back in the frying pan

[Tonwantonga]

in January i went in for a bone scan, after finishing the Provenge treatment. my PSA started edging up last July, still below 1, but it was time for a bone scan i guess. there was one new spot - in my neck- the radiologist and my MO agreed it looked more like degenerative disease than a met. didn't hurt, so we all felt OK with that decision. since I was in a pretty good spot, the MO decided to wait until my PSA got to 5 before starting me on Zytiga and prednisone, like he had thought of doing right after i finished the Provenge. I had a depression drug change from Zoloft to Duloxetine, and although i still wasn't giggling and giddy, my overall mood was lifted a bit higher.

so the scythe swings back - two weeks later my neck began to hurt a bit, then more. i went in for my 6 week PSA check on the 27th, and it had jumped 70 percent - still below one. my nurse practitioner and i decided we both wanted to know more about my sore neck - so she put me in for an MRI - first available was 3 weeks out, but she had added 'STAT' to the request, and before i left the parking garage, the schedulers called to say they had gotten me scheduled for the 28th. the MRI showed a 'marrow replacing lesion in the C3 vertebrae' extending into the left pedicle and the articular pillar. i had to look those words up, as i only speak English, but the pedicle is that extension on a vertebrae that is shaped something like a wing, and the articular pillar is the base of the ring that goes around the spinal cord. so i was referred to Radiation, i was in yesterday for a CT simulation and the fitting of a plastic mesh mask to hold my head in the correct position for 3 rounds of radiation. i saw my MO after, and after the radiation i get to start the Zytiga. the MO says it is rare that i would have only the one met, there are probably more but too small to detect on the bone scan.

I'm only 2 and a half years in to this fight, but i'm tired. tired of being tired all the time. tired of not feeling good, tired of not having anything that excites me. tired of never having a break from this shat, tired of crying, of seeing my wife cry. i never wanted to know this much about hospitals, or MRIs, or drugs and how they mix or don't mix with other drugs. tired of not having any interest in my wife, or what i eat. i never thought i would have the opportunity to miss my chest hair, or my testicles. I'm tired of going to bed early because my neck hurts, then tired of my neck hurting more when i get up. tired of seeing that total of what we owe the hospital going up every couple weeks. tired of all these pill bottles on my desk. tired of buying gas at the same gas station after each doctor visit, tired of the gray plaid cancer shirt i wear for every visit to my oncologist. tired of coming home feeling tired and dirty from being at a hospital that is clean. tired of seeing all those other sick people. tired of thinking how old the other people in the waiting room look, and then remembering that many are the same age as me. tired. and no break coming up. ever.

how do you guys 10, 15 , 20 years in do this, day in and day out? i'm not giving up, but i am certainly struggling.

[Hidden]

oh my goodness Tonwantonga, us too, same same same feelings and we are only 14 months into this!! I hear you loud and clear❤️

[maggiedrum]

Very sorry to hear Tonwantonga. You have certainly been and are still going through the wringer. I would wish that it all goes better for you. It does get really old with it all. I am getting more and more fatigued and it scares me a bit. My PSA is rising steadily with my only therapy left is chemo. I go to get new CT and bone scans tomorrow. I already had multiple lymph node mets. Frankly, the fatigue makes it double hard to go through the rest of it. Some magic to help you with that would be good but it is not available.

[Linebacker75]

I totally understand brother Tomwantonga. I’m right there with you. My journey with this horrible ef’n disease started 6/2012 and continues today. I most miss intimacy with my beautiful wife of 49 years and that along with sticking around as long as possible for her, my children, grands and great grandchildren is what drives me to push on. Sometimes hour by hour and sometimes day by day but still I push. My motto is “ if this cancer is going to kill me it will earn it.” I won’t let the bully rule my life”

Maybe a stronger antidepressant or mood stabilizer would help you. I am also on Duloxetine for lupron se and mood. None of us in this club asked to be in it but we all have found ourselves here. I’m not in any way saying my life is roses because it’s not by I try each day to focus on the good around me. Please consider seeking a good counselor or psychiatrist to help. I know that may be one more pill bottle but for me it was worth it.

Stay in the fight brother and take pride in the bruises and black eyes you put on your opponent.

God Bless.

Gary

[Scout4answers]

when I get the blues or start to feel brain fog I know it is time to get on my stationary bike and ride until it goes away.

Do you have an exercise routine?

[Linebacker75]

no stationary bike but I do have a Trek mountain bike. Ima gonna pull it out and go for a nice long ride this afternoon. It definitely helps clear my head.

[Carlosbach]

like Madeline Kahn in Blazing Saddles, “I’m sooo tired.”

I hear your description of your exhaustion and your feeling of being overwhelmed by the iron man challenge that is living with cancer. I think that all of us get caught up in that loop at times.

I’ve got several trick, tools and resources that help me. Nothing new and exciting, but helpful when I use them.

One small step, one deep breath, at a time - and maybe most importantly, stop and look for one thing that I find delightful, exciting or engaging. Following this practice I have discovered so many things that have continued to add value to my life, despite the negatives. I’ve found that one boost can keep me engaged and looking forward for the rest of the day.

Today I’m at Kaiser’s Sunnyside hospital in Portland, OR. and I just had a beautiful salad while sitting next to this fountain. It was so beautiful and restful. I wish I could share the video and audio.

Koi in fountain

[j-o-h-n]

Hey Ton, wanna conga? I'm tired of hearing you say your tired. I've been fighting those little pricks since 2002 and now I'm 86 years old and still fighting them.

The way to beat them is to say fuck it I'm gonna enjoy myself by laughing my ass off. No feeling sorry for myself, did that the first year and realized I need life. Sure I'm tired of all that shit we are putting up with but I'm not going to let those little pricks beat me.

Who thought that one day would turn me from a strapping 6' 1" 220 lb. average guy who once used to do 1,400 sit ups, 200 pushups and 200 leg lifts a day to an old man who loses his balance and walks with a cane. That one day was when the Urologist phoned me and told me I had Pca. Prostate? what fuck is a prostate? Now I know.

Live your life, Love your wife (and family). Stop thinking about your cancer and just enjoy everything you do.

FYI In the middle of fighting the pricks some new pricks showed up in my neighborhood via a melanoma on my neck. So they took it out and sure enough those new pricks decided to pass the ball to some newer pricks called Lung cancer. I fought them with Keytruda and we think we beat their ass (so far). So Ton if you need someone to make you laugh message me privately and I'll see what I can do....

p.s. Reminder if we ever communicate please keep it civil and no cursing....Regards,,,,(I'm tired)....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/12/2023 10:48 PM DST

[GSDF in reply to j-o-h-n]

Amen brother!...