A serving of good news

 This isn't the post that's been rattling around in my head for awhile, but since everyone enjoys good news, *spoiler alert* it doesn't appear the cancer has spread. 😁

Tuesday was my back-to-back MRIs to investigate the spots that lit up on my PET scan. For those of you new to the party, in addition to the spot in my right axilla /armpit lighting up, a spot on my thoracic spine #10 and my abdominal adrenals, which sit above your kidneys, also were bright. 

The adrenals' results came in on Thursday as "no distinctive mass on right or left side" and were declared "good" as in "no cancer." Why were they bright then? Since they are hormone-driven glands, it could be several things. I asked if it was perimenopause and the nurse who was giving me the results said she did ask if it was age related, but there was no apparent clear answer. Bottom line- no cancer.

The spinal results came in Friday- which is mind-boggling as I was physically in the machine within the same hour for these two tests but whatever- and was also good news. No spot on the bone, meaning no cancer mass, though now T6 and T7 also lit up as having something degenerative going on, possibly arthritis. Meh. Not bothering me. Noted.

In addition, they saw "something" in my lumbar area which looks to be a(?) dural ectasia. I don't know if it's a single area or the whole thing or what exactly, but I still haven't learned my lesson and looked it up to discover that dural ectasia is an enlarging or widening of the dural sac which surrounds the spinal cord. It can cause back pain -aha!- and leg weakness. The dural sac provides nutrients and buoyancy to your spinal cord and is the sheath of spinal fluid. Thank you, Wikipedia. Fascinating! So maybe it's not arthritis in my lower back and that's why it didn't light up on the PET scan as inflammation. (This is all me thinking out loud.) Something to be aware of, I suppose. Bottom line: also no cancer in my bones. Yippie!

So those results were being sent straight to my Dr A in the city in addition to my previous scans. My oncologist here is going to talk with her and set up a plan for what's next. As far as Myself-the-layperson can tell, I only have the one spot in my right armpit area and nothing has spread elsewhere. In theory, that should mean surgery to remove it and then I'd once again be NED- no evidence of disease. I'm sure there will still be the hormone therapy after that, along with a talk about whether my ovaries should come out or not, but I'm wondering if there will be chemo in addition since it's now HER2- or if it won't be needed because it is isolated. We will just have to see what the doctors decide. I'm going to try to stay away from the endless scrolling of search engine results for drugs and treatments and scaring myself silly with survival rates when I have no idea what my professionals might recommend for this exact body of mine. 

In the meantime, y'all can focus on the "woohoo, no cancer spread" part! Thank you for the prayers and goodies and endless support, as ever. You all are the BEST. 🍦🍧🍨

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.

Not quite what I was going for

 Okay folks, the results are in! Boy, this free therapy really IS nice because they weren't quite what we were hoping for, even though they're not bad in and of themselves. Here goes.

The PET scan results lit up where we expected them to in my right auxilla (fancy word for my side around my armpit area) but it showed two additional spots as well. One in (or on, I dunno how that all works, really) my thoracic spine #10 and one in my abdominal adrenals. Does that mean there's more than one there? No idea. According to Google, those sit just above your kidneys, and the thoracic #10 is also in the middle of my back.

She asked if I'd had a back injury. Can't claim that. I feel like I do have arthritis in my lower back. She said, "no, the thoracic #10 is right in the middle of your back." Hmmm. Now I'm wondering what all shows up on PET scans because the internet's vague "areas of high metabolism" don't mean much to me! 

I guess it looks like something fishy is happening in the neighborhood and now I need more MRIs. Apparently they don't do spinal and abdominal ones at the same time- fabulous- so that means two more times to go carry on with the radiology imaging team, whoohooo!

My main thought keeps coming back to "there was nothing in my blood work to show reason for concern." In my superior layman's thinking (haha) that means that either we caught all of this really early before it affected my blood work or it could be something benign like a cyst or cysts that just show up and hang out and don't do much. We do have a family history of abdominal cysts, my mother reminded me, which I'd either forgotten or not known. 

Now we know a little more as in areas to more thoroughly inspect. Information and knowledge are power, right? 

