a boobie in a basket...

October 17, 2014 - Surgery #5 - Post Op Day 1 - Anchors

Post Op Day 1. Disclaimer: I am still feeling the anesthesia so I have no idea how streamlined this blog post will be so hang in there with me if I am all over the place or you notice drool on the screen.  I’m keeping it short sweet and to the point.

The strange moment of the morning, looking down and seeing that the 5 men in the operating room put my surgical bra on inside out. Men, they know how to take bras off but not how to put them on! Had me laughing. It’s really inconsequential, but I noticed it because I was itching on one side and when I peeked in to see what was what I saw the Velcro there that should be on the outside to hold drains. At least they did a good job of cramming it full of fluff for comfort, but don’t laugh at me if you are walking behind me and see all the tags hanging out on the outside. That’s why all men need the help of a good woman, of which there was only one other than myself in the operating room. But all in all surgery went very well, minus the 45 minutes of trying to get IV access when I arrived. I’m well known for very poor veins and when you are dehydrated from not being able to eat or drink, that doesn't help the issue, but finally 2 anesthesiologists tag teamed and after 3 pokes they found a vein in my wrist and we finally had access and could get the surgery rolling. Lead Plastic Surgeon said it went very well, and he told Ron and my Mom that I kept them all very entertained while lying on the table when they were trying to get me under. Thankfully, he also said, what happens in the OR stays in the OR, but I am hopeful I didn't say too much to embarrass myself. I have stories, you know, like this from previous surgeries. Good thing Ron was not around to hear it and tell me all about it. I will say I have an amazing surgeon. I have very vivid memory in the OR while they were trying to get me sedated. I recall them saying over and over “sally, you have to breath deeper, your breaths are too shallow” and I recall feeling so much anxiety about that. The surgeon must have seen the fear in my eyes and he reached over and grabbed my hand and held it the entire time until they got me settled. It literally brought tears to eyes in the moment at that kind gesture. Of note, He, Ron, and I have been through a lot on this journey, and it’s obvious he is very invested in me since we've had some bumps along the way.

We were at the hospital about 9 hours, much longer than we expected but only because I had some difficulty post op with getting my cognitive function back. It took a lot to get me under and therefore it took me a while to come back out of it. But by 7pm we were home and settled in and had gotten through this “moment”.  It was a good procedure and my pain is very well controlled.  I’m not enjoying this surgical vest, but it can come off tomorrow when I shower so I’m looking forward to that.

 I was a little sad to see how large the incision is, spanning the entire width of Boob 1 but it is placed on the underside where I won’t really be able to see it without looking in the mirror (I know about the incision because of all of the black marker marks he used in preparation during the ever so much fun show and tell session right before going into the OR). And I don’t really plan on checking it out in the mirror as you will recall from surgery 1-4. Combine this new scar with the old scar and I have what resembles a nautical anchor. That alone is worth a little giggle. Don’t most flotation devices come with nautical themes?  It’s surely entertaining to view. But I will wait a bit. Ron will see it tomorrow when we take the bandage off so he can give me the scoop then.

The only remaining item is I am running a low grade fever. Fevers can happen post operations, so as long as it stays low and doesn't rise, all is well. I haven’t had a fever before following any of the previous operations so we are just staying on top of it. That’s an ok item for your prayer list if you are just sitting around there at your desk thinking “I wish I had something to pray for”. Boob#1 has come through with flying colors and if I can get this grogginess to resolve, keep the pain tolerable with the least amount of itching and nausea (been nauseated a god bit), and the fever to go away we will really be doing well. I couldn't be more pleased with how I feel seeing as my surgery was just 24 hours ago. God is good.

Hugs to each of you for enduring all these surgeries with me. It’s so much easier to face when I have this team behind me and ongoing encouragement. More later when I am in a better state of mind. And those of you going to the fair, have a grilled corn and chocolate funnel cake in my honor and send me a picture! 

October 12, 2014 - Don't fear the soap suds.

