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.
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