And so it goes

 I still don't really want to talk about this and it might be because, as a bestie said recently, "I really just hate thinking about all of this stuff and putting in words makes it real."

I so get that.

However, or nevertheless, whether I talk about it or not isn't going to change the fact that I have lymphedema. That's just a scary word that means my lymph system isn't draining super efficiently and so I'm taking on fluid. It's only in my right arm down to midway between my elbow and wrist but that is aggravating because it is DESPITE:

-wearing the compression sleeve this summer, even on vacation.

-staying active

-doing my stretching and physical therapy exercises

-sleeping with it elevated

-still wearing my SECOND compression sleeve daily

Wah. I just want to wallow a bit, but then I remember that hey, my arm still works (mostly) and I can get the mobility back (I hope) and probably if I stop doing what I'm doing it'll get worse so staying busy and fighting through yoga is what I'll do until I'm told otherwise.

I knew but had forgotten that the main lymphedema risk window is up to two years out from surgery and since my lymph node removal surgery was last fall, I'm well within that range. I just had hoped- like I'd hoped the surgeon wouldn't HAVE to take them out in the first place- that lymphedema wouldn't happen to me, but here we are. 

It's not painful per se but it is frustrating that my right arm looks like a sausage and that I can't reach equally far with both arms and that it's exacerbating my right neck/shoulder tightness. I can still do an impressive amount of flexibility, but I can tell how much range of motion I've lost and it makes me furious. 

I don't know if the two months of no lifting/exercising while I recovered from the complete hysterectomy is what set me back or if it is simply that I'm in that two year window or if it's because of the radiation treatment for the second time. I suppose it could be the trifecta of all of that, and perhaps more I'm not thinking of. It stinks that it's my right arm, which is naturally my dominant arm. Of course it would be my "good" arm! Ugh. 

Whatever. I have two arms and two legs that work so I'm going to shut it and move on. If that means I have to go shopping because I can't fit a lot of my sleeves over my swollen arm and compression sleeve, then so be it. If it means I'll need friends and family to right my sleeves and seams when I get where I'm going, then that's what'll happen. If I get my arms stuck in a shirt over my head, well, I guess I'll cry and then laugh and then figure it out. 

Otherwise, and I hate to speak it into the universe but here goes, I'm on my 6th month of my 3 year meds and so far so good. I'm luckily avoiding school germs thus far, so here's hoping that continues! Drink lots of water, wash your hands, and stay warm, my friends!

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.

Which end is up?

The short version of this post is this: further testing still required, which we already have scheduled so that's not what was surprising to us. There. You may be excused.

For those of you who like the nitty gritty of the details, have we got a story for you.

We stayed with friends Sunday night rather than attempt that drive first thing through Monday morning rush hour in the city. No issues there: found the place amidst all the other hospitals in town, got a parking place, got checked in, all no trouble. 

We met some of the nurses, one of the main doctor's partners, two of the med students, two nurse practitioners, and the main reason we're there, Dr. A. Everyone was helpful, kind, knowledgeable; I felt like while it's an overwhelmingly big complex that those I interacted with knew what they were doing and who needed to speak with whom and it felt like "well-oiled machine" though not in a bad way. I appreciated that people know what they're doing in part of a much larger whole and can be human and compassionate at the same time.

Apparently I've gone from being medically boring aside from cancer to... less so. As ever, cancer throws quite the learning curve. Part of what we learned yesterday is that some things diagnostically-speaking may be called something specific but it may still involve a lot of gray area. I'd never thought about that before because it was above my pay grade, haha. So when I was informed six years ago that I was "triple positive" I took their word for it. That meant my cancer was estrogen positive, progesterone positive, and HER2 positive. Fine with me- apparently that's the "good" kind to have because with the HER2 positive there's a lot more tools used against it. For example, I had Herceptin and Perjeta infusions through my port for a year and those were hormone drugs to deal with the HER2+. Then I followed that with a year of a drug called Nerlynx- those little blue pills that you need the other little blue pills for. In other words, as your body adjusts to the drug you go through stock in Imodium. 

And it worked. (Not just the Imodium, though that's a life saver!) I've been NED which stands for No Evidence of Disease since September 2018 until this lump I found this spring.