This weekend I went to church not knowing we were having a guest speaker. Guest speaker/Nationally known comedian, Michael Jr. He’s a hilarious father of 5 who draws on his life growing up with a reading disability. His reading disability resulted in him dissecting words in about 7 different ways to find their meaning even though he couldn’t “read” the word in the traditional sense. This ability to find 7 different view-points propelled him in to a life of comedy being able to use those same angles to find humor in the everyday life, where the rest of us may see nothing- an example being when he was working with the writing team for the Jay Leno show. They were working on that week’s segments and working on new stories and resultant punchlines. A NFL star had received an eye injury when a flag was thrown on the play and the flag hit him in the eye. He sued the league for millions of dollars because he lost vision in that eye. When the team wanted to write about that law suit and the millions he would make but couldn’t come up with the punch line, Michael Jr. popped right in and said “he won’t see the half of it!”  Maybe you had to be there, but it was hilarious and most of us wouldn’t have found the humor in it.

He finds the humor in the mundane, and he uses that to reach audiences around the world and advocate for experiencing the life you were given, be it a reading disability, an abusive past, a miscarriage, or an addiction, and sharing that story so that God can repurpose it in the lives of others, not to grow the glory of you, but the glory of He. He says every story deserves to be heard.  Well, I left that evening no longer feeling guilty for finding humor in a mastectomy (or anything else so crazy in life as well).  Experience life, laugh at it, and share your story for what it is. I find the humor in mastectomy because God created me to see humor and greatness in the mundane.

The timing of this evening watching Michael Jr. was perfect as I was feeling a little down about this coming week.  Down may not be the most ideal word. Instead, picture an owner carrying a long haired mud caked cat into the master bathroom towards a garden bathtub full of soap suds and water. Said feline puts one leg on each lip of the tub, arching his back up as far as it goes, teeth glaring, hisses flying, all in a futile effort to delay the dunk that awaits his fate.  He uses every ounce of energy to suspend himself over the shallow pool of soapy defeat.  Remove cat, insert Sally and you have a similar portrait of my current portfolio.  I was just “not all that in to” this fifth mastectomy related surgery.  So, Mr. Surgery, I hope that didn’t hurt your feelings. Can’t we just call it quits and amicably go our separate ways?

I still want to go my separate way, but after hearing Michael’s encouragement to embrace life as it comes and then later this evening hearing Francis Chan talk about how each event is just a moment, a 3 second millisecond blip, in this eternity, I find myself better able to take this in stride. We have been purposed for every single individual day.  I’m trying to take this next surgery for what it is, accept it as another notch on this mastectomy rope, and go back to finding laughter, at times uncontrollable laughter, in the humor of mastectomy boobs. Let this moment just be a purposed moment and find laughter and fun in that and tell my story.  I mean really, I now have boob #1 and boob 2.2 and perfectly designed pair of imposters. Not many people get to claim a 2.2 for a body part. Or knowing I will soon have a new abstract relic seared forever on boob #1. What used to be a single vertical incision will now be joined with the addition of an equally as terrific horizontal twin transforming the boring ole scar line into a stellar work of perpendicular abstract art. Unfortunately, it’s art no one will ever see (or fortunately in my case), but it is hilarious art all the same.  I can actually, unlike many others, find laughter in that!

Come Thursday when I head into that operating room, I must ask how was this day to be purposed? What did He intend for it? I’m pretty sure it’s not for me to be all worked up with every single piece of “fur” on end, claws out gripping the tub’s edge, and hissing along the way as I approach the soap suds. I don’t know what it is exactly, but likely not that. After an insightful week of being in the right place at the right time and then reading the right words when I very much needed them, I am working to keep the frustration of another surgery in check and be reminded that this is a single moment that was purposed to be something in this story that someone just may need to hear. I don’t have to understand it, that is key for me to know that I don't have to understand everything, but I have to trust my role in it.

