"Losing my breasts"? A different perspective.

Someone recently brought to my attention this blog entitled, "Losing My Breasts." The comment that went with the post, which came from a fellow breast cancer survivor, was not complimentary. I began to read it with great interest, expecting some sort of reflection following a mastectomy.

That is not what I found. In case you don't want to read it, I will summarize. The woman begins by saying, "I didn't realize I would lose so much of myself with my breasts." She talks about how they defined her more than she realized - the way she stood, so confidently. Now, she looks in the mirror and feels "sadness and shame," "old and used. A relic of days gone by." I nodded along with all of this. I have felt those feelings. I can see how one might feel old and used after an ordeal like this. As the swelling as gone down on my new breast (or my "newbie boobie" as a friend and I decided to call it), I have noticed more that I can still see all those old scars along with the prominent new one. I have been poked and prodded and cut and misshapen, and I do feel some of those things she mentioned.

The nodding stopped with this line:

How is that even possible? All I did was have a baby and breastfeed.

Yes, that’s correct. I didn’t lose my breasts to cancer or in a disfiguring accident; I lost them doing the most natural thing in the world – becoming a mother.

I felt like I had been kicked in the stomach. My jaw dropped open, and a lump rose in my throat. She goes on to reflect on the love/hate relationship she has had with her overly large breasts, and the various struggles she has had with body image, and how now that they have lost their previous shape, she has come to realize the role they have played in her development. She struggles with her new, post-baby appearance, but worries about what getting a boob job would say to her daughter. Her final question is, "How can I find myself again without my boobs and still be a good mom?"

It's a fine story. I'm sure it's one that many women need to hear, as I'm sure she is not alone in her experience. Losing one's figure is a legitimate loss, and kudos to her for being willing to share it in such a public forum, because it will probably help some others.

But my gut reaction was emotional. Here I am mourning the loss of being able to nurse my children from my own body, and she is complaining about it. Furthermore, with the title, "Losing my breasts," it sounds a bit too much like she is equating her struggles to those of a woman who has literally lost her breasts. (One experience is not better or worse than the other, but they are not equal.)

Understandably there was a strong reaction from the breast cancer survivor community, especially from those who will never breast-feed, or even never bear children. These reactions have been very emotional, and perhaps not entirely fair. I do admire her for sharing her story in a public forum. But reading her story did make me very sad: sad for myself, because it brought up a lot of my own emotion again, and sad for her, because she is clearly struggling with some pretty big body image issues, and she doesn't seem to be able to see just how blessed she is by her loving husband and beautiful daughter. How discouraging for her not to be able to see herself as her husband sees her!

This has also prompted a lot of reflection for me that has continued throughout the day. First of all, I don't want to be mad at this woman, but if I am mad, it is for her being so unable to see her blessings for what and where they are, right in front of her nose. We are all guilty of this oversight at times - we complain about having to walk a long way from our parking spot to the door, until we find ourselves complaining to someone who has no legs. I have found myself complaining that I have to wait to have children, but then I remember that I CAN have children, a blessing many who have undergone cancer treatments do not have. I commented in one forum, "What I wouldn't give to be able to tell my daughter someday what it feels like to be pregnant, and how your body changes. What a miracle to see how your body prepares to bring a child into this world and sustain it. How beautiful to look in the mirror and rejoice that my body did what was created to do: bear and feed my children. 'Used,' she calls her body, with disdain. I would say that with joy." In another forum, I added, "In a sort of strange way, I was looking forward to seeing saggy boobs someday, knowing that it would mean my lifelong dreams had been fulfilled. Instead, I see scar upon scar - the physical kind, which bring up the emotional ones as well."

After posting these two comments, I continued to reflect on this woman's story. And finally I posted directly on the blog. Rather than recount it for you, I'll just paste below what I wrote. I'm sure I will continue to reflect on it - anything that brings up such a visceral reaction is something worth deeper exploration. I think I would be fine with her sharing this story if she hadn't titled it, "Losing my breasts." Perhaps, "My Saggy Baby Boobs," or, "Farewell to my Figure," or if she had reflected more intentionally on her recognition of how this part of her had shaped who she is, and the loss of it has caused her to have to re-imagine who she will be (I think she was aiming for that, but it came off as self-pitying and shallow) - that is certainly something I could even relate to. But to talk about the very thing I want more than almost anything else in the world, and how it has ruined her self image... that was tough for me to swallow.

Anyway, here is what I posted on her blog:

I don't want to minimize your loss in any way - even though having a child is a joy, it does include loss: loss of a figure, for sure, plus loss of the freedom that childless life allows, and many other losses as well. However I, like others who have commented, find the title of this blog to be very upsetting, because here I sit, age 29 and planning a wedding for August, and I'm recovering from a mastectomy three weeks ago, after three independent developments of breast cancer in 6 months. I'm glad you are willing to share your story, and I hope sharing it has brought you some clarity; for me, reading your story brought up again the sadness that I will never look in the mirror and see saggy breasts that fed my children, a dream I have long looked forward to. Instead I see scars - the marks of five biopsies, a port-a-cath, and a mastectomy. But even in the sadness for the loss of my breastfeeding dream, I also see a lot of joy: the joy that I will be around to feed my children in other ways; the joy that I fought for my life and won; the joy that each scar is proof of deepened character, of a life experience that made me who I am.

I had pretty good boobs before, if I do say so myself, but they were never what made me beautiful. What makes me beautiful is all those life experiences, marked by scars inside and out, and the incredible people who surround me, and a deep faith that upholds me, and the knowledge that I am a fighter who has so much to offer my hopeful future children.

In response to your question, how can you find yourself again without your boobs and still be a good mom: I think you already know, because you said you don't want your daughter to define herself by her breasts. What do you want her to define herself by? Her brains? Her sensitivity? Her personality? Her ability to bring out the best in everyone around her? Her laugh? Her willingness to accept challenges? Help her to cultivate those traits, and love herself for them. And then ask yourself: "what about me?" By what do you want to be defined? For what do you want people to admire you? For what do you admire yourself? Learn to love who you are, independent of your body. Show your daughter what it looks like to love yourself and be comfortable with who you are, and she will do the same. That sounds like a great mom to me.

Drains are gone!!

My drains are gone!! All gone!! Wooo-hooo!

Went to the plastic surgeon today and they took out my second drain. Nothing weird hanging off of me! No more stitches pulling on my skin and being irritated. No more lacing my drain and tube through all my clothes whenever I need to get dressed. No more complaining that Klaus is sitting on my drain, or him accidentally opening it and grossness getting on my clothes (to be fair, this happened only once). 

I. Am. Thrilled!

Doc told me I have to take it easy for the next 72 hours, because the more I move, the more fluid rushes to the surgery site, and I don't want to get a seroma. (That's sort of like a hematoma, but with surgical fluid instead of blood.) Okay, so I'll lie low (as low as possible) for three days. (Jesus did it, and look at the pay off!) I admit this might be tricky without the drain reminding me, but I have lots of people to remind me, so I think I'll be good.

I'm so happy!!!!

Things I miss

I'm two weeks out of surgery, and... would it be weird to say the novelty has worn off? Maybe better to say is that I'm getting tired of some things about my situation. Today I have an appointment with the plastic surgeon and I'm hoping hoping hoping that my second drain will finally come out. I need the levels to be at 30 for two days in a row, and I was there over the weekend, but then Monday it jumped up to 37 and yesterday it was down again (except Klaus accidentally opened it and it spilled a little, so who knows...). One wise family member pointed out that as much as I hate the drain, it does remind me that I'm not yet 100% and even if my head is ready for some action, my body is not. She is right - with the drain out, this will be harder to remember. I'm okay with that. Get it out!

But until the drain does come out, I have been thinking about some of things that I have really been missing during these two weeks of convalescence. I will share them with you, so that you might fully appreciate your own possession of these small things in life.

1) I miss a good morning stretch. I wake up and would just love to raise my arms over my head, then out to my sides and S-T-R-E-T-C-H it all out after a long night of sleeping. Especially since I can't really move much while I sleep these days, I could really use that stretch. As I get more limber, I can stretch a little bit (sometimes I try too hard and end up with soreness or a charlie horse in my chest, somehow), but not nearly to my satisfaction yet.

2) I miss looking forward to curling up in bed. I spend almost all day some days on my back, under a blanket, propped up by couch pillows. So there's not much appeal to getting to go to bed - where I will lie on my back under a blanket and prop myself up with pillows. Now, if I could curl up on my side and snuggle in with the blankets, that would be something different, but this is not yet an option for me. I sometimes feel a little claustrophobic when I get uncomfortable in my perpetual on-my-back sleeping position and I realize I don't have any other options. I so badly want to roll over and curl up on my side. At this point, of course, I can't tell if that ever will be an option for me again - I have heard of women with implants who have never regained the ability to sleep on their stomach or side. Please don't be me, please don't be me, please don't be me...

3) I miss putting on clothes over my head. I have developed quite a wardrobe of camisoles and button up shirts that make me look and feel fairly normally dressed. I've gotten a little creative, and thanks to the ever-changing Rochester weather, I have had many varieties of layering available to me (one day it's 85, the next it is 65 and rainy). But I would love to no longer have the button-up or step-into limitation to my wardrobe.

