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.
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.
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.
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.
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.
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.
Click www.tradinginthetatas.blogspot.com to access other posts.
Click www.tradinginthetatas.blogspot.com to access other posts.
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.
Click www.tradinginthetatas.blogspot.com to access other posts.
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.
Click www.tradinginthetatas.blogspot.com to access other posts.
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.
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.
“The universe delivered me a beautiful gift in hideous packaging.” Author: Susan Rebecca White in A place at the Table.
Have you ever been dealt something in life that you truly wondered "could this possibly be any worse than it is"? While this quote doesn’t apply to the gift I received in the mail as it was a beautiful gift in beautiful packaging, boy is the quote ever so fitting for my mastectomy. Hideous packaging in an understatement (ok, so maybe a smidge of an overstatement as hideous really is a very strong word, but you get the idea). This process has been way more involved and life changing than I ever could have imagined. While the scars were somewhat better than I ever expected, the turmoil of the process and its effects on “life” were so much more. Never could I have imagined how this would turn some weeks upside down. How much I would dread a surgical drain. How I would sit in the middle of a play on my birthday while infusing antibiotics for my cellulitis. How I WOULD actually care what they looked like afterwards. How I would cry at the drop of a hat early on in this process…and it always stupidly timed itself in the middle of a medical appointment with the surgeons. How much this would affect Ron as he tried to navigate me. How much money would be involved. How much impact it would have on everyday life in the immediate after and how I would detest the physical isolation being cooped up at home after each procedure.
But you know what? I also never imagined how much joy I would get in that chaos. The relationships that would form. The triumphs of going through pain with a spouse. Those little moments in the middle of the night where I look over and see Ron lying in the floor next to me because if I am not comfortable in the bed, neither is he. Those times when you run into a friend who has had mastectomy and you feel that immediate bond of “I know your struggle”. The tears that flow in unison with friends while you all sit in a booth at a restaurant because they care so much about you. Dinner that arrived on a doorstep and cards that arrived in the mail. The humor I would find in the most ridiculous of moments like when doing my strength exercises in my kitchen doorway. Or when I realize every single article of clothing or swimwear I owned would fit quite differently 2 weeks later. And therein lies the beauties of mastectomy. It was the most hideous of packages (this need for mastectomy) but out came the most beautiful gifts of life. I wouldn’t change a single moment of it. Truly I wouldn’t, because I am so much more of a woman after this journey, despite thinking I might be so much less. I am not defined as a woman by these missing breasts, but I most certainly am defined by the triumphs, and relationships, and personal growth that come out of it. I would do it all over again. Every single minute of it.
And therefore, I am trying to go into surgery number 6 next week with this mindset. I purposely wake up every morning mixing my dread with my optimistic anticipation of what can come. Every moment of this is an opportunity to forge more of what I have already gotten. Ron and I will have more “moments” under our marriage belt. I know more tears will flow, as they are flowing even as I type this words, but through those tears come understanding and an in-depth awareness of Sally and what molds me. I know there will be more relationships forged, just as occurred with the arrival of the “perfect shirt” in the mail. We are all a community of people surviving life…and as stated in previous posts, hopefully thriving! Mastectomy makes me better at being me. As did lymphoma. As did cleft lips. As did heart break. As did loss. As did a period of time where I had no boobs. I loathed it. But I am a better version of me because of it. I may have left a little piece of me behind in various places along the way, but I certainly made up for that in what I gained.
“The universe delivered me a beautiful gift in hideous packaging” is so nicely coupled with the old hymnal verse “To God be the glory, great things he has done.” I can still hear mom and dad in my head belting this out from the pew.
July 21, 2015 - ING
The data can be overwhelming, as I read paragraph after
paragraph in preparation for an inservice I’m working on, but also in
preparation for an upcoming appointment. The risk factors associated with the treatment
of malignancy are numerous to say the least and continue to soar as time passes.
