A venting/processing post- *reader beware*

Here we are, into our 27th year of marriage, and life just keeps getting nuttier. 

I know it's been awhile since I've blogged. Sorry about that. 

I'm a little all over the place. 

And I haven't had lunch yet and it's almost 2:30.

Mentally, I feel like I have most of my marbles, thanks to my Lisa, who gave me a jar of them, haha! Now if my ducks would keep to their row and quit meandering about...

Emotionally, it was a hard week. I didn't sleep great for whatever reason, and one of the companies which supplies the meds I'll be on for years was being.... difficult?

I feel like here is where I relay the story about when my younger brother went off to summer camp. Bart Simpson had kind of wowed us all with popularizing, "that sucks, man!" We weren't supposed to say it when we were home. But my brother's counselor announced, "we will not be saying that... we will instead say, "that is less than desirable" when we want to say, "that sucks."

I can't tell you how often I've said "this is less than desirable" this week, along with tears of rage and frustration, and "why can't things and people just DO THEIR JOBS?!"

Physically, oh boy. Do you really want to know?

In November, I noticed my right arm was feeling tighter than it had been. I had a PT appointment in which they took measurements, but they usually take three and could only take two that day because one of their measuring machines was down. Apparently everyone's were, as they'd just been updated and then all decided they weren't working. Nothing like that ever happens to any devices anywhere, right? Ha.

I'd been operating for a few months, I think, on the "wear your compression sleeve for heavy household chores and exercise." And I did. But now I felt like I was needing to wear it daily. For those of you who don't know what that feeling is, the best I can describe it is that it feels as though I'm leaning my elbow into the padding of a communion rail or confession/kneeler pad that some churches flip down from the pew ahead of yours. There's fluid buildup so my arm feels squishy yet tight to the touch at the same time. It's weird. One of the lymphedema signs I was to watch out for was indents that didn't disappear quickly. 

So my measurement numbers were a LITTLE up that day in November, I've stretched out my second compression sleeve because I faithfully wore my first one all summer as required (with much grumbling, you can believe; my tanlines were "less than desirable!")

I start local PT next week and see the big city PT crew again in two weeks. But I'm getting ahead of the story.

Yesterday, I drove to the big city for a meeting with the plastic surgeon who was part of my team who did the pLVB procedure which is a bypass where they route the severed lymph vessels straight into veins to help with drainage. The hope was that the procedure would prevent what we are seeing now. 

So, when your plastics doc looks at your body with a grimace and sighs, "oh God, that's horrible," then a lot of things go through my mind.

In no particular order:

YAY! It's not my imagination!

Good, that's a real reaction and now we can talk about it.

Hmm, it must be worse than I thought. 

Maybe he can help with my neck, too. 

There were other things, but what's rattling around my head in that moment is less important than what started being discussed.

I'd seen my oncologist the previous day and she had only good things to say. Numbers were excellent. I'm cancer-free. These appointments for everything will start to dwindle down as I start living my life as someone who is cancer-free! Yippie!

So the plastics doc and his PA start brainstorming right away. She's typing madly, coordinating teams to figure out what tests need done, starting with a CT scan, to see where things are breaking down. Their immediate feeling is that there's so much damaged tissue near my armpit between being radiated twice and scar tissue/cording that there's the possibility of a vascular issue in that area. Maybe the lymph vessels are backed up because a vein can't drain. They want to start testing to see what's what.

The PA mentioned injecting dye into my hand to then see how it is pulled back up by the veins so that they could find where the dam is broken, so to speak. I think that's a neat idea! They started tossing out procedure ideas including taking healthy, unradiated tissue from my back and transplanting it near my armpit because they will need healthy tissue to work with. There will also be wraps, pumps, other compression garments, etc, to trial to see what will fit my life. 

They're going to discuss me at their next panel which they hold once a month, like the tumor board where THEY used to talk about me, and we've already arranged the CT scan for the day before the panel so they'll have all the recent numbers for their meeting. Another PT appointment will also be that day, so they can't get any fresher measurements than that!

I told that sweet man of mine that I refuse to get fussed about all this before their hold their meeting. Someone on that panel might interject with a "hey! I just saw a study on ______ and what if we tried _____!?" The PA said she has an idea involving several steps that normally don't go together so she was processing how to enter them into the system to get the teams to work together when there isn't a set protocol yet, so to speak.

