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.

 

So much depends upon...

so much depends 

upon

a red wheel

barrow

glazed with rain

water

beside the white

chickens

No, I promise I haven't lost it, but this poem by William Carlos Williams, "The Red Wheelbarrow", comes to mind often these days. Our 10th grade English class had to memorize it, our first of many. Mr. Woods would write the poem of the week on the board on Monday and come Friday we were responsible for writing it down for him at the start of class. Inevitably in the study hall before English, my friend Greg would look me full in the face and ask, "do you know your poem?" Often this prompted panic. 

Bless sweet Greg, he wasn't even in my class, but he would then have me write it again and again while he checked it against the original. After the bell, I'd scoot into English and regurgitate what I'd just crammed. It almost always worked, but poetry is sneaky and some of them have wormed their way into longer term storage in my head, like parts from "The Emperor of Ice-Cream" by Wallace Stevens or "The Bean Eaters" by Gwendolyn Brooks. Don't despair, those of you who fear poetry in its many forms; that's not what this post is about. But the first line rings true in real life when you are worrying about or fretting over or trying to plan for XYZ but the people involved in your life are still squabbling about what happened (or if something happened a certain way) all the way back at PQR. For those times you don't want to be WAITING because you want to be DOING, when so much depends upon.... whatever... THAT is how this post rolls. Right now, my life is a big if/then equation and we all know how much I avoid math. So much depends upon... 

the undetermined.

Part of the uncertainty is, "should I get a port? Am I going to need chemo?" The answer appears to be, "let's see what the lymph nodes say." If the lymph nodes have gotten involved, (and I can hear my Nana cautioning me to "not get involved" in something, for some reason), then I would need a port which they want on my left side this time, so I'll have matching scars. Just kidding. It's so it'd be out of the way of the stuff that HAS to happen on the right side. They also have a good idea of the chemo and hormone drugs they'd be using. It sounds like it's 4 sessions, every other week, of two unpronounceable chemo drugs, followed by 12 weekly sessions of Taxol. Then there'd be another pill for 5+ years, and the probability of getting my ovaries and/or tubes out. If chemo, then no hair again, which is perfectly fine as it streamlines my morning routine. My only lament would be, "crud, look at all this hair product going to waste... heeeeeeyyyyy, Thing Twoooo..."

A worried part of my brain whispers, "you're older now- this will be harder." A belligerent part of my brain snaps, "you're stronger now- this will be fine." A desperately-clutching-for-solid-ground part of my brain reminds, "we don't even know that there's lymph node involvement yet so all of this might be a moot point!*" At this point, my bum sighs in relief because I really do not look forward to potentially months in the bathroom. If chemo, then buy Imodium stock. Good thing we have plenty of toilet paper.

*Apparently there's a discrepancy about lymph nodes. My mastectomy surgeon was adamant that he didn't remove any. The pathology was read as 1 of 3 removed were cancerous. There's been discussion about was the "1 of 3" supposed to read something different. My oncologist says they're tiny and maybe he did remove one/some. At this point I don't know if we'll ever know, so that's a crux for all this. We DON'T know if there is/was lymph node involvement and so much depends upon lymph node involvement!

Regardless, surgery happens mid-September so I have the rest of this summer and back-to-school to continue to get stronger, to stay healthy, to get my ducks in a row, because surgery entails, guess what, more if-thens:

Surgery will definitely be 1.) tumor removal. A few hours before that happens, Dr A will be injecting a radioactive, blue dye into the tumor area and another spot somewhere in my breast tissue (that's called dual injection) so that the dye can be absorbed into the lymph system and light it up. This freaks me out for two reasons. One, very few people are allergic to the dye, and there's no way to predict who will be, but if I have a bad reaction they abort the whole thing and that's after waiting at least 6 weeks for the surgeons involved to have their schedules align for this. Two, she says these injections feel like angry hornets, and you are awake for them because it takes an hour or two from what I've read for that dye to be taken up to be seen effectively and they don't want you sedated all that time. Even if they numb the skin, the injection goes in, and we all know how super I do with needles. I hope they can restrain me so I don't come up swinging! Poor doctor. I hope she knows what she's signing up for.

So once I'm lit up, as opposed to just being lit, I guess, they'll put me under, she will do 1.) the tumor removal and 2.) what she calls lymph node mapping. She doesn't hold out a lot of hope for the mapping part of the procedure as it doesn't usually work well on post-mastectomy patients- the lymph nodes might have gotten scooped out during the breast removal, or damaged to the point that they don't take up the dye and therefore are hard/impossible to find, and so forth. She is willing to try and since she's at a teaching hospital, I figure we should go for it. Especially because this is THE PLAN- this is what we're praying for: 

-The dye is going to be fine, no allergy, no reaction.

-The sentinel lymph nodes will be present and accounted for. There could be up to 4 sentinels. They will all light up and be removed easily.

-The pathologist who will be right there to check them immediately (since I'm a recurrence** case, I have that benefit) will see that they are clear with no evidence of any cancer. Naked, in other words. 