The more your read, the more you wonder how in the world anyone survives anything
at all. Radiation alone drastically increases your risks of secondary
conditions: breast cancer (MRIs and mammograms every six month – or in some
cases mastectomy), skin cancers (yearly dermatology appointments), colon cancer
(colonoscopy every 5 years starting 10 years after your last radiation dose or
age 35 – whichever is the latter), cardiac insufficiency (doppler and ekg 10 years
after therapy end, echocardiogram every 2 years), pulmonary fibrosis (Baseline
PFTs then routinely afterwards), and the list goes on. This doesn’t even begin
to factor in those risks associated with chemotherapy dosing which only
catapults the list into another realm. As
I continued to read, I could easily find myself overwhelmed at the numbers and
wondering how in the world does one stay on top of all of that without falling
into a spiral of paranoia at what might come. I am also suddenly aware I am incredibly
behind on my “routine” follow-up appointments. In fact, I had only met one task,
mastectomy. So I’ve spent the last few days getting appointments scheduled and
follow up calendars planned in an attempt at outsmarting fate. I most
definitely see the needs for cancer patients to be enrolled in long-term care
follow-up clinics and am wondering why I had not done the same for myself. It
feels…fearful…knowing the data.
There is a fine line between fear and proactive, and I am
working to maintain the latter instead of the falling prey to the former. I
fully believe that God may have specific plans for my future in my health, just
as he has used my mastectomy in so many ways, but I also believe he gives me a
brain to try and circumvent medical mishap. So I choose to be purposeful moving
forward in my medical follow-up. Dermatology appointment scheduled. Cardiology
appointment in the works. Colonoscopy…..Ron, please hold my hand…also in the works.
Pulmonary appointment, on the to-do list. And the others, I will get to you in
good time. But first let me fit in a surgery to fix boob 2.2. First things
first, right? Attitude adjustment in the works as well. While mastectomy
created a good bit of disruption to my every day existence and that is ongoing
in the immediate after each surgery, I would be a fool not to recognize the
gifts it has brought in the process as well. Instead of embracing the
bitterness of circumstance, I’m choosing to bring to the forefront the great. And
I’m enlightened by how much better I know myself in the process. Isn’t it crazy
how you absolutely know you have everything
about yourself all figured out, but in the fast swoop of an unexpected
circumstance you can find some undiscovered nooks and crannies of your
personality? Or awareness of how much circumstance can mold you into something
changed, could be better, could be worse, on the other side. My heart is much
deeper for relationships here on this side. And my awareness of “what is on the
outside is not always what is on the inside” is more finely tuned in my interactions
with others I run into from day to day. We are continually morphing as we get from
here to there. An additional little nugget I’ve gleaned is the appreciation of “while
things can always be worse” that doesn’t mean I am not feeling every single
moment of what I am in. Only you can measure how something affects you, there
is no gold standard or bar to be set. Yes things can always be worse, but
things are still your reality of here and now. And they may impact you deeply.
Navigating “post lymphoma” life for some reason feels pretty
overwhelming right now. I am sure the breast surgery being in my immediate
future might be the source of that, but also this preparation for preventing future
medical mishaps which now clutters my calendar with no regard for co-inhabitants
of the time slot. It all has to be worked in and it’s all for the good of me as
a whole. It makes survival more active, less passive. Because surviving never
really ends, does it? We will all always be surviving something. And while the
event itself comes to an end (hopefully), we are left with the positive and
negative aftermath that we incorporate into our everyday lives…forever…in some
capacity each and every day. You never go back to life before malignancy, or
divorce, or assault, or parenthood, or achievement. It’s there knitting its way
into your decisions, and perspectives, and motivations, and fears. Conscious or
not, it’s there influencing almost everything about you. And that is the way it
will be each and every day moving forward.
Sometimes I feel better knowing the colonoscopy is NOT
scheduled as that mandates the scope will never find an “aftermath”. But if I’m
being truthful for myself, this thought process is choosing fear. And that fear
is a method of survivorship I want very much not to embrace.
I am not a survivor. I am surviv-ING. It’s not a fixed point
on the timeline, it’s the timeline itself. This, I finally understand.
Psalm 16:11 You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.
July 14, 2015 - Return to Sender!
It was lying midway through the stack of mail, sandwiched between
an overpriced clothing catalog and a reminder to schedule a termite
inspection. But I saw it immediately – the over sized oblong envelope with royal
blue writing. I can recognize that envelope a mile away by now, yet I still
hold out hope each time that it contains an invitation to a magical masquerade ball,
or a collection of forgotten snapshots from a recent trip. Yet it is never
that. Not even once is it that! The return address immediately betrays the
sender. Division of Plastic Surgery. Woe is me.
