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.

 

Another side of randomness

 Last week was just nuts. In addition to the gas line at the high school being struck which caused school to be cancelled for Thing Three, I also had a two hour fog delay. We repeated the process on Tuesday, and though the gas line had been repaired, school was still cancelled for him as well as for me this time because the fog was still hanging around come bus time after the two hour delay. I think Wednesday everyone was on time, but I was subbing in first grade instead of hanging with my preK friends. Thursday I was back with my 3 year olds and then Friday was a work day and aides weren't required to report, and Thing Three also didn't have school because his teachers had a work day as well. 

My Mommeee arrived Monday afternoon and left Saturday morning, so we had a great, long visit this time. Thanks for making the trip! I miss you! Dada had been in Mexico for work since Sunday, and he made it back safely to us on Saturday after my Mom arrived home.  

This week will hopefully be a little less bananas, though I'm back in first grade on Wednesday again, and Thing Three has no school for conferences on Friday. Our school has them next week. I can't believe it's the end of the first quarter already...

My hindsight-is-always-20/20 observation is to not schedule surgery wherein your recovery requires no lifting within the same year as having lymph nodes removed in your arm. Hopefully none of you will ever go through the experience, but if you do, be forewarned that the second surgery and no lifting will set back your PT and stretching exercises rather alarmingly. I've been experiencing a ton of tightness throughout the right side of my chest, right armpit, shoulder, and neck. Over two weeks ago it was so bad that I whimpered when bending over to tie my shoes; the combination of extending my arm while having it tightly in front of me pulled all kinds of muscles in what felt like all the wrong places. At times, while stretching, I sounded snappy like a KitKat bar. As anyone with cording can tell you, the snap kind of takes your breath away a second and you're wincing the whole time you're working, either because it actually does hurt sometimes but also in anticipation of it zinging another stab of pain. For instance, I do 10 reps of various exercises, and sometimes the snap won't come until the 9th rep! Then you hesitate in dread a moment before starting the 10th, and breathe deeply when that set is done. I'm not particularly a fan of sounding crispy. Dada, however, is enjoying working on me with the massage gun we got; meanwhile, my vision when he's doing it makes me feel like the Blair Witch Project choppiness and it reminds me of how we'd vocalize as kids riding our bikes on our brick street, "heeeeyyyaaaaheeeeeyaheeeeya"... oh well. This, too, shall pass. I certainly won't win any Heisman trophies anytime soon!

School has been entertaining. For the most part, the kids are a hoot and I love the staff. I am tired of the squabbling over who is the line leader, but generally I am having a ball. I'm thrilled to be able to help. I missed so much time last year. 

Our weather has finally cooled off, I'm super behind on #Inktober, I have plenty of small projects to keep me busy when I'm home, and I'm glad for the time we had with my Mommeeeee. Too bad she didn't take Bos with her when she left. (I can hear you laughing, Mom. Pipe down.)

Did I blog that we had to put Honey down? I don't think I did. Our Honey girl was elderly and way past decrepit, so we made that worst best decision and our wonderful vet helped us send her off pain-free. Bos never even noticed. He still scurried to her dish for days afterwards to see if she'd left him any morsels and then he'd look at us like, "how rude." I think the only reason he'd miss any of us is because he doesn't have opposable thumbs.

One more football game and then the marching band season winds down. They've already had their concert and we learned the hard way to sit in the center of the auditorium versus towards the back. Having a line of trumpets three rows behind you is not recommended. Had it been drums, I'd have been great! I love to feel the beat in my sternum!

Have a wonderful week, everybody, and stay healthy!

Oh yeah, I have a blog!

 Summer proves both delightful and challenging for me, and for the same reason: the lack of routine. During the school year, my alarm is set for 5:15 and I'm good about getting up when it goes off. Most of that time it's dark because we live in Ohio. I enjoy the quiet, laugh to myself about having to share the single bathroom with three other people in the house where I grew up and delight that I don't have to do that here, and then I get both my quiet devotional time and my 15 minutes of yoga in before other people start rolling out of bed. While it's early, I crave that time and that quiet because afterwards it's anything goes! I might be called in to sub, a kid could miss the bus and would need a ride, someone else might need dropped off at class elsewhere, errands might need run, and so forth. Just life. Nothing seemingly stellar or amazing, but if I don't get that quiet stuff done first, all day long I feel behind and slightly aggravated that I "threw off my groove," to quote one of our family's favorite movies, "The Emperor's New Groove". In summer, there's no need to get up early because there's no bus to catch or school to help out, so I don't set an alarm. Consequently, I wake up all over the place timewise and it's been making me crabby because I feel like half the day is gone and I've accomplished nothing. I guess that's why our identity isn't supposed to be tied up in our occupation or what we do to make money. We are human beings, not human doings. 