I must confess to a pounding heart while I was madly scribbling everything I was being told over the phone. Since it's all in the middle of me, that means I'll probably be enclosed for the next two MRIs. I've been okay before, but honestly the more tests they schedule the more needles are involved the more anxious I get. I may need sedated for these ones, which is no big other than I wouldn't be allowed to drive myself home afterwards, which is NOT a big deal as I doubt anyone (ahem, Dada) will let me go alone anyway. As I said, I'm in good hands. And the needle will be going in regardless so maybe a sedative isn't a bad idea. Pray for peace. And really juicy veins. Plump, juicy, very full veins!

MRI recap

 Yesterday morning while admiring the smiling moon, I drove myself the three minutes to the hospital for my MRI. Shh, don't tell, hehe. Upon arrival, the friendly registration ladies said I was all set and sent me down the hall. I was the first one in the waiting room, haha!

After attaching my snazzy hospital bracelet and filling out the paperwork on a clipboard, I sat down to wait out the few minutes until I was to be summoned.

My radiation tech had kind, smiley eyes above her mask as she told me apologetically that I'd have to change, showed me the locker of scrubs and the changing room, and waited for me. She then escorted me to the MRI room where she and her fellow tech explained that I'd be in the machine about 20 minutes and then they'd inject a contrast into a vein and then I'd have about 5 more minutes. 

So I hop up on the table/tray/slab and wiggle into position. She asks if I'd like a blanket as it'll take about half an hour for everything, so I said sure. They tuck me in, hand me the call button, caution me that it'll be loud in there, and ask what kind of music I want. Adding a pair of the puffy, over-the-head headphones and clipping a plastic hockey-looking mask over my head, she tells me I'm all set. I giggle about it really feeling like Halloween as now I look like Jason from the Friday the 13th movies. 

I close my eyes, because I figure I won't be able tell how close or tight the top part of the machine will be to my face if I can't see it. Yes, the air current might feel a little different depending on if I am in or out, but I can do this. 

And in I go! At first there's some blips and boops and rata-rata-ratas as the machine sets itself up. Sometimes it feels like you're on top of a car hood that's been out in the sun awhile. Sometimes it feels exactly like sitting in my tenth grade Spanish class with a certain soccer player sitting directly behind me who repeatedly kicked my chair enough times that I wanted to elbow him in the face, that constant small jamming jiggle that you feel through your whole body. Sometimes it sounds like being inside an old printer, that bzzzzzzt bzzzzzzt bzzzzzzt sound. Sometimes it's like a mosquito the size of a T-Rex hovering over your shoulder. 

I picked smooth jazz so that I wouldn't be tempted to dance or sing along to the music because I was supposed to be still for accuracy purposes. The first few minutes there was no music and I thought, "hmm, either they forgot to turn it on or their headphones aren't working. Oh well. I'll just pray." So I started to pray for a sweet friend of mine and there was a large thump that made me jump a little and then the music started. I was glad, as it was hard to concentrate on praying with all the racket and no music to focus on. 

I listen to a handful of songs and then they pull me out to do the contrast part. Uh oh. Well, I'm already laying down, so I theoretically shouldn't pass out. She ties off my arm, has me make a fist, pops that sucker in there first try, reminds me that I might feel coolness versus the warmth that CT contrast has where it can make you feel like you peed your pants, and is done in no time. Then she says, "five more minutes, you're doing great." 

I close my eyes again, they stick me back in, and right when I think I might be done, it gets really bright. I think, "oh, maybe I'm out." So I crack open one eye and nope, still very much inside a tube made of what reminded me of the white walls of the Millennium Falcon. Reshutting my eye right quick.

Very soon after, she calls through the intercom that I'm done and that they'll help me finish up in just a few minutes. I have a few last minutes of music and then she helps me off the table/tray/slab with a, "you did great!" I thank her for doing great with the needle, haha. She tells me that they'd most likely have the results by tomorrow (today). I figure I'd give it another day and then call my doc for results if I didn't hear from the office first.

I put my clothes back on and head on my merry way, back out through a much fuller waiting room.

Imagine my delighted surprise when I got a call yesterday saying that the MRI results were fine/clear/normal! Woohoo!