Immediately, my funk returned. I do this every stinking time-
the dread, the loathing, the sulking. I don’t know why I let this affect me
like it does, but it seeps in from the outer regions of Pluto and finds itself
right in the forefront of my mind. It only took the arrival of post-surgery
documents to send me bee-lining straight from delightful to disgruntled. I really
wanted to overachieve and postpone disgruntled until the night before surgery,
but alas, the dang mailing. I am beyond grateful that I spent the last 5
months, for the most part anyway, putting this 6th surgery out of my
mind. I worked very hard to claim life in that very moment instead of dread of
what was coming in early August. I definitely had “most improved” in that
aspect compared to previous surgeries, but the mailing came super early this go
round and now here I sit dreading August 6th as if it contains the
plague. Boob 2.2 will now be Boob 2.3. Ridiculous, I know. One, who names there
implants? And two, ridiculous that two surgeries turned into six. (You can find
the background for this upcoming surgery # 6 here (January 2015) and in conclusion here (February 2015). If you haven’t been keeping up, I don’t blame you a bit.) But I am very much
aware that God is still the God of disgruntled and he will meet me exactly
where I am. Ron is still the king of
best caregiver ever and he is all geared up for shoving pillows here and
peaking under bandages there. And I am still the queen of distraction (ok, I totally
over sell that attribute cause I’m really not great at that at all) but
distraction is on the to-do list all the same…along with buying gauze, and
alcohol swabs, and oh I don’t know, maybe ice cream!
The surgery mocks me in my waking hours. The pesky little
sucker drain that now consumes me all because of an oblong envelope arriving
several weeks early NOT containing an invitation to a magical masquerade ball. RETURN TO SENDER!
Double mastectomies almost seem common place now. Sandra Lee, food network host, underwent mastectomy just this week. And there barely goes a month that I don't hear of another person adding mastectomy to their medical list. Celebrities have made the mastectomy discussion more common place and the physical effects a little less taboo. Angelina Jolie braved that path publicly last year. Christina Applegate in 2008. Comedian Wanda Sykes and TV host Giuliana Rancic in 2011. Kathy Bates 2012. And then there is Sharon Osbourne, also in 2012, who chose mastectomy for prophylaxis after diagnosis with the BRCA gene. The list is growing not only for breast cancer but for prevention alike. No one is immune to its grasps it seems, yet we all find ourselves shocked when it lands on our doorstep. My heart gets a little heavier with each new announcement. I know how those moments feel, and I know how mundane life becomes quite un-mundane, if even for a few days, but more likely for many months after you emerge from the OR room. So for those of us not in the limelight of fame, mastectomy seems a little more do-able because of their open discussions of such. But at the same time, I want to shout it from the rooftops that it is the stories of the not so famous, not only of the famous, that better get me through mastectomy moments. These stories are a bit more relate-able for me with similar circumstance and day-to-day events and challenges. (Please know, I'm not saying celebrities are not every day people, I'm just saying they have resources and access to options that may vary from some of the rest of us. So their journey is different, though similar, even if in minute ways.) I imagine what wonders we could do if the celebrity partnered up with the not-so-famous to share both sides of this life. Mastectomy just may have a few less scars when approached with knowledge from someone who traveled the road before you.
And with that we keep trucking on and I see this next surgery in my headlights. Hopefully a little wiser with each passing one.
Double mastectomies almost seem common place now. Sandra Lee, food network host, underwent mastectomy just this week. And there barely goes a month that I don't hear of another person adding mastectomy to their medical list. Celebrities have made the mastectomy discussion more common place and the physical effects a little less taboo. Angelina Jolie braved that path publicly last year. Christina Applegate in 2008. Comedian Wanda Sykes and TV host Giuliana Rancic in 2011. Kathy Bates 2012. And then there is Sharon Osbourne, also in 2012, who chose mastectomy for prophylaxis after diagnosis with the BRCA gene. The list is growing not only for breast cancer but for prevention alike. No one is immune to its grasps it seems, yet we all find ourselves shocked when it lands on our doorstep. My heart gets a little heavier with each new announcement. I know how those moments feel, and I know how mundane life becomes quite un-mundane, if even for a few days, but more likely for many months after you emerge from the OR room. So for those of us not in the limelight of fame, mastectomy seems a little more do-able because of their open discussions of such. But at the same time, I want to shout it from the rooftops that it is the stories of the not so famous, not only of the famous, that better get me through mastectomy moments. These stories are a bit more relate-able for me with similar circumstance and day-to-day events and challenges. (Please know, I'm not saying celebrities are not every day people, I'm just saying they have resources and access to options that may vary from some of the rest of us. So their journey is different, though similar, even if in minute ways.) I imagine what wonders we could do if the celebrity partnered up with the not-so-famous to share both sides of this life. Mastectomy just may have a few less scars when approached with knowledge from someone who traveled the road before you.