Our weather systems have just been parking and idling and playing havoc with allergies, sinuses, headaches, and I don't just mean me. It hasn't really cooled down at night so we haven't opened windows to air out the house and it hasn't rained enough to matter for what feels like weeks. The predicted rain seems to continue to not materialize despite my weather app showing more rain clouds than not. The poor dogs are SO hot, Honey especially. I've tried opening windows first thing, but as first thing isn't as early as it would be 9 months of the year, I got a faceful of "soup" (humidity) so the window got shut pretty fast. I know it won't last forever, and I despise being cold, so I'm trying to not let it get to me, but it irritates me to be boiling outside and then freezing inside because of the AC. Yes, I know it's a #FirstWorldProblem and there are people with actual hardships out there, but as my blog is free therapy, I may as well get my money's worth. Wait...

I've been telling Dada that this summer of 2025 is my Summer of Pout. Not much is looking like I expected it to look by this point in the year. I assumed (ha, there's my first problem) that with the end of the stereotypical cancer treatment that I'd get to go on my merry way, maybe with some new longterm meds, but otherwise unscathed. 

Fool.

I didn't count on my right arm measurements landing me in a compression sleeve during tank top season. I didn't anticipate wearing a rash guard on vacation and not soaking up every available sunbeam to help get me through Ohio winters (because that's seriously how my brain works- I am solar powered!) I also didn't foresee having the rest of my lady parts being evicted and starting menopause for real, having already been in chemically induced menopause from chemo. Twice. And because the eviction is surgical and not magical, that means no baths or getting in any bodies of water for swimming for the rest of the summer, essentially, as our pool closes when school starts. I wasn't allowed in until my radiation blasted skin healed and now I won't be allowed back in. Another #FirstWorldProblem, but definitely a contributor to the Summer of Pout. I don't even get in a lot of the time normally, but now it's the "I can't" factor.

Also, high protein diet yet again to prep stores for healing after surgery, and no alcohol. Why do I only want it when I can't have it? 95% of the time I'd take ice cream over a fun drink, yet here we are again needing to abstain medically. Yes, I KNOW it's actually a poison and isn't good for anybody anyway, but I have a six pack of those fun, colorful Smirnoffs and I just want one. Grrr. *sigh*  #FirstWorldProblems!

With the lady parts eviction comes the "no driving" mandate until I feel better and am off any heavy painkillers, which I don't even want to start taking, so of course that's when band practices start up. Would you believe that there are already SCHOOL SUPPLIES in stores?! I don't want to talk about it. I want to kick something. Like a box of school supplies or something. It is not even the middle of July!

Now that I sound like a total Debbie Downer or Negative Nancy, let's pivot to the blessings. 

We had a lovely vacation in OBX again and there will be post(s) about the ocean and all that. We got quality time with my brother who hadn't joined us there the past few years. The sweet old man dog at the beach house is still alive and kicking and will still smile over his shoulder at you when you give him butt scratches. The young pup will play until she drops and was also happy to see us. We missed my aunt who was traveling on her own adventures at the same time, but enjoyed all the talks and time with my wise uncle who gives fantastic hugs. My great aunt, who will be 96 at the end of this month, is also holding her own and we had a few hilarious visits with her. I want to be back there already.

We have gone to the pool a handful of times and I've gotten in once to float along the lazy river. In my rash guard. But hey, I got to get in! Maybe next year will be better. 

Thing Three had his annual Dr Jon appt and he's doing really well. All our kids are string beans, so he weighed in at 113# and 5'8 and 3/4". He's freshly 15 and is all limbs and feet. He's changed so much just in the year since Thing Two's graduation that my brother thought he WAS Thing Two when he first saw him. Completely cracked me up.

Thing Two has been improving with the driving practices. Still unsure about what this fall holds for him school and workwise. Sometimes life is TBD!

Thing One has met an online friend in real life, which is always an adventure, and they've been hanging out a good bit. I know a lot of art is happening! 

I'm thankful that my arm measurements were trending back down closer to my normal and that I never made it into the actual red zone for lymphedema. I'm back in the green, but just by a hair, so the recommendation was to keep the compression sleeve on and do some exercises. The sleeve in summer is a right pain in the butt, but I do know that it's to help and not frustrate me. I'm trying to get back into my yoga and quiet time routine because downward dog and child's pose and so forth are exactly the stretches recommended. Two birds, one stone, etc.

I'm thankful we have a home. It's easy to take for granted until you see footage of Gaza, Ukraine, Sudan or the floods in Texas or whatever the next disaster is that rolls in. Trying to be thankful when things are going like they do everyday, not just when something big happens. Or doesn't!

I'm grateful for my "elite of husbands" and the time he's taken to haul me around to all these appointments. He has every right to be crabby as they're cramping our style, but he cheerfully escorts me around and I don't know what I'd do without him. Love you, babe.

I'm excited to have breakfast with some girlfriends on Monday morning. That should be a thing. Everyone should get breakfast with their friends on a Monday morning! I bet attitude and productivity would improve across the board.

I'll try to not let it be a month before I blog again. We are doing well. Thanks for checking in! If you want something to pray for, please ask for the surgery to go textbook smoothly with no complications, no infections, etc. We appreciate it. I'll keep you posted.

I'll end with a joke Thing Three told me:

What's the difference between a snow man and a snow woman?

Smoke detector reminder and other stories

 I am a little alarmed at how early the chemo side effects have set in. I worked on that previous post twice and still forgot to relay the funny story. *sigh* Bear with me, folks.