So thanks for praying, everybody. I maintain that I am a single stick patient and that the whole brouhaha was brought about by my bod's overreaction to multiple and/or moving around needle jabs. Thank you all for the texts checking on me and for being available to help in your myriad of ways. I appreciate all of you!

Happy hump day!

Still grounded

 Tomorrow morning (at the buttcrack of dawn, might I add) is my MRI. For those of you scratching your heads, my bad. "Let me sum up," as Inigo Montoya says. I need to back up a bit.

*beep beep beep beep*

Last Monday I had the EEG and was to have the neurology appointment directly afterwards. However, the neurologist had a family emergency so my appointment got punted to Tuesday afternoon.

After he listened to my story of why I was there, as if he didn't already know, he told me that the EEG looked normal. Yay! I have a brain! Shush, Hinrew. Then he said something a little discomfiting; "however, small things can hide in an EEG so I want you to have an MRI. If things look fine from there, I'll check on you in four months. My gut feeling is that we do not need to put you on anti seizure medicine as that would be life long and has serious side effects."

Um, yikes?

My husband, the engineer, growled afterwards, "if the MRI is the definitive test, why did they order an EEG instead of an MRI?" Good question. Nurse Lisa told me over the phone, and I could hear the groan and the roll of her eyes as she explained, that insurance companies most likely won't cover an MRI unless an EEG is done first, even though it's dumb because if they just did the MRI they'd have the results they were looking for instead of now paying for two tests. Which is pretty much what my mother had texted me as well.

So, tomorrow morning I am signed up for an MRI with and without contrast. I know I've had one of these before, but it's kind of a blur. The tech asked over the phone if I was claustrophobic so I'm going with they're sticking me in some kind of tube. Good news is I'm allowed to eat and drink normally beforehand, no fasting, yay. Undecided news is the "with contrast" part... I can't remember if I only have to drink that or if that's through an IV or both. Less yay. Not gonna get fussed about it, though. Not worth it.

I also will need to ask if the results get read by the neurologist and if his office will let me know what it said or if I need to call them, or what. I was told not to drive until the results of the EEG were in, and I was a good girl and didn't, though I've discovered as a 44-year-old woman what it feels like to be grounded. Not a fan! Very inconvenient, even during a pandemic when events and activity levels are much decreased. Grr. Then he ordered the MRI and said to not drive for another week, maybe two to three weeks, something about six months at which point my non existent eyebrows shot right off of my head. I hope he was kidding, cuz man, that ain't happening. I am going with a week as that's what he said first. So there. 

Tuesday I also saw my oncologist who went over all my numbers and pronounced everything perfect. So good, in fact, that she doesn't need to see me for six months, so I won't have to head down there at all this winter, wahoo! She also felt I was good to drive and that the troublesome fainting episode was simply a reaction to the blood draw.  She went so far as to make a note in my chart that I will be reclining for future blood draws. Nurse Lisa approves, as per her "for the love of all that is holy... would you please make sure they lay you down for blood draws!!!" Favorite doctor ever. Teehee.

So as you roll over and hit the alarm for the day or as you roll over and go back to sleep tomorrow around 6:45, send a prayer or a good thought that the MRI finds nothing more than a small sign etched onto my brain reading, "STOP JABBING MY HOST!" Thanks a bunch! Have a great week!

Adaptation

You know that saying about how men keep everything in separate boxes with tidy labels and the contents of the boxes never, ever touch each other? And how women keep everything in one huge box with all the contents jumbled together, rubbing shoulders and rubbing off onto each other?

Yesterday I told a friend that I felt like my box was taped shut and then rolled down the stairs. 

Not as bad as this but rolled down the stairs? Yes. And no, I claim none of the credit for the movie or the video clip. That is not my box.

I suppose this post is just in case you feel like I'm always sunshine and daisies. While I am probably most of the time, I'm not always. Incidentally, some friends sent me some daisies and they were so cheerful. I was very impressed with their longevity, as well. 

My friends who are moms are some of the most adaptable people I know. Moms seem to be able to roll with the punches in an amazing way. I'm astounded how well things generally happen the way they're supposed to because once you add kids to a mix, you seem to end up with multitudes of schedule changes. Toss some doctors' appointments in there, sprinkle some play dates, oh yes- school conferences, part time jobs, there's a concert when again, and you can have a recipe for disaster. That's not even counting the adulting stuff you have to do like remembering car maintenance appointments, paying bills, getting laundry out of the washer and into the dryer, remembering the stuff we're out of that nobody has put on the list for the second week...

