Friday, 1/21 -- Getting "used" to the "new" "normal"

Now that a few days have passed on this new kind of chemotherapy, I am more familiar with what I can expect as far as side effects.

So far:
Slight numbness and tingling in the hands and feet.
Chemo Brain, for a few days. It gets better each day.
Weakness and fatigue. I feel like I haven't slept in days, but I can't take a nap. I just don't fall asleep.
Sadness. When I feel physically low, I feel sad and weepy. That's normal for anyone... I guess. It's normal for me. "Normal" is a funny word.

I slept on my side for a few hours last night. That has been my trademark sleeping position, but I couldn't do it while my back was sore. I curled myself around a pillow, tucked the covers in tight around me. Gently scratched my back and legs. Felt one of the cats creep in to lay in the crook behind my knees. It felt like I was being hugged to sleep. I could reach Lyn while she slept and I could feel her warmth. It flowed up my arm and through me. Heaven must be something like this.

Thursday, 1/20 -- Pain in the low-knee.

Overall, conditions have improved.

Yesterday I felt very run-down and weak. Also, my brain was in a bit of a fog. The side effects of the chemo, I must assume. Good old Chemo Brain.

I went to bed a little early and had a fairly good night's sleep. One odd side effect that was new: my knees were killing me. Deep hurting in my knees down to my feet. The heating pad didn't help, goofballs didn't help, and massage didn't help.

I spoke to the oncology team today about it and they said that it is 99% likely to be one of the side effects of the new bug juice. We'll just have to monitor it and make sure it doesn't get more severe. It probably shouldn't.

My back is much, MUCH improved. I'm feeling pretty good about my back right now. The steroids are doing their job, along with Advil.

I'm still getting used to the new bug juice. I do feel differently than I did with the last stuff. So far nothing alarming or severe, just a general "sick" and "ill" feeling. Plus the ever-favorite weakness. I just have to get used to it in a new way.

OR, I need to consider that this general malaise and sick feeling I have could be due to the inauguration. All that pompous excess is enough to make anyone feel sick.

Sigh.

Wednesday, 1/19 -- The good with the bad and the same old same old.

Results of Tuesday's medical roller coaster fun ride.

I wasn't able to get out of bed on Tuesday morning. My back was highly agitated. . 8:00, eyes wide open, couldn't move. Deep breathing.

I took some goofballs and waited an hour. I was able to get up enough to get my coffee, take more goofballs and slide into the day.

I even took a shower!

Anyway, we got to the appointment on time.

I'm back on the higher dose of steroid. Disappointing, but necessary. It may take a few days for the levels to level out in my blood.

Results of the CAT Scan.
Liver, kidneys and other organs appear to be in good shape. That's good.
My lungs, the area of most concern, also appear to be doing good. There wasn't any mention of new activity in the lungs. The nodules that were there, I think, are gone or the same. Not too clear on that.

The bad stuff.
There are two lymph nodes in my chest that are enlarged 15 to 20% over the last scan. That could mean that the bones in the area are showing "progressive disease". Or maybe the nodes themselves are showing "progressive disease". In either scenario, there's something growing larger that shouldn't be.

From the very start, I've had very few tumors that could easily be seen in a scan or x-ray and identified, without a doubt, as being a cancer tumor.
The original tumor on the testis, that was clear.
The tumor that was chewing away my pelvis in July. No doubt.
Everything else is too small to be classified. We just have assume the worst.

That's good and bad. You don't want these things to get too big. But when they are so small that they are barely identifiable... then it gets frustrating in terms of treatment.
Is it cancer? Is it just an enlarged node? Is it a piece of gum I swallowed when I was 12? Who the hell knows. Only a biopsy would be certain, but that could get messy.

So, there's these enlarged lymph nodes in my chest that may or may not contain new cancer growth.
There may also be bones nearby these nodes that have new cancer growth. Maybe not.
Maybe all the pain in my back wasn't caused by the "bucket lifting incident".
The oncologists seem to think that it may be cancer.

So what do you do? So what do you do?
So what do you do?

What we decided to do is to assume that it's cancer. Keep attacking it. Keep hitting it. Be aggressive. It cannot and will not get the upper hand in MY body.