4) I miss quickly hopping in and out of the shower. As it is, come shower time, I have to carefully unpin the drain and lace it through my shirt, then pin it to the black stockings to make my "necklace." Then I do the opposite at the other end, wringing out the stockings, unpinning the drain, then carefully stepping into my camisole, lace the drain through, make sure it lies flat and at a good angle that doesn't pinch, and pin it to my shirt or my pants. In the shower, I have enough mobility in my left arm to reach up to my head to get the shampoo on there, but at that reach, I don't yet have any strength, so my left hand can only lamely pat the shampoo in, leaving my right hand to do the grunt work. (This will be even lamer if/when I have the right side done, because I will be trying to do all of this with my non-dominant hand.) To and from the shower, while I have nothing to pin the drain to, I carry it around like a stupid pet rock or something. Ugh, the thought of this ugly drain as any kind of a pet is too much.

5) I miss exercise. I'm not normally a big exerciser - I only do it because I need it, not because I enjoy it. But there have been several days when I've thought about how good it would feel to throw on some running shoes and take off! (I'd probably get to the second block and be over that!) I was supposed to play in a soccer league this summer, and lament that loss every time I see my soccer ball. How good it would feel to really be able to move and stretch my muscles. As it is, I sometimes take Klaus out (off leash, because he's a strong little bugger, and when he pulls on the leash, it hurts) and he'll see a jogger or a dog and take off running, and I'm left on the porch to pathetically and fruitlessly call his name, unable to chase after him, or to pick him up when I would get there.

6) I miss hugs and cuddles. This has been an emotional time, for me and for my loved ones. There have been a couple times when I have been sitting with someone who is crying, and all I've been able to do is shove my empathetic dog at them and hope he'll do. If I could cuddle up to Michael and let him embrace me with those loving arms of his, or wiggle up next to him on the couch while we watch TV. If I could genuinely hug my parents. If I could hug anyone, for that matter, and actually touch them with more then a "gentle hug" (the kind where you don't really touch except your arms and shoulders). I COULD USE A HUG!

I went to church!

I had made it my goal early on to make it to church this past Sunday. I wanted to be able to get to church so my congregations could see me looking good, alive and well, and not be so worried. (They were worried about me as their pastor, of course, but even as I am pastor, there is a certain extent to which I am also daughter, granddaughter, and sister - we are all a part of God's family, after all!) I planned ahead on this, scheduling my dad to be the supply preacher that day so it wouldn't be weird to show up when there is a supply. I told everyone, "See you Memorial Day weekend!" because saying it would make it so.

Even just a couple days before, though, I wasn't sure I would be able to do it. Did I so quickly forget how much energy I expend on a Sunday morning, from schmoozing alone? I was to the point that I could handle even multiple visitors a day... as long as I remained fairly stationary throughout the visit. I could go on a 15-20 minute walk... but that would be the only activity I could handle. A trip to the doctor put me on my back the rest of the day. Could I do two church services, plus the planned garden blessing at St. Martin??

Saturday night, I felt pretty good. I'd laid low for a couple days to save up my energy. I planned to arrive late to both churches so I would avoid any before schmoozing and just do the after-schmooze. Sunday morning I was full of energy! I was very excited to get dressed - I don't very often get to dress up for church anymore. It's usually just a matter of which drab shade of clergy shirt will I wear today, and try to make it interesting with a blazer or cool earrings. But this time - a dress! I needed something that would accommodate my drain - not just accommodate, but hide it so I could look as normal as possible. After looking in my closet a moment, I easily settled on my airplane dress. This is a dress I splurged on for my bridal shower. Michael loves airplanes, and the print of this dress is navy blue with off white clouds and airplanes on it, so I couldn't resist. It is modest on top and has a nice full skirt, so pinning a drain in the lining would hide it with no problem. Perfect!

So getting dressed: I've been wearing camisoles every day because they are comfy and with the one drain still, a bra rubs and hurts a little. I decided today I didn't care - I wore a real bra like a regular person!! Take that, mastectomy! (I could tell, however, that I am only 80% expanded on the one side - didn't quite fill out that side as well. But thanks for the forgiving dress bodice, no one could tell.) I was able to slip the dress on with no problem (button-up tops or stepping into clothes is the only way to get them on these days, since I can't raise my arm yet). It was a little chilly, so I added some blue tights - I will tell you that tights are not easy to get on right now! Not only does it require reaching, but also pulling. But I was determined, and I got them on. Then since it was Memorial Day weekend, I added some red shoes and earrings, and a red cardigan. Then of course a little make-up, including some red lipstick! And voila!

Michael drove me to church. I told him in the car that without sounding condescending, he needed to not let me expend too much energy at once. I knew I would get around people - and people I love, no less! - and would forget that I am still infirm. He agreed. We arrived at church in time for the Hymn of Praise. People started noticing I was there, and I would see them turning around and smiling in my direction. Sweet. When it came time for the passing of the peace, I didn't have to move - several people came to me, but not so many as to overwhelm me. Same after church, during coffee hour. They were very respectful, concerned, and loving. I did find it was difficult to stand all the way through the standing parts of the liturgy, and felt very strange sitting for hymns like "Come, Thou Almighty King" and "Holy Holy Holy," and especially for communion! I guess I have gained an appreciation for people who can't stand throughout the liturgy (for those of you who are reading this to whom this applies - please, sit down if you need to!). I also had trouble holding the hymnal, so I sat on the edge of the pew and rested it on the pew in front of me. (Luckily, at Bethlehem we had planned to worship outside - it ended up being too cold - so the hymns were all printed in the bulletin.) When announcement time came, someone made an announcement about her Relay for Life team. Then I stood up and said, "Speaking of cancer... I don't have it anymore!" *Applause* I thanked them all for their prayers and care, and for the beautiful quilt I have been nearly constantly cuddled under from when I regained consciousness, and how many compliments I'd gotten on it. I said I looked forward to seeing them again in a few weeks.

I lingered at Bethlehem - something I rarely get to do! - while my dad was the one who rushed off to the next place. It was such a luxury to be able to just chat with people, but I should have planted myself somewhere and let people come talk to me while I was sitting. As it was, I stood too long and Michael said, "You need to either sit or leave - too much energy!" Ok, dearest. :) So I waved goodbye to everyone and was on my way, so I'd have something left for the next stop. Michael dropped me off right at the door at St. Martin and I slipped in by my mom. My experience there was similar to Bethlehem, though I had to sit for more of the service. Again, I thanked them for all their prayers and care, and for those who had organized the prayer vigil in the hospital lobby during my surgery, saying how meaningful that had been to me, and also to my surgeon. Like Bethlehem folks, they were very happy to see me, many of them offering me giant grins and a, "Glad you're here! You look great!" It was very sweet. I was touched. After worship we had a garden blessing - St. Martin is just starting a vegetable garden on our property. This year it is just tomatoes. Bethlehem did the same last year (but with a large variety of veggies), and I had written a garden blessing for the first planting. I arranged before surgery to use the same one for this occasion, and my dad agreed to lead it. So I used my last ounce of energy to stand through the blessing. We had a good crowd! I am eager to see how we do, and so glad I got to be there for the planting.

Then I went home and napped. :)

Being there on Sunday, I was struck again by what important learning I am doing being the recipient of the ministry of my congregations. I get to know them in a way many pastors never get to. It certainly helps that I have been so very transparent with them about all of this, allowing myself to be vulnerable, and then to be cared for. Letting yourself be ministered to is not always easy, especially not for pastors, I imagine. There is a long history of pastors being perceived to be somehow above normal people - immune to pain, fear, and doubt. I am not immune to these things, and I don't how to pretend that I am. So I count myself extremely blessed to be the pastor of two communities that let me be a regular person, without ceasing to see me as their pastor, who respect my need to take care of myself without thinking any less of me as a person or a pastor. When I try to grasp all of this, I am overwhelmed, and when that wears off a bit, I find myself filled with immense gratitude and joy. Thank you God!

Healing tidbits

The healing continues to go well. Sort of boring, really, which is why I haven't written in a couple days. Those first days there is notable improvement every day, but now, each day blends into the next. But, within that there are several tidbits that I have noticed, and some things I have learned about healing and health, so I thought I would share them with you.

1) My war paint has almost completely worn off, but I can still be Super Woman. Now that I am showering (almost) every day again, the marker from pre-op has mostly gone away, though I still have Dr. Skinner's initials written close to my heart (this is practice for any sort of biopsy or removal of body part - just to make sure they don't take the wrong breast!). However, since I still have one drain, I still have to wear my stockings-and-drain necklace when I shower. When I get out of the shower, I notice that the part of the stockings around the back of my neck, what would be the top, looks like a sort of square cape around my neck. I am reminded of the coaster a friend recently gave me that says, "My super girl cape is in the laundry. You'll just have to take my word for it." (My super girl cape is hanging over the shower rod.)