**There's even some discrepancy here. We asked if this is old cancer since it's the Her2/neu- part of the tumor instead of the Her2/neu+ that it was previously OR if this is a new tumor. Nobody knows.

At that point, if those three things happen, then Dr A can close me up and send me on my way. That is Plan A. That is the only plan. I don't even want to speak the rest out there lest the universe get any ideas. THAT IS WHAT IS HAPPENING. This is THE PLAN. 

If those 3-4 sentinels can't be found (and there's been a lot of joking about "naked sentinels") then Dr A will do a lymph node dissection, removing 2/3 of the nodes on my right side. Messing with any of them increases my chance of getting lymphdema, which is a life-long battle with fluid accumulation. Your lymph system is like your sewer system- they clean you up and get rid of toxins and all that jazz. If they all go missing during surgery or whatever, then you risk buildup of fluid and all the stuff in it which causes swelling, increases risk of infection, and all kinds of fun and games. So it's a "we don't want this" thing. To take out a bunch of your clean-up crew is not ideal, but getting lymphdema would be worse. Which is why the doctors on my team would then want me to undergo a pLVB. That's short not for the Pennsylvania Liquor Control Board, but prophylactic Lymphovenous Bypass. The plastic surgeon who's been waiting on deck now steps in to take the cut/blocked/stopped lymph vessels and reroutes them into veins. This can take awhile as he has to find suitable veins and match them with the lymph vessels. More dye is involved as well, from what I understand, but I will be mercifully under at that point and won't care that they're injecting it into the webbing between my fingers so that it can trace up my arm. To ballpark it, Dr A's part of surgery could take 1-2 hours and the plastic surgeon could be 2-3 additional hours. I'd be in compression boots on the table and everything would be slowed down because of the anesthesia (WOOHOO! I SPELLED IT RIGHT FIRST TRY; I NEVER GET THAT RIGHT, YOU GUYS!) They'd be watching me extra closely for potential blood clots, DVT, etc, which are always surgery risks anyway but they increase the longer you're on the table. 

Here's the kicker. The bypass part doesn't even always work. There's no way to predict who will get lymphdema. The plastic surgeon told us that "sometimes you remove one sentinel lymph node and that person gets it. Sometimes you remove a bunch of them and that person doesn't. There's no way to know. You have a great BMI and are active. Both of those are pluses. But you had radiation, and that's a strike against." With the removal of 2/3 of them on one side... I don't even want to think about it. 

A chipper part of my brain pipes up, "but you had a bilateral mastectomy which is a way bigger surgery and have had zero issues for 5 years, so we're good!" And the crabby part of my brain grumps, "yeah, but supposedly no lymph nodes were removed so who knows?" I am living the "Inside Out" movies, I'm telling you. 

I'll have at least a surgical drain, my favorite. Supposedly that comes out around 2 weeks later. I'll only be allowed to raise my arm at a 45 degree angle at first if the pLVB happens, and 90 degree if doesn't. Not to lift anything over 3 pounds on that side, I think, for pLVB and slightly heavier if not. If the lymph nodes are involved and come out, then I'd have about a month to heal before they let me start chemo. The thinking there is that they want all the healing teams in your body to work solely on the surgical site versus being spread out hither and yon dealing with chemo effects. in addition to a surgical wound. Makes sense. Plus, (because you bet I asked if I could start chemo and get that first section done before surgery) you have the surgery first so that the pathology can indicate what chemo doses are needed even though my doc already knows what specific drugs she'd prescribe. If I did chemo first, that could mess with size or whatever. It's enough for me to know that it could goof that part up, so no, I must wait. 

And breathe. 

And exhale. And breathe.

And live my life.

And think up wild, improbably hilarious stories to tell when people ask about my scars.

And not obsess about a possible additional surgery which I'd already be asleep for and wouldn't know happened until I woke up in Recovery anyway. You can bet as soon as I'm lucid and they tell me I had clear lymph nodes that you'll hear a "YESSSSS!" as I pump my left fist in the air! That's likely after I try it with my right side and can't lift it, haha.

So, you have your homework, praying and spreading the word to pray for:

1.) No dye allergy/reaction

2) Lit up sentinels who are easily found & easily removed by my delightedly surprised Dr A

3.) Sentinels then declared "naked and clear" by the astounded pathologist so I get sewn up and kicked out because I'm now NED- no evidence of disease!

That's THE PLAN. You may be excused with much gratitude!

I'll leave you with another lovely poem from 10th grade, "The World Is Not A Pleasant Place To Be" by Nikki Giovanni, because it is thanks to your intercession, my tribe, and God's grace that is getting me through all of this nuttiness!

The world is not a pleasant place

to be without

someone to hold and be held by.

A river would stop 

its flow if only

a stream were there

to receive it.

An ocean would never laugh 

if clouds weren't there

to kiss her tears.

The world is

not a pleasant place to be without

someone.