The initial thought was that this lump is a lymph node that held onto some yucky stuff all this time. Dr A, who is a breast cancer specialist and geneticist, had me do another ultrasound yesterday so they could further examine this lump because she feels based on the location that it could be a tumor in actual breast tissue versus a lymph node. 

You're thinking, "wait, she had a double mastectomy- how does she have any breast tissue left?" Good thinking! However, there's no real "boob stops here" line during surgery; the surgeon scoops as much out as they can whilst preserving your chest wall muscle and muscle around your underarms to preserve your range of motion and all that. I'd imagine it's a fine line to get as much out of there without causing damage to stuff you still need! If we were all paper dolls, it'd be easy to just cut along the dotted line and stop. Long story short, there's some breast tissue left (called auxillary tail, haha) and here's the new wrinkle:

I am now HER2 negative.

Wait, what?! How does THAT happen? We hadn't even heard those results until yesterday; we knew the estrogen and progesterone parts were still very high and therefore positive. So we learned a new thing:

Not ALL of a tumor will necessarily be positive or negative. Sometimes (or maybe even always for all I know) they have some of both, but whoever is examining them will have to make the declaration of it being more one way or the other. Huh. So the HER2+ stuff did get beaten up by all those meds and now we are left with the HER2- stuff if I understand what's going on. Thank goodness Dada takes good notes because I forgot this part twice already; it was indeterminant through the first type of check but confirmed as HER2- on a FISH test. Gotta be honest- I have zero idea what that means and have never heard of it so I'm going with the assumption that it's a kind of tumor mapping test. I haven't Googled that yet. If someone could fill us in, go for it in the comments section. 

This could be a really good thing, because it could mean that lymph nodes were not affected and THAT is another whole story. 

Grab a snack.

Ahh, lymph nodes. Yet another part of your body that you don't even think about so long as they're doing their job. They're like your spleen, just quietly cleaning up messes and doing their thing. Totally taken for granted. Until...

So there had been a discrepancy six years ago and even though I was there, I'm still not sure if I have all this right. My surgeon said he didn't remove any during the mastectomy, and remember, it's not like they're bright blue and screaming, "I belong here- don't take me!" I'm sure they probably blend in and lay low, haha. My oncologist said they're tiny and he might have and that according to the pathologist that one of three had been cancerous. I think I got that right.  That is causing issues in nailing down what's going on right now; were lymph nodes removed and were they cancerous? Dr A feels that based on all the pathology notes that the biopsy showed cancer but no lymph tissue. 

The plan as of yesterday is to continue with the back to back MRIs I have next week for the spot on my spine and the spot in my abdominal adrenal(s). For some reason, the PET scan report made it to Dr A but not the imaging, so when we asked to see it she couldn't show us because SHE hadn't seen it. She feels we need to make sure that nothing has spread before moving forward. Fair enough. 

If nothing has spread and those two spots are just weirdos trying for attention (they could be inflammation or something because things other than cancer shows up on PET scans. For instance, your brain is always bright on the scan, but areas of high metabolic something or other show up bright so that's why it's easier to spot tumors, inflammation, things like that) then she will schedule surgery to remove the troublemaker in my leftover breast tissue. While she's in there, she's going to try to attempt to do lymph node mapping to make sure they're behaving and weren't affected ("attempt" because it's not usually done post-mastectomy). That means she will inject blue dye and a radioisotope and see what's going on with them. If they're up to no good, out they'll come. I think I got that right. But that opens up potential for lymphedema down the road which is a can of worms I'm not opening today. I don't even want to know anything more other than I don't want it. Again, the comments section is open. 

So you guys, now I'm interesting enough that she's taking my case before her tumor board which meets on Thursday evenings. You can't see me, but I'm beaming while holding my imaginary suspenders even as I roll my eyes and laugh at myself. She was saying that what I'm experiencing doesn't usually happen. There was so much information as I sat there in my pink hospital gown I didn't even get to ask "which part?" She also has me set up for a baseline plastic surgery consult* and a physical therapy evaluation already! This lady has got a plan. As I told my brother, "I think she's the kind who isn't afraid to break everything down to make sure it's built back up right!" Again, I'm in really good hands.  