Here's the Moment of Humility: I understand my mother a little better now. 

She used to insist that if it wasn't on the family calendar, it wasn't happening. Drove me CrAzY. How can you be spontaneous if everything has to be written down in advance? Mind you, this was also pre-cell phones, which have completely changed the way people can interact. Gonna be late? Fire that short text saying so. Can't make it? Same thing. 

Pretty much if you have thumbs, everyone else can know the details of why plans are changing. Again.

Which is only part of why I've felt like I'd been in a dryer on the tumble dry setting. 

Last week my surgeon called with pathology results. The left side was completely benign, just dense tissue, which was what we expected, so thank you God for that! The right side had mostly clear margins except for the axillary (armpit) area, which is part of why radiation is still in my future. The tumor was a bit larger (2.5 cm x 1.5 x 1) than the MRI indicated (around 1.8 cm). This is not unusual as the pathology part is very precise whereas things can be a bit more elusive on an MRI. I just learned that, haha, so don't be giving me too much credit. The main tumor's edges were clear. Surgically speaking, we were supposed to be done.

Last Thursday I had my usual every-three-week infusion of Herceptin and Perjeta. I was told I am healing remarkably well. I apparently have an allergy to the nickel that is in some jewelry, as evidenced by an itchy rash around my neck from a necklace I'd worn for the first time a few days previous. My adorable doctor told me I was to inform Dada I needed gold jewelry for Christmas. Okiedokie! Sign me up! 

This Monday I met with the radiation oncologist who also was very pleased with how well I'm healing. It was three weeks to the day since surgery, and he said that radiation usually starts 4-6 weeks afterwards. He said I wasn't quite completely healed, but I looked right on schedule based on what he was seeing. And then he shut his eyes and said, "your port is on the right side." I said, "Yes, I know." He said, "it needs to be on the left side. I'll call your surgeon." I said, "I know he does surgery on Mondays and Fridays." He said, "good, maybe he can get you in on Friday and we can do the simulation* the next week."

Um.

Hiccup.

It's a hiccup. Some of you are yelling, perhaps in your head, "it's another surgery!" Yes. That's true. But it's one I've had before and know what to expect this time around. It's under general anesthesia and that means I can chitchat my way through it like last time and have absolutely no memory of the conversations. I'm truly not worried about it. I don't even remember having to sleep in a chair afterwards the last time. I am going to have the coolest scars when this is all said and done. 

The craziest part is that my shoulder ached more after the port surgery than anything hurt after my bilateral mastectomy. I suppose it's all about the positioning, but I still find it amazing. Again, now I know what to expect!

So I'm waiting for the surgeon's office to call to schedule me. I'm learning that like a watched pot never boils, a cell phone stacked on top of an opened planner never rings. It's okay. It's not a waste; my right side port has performed fabulously for five whole months. Five months of not needing sticked (except for a time or two) in my arms. It's been doing exactly what it was supposed to do, my good and faithful servant. 

I was initially relieved when I found out the port was on my right side. Yes, my seat belt lays directly across it when I'm in the passenger seat, but I drive a fair bit and thought it'd be worse to have it on my left side. Well, now it's going to be on my left side, but initially I hadn't known I'd be using a pillow anyway between the seat belt and my mastectomy incisions, so really it's not going to be a big issue. Whereas my mother and some of my good-things-come-in-small-packages Girlfriends sit on pillows when driving, I shove one under my seat belt.

Waiting is hard, so I get it as to that being one reason I feel so off. Another is scheduling anything around what you're waiting to hear about. Yet another is scheduling just about anything involving other people: a sweet friend from high school let me know through Facebook that there are cleaning services who clean for free if you show evidence from your doctor that you're undergoing treatment. I looked into it, discovered that there was a partner in my general area, gave them a call and set up a time for yesterday. However, life kept moving on and I also had to schedule the radiation oncology appointment for yesterday before the crew would arrive here. During the confirmation call, it became clear that they were coming earlier than expected and in fact while I was to be at the doctor's office, so Dada stayed home late to let them in.