One of the 4 anti nausea drugs in the premedication umbrella-

-which makes me laugh because the wording is funny. I only get two chemo meds. I have four anti nausea meds. And they're called the "premedication" part? Hahaha! I am definitely living yet again the courtroom scene from "What's Up, Doc?" where the Judge is lamenting his drug dependence. If you haven't seen it, go track it down. Here's the specific snippet I mean but the whole thing bears seeing.-

-is apparently a steroid. The first med is a quick push one and went into my port just fine in a matter of less than a minute. The second one, the steroid, made me feel burny and tingly in places that I knew I didn't have a UTI so I assumed it was from whatever drip I was getting and that it was temporary. However, then I started to feel flushed and began to see tiny sparkles. My Doc was talking to me, my Lisa was there, there was also a pharmaceutical student present, so I interrupted to announce, "Um, I'm starting to see sparkles and it feels like I'm breathing through a straw...?" They all looked closer at me and the Doc says, "oh yep, turn that medication off and get a nurse." The meds get shut off, I feel the heat start to drain back out of my face, and the arriving nurses reassure me that I just got that steroid too fast, it's already in, all will be well. Note into chart about a slower steroid. Got it. Okiedokie. Whew, hot flash. My Doc uses it as a teachable moment and points out how my color is already better, asks if I'm also experiencing burning and tingling, and yes indeed, it was a reaction to receiving a steroid. 

"Have you ever had a steroid before?"

"Umm, I don't think I have, actually!"

She assured me that oral ones for, say, poison ivy or some such would still be fine, and reiterated that this one was just pushed too quickly for me, but my body has since caught up and all is well. Moving on...

Everything else was fine, no surprises other than I expected a hanging bag of Red Devil and it turned out to be in a syringe that the lovely nurse has to physically sit there and push over a few minutes, which lessened the impact of the googly eyes since we were the only ones who could see them, haha, but oh well. 

However, try explaining later to your husband about a steroid reaction and then have him turn to your bestie questioningly and have her answer, "she was redder than her sweater." Poor love of my life. But now we know. AND I was right about the burny and tingly feeling dissipating right away.

So Daddeeeeee, when you're up next time, we will ask for a slow steroid. No worries! I got you!

That was all on Monday. Some of those anti nausea meds last for 72 hours so the next few days I felt... chemically... I guess is the best way to put it. Not truly nauseous even when they wore off but felt like I could be, so I took some of the prescription they'd sent me home with, heeding Dada's advice to "not be a hero" and Lisa's advice to "stay ahead of it."  I'm eating a ridiculous amount of small meals and can absolutely see why the Doc cautioned that these particular chemo meds can make people gain weight: it feels better to have something in my stomach. She also warned that chemo weight is harder to lose than regular, but finished with "but I'm not worried about you because you're active and you'll be okay." I devilishly mentioned that the holidays were in between now and when I'll be finished so who would ever know if it was the chemo or the yummy foods? Hehehehe. I'm again struck by how similar chemo is to pregnancy: nausea, brain fog, weight fluctuation, craving something but not having any idea what, laying down to close your eyes and awakening hours later.

Thank you to my school friends for the ginger chews and to my friends who've sent candies and to my hubby who found me coconut bites. Y'all rock, as usual!

Yesterday, four days after chemo, I woke up and felt like my brain was actually clearer and more myself. I still feel that way today and haven't taken any meds other than my usual allergy pill, multivitamin, and calcium with vitamin D. I've had my breakfast and am cautiously optimistic for a nice weekend. My Doc said to keep track of what I felt when so we can determine "my pattern" and predict what I'll need and when. 

Next week I'm scheduled for a bag of fluids and a blood draw, both through the port so no worries, and my radiation consult. I have extremely mixed feelings about all this radiation business. I've heard from several sources that you can't re-radiate the same area, so why the tumor board wants me to have a consult about it boggles me. Plus, they mentioned I could be a candidate for proton therapy, but when I look that up it says it targets a tumor, which I no longer HAVE, so again, I'm stymied. Guess that's why I gotta talk to the experts. I asked my Doc about it during chemo and she set me straight: don't dismiss it out of hand. We want to throw everything at this, so go see what they say. 

Yes, ma'am. 

As far as the whole armpit area/ bypass surgery part is going, it's been 6.5 weeks since surgery and range of motion is definitely improving. I'll get some pictures up at some point, but things are looking decent-ish. I'll never win any Sex Goddess Body awards but since I was never aiming for that anyway, no big loss. I'd rather have ice cream! 

Moving is definitely better for me than sitting, and sleeping is wonderful. Enjoy that extra hour this weekend and do NOT feel guilty if you use it for sleeping! I'm waving my wand over here and giving you permission to use it however it will most bless your life. *swish swish* Don't forget to check your smoke detectors and have a wonderful weekend, everyone!

Quick update

 

Quick update before we head to the last high school home football game of the season:

Port surgery went fine. It was under the estimated 45 minutes, no issues, not terribly sore, haven't seen it yet cuz it's under a dressing, though it is all set and ready for use next week. Only snag seems to be the usual adhesive reaction... I have three spots where they put leads on my chest for my vitals and they are all clearly outlined in rash. Itchy, itchy Ichabod, i i i... That's my scar from my previous port!