2) My dog is my hero. I loved my little Klaus boy already, but in the past week and a half, I have developed such a deep affection for him - as a dog and friend, and as an indispensable member of my care team. My dad joked in a recent email that I have had around the clock care between Michael and my parents, "and Dachshund Klaus through it all" - but this is no joke! He cuddles up beside me when I'm on the couch, or at my feet, resting his little chin on whatever body part is closest, and everything feels a little calmer. He gives me extra reason to want to get out and try to walk a bit. His various antics keeps the whole family in stitches, whether he is trying in vain to hide his bone from us, or trying to climb us like trees, or chewing on his own ear, or just looking at us with his "study in triangles" face and those irresistible brown points above his eyes. He is empathetic, cuddling up to whomever is the most upset, and very willingly licks up our deliciously salty tears. He trots happily by our side, looking up at us like, "See what a good boy I am?" and suddenly it feels like if we can get a stubborn Dachshund to do what we want, maybe anything is possible!

3) Even though I'm on medical leave, I'm still doing ministry. It occurred to me today that I have visited with more church people in the last week and a half than I normally can in a whole month on the job. Except now I am not the one calling and making appointments to see people; they are calling on me. I receive a meal from either a colleague or a church member almost every day of the week, and one of the joys of this is that I get contact with the outside world without leaving my house, and they all get to see that I'm doing well. Maybe we chat for a few minutes in the kitchen, or maybe they sit down in the living room and we chat for 20 minutes (depending on how I feel!). Either way, I am able to connect with people in this very personal way, a way that is never possible when I am The Pastor. They see me as a real person who gets tired and is in pain and isn't as "on" as I strive to be on Sunday mornings or at meetings. And I see my wonderful congregation have a chance to minister to me in my hour of need. A friend of mine said one of the best things about being on maternity leave was that she was able to attend her church as a pew-sitter, and she learned SO much about her church this way! This is similar - I get the chance to see how beautifully my congregations minister. I do believe this will shape my preaching, my pastoral care, and my day-to-day engagement with my congregations once I am fully back on my feet.

4) Just because I feel better doesn't mean I am better. This is a hard lesson. As I grow stronger each day, I also grow a little cockier each day, believing I can do more than I can, and so the most difficult part becomes reminding myself to let people keep taking care of me, and not to feel bad or lazy for doing it. That is why my parents flew all the way here from California. That is why Michael spends almost every moment that he is not at work by my side, making sure I am comfortable and happy. There have been a couple of days when I feel pretty good, and so I go for a walk, or say, "Yes, come on over!" or try to help get dinner ready, and then guess what? Later that day I am completely wasted and in pain. Okay body, I hear you. I'll do better next time. (After a couples days in a row learning this lesson, I woke up yesterday feeling great, but spent almost the entire day on the couch, hardly even sitting up. And surprisingly, I slept better last night than I have since the surgery, because I didn't wake up in pain at 4am. Go figure.)

5) Being on medical leave is healing body, but also mind and spirit. It was a push, getting ready for surgery. I finished my first two surgeries in October last year, then soon enough it was Advent, then Christmas, then almost immediately there was Lent, and Easter, and then my bridal shower, and then my doctor's appointment... And then my diagnosis. And the emotion. And the decisions. And the looking for a house to buy. And more decisions. And putting an offer on a house. And setting a date for surgery. And preparing myself for this major life change. And the work I needed to do before going on medical leave for a month. And the piles of unread emails. And more emotion. ... And now that's all done, behind me, and all I can do is be. I have caught up on most of those emails (now putting aside work related emails to be dealt with when I return!). I have caught up on some reading. I plan to read some work-related books in the coming weeks, books I really want to read but never seem to have time for (and I admit, assuage some of the guilt I have for having to be gone a month, especially as I start to feel better - that way, this time can double as "continuing education"!). I have time to sit and reflect on my new life, my new body, and to look forward to what a cancer-free future will bring, as well as consider how I'm going to ensure that I remain cancer-free. I have time to breathe. I have time to enjoy being with my parents with no other commitments pulling on us, because they, too, have worked ahead in their work so as to be able to be fully present with me and with Michael. I have time to relax. I have time to help my mom make a quilt. I have time to pray. I have time to write. I have time to focus on me, on healing. This is what health feels like. Please God, let me remember this, and continue to find ways to cultivate such health even as my life resumes its usual busy-ness and activity. Amen.

Good News/Bad News: The Story of a Yo-Yo

I had told Dr. Skinner right before my surgery that part of me wanted her to find DCIS in another part of my breast so that I could say, "Boy, I'm glad I did that! That was the right decision!"

So when she came into my post-op today and the first thing she said was, "Well, you definitely made the right decision," I responded, "Oh good!" and to my parents, "I told her I wanted her to say that!" But then she went on.

The took out the DCIS they knew was there, and it was about a centimeter in diameter. (More than twice the size of what they took out last fall, which was 4mm.) It was everything they expected it to be - stage 0, low grade (grade indicates how aggressive it is), and easy out. Also, the two lymph nodes they took are clear of cancer.

But.

They also found a very small, 3mm bit of invasive breast cancer. It is also low grade (not aggressive) but moves me from stage 0 to stage 1, meaning it had broken through the wall of the milk duct and was no longer contained. It was near where they originally found the DCIS last fall, but was also an independent occurrence. So, three independent developments of breast cancer in the same breast within six months. And unlike the two instances of DCIS, this more threatening cancer did not present itself early with calcium deposits to be seen on a scan. Probably we would have seen it by my next MRI, but that's not for six more months. So it is very, very good that we got it out.

Of course this opens several conversations. One is that it brings into question the perceived health of my right breast. If my invasive cancer didn't present itself early on the left, maybe it wouldn't on the right either, even with close monitoring. So even though we know my right breast was less radiated, and is thus lower risk than my left, is there any wisdom left in keeping my right breast, knowing that I must be very susceptible to breast cancer? (I will say that I have been glad every day that I only did one side, because having the use of my right arm has made this recovery SO much easier. I would like to dwell on, "You definitely made the right decision," rather than beat myself up for not doing both right now.)

Another, more difficult conversation is how does this change my medical treatment plan? Dr. Skinner said because this is so small, and they do hope they got all of it, chemotherapy is not necessary. But the risk remains that some little cancer cells slipped out unnoticed. So the recommendation is Tamoxifen. This was a possibility last fall, too, and I opted out. This is a drug that reduces the risk of recurrence by some 50% - thus protecting both my right breast and anywhere else that this invasive cancer might have gone. It also increases some other risks - uterine cancer, blood clots, night sweats, cataracts... And most devastating for me, the protocol is to take it for five years, and while I'm on it, I can't get pregnant, because it is a major risk for a fetus.

So here I am: I agonized over the decision to have a single or double mastectomy, and deciding to save my right breast for breast-feeding, with the intention of having a couple kids as soon as possible and then possibly having the other side done. Now, I will likely have to take this drug that postpones having kids. So much for yet another carefully thought-out plan. Even if I opt out of Tamoxifen (so far my gambling with this thing has not gone my way), Dr. Skinner was concerned about getting pregnant soon because if I do have a fairly new, hormone receptive, invasive cancer cell floating around in my body, flooding my body with the hormones of pregnancy will not work in my favor. Some Tamoxifen is better than none, so I could take it for two years, go off to get pregnant, then go back on. Of course, I'll have to discuss this all of with my medical oncologist. Also, the tumor board will discuss my case a week from Monday, and determine whether Tamoxifen is the best choice, and also how this might change our feelings about the other breast.

How am I feeling?

At the time of the appointment, I was receptive to the information, taking it in like I have all along, storing it away to be processed later. I was disappointed but not altogether surprised, I suppose. This was why, after all, I decided to get rid of the whole breast, because I knew I was high risk. So of the myriad emotions I feel right now, shock is by no means one of them. Disappointment definitely makes the list. Discouragement and frustration, yes. Sadness, certainly. I'm getting fed up with every life plan I make getting messed up by this stupid thing. I'm upset and confused that the one thing I have consistently wanted for as long as I remember - children - is the dream that keeps getting threatened. Once again, I am challenged by the fact that I always thought motherhood was my primary call in life, and so why does it need to keep being put off? At this rate, we won't even be trying for kids until I'm at least 33 - I thought that I would have school-age kids by the time I was 33. I readjusted my life plan for having kids in my late 20s, then early 30s... I don't want to readjust anymore.

But now with that pesky word, "invasive," the stakes have jumped dramatically higher. In talking to Michael about it, we agreed that we have tried to be moderate but smart about my treatment decisions, and I honestly don't think I made wrong decisions along the way. They were the right decisions for the information we had, and the place I was emotionally at the time. But three cancer developments in six months, and one invasive, we don't want to mess around anymore. Enough already - let's be conservative about this and do what needs doing so that I can be around for the babies I so desperately want. There is nothing cool or impressive about racking up cancer diagnoses.

Thank you for all your prayers and light and love and energy and cards and meals and laughter. Once again, I ask for prayers for help with discernment. I'm not exactly sure what God is trying to prove with all this business, though I am confident this will someday become apparent. Hopefully sooner rather than later.

(At the very least, Michael and I noted, postponing children will allow us to go on a proper honeymoon sometime next year! Greece or Hawaii, here we come! We have already made a list of all the places we will try to go and things we will try to do to make the most of this post-cancer, pre-kids time.)

Better than perfect

Each day is better than the last! I got in another walk yesterday - this one even included a popsicle in a park and a glass of wine at a friend's house. I had friends from my choir stop by with armloads of gifts and I was completely floored by their generosity and thoughtfulness. I'm eating normally, getting around with greater ease, and keep forgetting to take my pain meds (which means I don't need them as much!). Not everything is perfect, of course - I do have some pain, and have been getting "phantom itches" where it feels like I have a hair or something on the new breast but I can't feel any scratching I do to relieve it. Sometimes after I've been sitting still for a while, I try to get up and can't move. Such was the case this morning...

