My Body Under Reconstruction in These Foolish Things

  • Aug. 2, 2021, 4:32 p.m.
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  • Public

I posted updates on my head scan on the socials today, so I wanted to come back here and let you know that all looks clear from a vascular standpoint. The scans came back completely focused on the fact that I have a 2mm x 3mm aneurysm (unchanged, but still there) and really nothing else going on in the head that would explain the pulsatile tinnitus.

The PT is still there, but not making me insane or anything. I don’t hear it all the time - especially not while I’m at work all day. It’s probably because there’s some serious white noise going on at all times at the office. It’s when I get home that the pulsing starts and I hear it pretty much continuously until I go to bed. Luckily, it seems to go away when I lay my head on my pillow, but starts back up the minute I rise in the morning. Weird. But likely just another neurological side effect of the chemotherapy.

It got me thinking about how this chemotherapy affects every little cell in my body. There is not one bit of me that’s really the same since I started this… “journey” [side note: please know that every single cancer patient hates the word “journey”, okay? But sometimes it’s hard to find a suitable word. I have used “experience” before and that seems to work].

This morning, I got up early and did my cardio workout. I hadn’t done it since I moved because I had been using that early time to unpack boxes. Yes, I still have plenty of boxes to unpack and organize, but they are now tucked away in closets and such, leaving room and space to do a full-on workout. And afterwards, I noticed how much better I looked after a good sweat. Clearly, my body’s been needing to get the blood really pumping harder than when I walk the dog.

And after the workout, and after the shower, I took a good, long look in the mirror at my naked body and had many, many thoughts.

Breaking it down, let’s start at the top.

Yeah, I told you about the inside of my head and the mystery still going on up there with pressure and my pulsatile tinnitus, but also, let’s talk about the stuff that you can actually see:

My hair. Oh, my prized thick, red hair. It’s brittle and I’ve lost probably 35-40% of it. People don’t notice because I still have a lot of it (thankfully!), but it comes out in handfuls. When I wash it, the bottom of the shower is completely covered at the drain. It’s still shocking. Again, I’m still so grateful I have a LOT of hair. I think it’s the biggest reason people have NO idea that I’m going through cancer treatment. Or that I’m still going through chemo. The chemo that I’m on normally doesn’t make people completely bald, but many lose most of their hair. Some get so annoyed with the constant shedding that they shave it off. I’m sticking it out.

My face. Chemo and the steroids they pump in your body make your face get puffy and round. I’ve noticed this, but it doesn’t seem quite as noticeable as I’ve seen in others. What I do have are dark, dark circles under my eyes, heavy, droopy eyelids, and deep wrinkles on my forehead (no botox during treatment!). Sometimes when I get up out of bed in the morning and look in the mirror, I’m frightened by the person looking back. I look gray and sick. There’s no getting around it - EXCEPT after my workout today! I was pleasantly surprised to see the color back in my face. It made me know that a morning workout is what I need daily! After showering, I slather my face in moisturizer and sunscreen. One of the side effects of this chemo is hypersensitivity to the sun. As an already sensitive ginger, you can imagine what was happening before I knew I was soooooo much more sensitive? I was burnt to a crisp for a few weeks. Ugh. So many lessons learned during this…experience.

My chest. Same thing with sun issues. For the longest time at the beginning of chemo, I was getting a severe rash on my chest. After some super-strength hydrocortisone-type medication, I have somewhat gotten the breakouts under control. But the biggest thing about my chest right now is the mediport where the chemo is infused. It stands out like a giant lump on the right side of my chest. A big, angry scar sits above that lump. It is still very sensitive to the touch. I don’t even like clothes touching it. I wear a lot of tank tops. At work, I wear breezy tops that only brush against it. It’s a foreign object in my body. I want it out and yet, I know it is the portal that provides the entry of the elixir that kills cancer cells. It’s importance is immense. It scares me and fascinates me at the same time. I’m strangely proud to show off my port like a battle wound.

My boobs. I have always loved having small breasts, but now even more because I stopped wearing bras once the chest port was placed. Like I said, I hate things touching it, so bras are out. Yeah, my boobs are still small and perky (not bad for a 53-year-old, huh?), but they seem sad-ish when I scan down my body as I can see the highest of my abdominal scars not too far below and I remember how long it’s been since someone else has touched them.

My belly. And this is where it gets even more difficult. My belly has taken many major blows on the inside and the outside. It is bloated from chemo and scarred from surgery. I will say the scars are fading so quickly it’s amazing to me…but I can feel things on the inside of my belly that I’ve never felt before. I know it’s still healing from having many, many inches of colon removed (I can’t remember how much was taken because all of this has been a serious trauma that I think my brain is desperately trying to remove from memory = PTSD), but there are little kinks and I can hear sputters and squeaks and clunks (thankfully, that means the bowels are working!), but nothing is quite like it used to be. I focus on every sensation in the belly and below as I know that’s literally the source of my disease. I’m not fearful as I was before I knew that this was cancer. But my gut feels like a dark place right now. There’s a battle taking place in there and I need good to conquer evil.

My privates. Like my boobs, these intimate places are quiet. I guess doing part of their job, but not fully living their lives, ya know? There’s something known in the cancer treatment world as PCHP (Post Chemo Ho Phase), and I honestly can’t wait to be done with treatment and hopefully get to that ho phase. Right now, I go back and forth between craving the touch of someone else and being repulsed by the thought. Oh, and I haven’t gone bald down there either!

