Chemo Brain Revisited

Today I realized the importance of the after c part of this blog. I thought all the important stuff was in all the during posts. I couldn’t have been more wrong.

I worked this morning, then made lunch before I had to go to an appointment with my oncologist. As I was putting my sandwich together, my phone started to ring. It was one of the universities I requested information from, and I wasn’t going to answer. I wanted to eat my lunch in peace. But I hadn’t picked up the last couple times (because they always called me when I was at work), and I really wanted to talk to them, so I picked up.

So I answered, and we talked about the program I was interested in. I talked about my goals with finishing my masters, including my thesis and graduate certificate, and then my plans of taking the BCBA certification exam. I mentioned how I wanted to take next summer to focus on studying for the certification exam, and didn’t want to start any new education programs until the fall, at the very earliest, assuming I pass the certification exam on the first try.

I told the guy about how I was apprehensive about the certification exam because I still struggle to read and retain information due to chemo brain. That tiny little statement changed the entire course of our conversation. It turned out, the guy I was talking to is also a cancer survivor. He told me that he knew exactly what I meant about the chemo brain, and told me that he talked to his oncologist about it when he experienced it, and his oncologist made recommendations that assisted him in overcoming it. I won’t mention what his oncologist’s recommendations were, both because he had a totally different cancer and the actual treatment was irrelevant. The point is that just because my cancer is gone doesn’t mean there aren’t still going to be things that I should consult with my oncologist for.

I thought chemo brain was just something I was going to have to live with. I play games, try to read, and otherwise keep my brain engaged as often as I possibly can. I thought that would help exercise my brain back into shape. I didn’t know they were other options. Now I do.

And I think it’s important to share this information because other people might feel the same way. They may finish their treatment and think that there’s nothing else they need to do, or that there’s nothing else they can do, because the cancer is over. That’s simply not true. And these are things I may not have even considered if I hadn’t picked up the phone.

So at my appointment today I talked about two things. One thing was the chemo brain, for which he referred me to a neurologist. Dr. YB said the neurologist might have different activities and exercises for me to do to help alleviate the symptoms of the chemo brain. The second thing is the aching in my toes, feet, ankles, and knees. Whenever I get up after sitting for a while, I struggle to get moving and am so sore in those areas. Dr. YB knew exactly what I was talking about and said it was a side effect of the hormone blocker. He advised me to stay off it for two weeks, then resume for two weeks, and see how I feel. If it is the hormone blocker, then we may switch to Tamoxifen. So I’ll report back on that.

We talked about some other things, and I’ll share more about that in another post!

No news is good news!

Y’all. I’m so sorry it’s been over a month since my last post. Since this is a cancer blog, that’s a good thing, right? I really want to include some of the life after cancer stuff, so I’m sorry about that.

First things first (priorities!!), Barkley is doing great. He’s 12 weeks and had some more vaccines today. He’s still a maniac, and can be found at @sirbarkleyelkins on Instagram.

I’ve actually seen each of my three doctors in the last 2 weeks and everything is going great. Oncologist, breast surgeon, and plastic surgeon. I’ll be seeing them again in 3, 6, and 12 months, respectively. I don’t know what I’m going to do with my life not being dictated by doctors’ appointments anymore, with the exception of my Lupron shot every few weeks.

What else is new? Classes are finishing up and I’ll be off for the summer before starting my LAST official semester of grad school. I plan to work on my thesis this summer to wrap up my masters degree, and then take my last two classes in the fall to finish my additional graduate certificate. The end is near, and when it happens, I’ll have my Masters in Psychology with a certificate in Behavior Intervention in Autism. I feel like I’ve been going to school forever, but I love it, so it hasn’t been a hardship, it’ll just be nice to have one thing off my plate. The whole student loan payback thing is gonna suck though.

A couple things related to my recovery that I’ve been meaning to talk about…I still have no feeling in my breasts, though it is returning a little bit around the outside and working its way in. Dr H said the feeling may never fully return, but it’s interesting to see how it’s gradually coming back. Same with my belly area. On the surface, I have no feeling. It also feels really funny underneath because I can feel soreness in my abs when I workout, but that’s about it. Sometimes I can’t tell if I have a stomach ache, sore abs, or cramps because it’s so hard to determine where exactly the feeling is coming from.