Have I mentioned that our address is being changed over a period of two years from a county address to a city one since we are just inside the city limits? Even though we're not moving? Have I also mentioned how many people that throws off?

Apparently the crew I'd set things up with were looking for the new city address while our mailbox still boasts the numbers for the old address. Being on a tight schedule, they gave up and headed to their next stop- not that I blame them. We were in touch and tried to reschedule for today but their scheduler was dismayed to find that some of them are calling in sick and others are calling in with kids who are sick. I get it. Tis the season for germs, especially with the weather doing it's wacky let's-be-almost-90-and-then-drop-to-freezing-at-night-in-the-span-of-a-week trick. Bleh. We've rescheduled, not a big deal and certainly a first world problem, but the constant schedule/reschedule/"yes, you have to answer the phone sometimes so pull up your big girl panties already" was wearing on me. I'm a Hobbit with Wood Elf tendencies and I like to hermit once it drops below 70. Because it's cold. And I hate talking on the phone. We've covered this already. And emailing is no better as we have had the same email for almost 20 years and there are over 1000 unread emails in there. (And there goes my mother. Hi Mom!)

Again, it's not a big deal. It's a very nice gesture that has been delayed. Happens the world over. Just a hiccup. 

But winter is coming (ha) and I'm already feeling... not grinchy, not yet, but something. Maybe it's the hormones being out of whack because of the chemically/chemotherapy induced menopause. I've been getting angry over things that I should be able to brush off. I feel like all of the Thingz' tempers have been flaring faster than usual, too. Two of them have had either excessively difficult homework or what seems to them to be an overwhelming amount of homework lately, which every parent knows does not merely weigh on the child who does the assignments. Accordingly, we went nowhere and did next to nothing this weekend, partly for recovery reasons and partly because we rarely get to just stay home and play and relax. We needed the sleep and the space. But I don't feel like it restored us like it should have. 

I'm not sure what it is, but I hope it doesn't plan on staying. I feel like I could use a vacation, but I can't schedule anything until I know when the new port surgery will be. And I can't set anything up for the rest of this fall until I know when radiation will be, as in every morning or every afternoon- five days a week for a total of 33 times, which I don't know because that can't start until the surgery is over and I'm healed. 

Ring already, darn it. 

If I'm being completely honest, part of me is wondering if my surgeon is booked into back to back appointments today or if he is hesitating to call because he feels bad for making a mistake-ish. Yes, I realize I'm projecting, but it is possible. Surgeons are people, too, and while many do wonderful work I'm sure they don't all intend to have to do wonderful work twice. Kindness just about kills me, as I've mentioned before, and if he is all apologetic about going through this again, I'm hoping I don't start leaking and make us both feel terrible. Drat that Perjeta anyway. It's hard to have good feelings towards something that is helping save your life on a microscopic and therefore unseen level when the very obvious side effects are watering eyes and the need for Imodium within arm's reach. It seems to be much better than it had been when chemo drugs were also in the mix, thank you Jesus, but I'll hold my breath before I say things are back to normal. 

Ah. I get it now. 

"I hate waiting."

PS Sorry you're hearing about it here first, Mommee & Daddee; I've been trying to keep the dratted phone free! 

PPS Those of you who are participating in the BraBurningParty, it's ON unless you hear otherwise! If you can't make it and want to mail one to be tossed in the fire in your honor, let me know!

*Simulation: you guys, this sounds so cool! Apparently I lay down (lie down? whatever) in something similar to a bean bag chair which molds to me. The doc will put some wires on me that tell the computer to plot out a 3D image of me so that they can pinpoint exactly where the radiation needs to hit. I can't wait! It sounds fascinating! Then there is a verification appointment where they check out how the computer did versus the real me. The doc went over the short terms side effects and the long term ones, they will be discussing skin care because apparently you can't just use any old lotion, and he reminded me that multiple trials have proven that people live longer with radiation treatments than without. I'll have a total of 33 treatments: 28 to the chest wall and lymph nodes and an additional 5 just for my scars. Everything on this medical adventure has been interesting and the more questions I ask the more fascinating it gets. Our bodies are astounding, the science is so cool, and yay God for putting these incredible medical staff in my life when I need them!

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!