Follow up appointments yesterday both went well also. My plastics doc was pleased with the scar, took some pictures, and said he will see me at the 3 month mark. 

Physical therapy was a workout; I can see why people are worn out afterwards. She was really pleased with my range of motion, so that was very encouraging. She said I qualify for the "advanced" version of exercises, haha, so she sent me home with a packet to work through and she will also see me again at the 3 month mark. 

Chemo starts next week and I've decided to take some googly eyes with me to stick on the IV bag. I also plan to wear my orange and black striped witchy socks since it'll be the week of Halloween. And I have snacks and my bestie Lisa and things to keep us both occupied and out of trouble for the multiple hours we will be there. Apparently this set takes around 3 hours and I have both a blood draw (through my port, yippie!) and an office visit with my oncologist before the chemo starts. Add in a bag of anti-nausea meds in addition to both bags of chemo and probably a bag of saline to keep me flushing and I'll be floating away in no time! Interestingly and unfortunately, there is an IV fluids shortage because the factory was in Asheville, NC! 

I'll keep you posted. Have a wonderful weekend, everyone!

Annnnd the news we've all been waiting for...

 ...no, I'm not pregnant. Ha! Oh, not that news. Right.

I'll get my port in next week! Once again I get to scrub a dub dub with the sudsy pre-surgical soap, go under anesthesia, wake up for a chest Xray and be sent on my way as a bionic person. I wonder what the ratio of people going into the hospital to get rid of things versus have things added or replaced turns out to be. Hmmm. A port has to be one of the best inventions ever. My left arm is going to be SO relieved to not have to offer up veins for months on end. 

The next day I have a follow up with the plastics doc to see how my incision is healing, as well as a PT appointment for measurements to make sure there's no lymphedema sneaking up on me and perhaps they'll give me exercises to continue building back my arm muscles. Apparently October is another of my go-visit-doctors months! Because THEN...

Chemo starts the last week of this month! Woohoo! 

Now you all think I'm nuts. Who woohoos over chemo starting? Once it's started, it's closer to being finished. I'd rather get as much done while the weather is cooperative. Last time I did it in the summer and while I'm still a bit salty about "losing" a summer, at least I didn't have to worry about icy driving. Oh well. It is what it is. I'm very much hoping to be done with the Adriamycin/Cyclophosphamide cycle before Christmas. So I guess now the prayer becomes that it please not kick my butt and that I stay healthy during the roughest months of the year to stay healthy, haha! I'll just take a page from Harry Potter and sadly resign myself to repeating, "I'll be in my bedroom, making no noise and pretending I don't exist."

Maybe then I'll catch up on my Inktober doodles!

I didn't die! What I remember and where I am now

 Hello everyone! *waves with left hand* This post will have some fun photos and some more sensitive ones, so viewers should proceed with caution, like one hand over their eyes (for some of you) and the knowledge that I'm okay! 

Sorry for the radio silence. My brain still feels a bit slow, but this is always good therapy so here goes. Please bear with me if I get distracted before proofreading or lose my place in the story, haha.

One week ago we headed into the city for surgery first thing Wednesday morning. Report time was 5 AM with surgery to start at 7. The night before was the usual nothing by mouth after midnight (just in case I were to turn into a Gremlin, I suppose) so in that sense it was nice to be there early; less time to feel sorry for myself due to hunger and dehydration. I get crabby from both!

That green circle, above, surrounds the little dimpled area of this squatting troublemaker. It's not truly in my armpit so much as just in front of it.

Below, the arrow points to the scar from where my port was during my year of infusions, the circle is over the previous scar from my right side surgical drain post-mastectomy, and the X marks the general area of the tumor. Ignore the hair- I wasn't allowed to shave in the days leading up to surgery. Not that anybody is looking that closely, just my disclaimer. 😅

We woke up at 4 AM because I needed my final of the 6 showers with the special super-duper sudsy germ killing soap first. That done, we snuck out of our friends' house and drove the not quite half hour to the hospital. They checked us in and immediately started to draw on me and initial their work so everyone is on the same page and body part and all that. 

                                                 

I had a sweet nurse who told me they'd get me an expert to start my IV, so then I had another sweet nurse come in to do just that and she nailed it on the first try. Woot! I met my surgery nurse and the anesthesiologist (holy COW, I got that right on the first try- no way!) and her assistant, and both docs came in to go over things, and then it was time to smooch Dada and get wheeled into my adventure!

                      

Gotta love my duck socks. And my fun compression boots that kept all my blood circulating and helped prevent clots while I was under anesthesia. These guys really know what they're doing! Everyone was incredibly kind, and let me tell you, I remember kissing Dada... and I have zero memory of even making it into the OR. Not kidding. Not being pushed through the doors, feeling the coldness of the room, not the bright lights, none of it. 

