A venting/processing post- *reader beware*

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

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

I'm a little all over the place. 

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

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

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

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

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

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

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

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

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

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

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

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

In no particular order:

YAY! It's not my imagination!

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

Hmm, it must be worse than I thought. 

Maybe he can help with my neck, too. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm cancer free. 

I'm better than a survivor.

I'm a victor.

 

Monday morning madness

 I will confess that it's a little disconcerting and completely hilarious to come downstairs in the dark to find an inflatable 8 foot tall alien peering at the glow of an unmanned computer. I had to wait to take the picture until it was brighter, but it cracked me up in the full dark, for sure. 

Geoooooooorge? What are you doing?

E.T. phone hoooooome…?

And that's the end.

 Tino had to get some more selfies before we left Mexico. 

Muggin was right; Miami Vice drinks are delicious!

Hinrew got Dada addicted to spicy hot chips...

And home again, home again, jiggety jig.

Final stops on the way home

Sunday brought visits with friends. In the morning we met up with friends I've had since seventh grade. We used to sing together in choir all through high school. Mar was in our wedding, and she now has a spunky daughter who is as close to exactly like her as possible, haha! Even though I haven't seen Mike since graduation, we picked right up where we left off and it was just like we hadn't missed any time in between. I have THE best tribe.

Much closer to home, we had ice cream (of course) with our camp friends, Tom and Stacy, and their lovely daughters. They'd stopped through last summer when I was doing chemo and had no hair. These sweet girls have been praying for me for a long time, and it was so nice to be able to hug them and thank them and their terrific parents! They've had six weeks of adventures out West and were also headed home but managed to squeeze us into their schedule. 

Yes, we are missing a child. Damon is spending the week with Pap- you didn't miscount. 

And continuing with the lovely sunsets, even in Ohio:

                                     

A gory details post

One might infer from the title that there will be material shown here which could make some readers uncomfortable. There's no shame in skipping this post. Read at your own risk. 

That said, I'll try to be sensitive as well. 

Here's me, pre-op, in my magic gown. You guys, this gown was so cool! When I was putting it on, I couldn't remember if the nurse had said to have it open in the front or in the back, so I of course assumed, "well, boob surgery would mean they're working on my front so it has to open in the front, right?" and that's how I put it on. Wrong! Haha! The nurse giggled at me and said, "everyone thinks that, but it actually is to open in the back" because there are all these cool layers to the gown including pockets that they can run tubes through which can warm or cool the patient accordingly. Magic! Whoever thought that up is brilliant. We fixed my gown and got me ready to go.

My OR people came in and introduced themselves. They asked me if I wanted a surgical cap of some kind and I asked if it was warm in the OR. One of the anesthesiologists said, "it's freezing in there" so I got a snazzy blue shower cap. He then gave me my calming, pre-op "margarita" mix, Dada kissed me good luck and they wheeled me into the OR. I remember looking up at the light bulbs that look like ice cubes in the huge light fixtures. I met a nurse who said his name was Mike, I remember the team saying something wasn't working right and that they needed another one... blood pressure machine, perhaps? And then I don't remember anything after that. Once again, I have no recollection of my surgeon or the head anesthesiologist being even in the room. I did not get a catheter, (big hooray!) or the breathing tube that heads clear down into your lungs (another big hooray!) I had what I think is called an LMA which is a tube that just lays at the top, back of your throat in case they need it for anything later. Less invasive and a not-as-sore throat later on. I only felt the soreness of it pretty much that same day and the next day.  

I think Dada said they started on me in the OR at 8:47 and I was wheeled into Recovery at about 10:40. I woke up and stared fuzzily at the large clock in Recovery at about 11:10 when violent shivers started. I told my nurse I wasn't cold but I was certainly quaking and she said the anesthesia does that. It didn't last too long and I got an extra toasty blankie out of the deal, haha! Since I didn't have to wait for a chest X-ray this time, I had some ice chips immediately and got to chat with my nurses as the underwater, operating on a slower record speed feeling when I turned my head faded. My surgeon came into check on me and asked if I'd decided if I wanted to stay overnight or not yet. I hadn't decided. Some of you are floored at what I've read online as a "drive by mastectomy", and believe me, I took that decision seriously, too. My surgeon and some of my nurses were strongly of the opinion that I'd sleep better and less interrupted at home and would therefore heal better. I suppose they also factor in the amount of germs in hospitals. It felt like it took me forever to decide and it wasn't because I was in any pain. I felt some hotness/burning sensation in the general surgery area but no actual pain. My surgeon had commented that people tell him mastectomy surgery hurts less than even laparoscopic procedures and I have to admit I didn't really believe him. However since this is Saturday and the surgery was Monday and I took absolutely nothing for pain yesterday at all, I guess he knew what he was talking about!