I woke at 6-something and thought, "I wonder if I could try sleeping on my side a little..." So I rolled over with some pain, but once I was in place, the pain subsided and glory be to God I fell asleep for a while! It was so amazing. But then when I woke up and was ready to get out of bed, I felt like a turtle on her back. Could not move, but to comically wiggle my legs and arms around and try to find some leverage. Michael had already gone to work and my parents would not arrive for another hour. Hmm... With Klaus's moral support and toe licking, and breathing through pain, I finally found my way upright. Success!

Bolstered by my bed-conquering success, I ventured toward not only a shower but, get this, shaving my legs! We're talking big time. I was taking getting ready this morning very seriously because today was the day of my first venture outside of my neighborhood - to the doctor! My plastic surgery post-op. Sure, it was just the doctor, who has seen me at my worst, but I was viewing this as an excuse to wear real clothes, cute shoes, the whole bit. I changed out of my post-mastectomy camisole for the first time in a week. Woo!

After getting ready all by myself - even blow drying my hair and making breakfast! - and even without crying, we headed to the doctor. First I saw the resident, who took out my Drain #2. (Or, as I put it: Drain #2 traded from Team Recovering to Team Health, aka the garbage can.) Very weird thing, having a drain pulled out. It hurt a little, mostly the skin where it was coming out. He snipped the strings holding it in, told me to take a big breath and pulled while I breathed out. Voila! One drain gone! He threw it in the garbage as we said, "Good riddance!" He was hopeful that the second drain could come out as soon as a couple days, maybe Friday, next week at the latest. Woo-hoo! I can't tell you what a relief it is just to have even one of those ugly drains out of my life.

Dr. Langstein came in as the resident was putting a band-aid on the former drain. He immediately said, "It looks beautiful! Perfect! It's better than perfect!" As pleased as I was by his delight, I said, "I'm not sure I'd say beautiful..." He said recovery is measured in weeks, not days, but this was really good progress. He showed me all the good parts of it. "Here's the seam where the muscle ends and the Alloderm [donated dermis] begins, so that will fill in and be less noticeable over time." "This is the other drain, so that will be gone soon." "Some bruising here, but that will go away." "See the line I drew around your original breast so we'd know how far down this one should come? It's just right!" As he showed his excitement and delight, I started to think he was right - my new breast IS beautiful! It has some work yet to do, and having the incision healed a bit more will certainly help, but it certainly has potential.

We also talked about the next steps. He said he could take the port out of the saline implant that's there after he fills me up the rest of the way and I could leave that in there for as long as I like - even until I may decide to do the other breast, then swap out both at the same time. Or I could keep the left always one step ahead of the right. Or I could not think about this right now and just focus on making sure we can get this new breast into my wedding dress! I had expressed great concern about this before, and he is taking my concern very seriously. I joked that I could go try the dress on at David's Bridal (my purchased one is in California, but since it didn't need tailoring, I could try it on off the rack) and then come right to his office for adjustments. He said, "Just bring the dress in here, we'll get a perfect fit!" I chuckled and said, "This is sort of silly... it'll be fine." He said, "It's not silly! We'll make it perfect!" I love him.

And of course, I asked about my tattoo - when can I get it? I've had some friends chip in some bucks, so I'm extra eager now! This was the first I'd told Dr. Langstein about my tattoo plans, and he promptly pulled out his iPhone to show me a picture of one of his patients. She had a large tattoo that covered her whole breast - two leprechauns! He said it used to be one leprechaun, and he'd hoped that after cutting him in half for the mastectomy, he could sew the little man together, but the two halves no longer matched up. So they had a tattoo artist add a bottom to the top half and a top to the bottom half. Hilarious! I loved that he showed me that. He said I could get my tattoo in 4-5 months. Yay!!

Overall, a stellar appointment. He was genuinely delighted by the progress, and it never hurts to hear someone who sees a whole lotta boobs say it looks, "Beautiful... better than perfect!" especially given that he was concerned about how the skin would act. As one friend told me, "A doctor who works with skin told you that you have great skin! It's doesn't get better than that!"

An Open Letter to Angelina Jolie

Dear Ms. Jolie,

I heard about your courageous decision to have prophylactic bilateral mastectomies and share your story with the world while I was in pre-anesthesia before my own mastectomy. Needless to say, it had an effect on me.

My situation is different from yours. I am also a young woman, 29, but I have no family history of cancer. What brought me to the decision to have a mastectomy was that I had Hodgkin's Lymphoma when I was 15, and was treated with chemo and radiation. The radiation treatments that helped save my life also put me at much higher risk for breast cancer, and so last summer it wasn't entirely a surprise when I turned up with ductal carcinoma in situ (DCIS), a very treatable, non-invasive, pre-cancer. I had a lumpectomy, and a re-excision to make sure the margins were nice and wide. I hoped that would be the end, but my doctors were still urging me to get a mastectomy. If some of my breast tissue responded this way to the radiation treatments once, there was a good possibility they would do it again. On the other hand, I was newly engaged to the love of my life, was only one year into a wonderful and promising ministry as a pastor of two small (growing!) Lutheran congregations, and could nearly taste my lifelong dream of having children and breast-feeding them. I wasn't ready to lose my breasts, and with them, so many dreams. I decided to hang onto both breasts, and my doctors agreed to monitor me closely.

At my six-month check-up, the same thing happened all over again: same breast, DCIS, different location, and presumably an independent development. I couldn't deny it: this would keep happening as long as I had breast tissue, and while so far it had presented itself very early, who was to say I would continue to be so lucky? The one breast had to go. But could I give up both? The right had never had a problem. Was it worth holding onto that breast and my dream of breast feeding? And what girl wants to be making these decisions while she is trying to plan her wedding? In the midst of all this, I was also worried if my perfectly fitting wedding dress would fit properly after treatments!

In the end, I decided I wasn't ready to give up my healthy breast. My surgeon wisely advised me that I needed to be at peace with the decision, and at this point in my life, I could not find peace with giving up everything. So this week, on the day you told the world about your brave decision to give up your breasts for the sake of health, I underwent a single mastectomy to get rid of a persistent pre-cancer.

I read your honest Op Ed, of course. The other stories that I read laud your bravery, which I appreciated and with which I wholeheartedly agree. I know a large part of your purpose was to shine some light on DNA testing and options available for women who carry the so-called "breast cancer gene." I hope and trust this was one outcome of your sharing, but as I said, these particular purposes don't really apply to me. But I do want to tell you what part of your ordeal does speak to me, loud and clear.

You know as well as anyone the emotional impact that goes into the decision to have your breasts removed. Breasts have become such a sex symbol, and to cut them off in what should be the beauty prime of life does not jibe with our cultural instincts. So one of my more emotional struggles in this journey has been that just as I was starting to believe the people who told me I am physically beautiful, I was being forced to take this huge step backwards in the cultural understanding of physical beauty. As much as I know that inside beauty is what counts, and the beauty of my face will still shine brightly (like you, I have a wonderful partner, and he constantly reminds me of this!), it is a hard hit to take. But when I heard the news about you, my first thought was, "What a beautiful decision." It locked into my heart what my brain already knew was true: that beauty goes far beyond boobs.

Perhaps it is ironic that in your story about your breasts, you have taught the world about so much more than breasts. Ms. Jolie, I would like to thank you for showing me and the whole world that while you are one of the most beautiful women in the world, your beauty and beauty in general has little to do with your body. Beauty is health, and being proactive and confident about your health. Beauty is being around for your family. Beauty is sharing your story, whatever you story is. Beauty is courage. You are beautiful, Ms. Jolie. And so am I. And so are the 1 in 8 women who will be diagnosed with breast cancer in their lifetime. And so is anyone who is willing and able to be true to herself and share that self with others.

From one beautiful woman to another, Ms. Jolie: thank you.

Peace,
Johanna Johnson

Beautiful Day

Yesterday was indeed a beautiful day, despite its grumpy start. After my post-shower breakdown, things started looking up. My parents came over after they were done at the Lilac Festival - bearing gifts for all, of course! We enjoyed being a bit lazy for a while, then I said, "Who wants to come with me on my first walk around the block?" Eager responses from mom, Michael, and Klaus. So mom helped me put on some walkin' shoes (reaching all the way to my feet - a pleasure I have not enjoyed since Tuesday), we got Klaus's leash on, and we were off! It was simply beautiful out - not too hot, not too cold, sun shining, light breeze. I was glad it wasn't too hot, because I wanted to wear a sweatshirt to hide my ugly drains and the ickiness that fills them. After letting mom and Michael push up my sleeves for me (again, you don't realize how much work this is!), I was quite comfortable! We walked around the block, pointing out all the things we liked and all the things we would do differently about the houses we saw, dreaming about Michael and my own house someday soon. (By the way, our mortgage situation may be fine - details when we know for sure that it is actually fine.) Klaus was in heaven - he loves walking in a pack. Mom made sure to document my first outing.

(While I am partial to both boys pictured, I think Klaus looks especially handsome!)

(Okay, I think Michael looks especially handsome, too!)