Yes, we walked out of there with more questions and our brains felt rather fizzy with information and names to attempt to keep straight (which will be my job- Dada can be in charge of the technical side of things) and now we have what feels like an ever-extending calendar of appointments. I heard someone from church going through some procedures of his own mention, "it's a season" and I thought that was an excellent reminder that I'd completely forgotten. The first time around I was determined that it would just be a season, not a permanent "forever". This time...

A girlfriend asked how I was really doing and I told her that I feel hormonal. I'm a cloudburst of tears one minute, then I'm fine awhile, then I'm so stinkin' MAD that this is all happening again and taking away from my summer and threatening to spill over into fall or further, then I'm fine and can see all the silver linings and then I get scared about that stupid spot on my spine of all places (because breast cancer can and does go into bones) and then I'm fine and then later I'll cry again out of rage and frustration. Grrrr. I know I said the first time around that chemo is so similar to pregnancy in a lot of ways, but man, maybe cancer in general is because I am ALL over the place emotionally. And if a needle is incoming, then just rachet all that up exponentially, haha! Yoi. 

I've decided porcupines and hedgehogs are animals who were previously people who had a bunch of needles stuck into them and now they're sticking out instead! Hey, you have a lot of time on your hands while you're laying half naked on an ultrasound table or in an MRI machine. Most of those places don't have stickers or anything interesting to look at on the ceiling so your imagination can be your best friend. 

Some of you have asked, "how can I help?" For now, pray that it IS just a single, solitary, easily removable tumor that she can scrape out with no spread so no need for chemo and all that jazz. Thanks for those of you who text/ send cards/ call/ send fun mail/ offer meals/ have us sleep over and all that all of you do. Blue ribbon tribe, no contest!

* I have some thoughts about the plastic surgery consult but I don't want to speak it into the universe before I've talked to anyone official. I don't want to jinx things. We can circle back to that in the future.

The part of the Pincushion will be played by…

 Yours truly, apparently.

*You may skip this post if you'd rather have my version of puppies and kittens, AKA graduation and vacation posts, instead of posts involving breast cancer. You're allowed. No hard feelings. I get it! Read on if you'd like. You're always welcome to stick around or to skip out.*

*Also, this one is lengthy. Grab a snack.*

So I finished my five years of Tamoxifen on Groundhog Day this year. I had a checkup later that month. My blood work and my physical exam were fine. Sometime after that, I felt a lump in what is left of my right side, near my armpit. I started running on the treadmill in April and know that sometimes your lymph nodes can get outta whack when you do hard exercise. Well, running is hard for me- I don't hit a good stride for what feels like forever, and the longest I've ever run continuously is about a mile and a half. Since I have two friends and had an uncle who have all done marathons, which I am NOT aspiring to by any means, a mile and a half feels puny. Still, I suppose that's from Camp Lambec to Peggy Gray Candies, so there's that. Go me!

Anyway, the running in addition to the good exam and consistently "perfect" blood draw numbers for the last five years had me keeping an eye on the lump. I told my oncologist at my May appointment. She felt it and said it warranted an ultrasound and, if needed, an ultrasound biopsy. 

I don't think there are a lot of words I more personally dread and despise than "biopsy." At this point my veins shrivel up immediately and try to hide. They don't even come out at "Olly olly oxen free!" They know better.

So the ultrasound tech is wonderful, supportive, a cancer survivor herself and a tremendous cheerleader for me. She's joined the same team of ladies who won my heart the first time I was in there for a mammogram. These ladies are some of the same team who got me through the initial biopsy, where I passed out, and then caught me when I passed out again after she finished my follow up mammogram. These ladies are angels, I'm telling you. They hugged me and told me they'd be praying for me. And that maybe it was scar tissue. Don't jump straight to the worst.

Bless them all. I'm so fond of them. Definitely following their callings. Thank you, ladies.

So the ultrasound results-viewing doc comes in to confirm that "it's suspicious looking and will need biopsied." Unfortunately, they don't do that in the same appointment. So I'm scheduled and my sweet ultrasound friend informs me that I will have a tremendous doctor and she will also be part of that team and they'll see me in 10 days. 