Was any of that the news I wanted? No. Is it less than desirable? Yes. Is it my life now? Yes. It'll be a chronic thing to be managed from here on out. 

Am I furious that yet again a summer will go by where I'll most likely be told to stay out of water while I heal and protect myself from the sun? You bet! However, I have a goal to be healthy for Christmas in July and my 50.5 party so already I'm looking forward to fun things and recovery milestones. 

Yes, there was some piratey talk, and there will most likely be more. But even in this, I can see His faithfulness to me. It was the first time I've driven myself to and from the big city, and I made it both ways safely. In February. 

The kids at home had dentist appointments right after school and then Thing Three had pep band to get to straight from there. They made all their destinations on time and safely and eventually all of us were home again. Even my sweet hubby made it from out of town, parked RIGHT beside me for my appointment, and caravanned home.

I sleep in a bed off the ground without mosquito nets in a room designated for sleeping without our children and with zero livestock accompanying us. How many blessings is that right there? I flip a switch and a light shines. I open a cold box and there's food inside. Miracles abound. Every single day. 

Sometimes your meds even show up when you need them. That's a post for another day.

Will this be hard and frustrating? Yeah, probably. Will I cry some more and have hard days? Most definitely. Is this how I pictured my body looking for the rest of my life? Not even close. 

But I do still have two arms that work for hugs. 

I'm cancer free. 

I'm better than a survivor.

I'm a victor.

 

Intentioned snips and random snippets

The irony was not lost on me as I meandered through Walmart hunting front-closure bras for after a double mastectomy. I kept giggling wryly to Dada about needing bras for when I wouldn't have any boobs! Something's gotta hold all those bandages together before you can put clothes over them. How crazy life is.

                                     *****

Maybe breast cancer was one of God's ways to get an outlet to those of you whose love language is Gifts. Holy smokes, I continue to be blown away at the gifts that arrive. Currently I have three bouquets of sunny, cheerful flowers spread through the downstairs. Two friends made dinner for last night on top of an already stuffed fridge and freezer. My stack of cards overfloweth. My phone has been blowing up with texts...

I have three containers of chocolate chip cookies! If that isn't love for this Cookie Monster, I dunno what is. I am humbled by all of you and the ways that you care!

                                    *****

Tuesday was my follow up appointment with my surgeon. He asked me how I felt I was doing and looked, at least to me, pretty surprised when I chirped, "good!" I confessed that I hadn't believed him when he'd informed me that a bilateral mastectomy would hurt less than something done laparoscopically, but he'd been right. Everything I'd heard and read told me to "stay ahead of the pain" so I followed directions and took pain meds alternating with Advil accordingly. For four days. And then I didn't take anything at all. Because nothing hurt! Some friends are saying I have a high pain tolerance, which could be true, I suppose. Every body is different. I have no idea how that could be measured. What still strikes me as funny is that the sensation I feel most is the prickles that are just like when your breastmilk lets down. I have areas of mostly numbness, but the feelings that I do feel cracks me up. There's nothing to let down to anywhere else! 

Anyway. 

He looked over my recorded drain fluid numbers and decided the drains could come out. WOOHOO! For those of you who have never had a surgical drain, let me tell you what they do and why it's good fabulous to get them out. Fluid can build up after surgery and has no place to go without help. My cancer books said essentially "think 'turkey baster'", which didn't give me the correct mental picture, so I'll offer a little better version. Think 'small, turkey baster with tubes that get sutured into your body and dangle loosely in an attempt to be yanked at every opportunity" because that is closer to what they feel like. So you have these tubes coming out of you like the Borg and if you're smart, you take the advice about the $1.50 Lowe's nail apron and snuggle your drains down into the pockets. The nail apron also had long enough ties that I could cross them behind my back and tie a tiny bow in front of me, which made sleeping that much nicer as I didn't have to channel Samwise Gamgee: no matter how I lay there's a dirty great root sticking into my back...

A sweet person I met online even made a beautiful apron for my drains which she then mailed to me. I got to wear it for a full 24 hours before my drains came out. You guys, there is no end to the creativity and thoughtfulness out there. A total stranger made me something lovely to make something important and yet unpleasant somehow better. Find your Cranny of Creativity and use that as your ministry to others. I already said some of you are so good with the gifts. Some of you are amazing with the foods. Most of you are brilliant at texts. All of you are capable of great love even in tiny but not overlooked or under appreciated ways!