I was feeling so good (although tired) when we returned that I didn't want to take off my shoes. I felt powerful and healthy wearing my running shoes! Add those to my yoga pants, lipstick, and jewelry, and who could tell that I was recovering from surgery? (Well, anyone who saw how carefully I was walking, and how much less my left arm was swinging than my right arm... but that question wasn't actually meant to be answered, so shh!) When my next church meal arrived, the deliverer was delighted to see me looking so well. I was delighted to feel it!

Judy, my landlady who lives downstairs, called to check in on me. She said if there was anything she could do, let her know, and offered that maybe we would like to sit outside in the sun - she was just setting up the table that she uses during nice weather in her yard. Umbrella, new chairs, and everything. So later in the afternoon, when there was a lull but not yet late enough for dinner, I suggested we do cocktail hour in the yard. My friend and colleague had brought by some delicious hors d'oeuvres and a bottle of wine for us to enjoy, so my parents went to work preparing it, and I went downstairs (still well-equipped and empowered in my running shoes!) to check with Judy. "Wonderful!" she said. "We'll set it up for you right now!" My neighbor was also out and said, "Oh, I have something for you. A blueberry coffee cake for breakfast. I realized I hadn't baked you anything yet." I asked if she had forgotten the tin of snickerdoodles she had delivered last week. "Oh, but that was last week," she said, and disappeared into her house, returning with a delicious looking coffee cake as well as a tupperware full of cucumber salad.

Soon enough, Michael, my parents, Klaus and I were sitting in the shady sunshine, enjoying some delicious treats, glorious weather, and quite an assortment of bird sounds for a yard in the city. Klaus was having a field day, sniffing at this and that, greeting every neighbor he saw, and generally exploring a part of the yard he rarely gets to see. No one wanted to come in!

But we finally did, and enjoyed the delicious meal brought by my parishioner, then settled in for some television. Then my parents packed up and left for the night, and Michael and I continued to watch TV... by which I mean I promptly fell asleep. When it came time to move me from the couch to my bed, I was one very sore girl. Let this be a lesson to you - running shoes, lipstick, and sunshine do not a recovery make. Turns out I am still recovering! But it was sure nice to feel for a few hours like a normal, healthy person again.

Needless to say, today has been much lower key. :)

Like a *clean* science experiment

Today was a big day: I TOOK A SHOWER.

Small victories make big differences these days.

I have been getting stronger and stronger each day. Getting out of bed in the morning is tricky and painful, having been stationary for several hours, but once I am up, and I getting around pretty well. I'm trying not to favor my right side, but also not push my left side more than it is ready for. I am remembering the occupational therapist's words that therapeutic pain is 2-3 on a scale of 10, so I'm pushing that far and letting others pick up the slack. I'm letting my assortment of nurses take care of me: mom and dad cleaned my entire apartment yesterday and have made sure I have everything in reach when I need it, from water to crackers to my puke bucket; Michael is an expert drain emptier, "cocktail" mixer (making the various drinks I have to consume more tolerable), and get-up-and-go-er whenever I say the word; and Klaus has helped me nap soundly, and even licked my armpit clean before I was able to shower (gross, dog). Klaus has also helped other members of the family nap:

Even with all this help, I woke up this morning feeling very grumpy. I was grumpy because I have to sleep on my back and oh, what I wouldn't give to be able to sleep on my side again! So I wake up with an aching back, and when I try to stretch it out, the other parts of me hurt. I was grumpy because I'm already sick of Saltine crackers. I was grumpy because I wanted to go to the Lilac Festival with my parents today. I was grumpy because it is Saturday and normally Michael and I would do something fun, especially since the weather is finally nicer. We could go kick around a soccer ball, or rent a kayak, or take Klaus for a walk in a nice park... but no. We could hunker down and watch a whole series of a good TV series... just like I have been doing for days. Ugh.

So I decided: today was the day for a shower. That would perk me up. When it came time, I carefully peeled off the clothes I have been wearing for three days, carefully setting the drains that hang precariously out of my side on the bed so they wouldn't pull. Someone had suggested that a pair of capri stockings around my neck are a perfect length and light-weight way to pin my drains up and keep them from pulling in the shower. (Normally they are either pinned to clothes or in these little pockets I have velcroed to my camisole.) So I slung some black footless stockings around my neck, and pinned the two drains to both legs, making a sort of necklace. I carefully stepped into the steaming shower, and just relished in the water running through my hair and down my back. Immediately, I felt like a person again. I didn't feel the same aches. Even with my ridiculous drain-and-stocking necklace, I felt normal! Then I gathered myself enough to look down. I remembered the morning of my mastectomy, how I'd taken in one last time my fully intact body. It was a much different scene this time, but it felt strangely okay. Something about the shower felt almost magical, like it washed away insecurities and pain. I started to see how this new body could someday look beautiful, once the drains were gone, the swelling and bruises gone, and the incision healed. I imagined my sunflower tattoo there, and smiled. I could still see a little bit of my war paint, and that made me happy, too. Still a warrior. I couldn't feel anything on the surgery site, but I could feel the warm water everywhere else, so that made up for it. Overall, I was amazed how little I felt like a freak. I thought that would be much harder, but I was mostly very happy.

Until I turned off the water. Almost immediately after, everything about reality came back. It was difficult to wrap my towel around me because of the arm contortions that are involved. When I did, I couldn't feel the towel's softness on my skin. Even as I could feel my brow begin to furrow over this, I caught a glimpse in the mirror. With the towel around me and the black stockings around my neck, it looked almost like I was wearing one my favorite dresses - a cute, black, halter top dress. It's a dress I might not be able to wear anymore, but in that moment in the mirror, it looked like I was wearing it again. I tried to stay happy about my shower experience.

But it didn't last. I slowly, carefully, got dressed as much as I could. But that involved standing in front of the mirror, and this was the first time I saw the whole package from the front instead of top down. This was that emotional experience I had expected in the hospital when I accidentally saw my new boob before I realized what had happened. And now it was happening while my parents were out and Michael was asleep. I looked like a science experiment. A huge red gash across my chest. Two egg-shaped drains with bodily fluids in them, hanging out of my side by long, skinny tubes. Dr. Skinner's blue initials still clear on my skin. I can see under the skin where the drains are, and it looks like worms or something, deforming the otherwise smooth skin. And I can't feel any of it. I could feel the tears burning in my eyes.

"Help." I needed someone. "Michael, help me." He awoke and jumped up and came over to help me get the drains where they needed to be, and get my post-mastectomy camisole over the surgery site. It didn't take long for him to see the tears in my eyes. "Oh baby...."

"I look awful!" I said.
"You look beautiful."
"I look like a science experiment."
"You look cancer-free."
"It's terrible."
"You look beautiful to me. Nothing will change that."

I cried for a while into his chest while he held me and told me how beautiful I am, even though I couldn't believe it at that moment. Then I decided I would make myself believe it. I put on a pair of yoga pants - at least my butt could look good! I asked Michael to help me blow-dry my hair, which he did with some uncertainty at first but then really got into it. I put in some product to make my bangs fall nicely. I put on some red lipstick. I put on some eyeshadow, mascara, and blush. Then some dangly gold earrings, and a pretty cross necklace. Not a bad result. Amazing what some tight pants and lipstick can do for a girl's spirits.

(Side note: I often listen to my Boobie Playlist while I write these blogs, and more often than not, the song I'm listening to has everything to do with the topic. For this one, what should come up but Carole King's: "You've got to get up every morning with a smile on your face and show the world all the love in your heart. People gonna treat you better, and you'll find, yes you will, that you're beautiful as you feel." Followed by Flaming Lips: "Do you realize that you have the most beautiful face?" Thanks Boobie Playlist. You've come through for me again.)

Waking up is hard to do

I had envisioned so many times what I would think when I woke up. I really hoped it would be, "I'm cancer free!" It was not. That thought didn't come to me until several hours later when someone asked me how it felt to be cancer free. No, my first thought was, "Ouch. Wow, this hurts." And then, "What day is it? Is it Sunday morning? Am I late for church?" (Seriously?) And then it felt like it was very quickly thereafter that they moved me from the immediate recovery area to what would be my room, but really wasn't much of a room. It was the 23-hour unit, and it was more of a nook than a room, with a curtain instead of a door. Not great for privacy or quiet. Luckily, I had no trouble drifting in and out of sleep, even still! (I later learned that the reason for my non-room was that the hospital was at 105% capacity! Guess I'm grateful for what I got!)

I read later on Michael's Facebook page that they waited two hours after my surgery to see me. As far as I was concerned, it was pretty immediate. Suddenly, I heard voices of people I loved and opened my eyes and there was Michael, and my mom carrying three beautiful pink roses, and my dad, all smiling at me. Welcome to consciousness! Michael also presented me with something he'd found in the gift shop - a plaque with a picture of a dog looking very much like Klaus, that said, "A spoiled rotten Dachshund lives here." True enough. It made me feel like Klaus was there, too. (As I write this, he is sitting on my feet, in the flesh, and I admit that is much better than the plaque.)