Second thing is also ab related. Well, abdomen related I guess. The docs took the fat from my abdominal area on the outside of my abs. My “flab,” so to speak. So now my abs are right beneath my skin, and as I gain weight, I’ll gain it underneath them – visceral fat that hangs out around my organs. We all need some of that fat to an extent to protect our organs, but too much can be detrimental. I certainly hope to not harvest a whole bunch of that crap, and I’m working hard to lose it, but because I’m post menopausal due to my current maintenance treatment (Lupron and Letrozole combo), it’ll be more challenging for me to lose weight. That’s not going to stop me from trying though. In the last 2 weeks, I’ve dropped an inch around my waist and an inch around my hips. I’ve also lost around 5 lbs.

I had to change my nutrition plan to better suit my current needs and situation, and it’s working great for me. I’m still eating very healthy foods that I choose and I’m feeling satiated. It’s a good plan and SO easy to implement. I love it. Brad is even following it without difficulty.

Anyway, I do want to talk about the golf tournament, but I’m exhausted, so I’ll share that another day. Hope you’re all doing well!

3 more months

Another doc down! I went for my one month follow up at the plastic surgeon today. He said everything looks great. He felt around and said I don’t have any fluid build up and everything is healing nicely. Big change from the major surgery in May. BIG change. 

I go back in three months. The skin over my right nipple should be healed more by then and we’ll be able to talk about options for that, like a tattoo or possible reconstruction. 

Aside from my Lupron shots every four weeks, I don’t have another doctor’s appointment until March! Seems crazy since I have pretty much had an appointment every Monday for the past year.

Soooo, my plan is to return to Dr H in three months much thinner! I’m back to eating clean and healthy, and he said I could exercise, so I’m doing it. 100% balls to the wall exercise. I’m excited because this is the LAST TIME I’m going to experience that new exercise muscle soreness because I’m not going to stop this time. 

As Dr. YB said…I’m off to live my life!

Doc update

Nothing exciting.

He recommended half a Benadryl to help me sleep. Labs looked good. I don’t need scans unless my labs come back abnormal, so that answers that question.

And that’s it! I like those kinds of appointments. I’ll be there again in January for my shot, then my next appointment with labs is April 1. I have an appointment with Dr H for my surgery follow up in a week, and then I’ll be free from doctors for a little while!

Normal is on the horizon! 2019 is going to be a good year.

Drain free!

Can you believe I was more excited to share the info about the Relay for Life than I was to share the news that I’m drain free?! Hopefully for the last time ever!

So Dr. H pulled the last drain on Monday. He also said everything looked great, and my follow up is scheduled for one month.

It’s kind of weird to not have to see a doctor next week. Whatever will I do??

Anyway, I’ve been working hard, brainstorming some fundraising ideas. I can’t wait to get started and make some things happen. I’m also in my last full week of school. Final exams are next week. My upcoming holiday break is exciting!!

Hope you’re all doing well!

Coming at you live from my LAST treatment!

I can’t believe it’s been a year already and I’m done!

All is well on the doctor front. I saw all three of my docs today and everything is great. One more month to see the plastic surgeon before we schedule surgery. Also, it looks like I’ll have drains for the flap removal. Boo! And he’ll be straightening things up around the mid-section, so I’ll probably have a drain there, too. So it’ll be a slightly bigger recovery than originally planned, but it’s all good because it’s almost over!!

I’ll have more surgical info after that appointment, and I’ll share it then. Dr JB will also be there for that appointment so she’ll translate whatever Dr H says. Haha.

So good stuff here!! I’m healing and I don’t have to see my oncologist for three months. I asked him what I’m supposed to do now, and he said “live your life.” Haha, what does that even mean anymore?!?

I guess we’ll find out!!

One month

Quick update because life is crazy.

Saw Dr H on Monday. GH is getting smaller, he said everything is looking good and wants to see me again in a month. So I’m slowly graduating to longer and longer gaps between visits, which is nice. It’s likely that at my next appointment, we’ll schedule the surgery. He didn’t say that, but I’m guessing that. He did say again that he wants to wait for the right nipple area to heal, and the skin is still working itself out over there. So hopefully in a month, that’ll be done and we can get moving.

