Brain radiation is a b****

[AnnClare]

I've got my 15th and final zap tomorrow morning, and part of me is wondering, "Is this last one really necessary?" This morning I woke up with a bit of a headache which, admittedly, I've basically been spared until this point. My head still feels disconnected from my body, and by the way my hands feel (functional, but I can tell my motor skills are off), I'm quite certain the hemorrhaging is ongoing (as the neurosurgeon indicated could happen - and there's really nothing to be done. Have to wait for the body to reabsorb the blood.)

I'm having to work extra hard today at moving forward. When I don't feel so great, it's hard to imagine I'll ever get out of the proverbial weeds. I was struck with a panicky thought earlier: what if the radiation is killing me? I know that's just fear and anxiety talking, as many a folk have endured more than I have, and are alive and well BECAUSE of radiation. Right? Oh, I'm trying to pull myself out of this funk, but I'm having a 'scared' day. I just want to feel better. This disconnected, out-of-body sensation is unnerving.

But I'm here. And I'm immensely thankful for that. I'm not going anywhere. Not like this, and not today!

[AnnClare]

I've got my 15th and final zap tomorrow morning, and part of me is wondering, "Is this last one really necessary?" This morning I woke up with a bit of a headache which, admittedly, I've basically been spared until this point. My head still feels disconnected from my body, and by the way my hands feel (functional, but I can tell my motor skills are off), I'm quite certain the hemorrhaging is ongoing (as the neurosurgeon indicated could happen - and there's really nothing to be done. Have to wait for the body to reabsorb the blood.)

I'm having to work extra hard today at moving forward. When I don't feel so great, it's hard to imagine I'll ever get out of the proverbial weeds. I was struck with a panicky thought earlier: what if the radiation is killing me? I know that's just fear and anxiety talking, as many a folk have endured more than I have, and are alive and well BECAUSE of radiation. Right? Oh, I'm trying to pull myself out of this funk, but I'm having a 'scared' day. I just want to feel better. This disconnected, out-of-body sensation is unnerving.

On a positive note, the Mr. and I made popcorn last night, which was the first time I'd had that snack in 1 1/2 years (I didn't dare attempt it while I had my ileostomy, and I was slightly concerned as to how my body would react now, even though my reversal was 7 months ago). No issues, as far as I can tell. When I went to bed last night, I thought, "Okay, tummy might wake me during the night," but no. I'll take that as a win.

So even though I woke this morning struggling a bit psychologically, emotionally, and physically, I'm here. And I'm immensely thankful for that. I'm not going anywhere. Not like this, and not today!

[MissMolly]

AnnClare:
I feel as though you and I have become kindred spirits in a way, walking through the terrain of uncertain health. Your writings often touch on issues that I also face.

Fear is a valid emotion for anyone facing a life-limiting illness. In the dark hours of the deep night, I most often confront the fears and uncertainty of my condition. "Getting better" is not in the cards for me. It is a reality that separates me from my friends and family. I use the analogy of cars traveling down the freeway, speeding along at 55 mph, iTunes playing in the background. My personal "car" has taken an exit off of the freeway. My travel with compromised health has taken an exit/detour off of the freeway of life that the healthy and able bodied live.

A life-line, of sorts, for me has been Palliative Care. I encourage you to enquirer into the availability of personalized Palliative Care for you.

Among its services Palliative Care provides me with a spiritual chaplain and a psychologist whose background is working with serious illness. I can be my true and authentic self with my Palliative Care team. I do not need to explain myself. They understand what it is to live with limited health and declining engagement. It provides me with a safe place to process my thoughts and feelings and to receive thoughtful and constructive feedback. The psychologist and chaplain are key in maintaining my mental health as my physical body fades.

Palliative Care sees me as a whole person, despite my health constraints. They give me support in real time. I would be much the worse without them.

Look to see if Palliative Care is a service provided through your hospital or cancer center. The focus is all about living your best life despite being in the throws of serious illness.