So yesterday I started two new chemotherapy drugs. Out with old and in with the new.
All new sets of side effects to be afraid of. You know the lists, may cause drowsiness; may cause your eyes to shoot blue lasers; may cause instantaneous cranial explosions.

So far, I'm just feeling dull, groggy and tired. My doctor seems to think that I'll tolerate this chemo stuff just as well or better than the last stuff. That's comforting. I don't want chemotherapy to slow down my jet-set lifestyle. Com'on, I've got some extreme sports to run after! :)



I'm also scared. I'm tired of feeling scared and lost.
So is Lyn.
We're pretty well sick of this shit.

Tuesday, 1/18 -- Indulge me for a minute.

Take your hand and close my eyes,
Nestle me in your pocket where the warm lint collects,
I'll wiggle in deeper for the ride.
I want you to take me far away,
Somewhere warm and dry, someplace safe and secluded.
I want to be lost from the familiar for a while.
Take care of me. Let me rest from my fight.
I need to heal.

Find me a feather bed that envelops me,
Unbelievably soft and light, cool and warm at the same time.
I want to float on that cloud where I'm comfortable no matter how I lay.
A bed that cradles me like I was a careless child,
Or a chick in a nest,
Or a bear deep in his hollow.

Light a fire in the fireplace so the warmth permeates the room,
Not just by brute heat, but by glow and tender light.
I want to feel that light on my face with my eyes closed,
Dreaming of the Sun on a random July morning.
I'll dream of all the sunfish we'll throw back in the lake.

Bring me long-cooked, thick beef stew poured over mashed potatoes.
Oven fresh crusty bread that leaves my beard dotted.
Butter and eggs, a fresh brown sausage.
Toasted sandwiches with melted cheese.
Coffee that tingles my toes.
Feed me, let me belly swell Smiles of contentment as I sink deeper into bed.

Open the curtains to show me the snow falling on evergreens.
Birds fluttering about a feeder. A squirrel cracking a nut.
Unknown tracks across the lawn, crisscrossing off into the woods.
Let me see life carry on. Let me see it grow and live all on its own.

The pills and the serums will be there too,
Doing their just and righteous job.
Slashing at my sickness. Fighting the good fight.
Rub my head so I don't notice the pain.
Rub my scars so they don't pull at my skin.
Rub my back so I can sleep for chance to dream.

Leave enough space for my love to join me,
Nestled closely on the bed. Melting together as we float,
Fly away together, let the wind carry us.
We'll dream of our future, and count each other's eyelashes.
We are one. We are beautiful. We are lost.
Whispering softly in my ear,
Even if she has to lie to me,
That everything will be all right.

Monday, 1/17 -- I need a new drug.

Laid up with back problems again. It's taken me until noon today to get up out of bed, my back has been killing me.

I can't figure out any rhyme or reason to this nonsense. I do believe it has something to do with the change in my steroid medication.

My appointment with the oncologist is tomorrow. Of course, we'll spend a good amount of time talking about my back.

We should also have the news and results from last week's CAT Scan.

When I'm dealing with pain like this, it's very easy to become discouraged and down. There's nothing like severe back pain to take the edge of any positive attitude.

I'm still in a fighting mood. I know this is a temporary thing. This is different than what I've been through before, but it's not unbeatable.

What's hardest is that it makes me helpless, and puts more and more responsibility on Lyn. My soul mate is Wonder Woman. Beautiful, talented, strong and honest. She holds her own, and she holds mine too. She carries the weight of this house, three cats, two fish tanks, over a dozen plants and much more. Someone please give her a standing ovation, buy her a beer and give her a Nobel Prize for Amazingness.

The cats are more responsible and self-sufficient than I am right now. I don't know how to use a litter box. It looks simple enough, but I don't have that kind of balance.

Because of the pain and limited mobility, I think there's an outside chance that they'll want to admit me into the hospital for a day or three. They can monitor my pain and give me better pain bug juice than what I get in pill form at home.

To bring this pain under control, I'd be willing to do that.
In fact, I think I would do whatever it takes to smooth out this back pain. I don't know this for certain, but I think that people who live with chronic illness/pain would pay any price to be rid of it.

Cliche Alert
Nothing is more valuable than your good health. Cherish it. Do everything you possibly can to keep it for as long as possible.
It's a worthwhile investment.