06-02-2020
Chemo today, and I’m on the backside of the 12 treatments with only 5 more after this one—at least this schedule.
I asked Lili if I could grab a photo of the port needle to show since it makes no sense to me how something that is akin to what you would see of those that sew leather, and how it is not going to poke right though the bottom of the port and kill me.
They numb the area, to a point, with a cold spray, but it’s still a poke though skin and into the port itself. It’s quick and the pain is over very fast, so not bad at all, but the needle still throws me off, with the very large appearance that doesn’t look like it’s the right one for the size of the port.
Luckily, the nurses have to certify in using ports, so that is also a comfort when that needle comes toward my chest.
“Breath in and out, one, two, three, poke.”
No one told me that the chemo effects are cumulative, until today. No wonder I felt at my worst last week, but at least I know that now and will plan a little better in the future.
The fatigue has a life of its own and I’m going to attempt to describe what it feels like, since I never really found much about that part of the side effects, other than to expect it, but not much about what it’s like. I know it’s part of the deal, and different for everyone, but last week was by far, the worst in terms of tired, and I never saw it coming. That might be my advice to others, prepare that it might be very harsh, and consider arrangements for rest and recovery, as best as you can.
Physically, there is nothing that I can relate to in my past experiences that gives the big “F” an easy explanation, so I’m going to start from scratch so others can get a sense of how chemo, et al, feels to someone going through it.
Starting at my head seems logical, and because I’m often dazed and staring into la la land at times, it seems like a good place to begin so I can put my thoughts into words.
I still feel like there are points in time when a deer in the headlights of a monster big rig is me, and it manifests a paralysis that overwhelms to the point of my brain shutting down, like shifting into low gear and putting on the emergency break.
I can’t move, emotionally or physically and that is hard for me, since I tend to move a lot, and I find myself scrambling to collect my thoughts and make them make sense, and that is clearly not in my wheelhouse, but there it is and those 18-wheels are barreling down on me, I can’t move and it’s even hard to breathe.
At other times, it’s like those dreams where you want to run from the scary thing that is snorting and drooling, and as you turn to scramble, you catch glimpses of long, slimy teeth that are pointy and glistening in the street light, and it’s about to touch you with its filthy, fingers that look rotted and bloody.
Try as you might, you can’t get your legs to move, or your mouth to scream and it’s even more terrifying that you are considering giving up/in to the evil thing just before you wake up in a cold sweat, gasping for air. It’s like that, only I can’t wake up from this when it’s about to grab me from behind.
Continuing, but still focused on my head, the physical symptoms of ringing in my ears, eyesight strain from dry eyes, and an on-going, runny/bloody nose remain, but at least my daughter Tiffanie found an essential oil nasal spray that seems to be easing the symptoms in my nose a good deal, and it’s only been one day, so I’m hopeful.
I know I’m 65 years old, but until all of this, I only had some fine lines which have now turned into deeper wrinkles due to the extra dry skin chemo gives so generously, so I’m trying some products that I hope will help. I have received some awesome products from friends and students that are showing some promise, and Tiffanie who used to work in the field, recommend some products that are all tested and natural and no added junk. She just gave me some samples to try and I’ll report later.
Working my way down, my bloodwork, heart and lungs are all reported good, as I had my first in-person exam yesterday with Ellie the PA. My weight is good and have only lost a little, which is what they want, but it would be real easy to loose a lot of weight due to changes in my tastebuds, and lack of appetite. I could easily fast every day with the lack of desire for food, but I press myself to eat because I need the protein and the calories to have any energy.
The surgical scars are still healing, but the lymph incision is pretty much disappeared, it’s only the tumor incision that still has some bruising and hardness, but the surgeon assured me, it will calm down even more, it’s just a lot of damage to the area and it takes time.
The gut is doing better when I began to use the Imodium prophylactic style, where I’m taking a pill each day, after checking with Ellie who thought that would be okay. Since doing that daily, I am doing much better in that area, and only 5 more weeks of the chemo drugs to go, so some end in sight, no pun intended.
Moving down my body, I still have hair in areas I wish it would fall out, such as armpits, legs and upper lip, but at least I still have eyebrows and eyelashes, which I’m grateful to have for a bit more normalcy.
I do have some pain in my joints, but it’s easy to handle with some Ibuprofen, however my lower body feels a lot of the fatigue. My legs feel heavy and even with daily stretching and stair walking and such, its hard to move at times, but I’m still pushing myself to stretch and do some weights for my upper body. I have a Pilates chair coming, and will work on my core when it arrives, and I’m actually looking forward to regaining some strength since sitting around for months, dealing with the fatigue and just the general malaise of being in the house for the past 3 months now has left me feeling flabby.
I often feel disconnected from my body and it sort of feels like drowning and trying to swim when there is no shore in sight, and then there is only sinking, sinking, sinking. The effort to try and swim overwhelms and I just have to lie down and rest.
Those support walkers with the built in seats look mighty handy, although I’m no where near needing something like that, and yet, there are times I appreciate that you can be moving around and have a place to sit just about anywhere. I might be a little envious.
I can still touch my toes, and do lots of yoga poses that require flexing, but I often feel weak, such as my hands that already had numbness and tingling from my neck issues, and that has increased dramatically with the targeted drugs I am getting for the HER2 + situation of the tumor, leaving my hands weaker. Putty is my friend and I’m trying to build some strength there, as well as limit some of the damage the targeted drugs can do to nerves.
That brings it down to my psyche which is good most of the time, but extremely fragile at others. Yes, there is depression and anxiety and sadness with facing one’s own mortality, but there in, also lies the push to get things done, to think about the “bucket list,” and push to find ways to give up so much work, and pinpoint ways to enjoy what I have left, and to be a little selfish in those desires, which is something that has been hard for me to do in my life, but I’m working on it.
Breathe in, breath out, one, two, three, poke my needs awake.