I "get" where you are, as best as I can. It is not an easy life place to be in.

One step. And then another.

Keep writing. Your are expressing yourself beautifully. In your writing is self-awareness and the tools that you need to keep looking ahead.

My spirit honors your spirit,
- K -

[ams5796]

You're entitled to have a "scared day." You're doing great and I'm so impressed with how brave you are. Love that popcorn news. Take it as a win, for sure. I'm nine years post reversal and still have my issues with popcorn and I love it so much. I just wanted to tell you that I'm sending out good vibes to you.




Ann

[Lee]

You're entitled to have a "scared day." You're doing great and I'm so impressed with how brave you are.
Ann

Ditto to what Ann said. You continue to be in my thoughts and prayers. I hope you start to feel better once you are over radiation.

For what it's worth, for me radiation was the WORSE. Made surgery and chemo easy. It was very effective for me and reduced my tumor size, butt it's hard. I so feel for you.

I hope and pray you start to feel better soon, butt during the mean time, feel free to "vent, scream what ever HERE". What ever get you through this, remember we are here for you,

Your fellow "ass kicker"

Lee

[AnnClare]

Lee,

Thanks for your input. I remember when I had to go through pelvic radiation, in late 2015, my onc had said it would be harder than the surgery & chemo. I'm hoping the same holds true this time as well, and that once this portion of treatment is done, I'll begin to feel better. Knowing that you found rad to be the worst part as well offers me some much-needed encouragement.

[AbbyDoo]

Hi Ann
How is your coconut today,?
I'm hoping today is a better day for you than yesterday.
Hopefully your having a bbq with friends and family today and your able to excape thinking about cancer for a little bit.
Always thinking of you and sending lots of healing prayers to you.

[Soccermom2boys]

Thinking of you on your last radiation zap--woo hoo, you made it! Hope the rest of your day brings you some peace and comfort with both your husband and pup.

[AnnClare]

Thanks for thinking of me, guys - I appreciate y'all, more than I can say!

Yes, had the last brain zap this morning at 8:15. Woo hoo! Been taking it easy today, lounging at home with the Mr. and our fur baby. The weather's been a little sketchy and since I don't want to get caught in the rain, I've been walking laps around the backyard instead. I feel that's a fair compromise, if not total substitute, for the neighborhood walks I've been taking.

I know rad continues to work even once the treatments themselves have ended, so I'm trying to prepare myself mentally if I continue to tire easily this week. Not being so critical or judgmental of myself is new territory that I'm still exploring, an exercise that is long overdue. (WHY exactly have I been so tough on myself all these years? And what good did it do me?!) I'm also inching toward getting used to seeing my ever-balding head (scalp is still too sensitive to take clippers to it to finish the job - maybe by the week's end it'll be ready to be shorn!)

I'm contemplating staying home tomorrow, but I'll wait until the morning to see how I feel. My husband still thinks I'm not ready to drive, but I can't bear to be driven around anymore! I'm immensely grateful that my mother-in-law stepped in the past 2 weeks to drive me to work and rad, but now I feel perfectly capable of getting behind the wheel. My commute to work does not involve any Interstate driving and takes 20 minutes max, each way.

More later, my fellow butt-kickers & rock stars.

[peanut_8]

More cheers to you AnnClare, and driving yourself around.

Hooray!

[Maia]

Not being so critical or judgmental of myself is new territory that I'm still exploring, an exercise that is long overdue.

Ahhh... the size of the crowd for whom that it's a long overdue exercise!! ; )
AnnClare, I'm sending you my best thoughts for you to have the best days ahead! One day after the other, enjoying it at its fullest --something I need to learn.
Hope you feel many here are sending loads of love your way.

[Steph20021]

Walking laps around your backyard is so smart, and is much more exercise than I've been doing. You are giving me a much needed kick in the pants! I'm rooting for ya!

[MikeManess]

Hang in there and keep fighting!