Not quite gone, but it’s getting there. To those of you who’ve heard me comment that I look like a lightbulb that’s trying to grow hair… see for yourself! I look like a Minion!
Happy 45th birthday smiles to Hinrew! We love you bunches and are sending you big hugs and smooches.
Thing Two had his annual checkup with Dr. Jon, the amazing pediatrician we've had for 19 years now. He is a great sport, so we figured he'd get a kick out of some Shenanigans. Cadaver made an appearance to the absolute delight of the nurses and we waited to see if Dr. Jon could pick out the real Thing Two...
Okay gang, I'm officially halfway done with the AC part of chemo. Two down, two more to go. This time I get a three week break before my next one so that I may feel like myself and enjoy my favorite holiday with some of my favorite peeps! Yippie!
Dad got to go with me yesterday and kept me company through all the sitting around. I reminded my nurse about "a slow steroid, please" and she said, "oh, no worries, I ALWAYS do that one over a 10 minute span- I don't push it!" There were no issues, no turning tomato red, no weird tingles, nothing. I felt like my heart was beating just a little fast during my bag of Pepcid, which I don't remember happening before, but it could just be the massive chemical dump that was happening and it didn't last long sooooo...
My doc was thrilled with both my bloodwork numbers and my range of motion. It's so nice to have a cheerleader like her. I don't know what parts per million or whatever the units are supposed to be, but my white blood cells were 9.9, hemoglobin is supposed to be at least 10 and mine's 12.3, and platelets are to be over 100 and mine were 167, so she was actually cheering when she read those. I guess those are the magic 3 that they keep a close eye on.
We talked again about radiation and I told her we have our second opinion consult tomorrow morning. She said her very strong vote was for proton therapy. It'll be interesting to see what Dr. P recommends tomorrow.
We also discussed having my lady parts- ovaries, tubes, and uterus- out in the future, but it's not an immediate thing. At this point, I told her I feel like a Mrs. Potato Head just ditching pieces left and right. "Well, don't need THOSE anymore and who needs hair and I don't need THAt and..." My Dad and my doc both cracked up, but it's the best mental image I can summon up to describe my poor old bod at this point! 😄 As if to drive the point home, my period started today and I find myself musing about the absolute indignities of cancer treatment and planning and all of it:
- mosquitoes who bite me don't even have the decency to die thanks to the chemicals in me which I find absolutely unfair.
- I have no body parts capable of feeding an infant yet my ovaries and uterus care not, apparently, and just keep chugging along though that ship has not only sailed but has been used as a funeral pyre, lit on fire, and sunk. Yet here we are.
- I got to discuss my bowels and my periods in front of my father, poor thing.
All of it is weird. But I have the best team, the best tribe, a big God and far too much food and I am hanging in there!
AND happy birthday to my precious Mommeeeeeee today! We all send birthday hugs home with Dad. Miss you and love you bunches!
Happy hump day, everybody. Take good care of you!
The radiation consult went... well? Hard to say when we still have so many questions. I need to set up a second opinion/pick your brain session with my local doc here who did my photon radiation the first time around.
I was impressed with both the research student and Dr J. They were upfront about there being very little longitudinal data because proton therapy, which they are recommending, is a newer technique. They've been doing it for awhile at their location but just opened it up a few months ago to breast cancer patients, so I'd be part of something... new? Fresh? Exciting? Terrifying?
"All of it, Frank." (That's from "Father Goose", another childhood favorite which stars Cary Grant and Leslie Caron and comes highly recommended! We use a TON of the lines from that one on a regular basis.)
As my charming husband likes to remind me on every possible occasion, I was four chapters behind in my college physics class my freshman year when he visited. Therefore, I'm probably not the ideal person to spell this out, but if I have the general gist of the science, then photon therapy (that I had the first time) is essentially the same dose over designated area. I had 33 sessions, once per day, of that over several weeks.
I claim ZERO understanding as to how a photon torpedo works, which is what I keep hearing in my head thanks to years of my mother watching "Star Trek"...
Proton therapy, I guess, targets more specifically and then the energy drops off more quickly, in theory sparing some damage. That's a good thing because what is under where they're targeting? Oh you know, my heart and my lungs. No big. 😏Again, I THINK I have that right. They can focus it like a mountain versus a plateau. Yeah, let's go with that. All I need to do now is write "Radiation for Dummies", hehe.
Dr. J recommends the proton therapy this time over photon therapy and that would be twice a day with at least a six hour window between sessions because in that window healthy cells can repair themselves but cancer cells can't. I think that is fascinating! How cool is that? Because it would be twice a day, I'd be done in about 3 work weeks.
"But I thought... but we'd been told multiple times that you can't re-radiate an area that had already been radiated. Won't that damage the bypass surgery that I just had? Will insurance cover any of this? Why is one better than the other? Would either work? Why do you recommend one over the other? What SHOULD we be asking that we don't know to ask? Argh, why isn't there statistical data yet?"
Those questions and more swirled around the room as we chatted. Dr. J seemed very knowledgeable and earnest and asked great questions. It sounds like he was on the tumor board so he's already heard of and talked over my case. As always, I marveled at how I felt seen as myself and not simply a patient number on a file somewhere. Truly these medical professionals have callings and not just occupations. I'm so thankful for their passion as well as their compassion. I also appreciated his earnestness.
I'll keep you posted but that's really all I know right now. No studies to really compare, so until I talk with my local rads doc, we'll just bounce that beach ball of photon versus proton around... *doink doink doink*
I can't be the only person who is stressed out over the election today, so I figured I'd share the absolutely gorgeous Ohio morning I experienced today. As always, you can click on the photos to enlarge them. Enjoy! And vote!
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!