Ten days later, on Thing Three's birthday, our firstborn takes me to the appointment and I warn them that I'm a fainting risk. They coo over me and inform me that they won't let me pass out, tut tut. I smile and silently rue, "we'll see about that."  They took seven samples, saying it'd be more than enough to see what's going on in there, left their "we were here" clip for future imaging, and lo and behold I stayed awake the entire time. I'm telling you- angels. Walked out of there and everything! Amazing. I'd never have believed it.

So we go on vacation.

And I get a call saying the biopsy tested positive.

*insert choice words and/or tears of rage/frustration here*

(I sure did.)

A telehealth call with my oncologist ensues. She says the next steps will be a brain MRI, a heart echo, and a PET scan to see if anything has spread. Then a surgery consult followed by surgery to get that area cleaned up. Then hormone therapy will be after that, but a consult with a radiation oncologist will help determine what else needs to happen- do my ovaries need to come out? What kind of hormone therapy will it be? Apparently you can only do Tamoxifen if you still have ovaries and you take something different if you don't. There are some other questions as well, but I think my brain might have fritzed at that point. I did retain that I can't have radiation again on that side because you can only do that once. Live and learn.

From vacation, I'm calling to set up the brain MRI, the heart echo, and the PET scan. Being on vacation actually worked in my favor as the PET scan van is only at my hospital on Fridays and they were already full until we could get back. Same with the surgical consult- that surgeon was on vacation and wouldn't be back until July. Perfect timing!

This past Monday morning, I head in for my brain MRI, which is first without and then with contrast. I choose to listen to oldies, which I clarify means 50's and 60's and not the 80's, which makes the nurse laugh. I try to not hum along and keep track of how many songs so I know when they'll pull me back out to add the contrast. I keep my eyes closed in these and that helps me not feel claustrophobic. But you don't go the whole way in for brain ones, so that also helps. The needle doesn't feel like it goes great, but it gets the job done, leaving a small bruise. Those ladies are cheerful and I'm in and out of there. I left from a different door and decided to walk around the hospital to my car. At some point the sidewalk runs out, so I kick off my shoes and roam through the grass barefoot, still wearing my hospital bracelet. Anyone watching from the windows probably thought I'd escaped. So far, so good. 

Monday afternoon is the heart echo. These are fun. No needles involved so I get to chill out on the bed as she glides her wand around while her other hand takes measurements and screen shots of my heart doing its thing. I like to watch the colors on the screen.

I get a call from my oncologist's office later in the week that both of those scans were clear and perfect. Brain and heart are great. Part of the reason behind the heart scan, I bet, is that I was on Herceptin for a year, which is not a chemo drug but is a hormone therapy drug which has the potential to do heart damage. My doc had me have heart echos during that year to make sure it wasn't affecting my heart adversely, so I wasn't expecting bad news this time either. Always nice to receive good news, though! Yippie!

Yesterday was the PET scan, first thing. That means that Thursday was a high protein, low/no carb/sugar diet, as much water as I could drink, no caffeine, no strenuous exercise, and so forth. You're also allowed to keep drinking water on the day of, which is so nice as it means your brain doesn't feel like it's the size of a raisin and you can actually think. So I go in sipping from my water bottle with nice, juicy veins. I thought. Silly me. As my Aunt Kay would say, "fool."

The PET scan van has two reclinable seats in one section and the machine is in the opposite end with a work station in between; today there's a male and female tech. I'm installed in my chair next to a tiny, smiling old woman in the next one, and I show the female tech my bruise from the MRI on Monday. She laughs and tells me that I'm still young and my veins tend to stay where they are; apparently once you get up there farther things tend to scoot around more. I guess we've all been warned, folks. Good times ahead. So she has me loose and relaxed and I swear to you I was not stressed about this test! I'd had one before, I was so excited to cross this off my list to get more answers, etc. I was good!

You can imagine my consternation when that needle wouldn't go in smoothly. She tried pulling it back out some, then a little more. I lamented that times like this are when I miss my port. She laughed and said since they're not nurses that they're not allowed to access ports anyway. Sweet Jiminy Christmas. Ports are God's gift. I ask if I can put my feet up on her stool and inform her that things are getting sparkly. She says sure, so my feet go up...