“When I am consumed by my problems – stressed out about my life, my family, my job (my surgery) - I actually convey the belief that I think the circumstances are more important than God’s commands to always rejoice. In other words, that I have the ‘right’ to disobey God because of the magnitude of my responsibilities. ” - Francis Chan

www.crazylovebook.com

September 30, 2014 - The Slithering Sleuth

I'm entering the dreaded month, which should be celebrated as it is Breast Cancer Awareness month but I am not feeling quite so celebratory. Ron says he sees it coming - carefully mumbling with glee to avoid the ramifications - “you’re entering into surgery mode aren’t you”?  “What do you mean, Ron?” Me, fully knowing what he means.  “You’re dreading it aren’t you?”

 

Something happens in me a few weeks before a known surgery. I slip into this funky funk of not-so-good moodiness. What normally falls under slide-off-my-back turns into get-under-my-skin-ferociousness. A poorly delivered mail package can put me to tears. A dropped bowl becomes a world-war level catastrophe. I’m bitterly moody and it shows in all areas.  My consciousness becomes tainted with dreaded anticipation of the inconvenience right around the calendar’s corner.

I am already mourning the loss of energy that comes in the 4 weeks after anesthesia. I absolutely detest that sluggish gait and intense need for extensive sleep. I loathe the confinements of the living-room and the helplessness of inactivity, the bandages and the zombified stance the surgical incision invokes. I abhor relying on someone else for every single task. It makes my gut twist and turn in frustration. I’m strangely optimistic that recovery will be swift and purposeful, maybe the easiest of all surgeries thus far! I’m hopeful in that, but the funk is over shadowing that optimism. It slithers into my soul like a sleuth on the prowl – I’m not even aware it’s coming, it’s just suddenly there as an uninvited guest.

So my apologies go to you if you have been the unfortunate intercept of my subconscious turmoil. Know, my true desire is to serve you well and to treat you with the kindest of respects. It’s in the forefront of my thinking, but that sleuth just pushes his way in changing the outcome.  My kind soul is just underneath eager to find its way back to my day and into my interactions.

I’m starting, again, the study of Crazy Love. Though the timing wasn’t intentional, I am so grateful for the placement in the calendar. I need the prompting to re-embrace the overwhelming Love of God for His people and in return find myself swimming in a puddle of love for Him in return. I tend to mold Him like puddy into this spherical glob to perfectly fit inside my heart shaped hole.  Instead, I’d be much better prepared for this world if I put MY whole into HIS heart shaped hole becoming all consumed by his love and grace and mercy and holiness and perfect plan. This slipped implant would barely register on a hill of beans if I focused my thoughts to opportunities of grace instead of funk induced outcomes of poorly delivered mailed packages.  Life can be so very all consuming, instead of my being fully consumed with and by Him. I’m refocusing. I’m eager to have the shift and am being purposeful as purposeful is the only way to make the turn. Waiting around for it to happen is not serving me well.  Waiting permits Funk. Purposeful produces focus.  “I hope it affirms your desire for 'more God' even if you are surrounded by people who think they have 'enough God'."        

Yes, indeed, I am motivated to have “more God” so that my “surgery mode” becomes less commanding, Mr. Frances Chan. For the love of mankind, it’s needed.

So you can pray for my surgery mode to seep back into the nooks and crannies of nothingness and that my spirit of grace finds itself in my lens scope and interactions. I give you permission to hold me accountable to nothing short of that. Rub off on me if you have it mastered as learning from those who have conquered serves me will. I’m eager to be at that place where dropped bowl are sources of comical jokes, orthotic boots are motivators for hysterical laughter, and surgical lethargy is just something you get through with flying colors. Teach me, Father, I miss my dwelling in you. 

September 19, 2014 - Finely tuned lens

I have the luxury of working with children with a cancer diagnosis (plus fatal genetic diseases). It’s amazing how much you can glean about life simply by spending the day with a child, and parents of such, who is facing death. They, both parent and child, are a special breed of human. One that in a single hour of time when the diagnosis is confirmed finds that their lens of life becomes a little clearer. A bit sharper and more finely tuned. Pin point on a single subject and less blurred with the mirage of previously worthy landscape. Some things fall completely off the canvas all together to be replaced with more worthy brush strokes. The all-consuming just became the trivial.  The unimaginable becomes the everything. And the people of your life circles suddenly become more transparent and more intentionally chosen. It could be an incredible life study, these subjects, that could glean a wealth of guidance and insight in finding that “purpose” our culture is so notorious for “hamster wheeling”. There  contains a few examples of the human spirit going terribly wrong, but there are oh so many examples of the human spirit doing life as purposed when confronted with the uncertain.