And with that we keep trucking on and I see this next surgery in my headlights. Hopefully a little wiser with each passing one.
June 16, 2015 - The Paper Weight
I find having breast implants ridiculously funny. I don’t
know why but if they aren’t making me cry, they are really making me laugh. The
lack of jiggle, the phantom nerve pain, the asymmetry -when they are synthetic
so totally should be symmetrical, the fact that you have a card specifying what
lot number your new breast is, the realization that they aren't flotation devices
(flotation devices?) when one would think that they would be. Trust me, there is a lot to
laugh at for me. But I am finding that not everyone with reconstructive
implants finds the same humor quite so therapeutic.
I was laughing this week about how anyone with implants or
who works in breast reconstruction should keep a “high profile smooth round gel
implant” on their desk as a paper weight. Right?!?!?! Wouldn’t that be a hoot simply
because you can? (Yes, I have no doubt this is not Shark Tank worthy, but it has the potential to be...well funny...to me anyway.) It’s like the tshirt slogan “Yes they’re fake, my real ones
tried to kill me!” I like to find fun in the not so fun. It keeps me from
falling apart in circumstance. Usually as I find myself in any given circumstance I try to be
sensitive to others there with me on the boat. But as I was chuckling at the idea of the implant
weight out loud on the phone with a colleague while I was shoving paper away from my desk fan, I realized for many
people reconstructive implants are probably anything but humorous. Looking
death in the face can very easily change your vantage point and I need to be
careful to keep that in mind. So I’m trying to be more mindful that not
everyone uses laughter to get though life and that some people may very
seriously love or detest their implants for exactly what they are – implants –
nothing more nothing less. Simply a necessity to get from this side of mastectomy
to the other. And that my vantage point
may be a bit irreverent, or harsh, or selfish. Not that this changes my
perspective, just that my perspective may need to sometimes be….less...or simply maybe more selective in how, and when, and to whom it is verbalized. Thankfully, I do
consider my blog a safe place in that people can choose to read or not to read,
but I need to remember that when discussions occur in person, choice is
removed.
I may have made a snafu (it was really hard to tell if I did or not). I’m
back peddling. And I’m teachable.
(But I would buy the paper weight! And I would laugh every time I saw it orchestrating gravity on my desk. I just might not choose to let everyone see it, particularly if they underwent mastectomy. See? Teachable.)
(And if this is the first blog post of mine you have read, please choose another as I promise I have better words to provide.)
(And if this is the first blog post of mine you have read, please choose another as I promise I have better words to provide.)
May 12, 2015 - Survival
She is in surgery this very day, removing the cancerous
breasts and awaiting replacements. She has had a long fight being nearly 6
months since diagnosis and today is the day she wills herself to part with the
old and unite with the new. The question comes as I suspected it would -“Do you have any advice?”
Every single time I hear this question, my stomach rolls a
bit in anxiety and fear of what to say or what not to say. I've eluded to it once before (link to post) when asked what I would tell someone facing
the choice of prophylactic mastectomy. That question in that scenario is tough enough, but the
question carries a different scenario and meaning when asked by someone with cancerous
breasts. It’s like comparing apples to orangutans on several dimensions, but you also realize in a side note that the similarities are there. Removing a breast is removing a breast when it comes down to it. But one being
removed in preventative choice carries a different vantage point than those removed
in a reaction to a diagnosis. I won’t go into greater detail here for sake of
key stroke, but it’s different…and the same…and different.