I also saw Dr YB on Monday. All is good there as well. I got my infusion and my shot. Only one more infusion to go! Woohoo! So things are lining up nicely for me to have the port taken out when I have the flaps removed.

I’ve got a backlogged post that I need to put up. It’s something I wrote this past weekend on my whirlwind trip to NY. I didn’t pay for the WiFi on the plane, so I couldn’t post it then. I’ll get it up in the next couple days.

Overall, I feel good! Still having problems with my feet, but that’s the only place I’m sore. Incision and breast don’t hurt, still pretty numb in those places because of the nerves. I feel pretty “normal” though! So nothing to complain about here.

I’ve got a fighter friend who is having her flap DIEP mastectomy tomorrow! Please keep her in your thoughts and prayers over the next few weeks! Best of luck to you, L!

Moving right along…

Yay! So I’m doing well enough that I’m finally graduating to seeing Dr. H every two weeks. It only took three months!

I had my follow up appointment yesterday, I did not need to be drained as I’m still slowly draining out the GH. I really want to share a photo, but it’s so gross looking, so I’m really holding back here. I’ll probably post one eventually.

Anyway, Dr. H said everything still looked good and sent me on my way. Brad came with me to the appointment, as he does whenever he’s off on Mondays, which is how my appointment filled Mondays came to be.

What else is new?? Not much.

I looked at a diagram of the layers of skin, fat, and stuff in the abdomen. I’m kind of wondering if what I see as the back wall of my GH is my stomach muscle, aka my abs, or flabs, as I affectionately call them. It’s kind of fascinating, to be honest. I can actually see layers, I’m just not entirely certain what they all are and I feel like an idiot asking Dr. H.

I’m also excited that I’ve been writing again. Over the weekend, I reviewed something I was working on last year and boom! It was like the floodgates opened and all the words came out. It was quite exciting–it is quite exciting. It’s touches on a tough topic, one that me and many other people I know (and don’t know) struggled with, infertility. I’m eager to get it finished and put it out there!

Umm…ok so non-sterile gauze pads are super hard to find. I need the woven kind, not the sponges. There are random medical supply places that sell them online, but trying to find somewhere local has not been easy. There’s a place in Mt. Pleasant, but that’s sooooo far away. Not really, but traffic sure makes it feel that way. I finally ordered from Amazon, but it’s not Prime shipping eligible, so I’ll see it never. Kidding, maybe Friday, but definitely not tomorrow. Gah, I’m so spoiled by Prime shipping! Brad was able to grab some from me from some criminals operating a medical supply store. I say criminals because they charge like $8 for 50 2×2 gauze pads. I will go through those in less than 3 days. I got 200 at the place in Mt. Pleasant a couple weeks ago for about $4. It’s a shame, really. The cost of medical supplies. I don’t know how people with chronic illnesses do it. Thank goodness for Amazon.

We won first place at trivia Friday night…I missed music trivia the week before, whoops!

Nothing else new to report. Had a cancellation at work today, so I’m hanging out at home, reading and writing, planning world domination. I really want a beach vacation. I had an awesome time at the Outer Banks a few years ago. I’d love to go back. Lots of AirBnB options there.

I’m going to sign off now, I’ll update more when I’ve got more to share. 😊

So that’s what we’re doing now…

I got up yesterday morning and felt pretty good about my appointment. I wasn’t feeling very sloshy in the mid-section, so I thought maybe I wouldn’t need to be drained, that maybe things were working in my favor.

The Dakins solution I’ve been using (the bleach stuff) has been soaking through the bandages and my clothes a little bit. Nothing I haven’t been used to over the last week of me having to pack this wound. So when I got out of the car at the doctor’s office and the waist of my pants was a little wetter than normal, I just shrugged it off, knowing he was going to end up re-dressing it anyway.

So I’m sitting on the bed/chair/bench thing in the office and he comes in, asks how it’s going. I say great. He goes to look at the wound and the gauze is tinged pink, I lamely say that maybe it’s the dye from my dark maroon underwear since the Dakins has been bleaching my clothes. He says he thinks I’m draining.

Nothing really surprises me anymore, so whatever.

I lay back and he peels the stuff off, unpacks the wound and there it is. Like an overflowing manhole during a Charleston flood…the gaping hole on my belly has sprung a leak and is spewing out lymph and whatever the heck else all over the place. I feel a gush of warmth over my belly and legs, lift my head up, see my belly fountain, and just lay my head back down.