I didn't even get to use my bite sticks! I had one in my hand and was completely befuddled when I asked about the dye going in and how it feels like an angry hornet and they smiled at me and said, "oh no, we'll wait until you're sleeping for that." Could have knocked me over with a feather. Unbelievable. So I got to give that to Dada to put in my purse as I left him. Such good fortune! Hooray! No stinging!

And you guys, thanks for praying. One, I was not allergic to the dye. I am still bluish green in areas to prove it. Thank you! Two, apparently they had to do the long version after all and I didn't die! Dr A had not expected the lymph node mapping to work, and she was right, unfortunately. That meant after Dr A removed the tumor, surrounding tissue, and whatever lymph nodes were in there and attempted the mapping, Dr H also had to step in to reroute the severed lymph vessels into suitable veins. Apparently my previous radiation damage made that trickier in that he had to dig deeper to find recipient veins, but he was able to make five connections and was pleased. 

I woke up in recovery some time after all that and that's all pretty fuzzy. I know I vomited at least once- maybe when they tried to stand me up the first time? They said that happens often. 

One of the nice parts is that all of this procedure happened on the same floor: pre-op, the surgery, and the post-op care. No elevator rides, less chance of germs being handed around, no chance to get lost, haha. It was a really nice set up! My nurses, Abby and Alexis and Jesse and Chris were all fantastic, excellent educators, caring, kind, encouraging. I forget which person handed me the plastic tool that they want you to inhale from to make sure that your lung sacs are opening post-anesthesia, but she started to give directions and I took in a huge breath- the little indicator hit the top wall- and she laughed mid-instruction and said, "well, okay then, champ!" Guess all that walking and running this spring and summer made the odds ever in my favor. That and all your prayers, for sure! Thank you so much! 

I ate all my dinner, which was noodles, mashed potatoes, a roll and green beans- yes, Mother, there is visual proof in a photo below (I am NOT a fan of green beans)- and I didn't die! Haha. And my strawberry ice cream and later some orange sherbet with a turkey sandwich. I remember brushing my teeth later and wondering why my toothpaste was orange colored when I spit it out before I remembered about the orange sherbet. I think I also had another turkey sandwich around 4 AM...

They kept me overnight since I'd had the long version, and booted me out before 8 AM the following morning, sending me home with Tylenol and ibuprofen to alternate between, my inhaling-suck-it-in tool, two front-closing sports bras to help hold my dressing in place, gloves and wipes and all that jazz for Dada to use whilst emptying my surgical drain twice daily (fun times but not painful) and various dressings. 

And my duck socks. 

So now I'm colorful from the dye and the bruising:

The blue dots on my arm are where the plastic surgeon injected his own set of dyes to trace where the lymph vessels drained and to match with the veins. I also had blue dye injected into the webbing of my right hand between each finger. Mercifully I was asleep for all that. It is quite clear to me that I'd make a terrible junkie.

And I'm a bit rashy because of adhesives and cleansers, which is apparently a side effect of chemo because it happened then, as well. Benadryl helps and I know the itching won't be forever. Nothing like sporting weird racing stripes of rash in odd places and having one bumpy arm:

In addition to those itches, I had been warned ahead of time that post-surgery there would be light, tickly feelings on my right arm and that I'd need to rub it to desensitize those nerves and get them used to reporting in when something was actually touching me. Dada, who loves to give light tickly touches, was delighted. I am not a fan of light tickly touches because they tickle! Thing Two and I are firmly in the Firm Touches camp. I have indeed felt as though spider webs or Thing Two's hairs have been draped along my arm, or as though a drip of moisture is sliding down, and am brushing and rubbing and scratching gently accordingly. Mostly it feels like when you've slept funny and your arm is asleep, unusually heavy, right before the tingles of the blood rushing back in begins. Sometimes the skin gets stuck together in the adhesives that I have to let flake off. I'm allowed to shower but not let that part face the stream of water yet. So things get a little pinchy on that side.

I'm to not lift anything heavier than two pounds on my right side and I'm not to lift higher than 45 degrees this first week. If you want to know what that's like, go unload your dishwasher with your opposite hand and you'll have a pretty good idea. Get a gallon of milk out of the fridge with your off hand. Set a lot of things down so you can open the fridge or cabinet or door first and then pick the stuff back up with your "bad" hand. It's entertaining, but I am so astoundingly bad at brushing my teeth with my off hand, that I've gone back to using my chicken wing right side. 

I'm drinking lots of water, eating whatever I want, playing lots of solitaire on my phone and watching way too much TV, but I don't feel like I can focus on a book quite yet. This post alone has taken me about two hours, though there were some interruptions, including a thunderstorm followed by intense sunshine which resulted in this: 

Thank you again, all of you, for being invaluable members of my tribe. I am sure the docs will be pleased at my follow up appointments and I am healing well. I've gone from meds every four hours to meds about three times a day. I slept through the entire night last night and I can't tell you when that last happened! We're still waiting to hear if there was lymph node involvement so we know if I will need chemo in addition to hormone therapy, and I'm not sure when we will get those results. Thank you all so much. You are among my many blessings. 

Home again, home again, jiggety jig!