Those first few hours are pretty blurry. I had an IV for antibiotics, electrolytes, and pain meds. I was on oxygen - that annoying thing in my nose - and I was only too glad to be done with that a bit later! And I was in a lot of pain - it took a while to figure out the right combination of meds. I immediately had someone put out my beautiful new quilt on my bed, and this was quite a topic of conversation among hospital personnel. "That doesn't look like hospital issue!" "Look at that quilt!" Even strangers walking by mentioned it. I insisted that one heals better when one is healing under a quilt full of prayers. It certainly made me feel loved. :) I also remember a parade of pastors coming through. One delivered a prayer shawl made by someone at her church, which lay on my pillow while I was in bed. A couple others offered prayers. I'd guess they aren't used to five pastor visits for one patient in one 24-hour period!

My primary memories of those first hours are of a lot of pain, and not being able to talk very well due to a dry mouth and sore throat (you can guess, given how verbose I am, how difficult this must have been!), and how, due to anesthesia and pain meds, I would start a sentence and by the end of it not remember how it had started. Or I would drift off in the middle. Sort of a silly state, I guess. I remember the first time trying to go to the bathroom was utterly excruciating. I felt immense pain, and was very dizzy and nauseous. Trying to get a hold of the pain and nausea, I closed my eyes and breathed, but closing my eyes made the dizziness worse, and breathing deeply hurt, and made me cough, which hurt even more. I wanted to cry, but that hurt even more. I was determined, having made it as far as the side of the bed, to make it all the way to the bathroom, and the nurse cheered me on and helped where she could. To my utter disappointment, when I got the bathroom, it turned out I hardly had to go at all. All that for a few drops?! But, the next time I attempted the bathroom, it went much more smoothly, so much so that I walked all the way down the hall before returning to my bed. Big strides in a short time!

I also remember accidentally seeing my new breast for the first time. From what I had read and imagined, this would be a big moment in the process. The surgeon would be there, we might ask people to leave the room, it would be this big emotional experience when I would take the first step in accepting my new reality. Instead, I think I was trying to find something that fell or something silly like that and pulled my gown away, expecting that I had a bandage on the wound. I didn't! And there it was - a mound, and instead of a nipple, a large gash from where the nipple used to be to my armpit, glued shut, with marks where it had also been stapled at one point. I felt like I had been caught with a dirty magazine or something, and quickly dropped my gown, pretending I hadn't seen anything. I vowed to myself that I wouldn't look again until I could do it the proper way, with the surgeon present, like it was supposed to be. But after the gown was covering it, I still looked and smiled to myself that there was indeed a mound there. I had cleavage. I had two uneven boobs, one with a pretty scary looking gash on it, but there were two.

Then things got difficult. Mid-afternoon, Michael got a call from his neighbor that his dog, Daisy, was lying still and not responding. Michael had planned to spend the whole day in the hospital, but now went to tend to his other girl. He kept me posted via text. Turns out she had had some seizures, possibly due to infection and fevers. Then the doctor thought it might be neurological, possibly a brain tumor. Getting these updates over text was surreal - there was no discernible emotion in them, and because I was so medicated, I couldn't generate any of my own. Later that afternoon he returned. Daisy was stable, he said, and still at the vet. He would stay with me until the vet closed. Everyone stayed with me until visiting hours were over, about 8pm. My parents went back to my aunt and uncle's house, where they are staying while they are here, and Michael returned to the vet. Shortly thereafter I got a text: "Vet doesn't think she'll make it through the night." My poor boy! I mean, poor Daisy of course, but my sweet Michael did not need this right now, when he was already mustering all he had to care for me! This is a man who grew up an only child and saw his dogs as his brothers and sisters, and now as his children. He needed Daisy to comfort him right now! Even through the meds, my heart ached for Michael... and now everyone had gone home and I was alone in the hospital.

To distract myself, I turned to my many emails from the day. Among them I found one from our mortgage originator. You may remember that we had found a house, had our offer accepted, had a successful inspection and were well on our way to home ownership. I had signed the mortgage application the day before, knowing there was just one outstanding document about my student loans which I would get to her as soon as possible. Now I received an email: "As we discussed, we are having trouble qualifying you for your mortgage due to your student loans." Huh?? Apparently there was some confusion. After consolidating my loans last summer, I was not required to make payments on them for the first year, so she had not included this in the calculation, but since I will begin making payments again in November, this does need to be included. How did this oversight happen? Suddenly we don't qualify for what we were told we would. I was furious, frantic. Will we lose the house? Will we lose the grant? This was the one piece of my perfectly laid out life plan that had hung on through all of this, and now it too seemed to be crumbling. And WHY would she write me this email the afternoon of my mastectomy?? She knew I had this surgery today, she knew I was emotional about it (I had fallen apart over the phone with her before), and she didn't even acknowledge in the email that she knew I was recovering or anything. Just straight into, "As you know, you don't qualify." NO I DID NOT KNOW!! I needed to talk to someone. I couldn't talk to Michael - he was already a wreck. My parents were likely exhausted. I forwarded the email to our real estate agent, also a friend, and she was helpful. I called my dad in tears and he said to go to sleep, there was nothing I could do right now. But how? I was so mad - I needed to rest! I needed to sleep! Why this?! 

At the urging of my parents, I called the nurse in and sobbed to her, and asked for something to help me sleep. "Saint Sendie" gave me some Xanax, the one drug I have actually taken before to help me sleep, but also helped with my heightened levels of anxiety. As she was getting me ready to sleep, we talked a bit. She talked about how her son had had cancer when he was two, and now was 15. She said life can certain be tough sometimes, but she added, "But we have this gracious God, who never promised to take away all those troubles, but promised to be with us through them." I said she just preached to me one of my favorite sermons. (Later, she preached another of my favorite sermons: "We are so broken, all of us, but we carry on with God and with each other, and the light shines through.") I was able to get some disjointed sleep that night. What a night.

The next morning I was awakened by a team of plastic surgeons, checking in on me. They were very perky and friendly. "Can you just lean forward?" "Can you pull your gown out here so I can take a look?" Easy for them to say! Saint Sendie stood by, looking concerned. They told me about my incision, about how it would heal... I don't really remember a word of it. After the left, my nurse swooped in and tended to me. "I love how they say, 'Just sit up,' like that is so easy to do after you've been cut open!" She said. She helped me get comfortable again, then straightened my quilt ("Such a beautiful quilt should be smooth and straight, so we can see it!"). Sweet Sendie.

Sometime that morning, I got another text from Michael: "I"m going to say goodbye to Daisy." He was able to go and be with her, scratch her ears and her nose, sing her a couple of her favorite songs, before being with her while they put her down. It was killing me that I couldn't be there with him, holding his hand. He needed me! And I was stuck in the hospital, barely able to move. What an injustice. My poor boy. By the time he got to the hospital, he looked okay, at least holding it together. He was being strong for me, but I knew he was hurting. Later, when we were alone, he was able to tell me a bit about how he was feeling. My heart hurts for him. :(

I grew progressively stronger through the day, and finally decided that I could go home after all. I was perky, felt more like myself. When they took out my IV, I knew I was set - going home! I spent the rest of the day on the couch, sort of watching TV, sort of dozing, sort of eating pizza. It's all pretty blurry. Yesterday I spent my first whole day at home, and it went all right. We have a race going to see which of my drains will finish draining first (it's neck and neck - just when you think Drain #1 is behind #2, it makes a comeback or #2 slacks off!). We have tried various concoctions to get my bodily functions back on track after pain meds and anesthesia, so far with not much success except that we have realized what does not work. I have gotten good use out of my vomit bucket, much to Klaus's interest. Because I know it weirds people out, I usually make a joke after all that hard earned food comes back up - I will spare you from these. We have learned that narcotics and my empty tummy do not get along. (When I called the hospital hotline to ask about this, the guy I talked to asked what procedure I'd had. "Mastectomy with implant reconstruction." He said, "Is that M-A-S-T-E-C-T-O-M-Y?" I chuckled. He said, "I'm sorry, I'm not familiar with the procedure." I said nothing, stunned. He must be kidding. "Is that spelling correct?" he asked again. "Yeah..." Had this guy not even turned on the news lately?? Thankfully, he connected me to a doctor who had heard of the procedure.)

And now Michael is back at work, and my parents are cleaning my house for me. Hooray! Michael has set up a hard drive full of TV and movies to keep me entertained. I'm breaking into that soon. Hopefully we'll figure out the mortgage stuff soon. Life could be worse, I suppose.

Signing off for now...

Angelina and Me: Mastectomy Day

It's done. I've been mastectomied. I am home, and I'm in some pain, I'm surrounded by my favorite people and an absolutely adorable and loving pooch, not to mention various pretty things and goodies. The windows are open and a lovely breeze is coming in. I just ventured my first effort, with the help of mom, into personal hygiene - which involved leaning over the edge of tub, some shampoo, and a short, unintentional water fight - and now that I have clean hair I feel like I am ready to write a blog about what has been an extremely emotional few days.

I decided, looking at myself in the mirror one last time on Tuesday, that while the drawings the plastic surgeon made did look like an owl, they also reminded me a little of war paint, like I had been painted like a wild animal to scare off anyone who might mess with me on my hunt. This pleased me, and seemed very appropriate. I liked how primal it felt. Today was my battle. Today, after much build-up, was the day of Johanna vs. Cancer, and Cancer was going down. And, I'll tell you a secret: some time ago I went shopping with some friends and bought what I thought was a ridiculous pair of underwear - leopard print with a hot pink lace band. Now, on this day that I would hunt down cancer and get rid of it once and for all, these were the perfect addition to my war outfit. With my war paint, my lacy animal print panties, and yes, my shiny gold faux snake skin ballet flats, who could possibly beat me?