Stepping off my soapbox. So you live in dread of accidentally getting a drain hooked on something or reaching "wrong" and pulling these suckers out, right? 

Well.

Chalk this up under Things I Should Have Figured Out Had I Really Thought About Them: since those babies are sutured into you, that means there's some snipping involved in releasing them so that they can then be pulled out. My sweet surgeon did mutter something to himself about "that's in there tighter than I intended" whilst working on my right side, followed by a moment of sharpish digging. Then he looked at me and intoned, "now, these drains are a little wider on the inside than they are on the part where you see them, so ..." and I forget the rest of what he said because my brain was processing it and got as far as, "DUH, you dummy (meaning me, not him)" and then "so I guess I didn't need to worry about accidentally yanking them out" and "wait, that means it is going to hurt" all pretty much at the same time. I think I asked if I should take a deep breath (that's what they have me do as they access my port during IV treatments) and I'm fairly certain he said, "whatever works." So I suck in a big breath as he counts to three and what follows truly didn't hurt so much as feel weird, but the sound was exactly like sucking up the bottom of a milkshake with a straw. Sorry to those of you reading this in a public place if that made you laugh out loud and people are looking at you oddly. 

He heads over to do the left side and I frantically let Dada know I could use some cold, wet paper towels on the back of my neck STAT. Not so much the pull or the sound, but definitely the snippage. Is that a word? It is now. My stomach rumbled uncertainly and I felt like someone had cranked up the thermostat. The surgeon looked at me with his eyebrows up, I looked back from under one of my damp paper towels (because Dada is good at this game and I had one on my forehead, too), squeaked "good to go", breathed in, he pulled, and out came the second one. 

He gave me a few minutes to lie there with my knees up as he taped gauze over my drain-free holes which will seal themselves shut- all of this is so amazing to me- and asked if I was okay to sit up. I was, so I did, he said to keep doing what we were doing as everything looked like it was healing really well, and then he said that if I experienced any fluid buildup it would have that waterbed feeling. They can take care of that right there in the office via a needle inserted through my incision(s) which is/are numb anyway and suction whatever fluid out. Sorry, Daddeeeeee and anyone else who would have appreciated less is more...

He said to give it a few days for the drain holes to heal up before starting my stretching exercises which are apparently remarkably similar to exercises encouraged post-rotator cuff surgery. I teased that they probably are the same and that someone just changed the title on the booklet. He reminded us that compression is important so that the skin adheres well but to not be doing a ton of stuff up over my head quite yet as that would affect the pectoral muscles. I don't want to end up with T-Rex arms, but he said to wait a few days, not to not do that at all. He even said I don't need any more gauze/bandages over the incisions but to stick with the ACE bandage or compression shirts. 

Otherwise he will check on me in six months!

And that was that! So thank you all for the continued prayers, especially for those of you who prayed that the drains could come out! It is so nice to be able to lie on my sides instead of only my back. I slept in the recliner for about a week and it's so nice to be back in my comfy bed. 

My chest is tightly wrapped and I've been making comments about corsets and stays to Dada, who has been grinning while wrapping me. Yet another Thing I Should Have Figured Out Had I Really Thought About It is that with my chest wrapped so tightly, it looks like my belly is popping straight out. Stop right there, those of you saying, "what belly?" Just quit it. I am telling you that yes, I have one, and yes, it is out there, looking 4 months pregnant. This is not just me. This is lots of online ladies who've gone through this. Some of them have freaked out to husbands along the lines of "did they put my boobs in my belly!?" to which husbands standing out of strangling distance have quipped, "no, it always looked like that but you couldn't tell because your boobs were in the way." I'm serious. The Internet says so. It must be true. Sorry to those of you still reading in a public place. Keep the giggling outbursts to a minimum. People are going to think something is wrong with you. 

If you see me in one of Dada's button downs because I still can't do over the head shirts and I only own two button downs of my own, please don't ask when I'm due. Unless you're standing out of arm's reach. Best still watch out, though. As someone I love pointed out, I'm more aerodynamic now so that means I'm pretty fast. ;)