And I go out. Again, incredibly vivid dreaming and I wake up to... boxes up high on a shelf and two faces peering down at me that I can't immediately place and then... oh yeah, here we are. Stupid veins. Needles. Ugh. 

Female tech: "Um, have you ever seized before?"

Me: *sigh*

"Oh yes, it's happened before."

Male tech: "That wasn't a seizure. It was a vasovagal syncope..."

Me: "Yeah. I had the EEG and all that and everything was fine."

Him: "Especially if it only happens in circumstances like this."

Her to him: "Will you try to access her veins?"

Him: "Sure." 

He's wonderful as well, shows me a picture of his dog, we laugh about rescue animals, he gets it in and tapes it in place even though it only takes a few moments for the blood draw and the dye to go in, gets me a cold washcloth and watches me like a hawk. I do go on to vomit, sorry if that's TMI, but it's mostly water as I hadn't eaten since before 8 the night before, I don't think. 

I don't remember if she tried in the back of my hand like I'd suggested before or after I passed out. I think before. He got it in the back of my hand. So now I have two pinholes inside my left elbow and two in the back of my left hand, because everything is to be done on my left, non-cancer side. Blood pressure cuffs, all that jazz. I try to be good about it.

The radioactive dye they inject works its way all through you- in my case I sat for about 50 minutes for it to complete its rounds- and then you get popped into a machine where you glide back and forth and the machine takes pictures for a few minutes. It makes me think of a kids' ride at an amusement park. You sliiiiiiiide in, stop, slide a little farther, slide back out fast, stop, stay put, sliiiiiide. Had to remind myself to hold still and not giggle. She said since I'm smallish that it would take about 12 minutes. If you read online it can take 20-40. She said they had a new camera. Hooray for progress. I wish there was a radioactive dye I could absorb through a patch or something, sheesh. Come on, people. Let's stop killing each other with weapons and start inventing better medical procedures, ideally stick-free!

So I do great during the test, I'm released and escorted back to the waiting room where I park my bum and sit like a sad sack whilst eyeing up the trash can on the opposite side of the room while I wait for my hubby to make it back. He'd been told I'd be about an hour and a half so he got some errands done instead of wasting away in the waiting room. Apparently the radiology lobby is a cell phone dead zone because my texts to him were going nowhere. He found me after a few minutes and I leaned on him as I made it out of there on my own two feet, though I confess to feeling like I'd been slapped around by ocean waves. You know how you still feel like you're being hit right after you get out? I didn't want to turn my head quickly and relied more on my peripheral vision. They had assured me that I'd feel normal with that dye, but holy cow, what is IN that stuff? 

On the drive home, which is only a few minutes, he made a quick stop into our local donut shop and I vomited again, haha. Such a lovely morning. It's all good- we keep fast food bags (and everything else) in the car so I was prepared. He got me home and I popped back into bed for a much needed nap and start over. 

The rest of the day was uneventful and we celebrated with pizza for dinner. Now I'm not so excited about my oncologist wanting to schedule me for a PET scan annually. Yeesh. Oh well. Good to go for another year, I hope! Supposedly results take about 24 hours so my oncologist's office should be letting me know early next week how that all worked out. Then all of those images from the three tests will head to the surgeon for the consult Monday after next. She will have all the intel she needs to decide how to tackle this next part.

 I'm optimistic about the surgery part- never my favorite thing, obviously, but I can't wait to get this lump out before anything gets ideas about taking up permanent residence. If the PET scan reveals that it is just a lymph node who decided to hang onto some previous bad stuff, then supposedly after surgery I'd once again be disease-free (yay!) and would just do the hormone therapy treatment, however much that entails. Maybe ovaries come out, maybe it's infusions, I have no idea. Not stressing over any of that yet. If it has spread from the lymph node, I feel like my blood draw numbers would have revealed something to that effect and we'd have had a heads up. Either way, my oncologist said, "there will be treatment, but it will be nothing like it was before. It will be nowhere near as difficult." 