It’s so easy to get caught up with the to-do lists of this life, the struggles of day to day adulthood, but 1 hour with these kids can bring you to your knees in awareness of what this life is all about. You become better at doing life by observing them navigate theirs. These are a few things I have learned in the process of brushing up against their lives and by navigating it myself a few years back:

·       IV poles are made for decorating and riding on for the IV pole parade.  Nothing more, nothing less.

·       Anything can be made into an arts and crafts activity, including Band-Aids and IV sets.

·       Bugs Bunny Band-Aids are the only way to go.

·       Folding 1000 origami cranes can give you “luck” when you think you are going to die.  And a 9 year old will spend every waking hour accomplishing it.

·       A simple lab result can make or break your day- and you hold your breath from the 30 minutes from when it’s drawn until resulted.

·       One sentence from your healthcare provider can either devastate you or help get you through one more hour.

·       It’s totally fashionable to wear two different colored socks and as many ruffles as your tutu skirt will hold.

·       You will never know what you will choose until that very moment. No matter how much you think you know yourself.

·       In their mind every cough or sneeze is a potential relapse. Don’t down play that.

·       Time doesn’t always heal wounds. Time does provide opportunity to make memories that help sooth wounds.

·       Bald heads represent triumph- not old age.

·       IV lines, bruises, shunts, g-tubes, and rashes all at the same time can be badges of honor.

·       Getting the gas bill in the mailbox when you know you have to pay for daily appointments for the next month can bring you to tears.

·       Parents relish having one more day where the kid drops the puff cereal all over the carpet.

·       You can never talk about poop too much.

·       Elmo is universal despite language barriers.

·       You can never eat too much ice cream.

·       Marriages can be lonely when chaos is in your realm. Not every marriage will survive. Some come out stronger.

·       All teenage girls want to go to the prom…with hair. All teenage boys want to go to the prom with a girl…with hair. Wigs have come a long way!

·       Santa can show up any time of the year and princesses are magical.

·       Siblings need time to process.

·       Parents can find delight in hearing their children fight, because at least that means they are still alive.

·       Healthcare providers cry after work too. Tears don’t always make everything better.

·       “Rainbow Connection” is the absolute perfect song for a memorial service.

·       Time at the art table with play dough can motivate you to come back in for one more infusion.

·       You will put purple dye on your tongue to kill infection if I successfully convince you it is like you “just ate Barney”.

·       Big clown shoes make you laugh.

·       Your job isn't even 1/8th as "sucky" as you think it is, these parents would give a million dollars to trade shoes with you.

·       20 medication doses in a day are 19 too many.

·       This event is a stress for parents that parallels little else. They won’t tell their friends, but trust me.

·       Choose friends you actually want to endure life with.

·       3 a.m. is the perfect time for a game of hungry hippo.

·       Kids are more resilient that adults will ever be.

·       Even a bottle of Tylenol can break the bank.

·       You never really have it all figured out.

·       An hour with a child facing premature death can teach you more about your own character than anything else imaginable.

·       Children can vomit six times a day and still find a way to pull every topping of the pizza slice in order and with purpose.

·       Music therapy with a paper cup, ukulele, or bongo drums can be the highlight of the clinic appointment.

·       You can never give out or receive too many hugs.

·       Giggling can turn to tears and back to giggling in 20.4 seconds.

·       Footed pajamas carry spectacular cute factor when combined with a bald head.

·       Surround yourself with people who get it and want to positively influence your life. Remove yourself from people who don’t.

·       God doesn’t always promise healing, but he does promise the opportunity for incredible positive impact on those involved.

·       An empty bed is heart breaking.

·       Grief is life changing. So is laughter.

·       Angels and warriors come in all shapes and sizes.

·       Being surrounded by these kids is totally worth devoting your life to!

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