Once you're done in Recovery they send you to the next room to keep an eye on you. Dada was invited back to see me and I had one of the same nurses I'd had after my port surgery this spring, so that was really neat. She brought me more water and some Rice Krispie Treats, and kept a good eye on me. I did eventually decide I could go home the same day so she prepped my discharge papers and my folder of info I'd need to change dressings, how to take care of my drains which prevent fluid building up at the surgical sites (I have one on each side), signs to watch out for, etc. 

And the magic continued. They set me up with a scopolamine patch (thank goodness for Auto Correct finding that for me) which they stick to the skin behind your ear. It administers anti-nausea meds over a period of three days so you don't have any ill effects from the anesthesia. I was warned to not scratch it or touch it and then rub my eyes as it would dilate my pupils and then people would look at you funny, assume a head injury and order a CT scan. "Make sure you wash your hands. We've all done it" cracked my nurse with a roll of her eyes. The boys, of course, loved the idea of the patch with the magic medicine, and I did remember to wash my hands anytime I forgot it was there and scratched whatever itch was close to it. No dilated pupils or CT scans for me.

So I'm a stomach and side sleeper and obviously that isn't going to happen for awhile. Dada and Myron had disassembled our big red recliner and moved it upstairs so I would have a "nest". I've got multiple blankets, a side table for books/drinks/tissues/snacks/phone charger/desk lamp/etc so I'm pretty set for just about anything. Dada even dug out his travel pillow which has helped immensely and I'm about 15-20 paces from our bathroom. I finally learned my lesson last night and quit drinking about two hours before bed so I didn't need to be in there every two and a half hours, haha! Safe to say I've been well hydrated. Plus I have two pillows because I read I'm supposed to be propping my arms up. Lots to remember! I'm sure I'm not getting all of it right, but I seem to be doing really well, so I'm not stressing over it. 

And why these pictures decided to line up in the middle instead of along the left like all the other ones is beyond me, so sorry for those of you with OCD. My apologies.  

Ladies online mentioned a nail apron which costs about $1.50 as an excellent way to make sure you don't yank on your drains. The compression lines you see on my torso are because we've been using an ACE bandage over top of everything so stuff isn't coming loose, tickling too much, getting tugged on, and so forth. It reminds me of the big velcro wrap I was given after I had Damon. I told friends it feels good to put it on, and it feels good to take it off. The lump you see on my right side above the bandages is my port. It was being a butt and not letting the pre-op nurses draw blood from it, which is part of its job but it happens sometimes, so I do have a small bruise on the inside of my left elbow where a very apologetic nurse had to stick me. She was fast and efficient and a small needle stick was not truly one of my worries Monday morning, haha!

Some of you are Star Trek fans, whether you admit it or not, and if you remember the episode where Captain Picard is shown having been assimilated into Locutus of Borg, this next quote will make you laugh. Between my drains and my newly done landscaping I am Noboobus of Borg!

I have been having way more fun with this than anyone else, most likely because people are trying to be sensitive and don't want to be seen as crude, but also because the sooner I embrace my new reality the better I'll adapt. I'd made jokes all last week about my surgery approaching. Monday was my last Monday with boobs. Tuesday was my last day with tatas. Wednesday was my last hump day with humps. Thursday was harder, so I declared it my last happy hour with hooters. Friday was my last flash 'em Friday. Then I thought of Noboobus of Borg and cracked myself up. 

Humor is excellent medicine!

Then a sweet nurse friend advised to be sure I check my back during dressing changes because fluid can build up there as well and patients often don't realize it should be checked, too. Never would have dawned on me. As you can see, my back is in the clear. These were all taken Tuesday!

I have been absolutely floored at how normal I've felt. Everyone has cautioned to not let the pain get ahead of me. I'm thinking I must be doing something wrong because I don't have any! Granted I haven't walked into anything or been hit with anything or fallen onto anything this week, and I think I'm supposed to wait until the drains come out to start with the recommended arm exercises, but I've been slowing reaching farther and lifting light things and am doing really well. Showering with the drains is a bit trickier but there are lots of tips about that online, too. 