I want it out. And I don't want it to affect my range of motion, which is probably why she's sending me to a surgical expert who can clean it out really well. I can feel it not just when I touch it, but when I'm in certain positions or when something like a vertical underwire on a swimsuit puts pressure on it, things like that. I want it gone and I want to recover and move on. I'm stronger this time around than I was for the initial diagnosis six years ago. We started walking a few miles most days during covid and then this year I started running, so I'm definitely in better and more intentional shape than I was. That's going to count in my favor during recovery, I think. I love my team. They always have my back and they treat me like someone they'd enjoy going out to breakfast with. I'm in great hands. My family and my tribe know what's going on and have my back. Will I miss my ovaries? Nope. My main concern is that I'm right handed and if they have to  take much more muscle out of that side I don't want it to affect anything. "I am not left-handed," as they say in the Princess Bride. Me neither, buddy.  My lesser concern is that I don't want too many lymph nodes messed with or removed as I don't want to run the risk of acquiring lymphedema. I got stuff to do! 

Along with that, I'm mostly aggravated. With a lot of life, there's something to blame. And I know blame isn't helpful, but it IS nice to be able to point to something as a cause. "That guy was drunk and therefore caused that accident." With this, at least before I have all the imaging and so forth, the best guess is that a lymph node held onto cells it should have let go. How they made it through chemo and surgery when I had clean margins and then radiation is beyond me. But then my brain whispers, "does that mean it's back instead of never being really gone?" And I tell my brain to shut it.  And I remind it about my "perfect" numbers. And it settles. And life goes on in this amazing world with my incredible overlapping circles of friends and family. I know whose I am and who's got me. I am unbelievably blessed. 

I will keep you posted. In the meantime, we will play the waiting game once again, checking things off the list as they happen, celebrating over good news and making a plan to deal with any less than desirable news. The plan is to enjoy the summer! That goes for you, too: do what you love!

Stupid old boobs

April continues to not disappoint with her unpredictability in both weather and life events. Supposedly this week it will reach 80, though the nights slither down to 35 and 40. So far this month I've lost my last grandparent, our youngest has finished testing for and earned his black belt in karate, and I've been freshly diagnosed with breast cancer.

Winner, winner, chicken dinner. That's right, I'm now one of those one-in-eight women who will receive a diagnosis of breast cancer in their lifetimes. And what a wild and crazy ride that begins!

Once upon a time, a gal went in for what she figured would be a routine mammogram as she was officially of age to get things like that checked out. She received the letter in the mail informing her that she had dense breast tissue like a lot of other women, and it would require further tests because the density makes it harder to see trouble spots. A spot compression was ordered, which meant that another mammogram was performed with an additional section clamped onto the machine to focus on a specific area. Once that all was finished, an ultrasound was ordered. Based on the results from all of the tests, and the fact that I'd been feeling what turned out to be an enlarged lymph node in addition to an actual lump that the doctor found while doing a breast exam, an ultrasound guided biopsy was recommended. The surgeon told us, "I've been doing this long enough that if the results come back saying it's nothing, I wouldn't believe it." 

 Well, biopsy means needles. I am much tougher when I am pregnant than when I am not. As I am not, I passed out during the beginning of the biopsy to awaken and find a masked man (the surgeon) "yoohoo"ing me, which sent my brain straight to "Frozen" where a wet and chilled Anna crunches into the Swedish vendor's hut as he waves cheerily and calls, "hoo hoo!" It's a bit odd to me how it can take forever to fall asleep and dream but I can get there in a matter of seconds when fainting. 

So we pick up the chitchat where we left off, finish the biopsy, and they send me back to get another mammogram to make sure that the titanium chip they'd inserted as a "we were here" marker made it into the correct spot. They do this because, interestingly enough, scar tissue from surgeries (which a biopsy is considered) can look the same as cancer on future screenings; hence the marker which means the scar tissue was deliberate. 

Things got a little sparkly here too. I sat down after the first set of images was achieved and thought I was ready for the second one, but as I woke up on the floor, I guess I wasn't quite 100% yet. My new BFF in the women's center told me, "you did great. You held your breath, I got the picture, I told you to breathe, your knees went, and I caught you before you hit the floor." Isn't she super? 

