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.