My arms and hands. Arms are a little weaker, simply from chemo fatigue and a lack of good workouts. Hands were taking a beating, I believe from the sun hypersensitivity and just all-around chemo sensitivity. They were cracked and bleeding a bit on the backs of my hands. Some medicated cream from my PCP seems to have cleared that up. But the big thing I’m trying so hard to avoid is the peripheral neuropathy in my hands and feet. This is a MAJOR side effect of this particular chemotherapy and can be permanent, so my oncologist has me report on ANY signs of tingling, numbness, pain, etc. The icing protocol that I use during infusion helps with this but doesn’t alleviate it altogether, so I have noticed the slightest bit of tingling, mainly in my index finger and my thumb on my left hand. I am hoping and praying that it doesn’t get much worse, but they say that infusions 10, 11, and 12 will be the kickers.

My legs and feet. Same as above with the peripheral neuropathy stuff. I have felt some tingling on the bottom of my right foot and maaaaybe a little in my left, but so far so good. My legs and feet still love to walk, walk, walk, walk, walk every single day. My life would be bleak without my daily walks with the dog. I am so grateful for every opportunity I get to go outside and walk.

And that’s how I feel from head to toe right now. The wild thing is, this could all change tomorrow. Did you notice that I didn’t mention a thing about being nauseous? Oh, and I was so nauseous yesterday and so NOT nauseous today that I forgot to mention it in the belly section!

I’m glad I got this out. Now you know a little bit about how my body is doing and how I’m feeling about it. Our bodies are miracles and they do amazing things and we tear the shit out of them - whether on purpose or not. I’m thankful to my body for doing it’s thing. It told me from the beginning that we could handle this, even though we didn’t know what was going to happen.

My body just knows. It knows how to repair and reconstruct. It knows how to keep going, even if my mind is sometimes frightened.

Keep it going, bod!!

Love,
GS


Complicated Disaster August 02, 2021

As above! Small and perky is just fine. And a great look with no bra ;-)
Also, morning workouts are the best! Specially when it's light outside!
Always thinking of you <3
xx

Ginger Snap Complicated Disaster ⋅ August 03, 2021

Hah...well, it doesn't get light here until 6:30am and I have to leave for work at 7am, so...I work out in the dark :(. Oh well.

Complicated Disaster Ginger Snap ⋅ August 03, 2021

Ohhhhhhh. The whole concept of leaving for work is alien to me now! 🤣🤣 Xx

Elaine Benes August 02, 2021

Your body has been through it for sure. How about replacing “journey” with “crap”!

Soliloquy Elaine Benes ⋅ August 02, 2021

LOL I am 100% mentally replacing the word "journey" with "bullshit" from now on. E.g., "Since I've been on this [bullshit]..." Totally works.

Athena Soliloquy ⋅ August 02, 2021 (edited August 02, 2021)

Edited

That’s totally was I was thinking. Journey is ridiculous. Bullshit hits the nail on the head. “Ever since I’ve been doing this cancer bullshit …” yeah, that’s the direction I’d take it, because I find it way more fun to be subversive than reverant.

Ginger Snap Athena ⋅ August 03, 2021

I'm agreeing with this more and more! Wading through this bullshit.

Ginger Snap Soliloquy ⋅ August 03, 2021

Yes, yes. Bullshit. Also, ass-fuckery. I think that works too (almost literally)!

Ginger Snap Elaine Benes ⋅ August 03, 2021

Ah, I love these notes!! OK! CRAP and BULLSHIT it is!

Complicated Disaster Ginger Snap ⋅ August 03, 2021

Yesssssssssssssssssssss!! xx

Soliloquy August 02, 2021

This is probably the most real thing I've ever read from someone with cancer. You never hear about the details until you're on your [bullshit] and by then it's already scary enough. Knowledge is power, thanks for sharing.

You're almost there! You can do this.

Ginger Snap Soliloquy ⋅ August 03, 2021

Yep. On my bullshit! And here to tell the story. It feels good to get this out. After I wrote this entry, there were about 12 things that popped up that I wanted to write about, so I guess more entries!

And thank you. I soooo appreciate the encouragement ❤️

ODSago August 02, 2021

Hugs to you, a brilliant spokesperson for so many who want to know how this disease is for others. Of course it is different for most of us...my husband had chop chemo. I remember the shock when he lost the little hair he had on his head and found the shower really brutal on that tender skin. Love it that you are walking and it seems enjoying the life you have and speaking up about how things are with you. Rock on!

Ginger Snap ODSago ⋅ August 03, 2021

Yes, it is different for everyone. Even the folks I've met recently who are getting the same chemo as I am react very differently. One friend spent the weekend in the ER with bad side effects. It affects us all so wildly differently and that's what's kind of weirdly scary.

Thank you!! I love your encouragement. I want YOU to ROCK ON as well!!! ❤️❤️❤️

Queensuzu1 August 04, 2021

I have dark circles and lines on my forehead too. Have now started seeing dark spots on some of my fingers but thankfully no neuropathy. I also hate using the word journey, especially since it is also being used by my therapist about my marriage ending , horribly. Am very thankful I am down to three chemos.

Marg August 06, 2021

Thank you for sharing this with us. I appreciate learning about the nitty-gritty of cancer treatment which you don’t really get anywhere else unless you’re going through it yourself. Our bodies are little miracles really - I hope yours continues to heal you inside and out!

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