 Hiya! This will be brief; as my creative juices are still a little sludgy, but I am HOME. We got booted out yesterday morning after I was able to waddle around the hospital floor in my grippy yellow duckfoot socks, use the bathroom, eat several times and pass all the mini exams they have you perform. I'm going to be in recovery mode a little while, but wanted to thank you all for the prayers, cards, texts, calls, all of it. Truly the best tribe ever! 

They did have to do the long version and that included sending the 2/3 of my right side lymph nodes out for inspection, so we won't hear the results of that right away. However, my docs were pleased, my nurses were proud of me, and everyone seems to think I'm doing very well. I'm alternating Advil and Tylenol every four hours, have no dietary restrictions, and I will not be power lifting anytime soon as I can't lift more on my right side than two pounds until I have my follow up appointment next week. I promise that I will try to behave myself and not overdo things. I am very much looking forward to my first shower, my surgical drain is doing a good job sucking out my fluids, and it was nice to sleep in my own bed with tons of pillows!

Have a wonderful day, my excellent tribe. I love you all!

Story time

*Harry Potter spoiler ahead*

 I am astounded that I've never related this memory here before (and I checked), but as I need to reference it, get ready for story time.

My friends Rich, Wendy, Heather and I were assigned to the same elementary school for our spring semester of pre-student teaching. It required driving from State College, PA where Penn State Main Campus is to Altoona. I can't remember how many days a week we did it, but we had a great comradery (huh, I always thought that was spelled with an ie... who knew?) and the car rides were always a hoot. Wendy drove an old Bronco that was sans the inside roof fabric and had handprints etched into the ceiling. She also claimed she had to sing to it to get it started in cold weather, but I never got to confirm that because they came to pick me up. 

Around Easter, someone brought a package of colorful marshmallow peeps. We didn't open them that morning, and I don't remember if they were left in the car for consumption that afternoon or if they were inadvertently forgotten there, but when we came out after school that fateful sunny day they were, sadly... deceased. 

I remember Rich picking up the still-cellophane-wrapped box, tilting it one direction and then the other, all of us watching as the colorful ooze inside slid from one side to the other, and laughing as he cried, "sweet, sweet, innocent peeps!" It became a descriptor for other "poor, unfortunate souls" as Ursula croons in "The Little Mermaid." We have used it throughout our marriage and laughed when something melted, broke, or otherwise gave up the ghost. Sometimes our kids even use it.

I was thinking about Harry Potter's friend Ron and musing about how he is such a "sweet, sweet, innocent peep" in how oblivious he is to what is actually going on in others' heads. There is a fantastic example of this in The Order of the Phoenix which spawned another quote our family uses about "the emotional range of a teaspoon". Spoilers ahead for any of you non-Potter fans, apologies, and all credit goes to J.K. Rowling, not me:

Hermione sighed and laid down her quill.

"Well, obviously, she's feeling very sad, because of Cedric dying. Then I expect she's feeling confused because she liked Cedric and now she likes Harry, and she can't work out who she likes best. Then she'll be feeling guilty, thinking it's an insult to Cedric's memory to be kissing Harry at all, and she'll be worrying about what everyone else might say about her if she starts going out with Harry. And she probably can't work out what her feelings towards Harry are anyway, because he was the one who was with Cedric when Cedric died, so that's all very mixed up and painful. Oh, and she's afraid she's going to be thrown off the Ravenclaw Quidditch team because she's been flying so badly."

A slightly stunned silence greeted the end of this speech, and then Ron said, "One person can't feel all that at once, they'd explode."

"Just because you've got the emotional range of a teaspoon doesn't mean we all have," said Hermione nastily, picking up her quill again. 

What in the world does all of any of that have to do with life right now? Fair question.

People have been asking how I'm doing and how I'm feeling. I've been laughing about Ron's reply because that's exactly what my brain is doing- fairly exploding over all the things I'm thinking and feeling. For instance, today I'm elated that very soon I'll not have a tumor in me any more! Medical professionals at every kind of appointment ask if I have any pain. It's not so much pain as a mental image of it slowly poisoning me. I bump up against in when I have things in my arms and I scowl at it. In my head it's so much bigger than it is in reality- as far as I know it's still under 2 cms in every direction. I'm kind of torn about asking to see it or at least pictures of it after the removal. I sort of want to face the enemy. Troublemaker. Take that, you squatter!

Back to my teaspoon running over.

I'm thrilled that it will be gone! And I'm super excited to hear, "your sentinel lymph nodes were clear! You're done!"  though that will still mean hormone therapy, at least.

And if I do hear, "we had to do the whole shebang" which will equal "and you'll need chemo" then I'll finally know that and can get on with planning for it. So much depends upon...

Either way, surgery will be over and behind me instead of looming in front of me. I can pivot to what needs to happen next as I behave myself and don't lift anything heavy and record the levels in my surgical drain and drink lots of water and get lots of rest and wait and wait and wait because healing takes foreeeeveeeeeeerrrrrrrr and I got Stuff To Do! I know we are human beings, not human doings, but the more I sit around the more tired I get. I'm glad that part of my recovery is walking! That is actually something I'm rather good at. *beaming proudly*

Lemme know if you wanna walk with me, even if you're in a separate time zone and thus have to do it in spirit (you know who you are), and we can set it up! 