Since the question keeps arising from various scenarios
I feel as though I need to get past the anxiety of providing a response. It’s
not that I don’t know all the caveats in and out of my own thoughts around the
procedure, it’s that I fully recognize my words may be utterly
misguiding and useless to someone else in a different or even similar circumstance. I could tell you to go this very minute and purchase a foam wedge
for your bed so you may find some comfort when trying to sleep with 4 drains in tow, but you may find that is a useless purchase. Or I could advise
you to not look at the scars early on as healing and a drastically improved appearance
come with time, but you may find that inspecting them in great detail the day
after surgery may be the one thing you need to do in order to move forward. Or
I could tell you that post procedure you may find yourself weeping for no
reason at all, yet you yourself don’t shed a single tear. We are who we are and
we experience what we experience. But as I have said before, I know you will
experience SOMETHING, but what that will be exactly remains to be seen. And therein lies the
anxiety of useless advice. Maybe all you need is gentle reassurance. Or just a
presence of friendship. Yet the questions still come and therefore my anxiety
should be overcome for the sake of the one asking the question.
Surely there is some advice that would be applicable to all
that I could offer with the purest of intents and that will ensure some general
application of good will? For example,
you most certainly don’t want to clip your drains (that dreaded D word) to your
waist band. I feel positive you will find the wisdom in that advice the first
time you head to that bathroom, forget you have the drains clipped there, and then
pull your pants down. Everyone in the household at that very moment will also
remember that piece of advice given with the most sincere of intents. But even
this seems like strange advice on the day of surgery when you are simply trying
to get yourself through that OR appointment with sanity intact. What do you
need at that moment in time when you ask me that question????
As I search my heart and my experience, I recognize I have a great need to know people are there. Not only in kind words or prayer (I am very purposely
focusing on myself that I will never ever say “my prayers are with you” unless I truly intend to pray otherwise this is a slap in the face of God as well as to my
walk), but also an assurance of physical
proximity. There are times when you just need a smiling face or a reminder that
a dear friend is just a phone call away. That would be my advice to friends of someone
going through mastectomy. Don't say what you won't do, and do you best to be there in the first few weeks post procedure. Drop by with brownies. Offer to walk their dog. Show up with the lawn mower. Pull out the hose to water some plants. Send movies and books. And if she isn't up for visitors, which surely could be the case early on, drop a note in the mail or leave something on the doorstep, ring the bell, then go run hide in the bushes (fun for all involved!). I am the first to admit that this "action" of service is hard for me and it is something I am working on in present state, so I am trying to heed my very own advice here as a friend to others going through tough moments. So friends who are supporting someone through a moment, be the sincere kind of friend we would want to have in the same circumstance. Now, to the woman herself in mastectomy, after past reflection on my experience I would want to hear this
encouragement (I first heard these words recently at church and have since traced
them back to Casting Crowns): “We are not supposed to merely survive, we are
supposed to thrive.”
“We are not supposed to merely survive, we are supposed to
thrive.”
“We are not supposed to merely survive, we are supposed to
THRIVE.” I need to let that sink in. I need to mull over its goodness and grace
and realize this nugget of truth can be be applied to any and all events in life. Why can't I master this? I
spend so much of my time simply trying to get through a moment with all my appendages
still attached (survive) while I complain about its every second, doing nothing but watering
down its purpose and intent while simultaneously ensuring the misery of anyone
within ear shot of my words. I dig and I dig to get my head above the soil. I
spend each waking moment simply trying to survive. Then that is exactly where I
stop...after I have sulked it to death and made everyone else around me miserable. I complain and I survive. I've mastered that! I can only imagine how much better serving I would be if I
somehow managed to focus instead on not only the aspect of survival of each and
every event in life, but to also thrive! Can I find a way to let grace seep into all the nooks and
crannies of my experience and in turn find a way to make myself something more
useful and worthy of this breath of air on the other side? Could I not only survive, but thrive
into being more of what He wants me to be when all is said and done? What if I took
those words of complaint and instead magically morphed them into words of
testament of provision in the difficult times? What if I sought to find a way
to turn a downtrodden mess into an accolade of faith? What if every single time
I claimed it to be exactly what it was intended to be….an opportunity…to be
more…on the other side? I'm not saying our current moment is not hard, it is REAL and it is HARD. I've spilled many tears in mastectomy, and lymphoma, and heart break, and loss, and on and on. We still feel the struggle to our cores and we hurt beyond belief. Emotions will happen. And I’m not saying