The surgeon came in to check on me, pronounced that it was probably anxiety over the procedure (y'think?) combined with dehydration as they tell you not to eat or drink anything including water for the 4 hours beforehand. I was nervous (see needle notes above) and thirsty as I usually drink plenty all morning long. My sweet new nurse friends gave me cranberry juice and graham crackers like I was a little kid and when I was ready, I was wheeled out to the car and sent on my way. 

We headed back in the next week to go over the results with the surgeon we'd already met with. He told us that based on the results he had, I have ductile (starting in a duct) carcinoma (big scary cancer word) invasive (has already spread out from where it began), that I could have already had it for 5-8 years (!!!), that because of my age they will probably treat it aggressively which most likely will mean a port for chemo before they do any potential surgery/radiation.  We asked as many questions as we could think of and made the poor surgeon wince a little as he said, "again, you're at the outer edge of my expertise, but that's a great oncology question."

I perhaps mistakenly understood that we would not meet with an oncologist until after they had the MRI results in hand. An MRI couldn't happen until 7-14 days after the start of a menstrual cycle began. I was beginning to freak out a bit thinking that this process was taking longer and longer and we would be looking at the second week of May or later. I felt like I would never get answers to my questions unless I googled them and would end up scaring myself out of my mind.

Then God tapped me on the shoulder. "Remember my faithfulness." The phone rang on Friday morning. It was the oncology office and they wanted to set up an appointment. Was I free on Monday? (But Monday will come before the MRI!) Yes, I was free Monday! Then I was to bring the usual driver's license and insurance card and any questions I might have to meet the doctor on Monday. We'd start discussing treatment options even though we were waiting for tests. We would start blood work and no, fasting will not be necessary so go about your normal Monday morning and we'll see you then. 

Are you kidding me?! Wahoo! God, you're amazing! I don't have to fast?! I can drink all morning long to have nice juicy veins to tap! I can write down all my questions that I can't wait to have answers for: what should I be eating? What should I stop eating? Do I have to quit sugar? What should my exercise program be like? How wiped out am I going to be? How often will chemo happen and for how long and how long will the breaks be between them? Can I buy my summer pool pass? Will I be allowed to get in the pool with a port or am I benched? How much hurking will be involved and what can I safely take to avoid as much of that as possible? I don't have to wait until after the MRI to ask questions! Yippieeeee!

Granted, we won't know what stage I'm in until after the MRI because that is apparently the test to determine size and whether any cancer has spread to the lymph nodes. They're also still waiting on the part of the biopsy which gets sent away to determine whether or not I am Her-2 positive. If I am, from my understanding, that gives them an additional avenue with which to treat me. I am estrogen and progesterone positive, so those are other pathways to treatment. I am walking that fine line between spouting what I've heard thus far and not knowing what anything means, so my apologies to those of you who know more about this than I do and to those of you who think this is all TMI. 

We've been already just about bowled over by the waterfall of love, prayers, offers of help, encouragement, and devotion shown by friends and family. Say what you will about social media, but it is a good tool with which to keep multitudes of people informed.  

Stupid old boobs. I never wanted them in the first place! ;)

It is almost Monday afternoon! We will keep you posted. Thanks in advance for the prayers and love. Our support system is immense and not afraid of hard work. Like I told our camp friends already, I can envision some poor, pathetic demon who'd been assigned to attack me sniveling to Satan, "it's too haaaaard, she's covered too well, you won't believe who has been praying for her, I can't do this!" Satan will sigh, send him back to work, and they will both be miserable. God is so much bigger than this and I have absolutely no doubt that what looks like a huge, snarly, knotted mess to me is something fantastic and interconnected and breathtaking on the top of the tapestry; I am merely on the mortal underside. 

So expect updates here and on Facebook because this is going to be one long road of good, bad, and ugly. I'm sure it will  get worse before it gets better. After all, I'm already pretty good at living with cancer. The new temporary normal will be learning to live with cancer treatment, which is a whole different game show, complete with some zany host. If I had my choice, I'd request the cast of "Whose Line Is It" because man, anyone who can make up a song about plumbing using words given on the spot by the audience AND make it sound good is my kind of tribe. 

If you'll excuse me, I have to go pee again, but I will be working the Southwest corner of Hot Mess for the foreseeable future, so you'll know where to find me. Make today a fabulous day!