Have a terrific Friday the 13th weekend, everybody!

*Again, I get zero credit for work done by J.K. Rowling and her Harry Potter series. Read them. They're so fun!

Rowling, J.K. (2003). Harry Potter and the Order of the Phoenix. New York: Scholastic Press.

Pre-op rundown

 Sunday night we stayed at some friends' in the city so that we wouldn't have to make the 2 hour drive first thing in the morning for my 9 AM pre-op appointment. Thank you again, you guys, for your hospitality! It is a bright spot in what otherwise feels like a not fun trip. So appreciated!

I got signed in, having done all the questionnaires online ahead of time, and was told, "you'll have your appointment with Katie, then a chest X-ray and some labs." 

Oh hold up, there; nobody had said anything about labs. Maybe I should have assumed there'd be some, but you know what they say about assuming. Plus, last time I was in, I'd asked and they gave me the lab form to give to my oncologist the next time I had them done.

Which was July 29th.

They want within-a-month-of-the-surgery labs. 

Bah.

So anyway, we do the gig with Katie, who is wonderful and answers all my questions, ridiculous or not. I discovered I am NOT, in fact, allowed to have my anxiety medication (that I only GOT for before stressful appointments, gah!)  before the feels-like-an-angry-hornet part of the procedure. Thank you, Mike, for the bite sticks! They are already in my Must Pack stack.

She asked about muscle pain. Um, you mean the constant knot in my right shoulder where all my stress has gone over my entire life? She smiled and asked if it is worse now. Um, yes, haha. I am allowed to take Tylenol, but no Advil or Aleve and so forth for the week before surgery. I guess that is par for the course. Any nurses can set me straight. 

Do I need to buy a front closure sports bra for afterwards, especially as I have no freakin' boobs to put in one? Haha, no, we will send you home wearing one and it needs to stay on for at least 48 hours and then it's up to you to wear it, not wear it, whatever feels best. It's kind of there to protect that dressing and provide some compression. Hooray, crossing that off the walmart list. 

We ask, "do we really need to come back Thursday for the plastics' pre-op? What is he going to do?" She looked things over, shook her head and replied, "I don't even know WHAT he would be doing... I'm already ordering everything you need. I'll call him and see if you can skip that appointment." 

So I head downstairs, still in my stylish light pink open-in-the-front doctors' office gown to get my chest X-ray. The tech tried five times but her machine was giving her grief. She's grumbling as she resets it again and again, "I already recalibrated this thing... what is going ON?" I mused that it was Monday morning, maybe it just didn't feel like working. In exasperation she sent me to the lab while she called her boss to see what to do next, telling me to come back when I'm done with labs.

So, STILL in my height-of-fashion gown, I bebop down the hall to the vampire lair lab and sit down with a chipper tech who said, "you got your chest X-ray done already?"

"Nope, it's not working. I'm supposed to go back. I told her maybe it's because it's Monday."

She sat back in her chair with big eyes and said, "AND we had a fire drill this morning. Now I ask you, who would schedule one of those for first thing on a Monday morning? They KNOW we are so busy. Those alarms! Ugh!"

So we laughed as she tried stabbing me to find a suitable vein, gave up, got a different needle and stuck it after calling it a "bugger" which cracked me up again because that's what my Nana used to call my Thingz. 

I impress Dada who is waiting with my paraphernalia (what a ROTTEN word. Took me 5 tries and I STILL had to look it up) like my clothes, water bottle, purse, sunglasses, paperwork and second booklet on the surgery prep and recovery that the nurse had given me... anyway, he's impressed that I'm walking out of there on my own two feet and in a good mood. He inquired, "She got you on the first stick? Wow!" 

"NOPE!"

"Wowwwwww. Need anything? Need me to steady you?"

After reassuring him I was fine and relaying the intel about the fire drill, we head back to the lab, get the thumbs up from the tech who takes me right back, snaps the X-ray, tells me I can change and go home. 

We drove back and celebrated with steak as I'm supposed to start my higher protein diet (aiming for 90 grams a day, good gravy, there's no way) to increase protein stores that my body will draw from after surgery to heal the wound. Fascinating! 

Yesterday, Katie called me to make sure I'd seen the results of my labs- my blood glucose had been low and she'd told me I needed to eat; I told her what I HAD eaten and she decided it was a glitch and to not worry about it- and to ask if I had any more questions. She let me know I didn't need to go to the plastics' pre-op appointment. Woohoo for an open day not spent in the car! Thank you!

Then the plastics' doc called me, sounded like from his car, to tell me that appointment really had only been for in case I had burning questions that needed answered or if I felt he'd already covered anything. I asked, "it says 'no lotions' in the book- is it because they figure by telling you to use none anywhere it's safer than telling you to avoid the area lest you forget and slather it on anyway?" He said, "I don't know why they say that unless it's in case you'd get a skin reaction from it, but if it's something you're already using every day, just avoid your breast area and upper extremity and it will be fine." Personally, I figure supple, well-moisturized skin would be more cooperative during surgery and heal better than dried out, flaky skin, but I lack a medical degree just as I lack a theological one. So no lotion right side going in. Got it. I thought it was so nice of him to call. He could have just checked in via MyChart...