this has to happen in real-time (though I fully believe it could for some), but rather
that this becomes part of the process of healing that happens as you go and as you grow. It's simply put an opportunity to redefine
pieces of myself that would, in result, propel me into breaking the shackles of
feeling “plagued, burdened, worried, anxious” (and this list goes on of all the
things we claim during hardship). THIS is who I want to be. A person who finds
a way to thrive. Mere survival is for those who have no hope, but look around
you at all the people who chose to thrive and find a way to get there. I think of a friend whose husband was killed by friendly fire while she was 8 months pregnant and how now she spends her time advocating for and with other military widows. Then of the mother who lost her 2 year old son to a diagnosis and now she had an annual golf event that raises thousands of dollars ($42,000 this year!) to give back to the cause. And the young girl, sexually abused, who grew up to open a school for ladies leaving the life of prostitution behind. Then the divorcee who now leads a support group in her home for young wives who find themselves alone. I dare
not attempt to define what this should look like for you, because I think it is
each to their own as seen in these tangible examples here, but I do know that when you purposely seek something out, it
has a way of finding you where you are. Being open to the concept of thriving
in and of itself makes it a possibility and thriving completely changes the outcome. It takes purposeful action and a willingness
to rise above circumstance and allowing Joy to find it's way back into your every day. It’s learning to find that silver lining and
letting it propel you into a better version of yourself….and it takes time. I'm still learning to thrive in each of my circumstances, but I am on the road moving forward all the same.
So this is my advice (albeit now admittedly borrowed from a
nationally known musician), find your way to not merely survive mastectomy (divorce,
loss, unemployment, financial woes, wayward children, infertility, etc.), but
to THRIVE in mastectomy. Whatever that may look like and in whatever timing
that may occur in for you do everything you can to get there…on the other side…a
better version of you. And when you are feeling lost in survival, grab on to someone who has traversed the road before you. They know the way. They can help get you to the other side. Then tag, you are it. Go thrive!
Psalm 143:8
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life.
April 29, 2015 - Over a salad plate
It’s the question that plagues us all, those of us who are
Christ-followers, when we so very often find ourselves tangled in the web of
deciphering God’s will: “Which way would he have us go?” This question comes up
for me time and time again! And because
I am a “pleaser”, so very much wanting to be what He wants me to be, I often
find myself paralyzed by this question. I have no struggle with knowing and
embracing that His will is ALWAYS better than my own (I’m blessed in that
attribute) but this is likely the root cause of my constant pursuit of
deciphering how to remain on the path he chose for me (and note that my knowing
this truth, doesn’t mean I am always successful in choosing Him over me). I am
fully cognizant of my ability to mess stuff up beyond recognition and my fear
of that is a constant motivator. So I take very seriously trying to choose what
God would have me do, maybe even selfishly, to ensure my joy. And because he
has yet to audibly speak to me, I’m left to figure it all out as go. I need that burning bush. I crave that shout
out from the mountain top. And where is
my Gabriel messenger? Does he not know I would follow his words because I so
fully know his way results in so much more joy than my own selfish-chosen path
through this life? He has proven that time and time again to me. I could be an
ideal candidate to receive that stone tablet, as I truly don’t envision a lot
of kicking and screaming on my end to abide by his mapped out plan. But what
happens when his plan is not obvious to me? The turmoil of the deciphering is
exhausting.
I’m holding the vacuum hose up to the ceiling while standing
on tiptoes and teetering in arm-exhaustion trying to keep it perched “just so” in
the seam of the freshly spackled ceiling as Ron is up on the ladder with
sandpaper in constant movement. And at that moment I’m in awe of what we are
doing. It’s 9:45 at night, exhausted,
and we still have several more tasks to complete before the following morning.
Here we are doing something that just 2 months before seemed unfathomable. Our
forever home, not our dream home, but our home that we chose purposely to take
us into the frailty of geriatrics, is about to be sold. And as we repair and
paint the last ceiling divot, I stand there mesmerized at what was about to
unfold. A quick reminder of “never say never” and the uncertainty of the
“knowns” of life. In recent weeks God, on numerous occasions, has prompted our
heart to be open to transition. This willingness to give up our comfort zone in
a trade out for the yet to be determined was knocking at our door. We felt this
very strong pull to sell our home and move instead into
something…different…with no place to go, a much smaller budget, and against the
stream of this American Dream. On paper it seems bizarre and in contrast to
everything we understood for ourselves in days of past, but in our hearts there
was this understanding of some not-yet-defined purpose and intent. Many were
calling us crazy, and some were watching our every step in anticipation of how
this would fall out. Even we couldn’t answer the questions of those around us.