There’s nothing in the universe to better describe that moment. Convenient that I found this meme the same day Mount Jennifer erupted.

Needless to say, I didn’t need to be drained. Both sides of my body were draining out of my gaping hole (GH). Fantastic, if you ask me.

Aside from that, things looked good. Dr. H was very apologetic about the fact that I was completely drenched, like it was his fault, which it wasn’t. I mean who the heck knew that was going to happen? I told him it hadn’t been draining like that, because I most certainly would have called, that this was brand new.

So now I’m draining a little bit here and there, which is totally fine by me because that crap needs an exit point! If it drains out my GH, then I won’t need to be needled.

Oncologist was uneventful. I only have two more infusions before I’m done with that. I can’t wait to lose this port. I swear it’s getting closer to the surface, like it’s working itself out. My nurse even commented on it looking close to the surface. Oh well, it won’t be too much longer and then I’ll be having it removed. Ta-ta port who remained unnamed. I can’t believe I never named it…I guess I always thought of it as Pete the Port because that’s what Judie’s port’s name is…

So I’m walking around, packing a washcloth in my pants to sop up any extra drainage so I can continue living my life. I do get a little sore in the mid-section here and there, but it’s tolerable. The washcloth doesn’t get completely saturated, so that’s nice, but at least my clothes are protected. But…awkward…

In other news, Brad and I watched Avengers Infinity War tonight, and now I’m officially caught up on the MCU. Now I have absolutely no idea what I’m going to do with my life. No idea. I mean, I’ve been living off my Marvel to-do list, now what? WHAT?!

I’m kidding. It’s not like I don’t have work, school, more work, Daisy, A gaping hole in my abdomen, Brad, food…I’ll be ok.

The ugly…

Seems like there’s been quite a bit of that lately. I had my weekly appointment with Dr. H today. He drained ten from my left and seventy from my right. It also hurt! I think I’m getting back some feeling on the sides now. And it was low on the left because…the fluid has been draining out my incision hole! Hooray for that. I mean, I can’t make this stuff up if I tried. But at least I know why there was more than usual discharge this weekend.

So it was an eventful appointment, and I’ll get to the real fun part in a minute. First, he prescribed me an antibiotic. I don’t have an infection that he saw, but he did take cultures to check. I guess it’s a proactive/preventative measure.

Because…

I am now the proud owner of a gaping hole on my belly. Yay!

Yeah, so he cut me open. Thankfully, I still don’t have any feeling in that area so I didn’t feel a thing, except a slight tenderness on the far left side.

The gaping hole, or GH, is about the size of a Kennedy half dollar. Yes, it is basically round. It’s also deep; at least an inch, maybe more. I can’t even describe what it looks like, except that it looks like guts inside. He made me look since I’ll have to pack it twice a day.

So I have this solution stuff that I need to use to wet gauze, wring out the gauze, and stuff it in the GH, one or two pieces. Then I cover it with another piece (and like 12 more on top of that if I don’t want it to leak onto my clothes) and tape it down.

I want to roll my eyes because I am so over this. And there’s nothing I can do at this point, except heal, and it’s taking forever. I wish for magic! Lots and lots of magic. Healing magic.

<<sigh>>

So the GH should heal from the inside out. I guess my incision was healing on the outside, but not on the inside, which is why he cut it open.

Seriously gross stuff. It was almost like being at the dentist, under Novocain, and being able to feel the movement and pressure, and hear stuff, but not feel it. When I saw the scissors come out, I checked out. True story. Not sure I’ll be able to unhear the snipping of my skin, but at least I didn’t feel it.

Anyway, in other news, the scab formerly known as my right nipple has fallen off, so at least my upper half is doing what it’s supposed to do. There’s a little bit of raw skin that’s still healing, but it’s doing pretty well. Nothing to complain about there.

I feel like such a whiner in recent days, but I can’t help it. I feel like this should be the good part of all this, but it’s not. I feel like I should be at least getting to the good part, but I’m not. I’d almost rather be back in the chemo phase because at least then I knew I’d have crap days. And what’s really mind-blowing is that I have a GH in my belly and I feel no pain. It’s just weird. This has all been so weird.