Thank you to all those who have left notes or texts or calls and so forth to let me know you're following along and to support. You are amazing. I love all of you.

If you need me, I'll be over here munching my almonds, having my call with the OR nurses, rubbing my right shoulder, and avoiding germy people. Wash your hands and have a wonderful hump day!

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.

The continued port saga

*Advisory warning: there are photos within that may cause embarrassment when viewed in the company of others. Or not. Viewer discretion is advised. Sorry, Mom.*

Of course, within twenty minutes of hitting the "Publish" button to blog the other day, I received a phone call. It was my surgeon. He informed me that in his 20 years of practice he's never had to move a port, that patients have previously received radiation just fine wherever the port may lie, and that he doesn't feel it needs to be removed while another is inserted on the other side. He also said he would do the surgery for me if I wanted to do it, but he didn't recommend it. While the odds are small, there is still the risk of potentially puncturing and collapsing a lung. He'd await my decision.

Then the radiation doc called right after that to give his two cents. His concern is that I would forego a "simple surgical procedure" which would lead to potentially more skin damaging issues longer term. Because the skin over the port is raised and thereby closer to the radiation field, the uppermost parts of the skin would receive higher doses (I think?) than the sides. In other words, if my skin was flat as it would be without a port, it would all receive the same amount of radiation. Leaving the port in makes it uneven, but the physics team can tweak whatever it is that they do. Plus, if there is any metal in the port itself, the metal can "scatter" the rays so that it isn't hitting directly where it's suppose to hit. I guess. We're not talking super hero laser beams; still, he wants his treatments to be the best they can be. 

"So you're in a gray area. Can we do it successfully with your port staying on the right side? Yes. Neither of us would ever sacrifice the big picture of treating your disease for something unsafe. We can do it either way. It's your choice."

"Thanks a lot."

We both laughed.

I told him I'd think about it.

I did ask what the odds were of me ending the 33rd treatment  without any skin damage regardless of moving the port. He said they'd be there for me the entire way through treatment to talk about skin care and to be sure to let them know about little things before they turned into big things. 

I also called my oncologist who's been with me since the beginning. She said she didn't see a need for me to have the port moved.

In the end, after polling my nurse friends, badgering poor Dada, relentless texting to other friends, and a phone call with my mother, I decided that if it was truly a big issue, the radiation doc would have said, "you have to have it moved, period." And then that would have happened. Since he said that the team can work around it, I'm opting to go that route to avoid an extra surgical procedure. I suppose time will tell if it was the right choice or not. Who knows if insurance would have even deemed it "medically necessary". 

Lest you think badly of my radiation doc, please understand that he has transferred into my team very recently. The doc I would have had at this juncture has left and I'd never met him. We had met with one of his partners who was wonderful and very thorough and exceedingly kind. My new doc told me that from now on he will be requesting that ports go on the non-cancer side, so this is a big deal to him and I'm confident that he would have brought this up had he been here as part of my team from the get-go.

Tomorrow I go in for the simulation and I can't wait to tell you all about it! 

Today is 4 weeks exactly since my BMX (bilateral mastectomy- not dirt bike) and I've noticed yet another Thing I Should Have Figured Out Had I Really Thought About it: when your arms are spread out (think taking a selfie) or up, your chest spreads as well. When your arms are down at your sides, your chest relaxes. My surgeon had told me my arms would most likely be spread out during surgery, so guess who looks super flat when her arms are out (and yes, I'm sucking the belly in lest anyone get distracted from the matter at hand)? 

And guess who looks concave when her arms are at her sides? 

It isn't bothering me, but it makes me snigger a bit, especially when I flex. To be brutally honest, I don't miss the boobs. Not at all. I am loving being braless, though today is the first day I haven't had either a compression shirt or an ACE bandage on. It's a little chilly, but I don't have nipples to give away the fact that I'm cold. Ha! Sorry, Mom. I'm reveling in the soft T-shirts friends have showered me with and I'm realizing why so many ladies in my online community love their camis up against their skin.

Anyway, I am happy. The areas around the drains are still a little itchy but they're mostly healed. The actual incisions look great.  

Left side

Right side

I certainly never dreamed m'boobs (or lack thereof) would be on the Internet, but there we are. I've been told by more than one person that this blog has been recommended to someone who is on a breast cancer journey themselves and I'm so humbled that God would use my story to hopefully help someone else feel less alone or less afraid. I also hope that they are seeing that life really will go on despite the diagnosis, the chemo brain, the impending radiation burns, the surgical scars, the annoying drains, the less than desirable side effects, and everything else cancer would like to throw at us. Yes, there are tears and tantrums, but overall life is good! I am blessed. To all of you who are along for the ride, thanks for being here and thanks for being you. 

PS The phone just rang. It was the radiation office calling to let me know I need to have a pregnancy test done tomorrow morning before the simulation takes place later. It never ends, hehe. If you can't find me, odds are good I'm in a doctor's office somewhere! 

Have a great week!