We simply knew we were being prompted to go…to someplace to be determined. An
in that there was this indescribable peace. This understanding that should He
ask you to go, you pick up your mat and you go. And what would lie in your
tomorrow, no matter how different, or less, or confusing it may seem, it would
somehow result in so much more. Now let me stop here and say that this came
over the course of many weeks for me. Ron somehow found himself on that
bandwagon very early, but I did a little hokey pokey dance in my commitment
level. One foot in, next day the same foot would be right back out, then the
arms following in the same in and out jig. But as I prayed and prayed and prayed,
and revisited the moments of past of God’s faithfulness in my life, I found
myself leaving my foot, my arm, in the circle for longer periods of time until
one day, almost without awareness of what had happened, I found myself “all
in”. Next thing I knew, I was standing in my closet, on my tip toes, holding
the vacuum hose at the ceiling in the closet where I had just recently
discovered the true condition of my heart when trying to part with just 1 of 13
sweaters. In that same closet I found peace in the understanding that my goals
would not always align with His and that His would trump mine every single
time. Those of you that truly know me and have seen my failures and
accomplishments in this life know this is a huge thing for this infiniti-driving,
silver-spoon carrying, women of privileged standards. Only God could have
transitioned my self-serving vain heart to seek him over my desire to have the
comforts I have so purposely collected. Only God could have provided me a peace
in the elements of this wide open slate of selling our “forever house” where we
didn’t even have the very first inkling of how and what? And in my exhaustion
while holding a vacuum hose, while my husband sanded away at the excess
spackle, I felt in tune.
The next morning, while I sat having lunch with a group of
mentors, my husband sat in the middle of our bedroom in great prayer for
guidance and wisdom in this decision we were pursuing as his heart had suddenly
gone from peaceful to anxious. While my peace became solidified in a
conversation over a salad plate, Ron’s began to unravel. In the span of a
few hours we were trading places and the answers to our prayers becoming more
evident. While I had prayed for peace to do what would be difficult and for acute
awareness of the condition of my worldly heart, Ron was praying for wisdom and
guidance as the leader of our household as to how this would all unfold. And as
the days passed and the prayers became more intense, his peace with moving began
to unravel as God started to answer his prayer for wisdom.
So you ask me, Sally, how was this an answer to prayer? And
I can easily say that God was working on Ron and I individually knowing the
states of our individual hearts. I have to wander if this journey was all about
me and the need to re-align my goals and pursuits in this life. God bringing me
to a point of surrender and then to an incredible sense of peace broke the
stronghold this “stuff” of the American dream had me under. His allowance of
anxiety in Ron’s heart as we approached this “sell date” spoke to us that this
was about the journey of being willing to give things up, but that he wasn’t
yet calling us to the actual decision. (Genesis 22 for full story- Abraham, take your son and lie him on
the altar. Abraham, in your obedience as you carried your son to the altar, I
now provide you instead with a substitute sacrifice to take his place). I think
this process was about us discovering what we held dear and to get to a place
where we “could” and “would” walk away from it all if needed. I don’t know if
the full purpose of this exercise will be understood anytime soon. But I do
know it is in preparation for “something” and that I am a better specimen of
humanity today than I was in the days of yesterday as a result.
So while the lock box was removed from our door handle
yesterday as we ended our pursuit to sell and chose to stay in our current house, the condition of my heart became a
little less self-focused and a little more in alignment with the Sally He
intended me to be. And the bond of our marriage became stronger as we sought,
in unison and persistence, his plan for our lives and trusted him beyond our
understanding of “what next”. Some of the most mentally exhausting weeks of our
recent years, but some of the most fruitful and eye-opening in return. Thank
you, Lord, for getting me past the ugliness of Sally and showing me once again
that your way is the only true path to Joy.
(And now to find a way to ensure I hang on to that for more than a month!)
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