I have my follow up appointment all set for next week and I'm really looking forward to having the drains removed. They don't hurt at all, but they are encumbering, and I think psychologically it'll be a big milestone to have them gone. I am not looking forward to the intense itching I hear I will experience as everything heals, but even that is a sign of progress, so I'll take it. Again, I reserve the right to change my mind once it starts happening, haha. I am looking forward to experimenting with my wardrobe and at this point I'm not even talking about what will look good now that I'm flat- I simply mean what I'll be capable of pulling on over my head! This week has been all about the button downs, and I don't have or wear a lot of those so I've been raiding Dada's closet.  

Overall, my mental and emotional state has been one of relief and excitement. I did two biopsies and a port surgery. I'm done with chemo. I survived my bilateral mastectomy. The drains are absorbing decreasing amounts of fluid. I'm not in pain. I'm not thinking about radiation yet and don't have pathology results either to mull over yet. My village is overwhelming me with wonderful food, rides for the kids to their activities, prayers going up on high on our behalf, very gentle hugs, a stack of cards, and enough texts to blow up my phone. Thank you to all of you who have been part of this in any way, whether you are local and in hugging range or across the country and are sending support in other ways. Extra special thanks to my Mommee and Aunt Sherri who have been riding herd on the kids so Dada can focus on taking good care of me. I am so blessed. I know some of you might get sick of hearing it, but I'm telling you it is the absolute truth. I am so blessed. 

Lest you be kept in suspense

Hello! This is your PSA to stay on top of your physical exams, especially for those of you who tend to Procrastinate. Just wanted to get that out there.

And now for the good news: I'm out of surgery, out of recovery, out of the room they put you in after recovery, and I'm home!

That's right. I'm home. Lots of the medical staff polled were of the opinion that I'd sleep (and therefore heal) better at home. I was sent home with instructions on how to empty and log the amount of fluid in the drains (oh yes, good times ahead) and the meds which went home with me and all kinds of fun advice. 

Rest easy, sweet friends and family. I'm in good hands with Dada and my Mommee and I'm behaving myself under orders of all my nurse friends. I promise! Thank you thank you thank you for the prayers and all of the support you have showered on drenched us with. YOU guys are amazing! Thanks for "storming the castle" for me. I'm betting God was delighted on my behalf over all the help he could bestow on my medical staff because you enabled it. Thanks for praying powerful prayers and for being my safety in numbers. 

I'll keep this post quick and get back to "the hard part" of resting and recovery, but I promise to do another gory detail post for those of you who'd like one. Thanks again!

And Dada has been excused from his grudging assignment of guest blogger, though I think he did an excellent job. =)

Rest and Relaxation

I don't even know how he still does this, but here's the Damonater, worn out from the beach. He turns into one of those pillbugs who burp and toot through the outtakes of "A Bug's Life" that had me in tears, those rolypoly bugs that the kids used to play with at the old bus stop, like a comma.  

Sound asleep in the middle of the beach house's living room, despite everything going on around him. And I swear his head is tucked under the arm of that chair!

And then there's Thing One in HER comfy reading spot back home:

They remind me of my favorite childhood book by Dr. Seuss, Sleep Book:

Everywhere, 

Creatures

Have shut off their voices.

They've all gone to bed

In the beds of their choices.

They're sleeping in bushes. They're sleeping in crannies.

Some on their stomachs, and some on their fannies.

They also remind me of Billy Joel, who sings something about, "people tell you you can't sleep alone in a strange place, then they tell you you can't sleep with somebody else. Ah but sooner or later you sleep in your own space; either way it's okay- you wake up with yourself!"

Something along those lines. It's from "My Life" and I take no credit for any of it. 

I love sleeping.

Photo Friday

Yep, that would be the SOLD sign for the new house.

 

Their second first day of school, hehe.

 

You find things in the oddest places when you move...

 

A forlorn Newfie in the background. Buckeyes in the foreground.

 

Scrumdiddlieumptious cookies from our neighbors

 

White breasted nuthatch above, goldfinch below

 

Stinkbug. He tried to climb up into my jeans =/

 

A cattail from out back. Fortunately we got him outside before he finished poofing seeds!

 

Home sweet home, Lalaith Havens. Lalaith is Elvish for "laughter", something we have plenty of around here.