Once we got to the hospital, things moved pretty quickly. Within a couple minutes they had me changed into a gown (and regrettably out of my gold shoes and war undies). My family was able to come be with me for a few minutes then, and with them my dear friend, colleague, and pastor Abby. We all chatted and joked for a while. Dr. Skinner came by and checked in. When it was time to go to pre-anesthesia, we all said a prayer together - all those wonderful people, mom, dad, Michael, Abby, holding hands praying aloud for me. And I cried. I wanted so badly to get through this day with no tears, to be strong from start to finish, to be confident. But my tears were not for fear, or for sadness. They just were. I was overwhelmed with the love. I was touched by the presence of all those people. I knew that at that moment, upstairs in the lobby, several of my parishioners had gathered and planned to pray for me throughout the surgery. All of these wonderful people, rallying around me - how could I not cry?

My mom accompanied me to pre-anesthesia - only one person allowed. Heart-wrenching to decide! Though Michael had been the one to accompany me for the previous two surgeries, and I know really wanted to be with me this time, too, he let my mom come with me. I know (and he knew) that meant the world to her, to be able to hold her little girl's hand for as long as possible. So back we went, and answer questions from the string of doctors that came though - residents, anesthesiologists, nurses, etc. That was when the plastic surgery resident mentioned what he'd heard on the news that morning: that Angelina Jolie had just "come out" about her prophylactic bilateral mastectomies! Wow. This was a heart wrenching decision for me to make, and I don't rely on the beauty of my body for my career. What a brave thing for her to do, so that she could tell her children that she wouldn't die young of cancer like their grandma had. Several people posted this story to my Facebook wall or emailed it to me throughout the day, and I understand there was also some push back from people and media about her doing this. I have not wanted to read about the push back. I will instead revel in her bravery, admire her for sharing her story and for her efforts to educate others about their options, and find some sense of purpose in the fact that it all transpired on the very day of my own mastectomy. I'd like to write her a letter and tell her so. Maybe I will. For now, I'll just tell myself that Angelina and I are making pro-active cancer treatment, even in the form of a body-mangling mastectomy, trendy. Health is cool! Honesty and courage are beautiful!

After a time in pre-anesthesia, mom went off to the waiting room and I went off to the OR. I had a chance to look around the OR for a while as they got ready - and it reminded me a little bit of that scene in Wizard of Oz when they're getting everyone dolled up to see the wizard. That made it seem much less threatening. Lion wanted courage (I got that), Scarecrow wanted a brain (covered), Tin Man wanted a heart (no lack there), and I wanted to be cancer free. Then I dropped into unconsciousness so they could make it so.

While my doctors, my war paint, and I fought my battle, my parents, fiance, colleagues, and parishioners prayed all around the hospital. Some of my parishioners, as I said, had gathered in the lobby, and every 10 minutes they read a Psalm and said a prayer. Psalms and prayers were printed on pink paper, tied with a pink ribbon. My parents and Michael all stopped by at different times. When my mom was there, she asked if they could repeat Psalm 139, which they had just done, because it is her favorite (mine too, turns out!). As they went around taking turns reading, my mom ended up with the line, "For it was you who formed my inward parts; you knit me together in my mother's womb." That God, certainly does have a way... (I showed Dr. Skinner later, when she came by for what she called a "social visit," what my parishioners had been doing, and she read it, the whole thing, and if I'm not mistaken, there was a tear in her eye as she read.)

The surgery went well. Dr. Skinner informed my loved ones that she had finished everything and it looked good. They only had to take two lymph nodes, and nothing about them looked suspicious or concerning. She also said, "You have a really neat daughter." (Mutual admiration society!) Dr. Langstein also came out after his part and reported that things had gone well, that my skin looked good and healthy, better than he would have anticipated on someone who had been radiated. The skin behaved so well, in fact, that they were able safely to inflate the implant about 80%. He said the hardest part was making the decisions - that I had done the most difficult work of all. But he was confident that this was the right decision, and hopeful that everything would turn out just as well as it could.

I will leave this here for now, because there is so much more to this story, and this is already so long! Stay tuned for the next installment soon!

Mastectomy Morning

Merry Cancer Free Day to me!

(Right, keep saying it and it will be true.)

No really, I'm trying to focus on the good. I got up a little earlier than I needed to (forgot to take the time for breakfast out of the equation), so I thought I'd write a quickie.

Slept okay. Didn't really get into a deep sleep (felt like I was thinking the whole time), but didn't toss and turn, so I guess I'll take it.

Took a long shower. Enjoyed the feeling of warm water on my chest, which I will no longer feel after today I guess. Took in what I am used to seeing when I look down. I realized again: I don't really want this boob anymore. It hurts to touch (scar tissue). It just hangs there like a guilty betrayer. What I realized I was saying goodbye to was the nipple. Yes, I could still get one reconstructed, but a reconstructed nipple is nowhere near what a real one is. It doesn't behave... at all really. Good or bad. It's just like a blank, lifeless thing that looks like something that was there once. I will miss the intrigue, if that doesn't sound too weird. I looked at the drawing the plastic surgeon made on me, and remembered how my nipple looked yesterday, as the pupil of the owl eye - today, after a warm sleep and a hot shower, it looked different than it did in the doctor's office. Nipples are weird, but they are definitely interesting, and I shall miss that.

I got out of the shower, put on a nice soft robe, combed my hair. Then I realized I wasn't wearing my engagement ring. I had taken it off the night before so I wouldn't forget. And with this, I almost lost it. The injustice! Not that I would lose my boob today, but that I would have such a beautiful ring and not be able to wear it for three days! How strange are the emotions that this is the loss that I felt more profoundly this morning.

Now I'm dressed. I'm wearing gold faux snake skin ballet flats, because who can be sad when you're wearing shiny gold shoes? I'm packed. I'll take my doggie out, and then Michael will take me to the hospital. And we'll do this thing.

Happy Cancer Free Day to me! *forced smile*

Mastectomy Eve

Contrary to what the title of this blog might indicate, Mastectomy Eve is not nearly as wonderful as other days that end with "Eve." Although, to be fair, it wasn't too bad. My parents have spent much of the day with me, and have been waiting on me hand and foot (while Michael has been trying to fit a week's worth of work into this one day, and care for his dog who suddenly is limping - poor girl!). My dad went to the grocery store and bought groceries for a delicious dinner of cranberry chicken breasts. Yes, we went there. (He bought four and made three, and said, "I'm going to put this chicken breast in the freezer... unless you think they might need it at the hospital tomorrow?" Har har. You can see where I got my sense of humor.) We had a lovely dinner together, complete with wine and bad jokes, and they even washed the dishes. Not a bad deal.

How am I doing? My mom kept asking me throughout the evening. My answer was consistently, "I'm really good at compartmentalizing." I feel like I should be a wreck. I'm not. I feel like I should be packing an overnight bag for the hospital. That sounds extremely boring and tedious. I have been anticipating this night, thinking about what I want to do, and now that it is here I can't think of a darn thing I want or need to do besides just sit here like a bump on a log. And to be honest, I think I deserve some bump on a log time. I have been pushing SO hard this past week. At work I've been trying to pull together everything for the next month of my churches' life, making sure people are in place to cover the things that need covering. I'm sure there is something I have missed. I've been calling doctors and getting things scheduled and going to appointments, and planning boob-themed parties. In addition, Michael and I put an offer on a house that was accepted (!), so we want to get all the next steps of that process going before I am unconscious and/or on heavy pain meds and unable to sign for important things. So after my pre-op, I hunted for some info on my student loans for my mortgage originator, and then after the special radioactive injection I had today, I went to the bank to sign the mortgage application. Push, push, push, and now all I want to do is sit here. I'm exhausted! I'm glad I get to sleep for most of tomorrow.

But really, I know I should be paying more attention to my emotions at this time, and letting myself feel what I need to feel. But... dare I say it... I think I might feel at peace with this. Especially after my appointment with the plastic surgeon today, I feel better about it. I'm ready. I can definitely see a possible breakdown in the hospital tomorrow, when reality comes crashing down on me in a way it is so far only been glimpsed. But I could also see going through this just fine, not shedding a tear. The resident at the plastic surgeon said some people get the first part of the anesthesia, the relaxing part, and get a little "drunk" (I suggested loopy, but he insisted on drunk). He said just like drunk people sometimes do, a lot of people lose control of their emotions and cry. (I asked if southern people get really thick accents at that point, like a southern boyfriend I once had, who got real southern when he drank. He didn't really have a good answer for that.) So maybe I will. Maybe I won't. I have imagined so many different ways that tomorrow could go, I feel like I'm prepared for anything. 

I had a friend tell me that in her prayers, she was telling God that I have enough character already. But apparently God didn't agree, because I do believe that this thing might give me even more. I don't like it, and I doubt I ever will. I won't come out at the other end "all better," but I might end up better in other ways, even if my man-made boob is inferior to the God-made one. But I am not a boob. (You may quote me.) I am much more than that, and all those other layers that make me who I am will be stronger, deeper, more colorful, more interesting, more seasoned, more compassionate, more loving, more understanding... more Johanna. 

The Lord almighty grant us a quiet night and peace at the last. Amen. 

(opening line of Compline liturgy)

Mouse cushion, owl eyes, and deflatable boobs

Today I had my pre-op with the plastic surgeon, and I came with a slew of questions. For only the second time in this whole ordeal, I went to this appointment on my own, but it was just fine. After firing all my questions at him, I felt better by the end, which is great! Just how you want to feel after seeing the doctor! I was assured many times over that I would fit into my wedding dress, which was a relief. I was told I could get my tattoo (AFTER everything is healed), which also made me happy, though I surprised the resident with my question! I said I didn't want a nipple reconstructed, but wanted a tattoo. He said, "Oh we do those too..." (you can get 3-D nipples tattooed, yes!) I said, "No, I don't want a nipple. A sunflower." He looked a little surprised, then smiled and suggested someone I could go to. Yay!

The resident described the procedure again, and told me when I could shower again (couple days) and when I could drive again (couple weeks). He went over the risks for me, and I had lots of questions about that. The surgeon had said that he would be able to see right away if my skin would tolerate the implant procedure. I asked, "What happens if he sees that I can't?" He said they would either not inflate me as much at the time of the surgery, or if the issue showed up later, they could deflate me to take the pressure off the skin (just take out some saline). (I hope you are still picturing this like very colorful balloons, perhaps with smiley faces on them. I am.) If scar tissue shows up so extremely that it can be seen on the outside, or deforms the breast, then when they go in to swap out the saline for silicone (which I plan to do in a few months), they can also just scrape away some of the scar tissue. Great! I'm a little higher risk, but he didn't seem very concerned, because again, with plastic surgery, "high risk" is simply a cosmetic dissatisfaction. It's not like my new breast will suddenly try to kill me (like my current breast!).

When the plastic surgeon came in, he again reassured me, and said, "Looking at all the information, this is definitely the best option." Feels good to hear the surgeon say that! Then he took a before shot of my torso, and had me stand on a stool while he drew on me where the incision will be. He drew a sort of owl shape around the nipple and explained that this way, the skin wouldn't pucker when he sewed it shut. He showed me - I can see what he means! He drew a line along where the natural breast hangs, so he can match that the best he can. Then he initialed it. I admit I took a picture later - it looks really cool, like an owl eye! He said bilateral patients really do look like they have an owl drawn on their chest - two eyes instead of two boobs.

I asked several times about the wedding dress. "I need to fit in my perfectly fitting dress on Aug 3!" I said. "My breast needs to be the same size!" I said smaller was okay, because I could always add an insert. But too big is not an option - the dress won't zip. He said if it is too big, we can always deflate it a little bit - that is the beauty of these expandable implants I'm getting. Later, as I described this to my mom, I had to laugh. I could go to David's Bridal and try on the same dress (which I didn't have to ahve tailored) and make sure it fits before I go home for the wedding. If my new breast is too big, I can go in and have the breast deflated! Wouldn't that make shopping easier? "Doctor, this shirt pulls a little on this button - can you deflate me?" "Doctor, can you help me fill out this blouse?" I'm living in the future, I tell you.

Before I left, I asked if I could see the implants. There was a whole box full of the silicone, and they let me touch them - they are so cool! 

Very boob-like, and would be a good stress ball! The resident showed how they would work well for a pad to rest your wrist on while you use a mouse at a computer. True! 

The saline one was a little trickier to get a grasp of because it wasn't actually filled with saline, but I could at least see what they are putting in me tomorrow. It's got a port that will be accessible for the filling/expanding.

It was good to be able to see all of that, and be able to visualize all this a bit better. I feel better, I do. I think this might just go okay after all. And if not, I think there might be a good solution that I can deal with. As good as a real boob? No. But again, this boob tried to kill me, so it can't be worse than that!

Bye-Bye Boobie: A Fond Farewell

This past Friday I had the much anticipated Bye-Bye Boobie party, and I must say, it was a blast. I love playing hostess, even though I'm not very good at remembering things like ice and forks until 10 minutes before the party starts. Luckily, I have kind, generous, gracious friends who don't mind. I bustled around all day cleaning my house - the first time in a long time, since I didn't really have time all during Lent, and then was diagnosed three days after Easter, so house-cleaning has been on an only-as-necessary basis. But now I went to town! And I played my boobie-playlist, full of songs of happiness, sadness, empowerment, and fun. I listened to it several times through. The whole process felt so good - as if by cleaning and putting away the physical grime and baggage, I was also cleaning up the emotional grime and baggage in my heart. I looked around at the cleanness afterward and just felt so GOOD.

I set up and decorated best I could. I had asked people to bring boob-themed food, and my contributions to the cause were mozzarella balls with cherry tomato nipples (with tomatoes and crackers), and gummy bears (which is also, you may remember, what they call the material used in silicone implants). I also put out what two friends had mailed me - buckeyes with chocolate nipples added, and homemade oreos, which are round, have two Os, and are cream-filled, just like boobs. (Those were from my friend Dorea, so we called them Doreos - thanks Kate!). I had just bought some nice silver platters at a yard sale ($15 bucks, baby!), so I put everything out on silver and crystal dishes - only the best for my boobie! - including the pink plates and napkins I'd bought. I put a sign on the front of the table that said, "Boob-a-licious!" I wrote a quote from St. Patrick's Breast Plate that seemed apt, and put it up.

I put out some flowers, including some in a boob vase that someone gave me, a friend of a friend I've never met but is an avid reader of this blog and a recent mastectomy/breast cancer survivor (you know who you are! Thanks - it was big hit!).

Then I set up my game: "Pin the Boob on the Survivor." You can buy these games for bachelorette parties and stuff, but it seemed a little more fun and innocent and a lot more hopeful for it to be me. So I made some card stock boobies (each a little different, just like in real life), printed a picture of my face, and drew a line drawing of my body with no boobs, and made a sign, and voila: party game!

When all was clean and set up, I pulled out my party dress - carefully chosen to make me feel very pretty and yes, show off a little of what I got while I got it. Once the dress was on, I thought I'd better do up the rest, so I worked on some make-up, much more than I usually wear - including, of course, some bright red lipstick. Then my hair. Then to top it all off, I broke out the costume jewelry - a rhinestone necklace and earrings to match. I thought about shoes, but then I thought, "It's my party, and I'll go barefoot if I want to." So there.

Then I sat down. All dolled up, clean apartment, but no one had arrived yet. Even though there was music playing, my memory of that moment was that it was so quiet. Just me, sitting there with the recognition of my reality. Ever the extrovert, I felt suddenly very uncomfortable being alone. I felt a little frantic - must have contact! And so I turned to my best processing tool in moments like these: this blog. And I wrote about some moments that were racing through my head during the quiet, and the previous days.

Mercifully, the doorbell range. My first guest! What fun it was for all those people to start coming through the door, each with something delightfully humorous in her hands. Many had never been to my apartment before, so I was glad to share this special place that has been such a haven of peace and calm for me these two years. First person brought wine and even some champagne (which will be drunk when I can drink again, post pain meds, to celebrate being cancer free - again!). The next person brought melon balls with berry nipples. The next, mixings for buttery nipples (butterscotch schnapps and Bailey's Irish Cream - one of my favorite drinks, as it turns out!). The next, two scooped out cantaloupe shells that remarkably resembled a cantaloupe bra, filled with melon balls and blueberries. Then, banana cake baked in boob-shaped cake pans. Finally, chocolate and vanilla boob lollypops. What - a - spread!

I was simply delighted, from the very get-go. All those wonderful people, all those hilarious foods and drinks, all those laughs! What a wonderful time! And everyone was so caring and loving that I didn't even feel like I had to flit around and be stressed about everyone having what they needed. People just did their thing, introduced themselves to each other (no one knew everyone who was there, so there was someone new for everyone!). A good balance of introverts and extroverts kept things lively without me having to do any of the work, but not so lively as to be overwhelming. We oooed and ahhed over the food, we shared some delightful boob and bra stories, we played my games... I also had Michael make a bunch of CDs of a condensed version of my boobie playlist, and I handed them out to people along with Sharpies "in various shades of boob" and had people decorate their own.

(Above - Kristen showing off how much her CD looks like a boob, and me telling a story about how once I wrote that red dress to a New Year's Party and when I raised my arm for whatever reason, I accidentally slipped out, and while I was talking a cute guy no less... and then another, very drunk guy came over and asked if he could kiss me at midnight. I said no.)

I also got a couple gifts, which I opened - some silly things to make me smile, some thoughtful things like tea that supports breast cancer research, one lovely top that is loose and flowy and can be worn over bulky drains. I showed off the special mastectomy garments I had purchased that day. I got a false breast from a friend for whom that particular one didn't work, which I of course promptly wore as a hat.

(I don't know why I think putting things on my head like a hat is a good idea, but you'd be surprised how frequently I do this.)

I worried a little bit when I planned this party that I might have a hard time getting through it, but it was honestly a wonderful time, and felt like a very worthy farewell for a lifelong friend. I felt very surrounded in love and warm, wonderful, woman thoughts (and also some from Michael and Klaus - they were the only boys invited). I'm really glad I did it. I would recommend it to anyone with a sense of humor! Thank you to all who participated.