Ozymandias*~~"Two vast and trunkless legs of Stone stand in the desert"~~aka "Still Standing"

[greatjohn]

well

...legs support us...support statues...support sofas. I'm still standing.

After going for 25 days of "possibly curative/remission(ative)" (according to my newest Radiation Oncologist) sessions of radiation....I now have had 3 PSA's since...and have gone from apps 6 to appx 4 to appx 2....and then last PSA back up to appx 2.5. This last "blip" up has me not feeling so optimistic....

My regular oncologist on the last resort...says "well...it may have bought a little more time". Buying time. That's a subject that could feel a doctorate thesis. Buying time ....at what expense and how much time and, well, lots of questions.

Still I see the Radiation Oncologist this coming Monday. Hoping he says that a blip in the downward trajectory of the PSA is NOT a harbinger of doom. Hoping...that's the important word. Hoping.

gJohn

*Ozymandias. A poem by Persy Bysshe Shelley(1792-1822)

[SuppWife]

So glad to hear an update from you!

How are you feeling generally from the radiation? Are you having proton beam or traditional?

Sending positive vibes for a good report from the RO and on your next PSA!

[greatjohn in reply to SuppWife]

I'm not even sure...the machine was an MRI guided machine...and suppose to be very accurate. I had my last session was on March 31st. The last 4 weeks during were hard and the two weeks afterwards. Mostly GI issues. Now I still feel more tired than I did before starting...but I've been on Xtandi for 24+ months at this point...so I'm not sure where my fatigue comes from. Several times during the day I feel great. I do need a nap or two in the afternoon. RE. the radiologist...I'm hoping (against the odds) that he says I'm on a good trajectory in spite of the upward tick of the last PSA. "The good news is...my bad news could have been worse" is my new mantra. I'm getting so tired of not going out to eat or to visit people. We're staying in almost 24/7 except to walk Sparky. The "Virus" is really bringing us down as is the unrest and toppling of statues all over the news. I want to more to Siberia where they just worry about surviving the cold...LOL. I think I would like it. The heat is unbearable here. "feels like" temps are around 100 every day with 1000% humidity.

How are you doing in your quarantine in New York. I hope you're getting to enjoy your park across from you a lot. Getting out doors is the best medicine.

big hugs,

John

[Hidden in reply to greatjohn]

That rt heats us up . I cant handle high heat after rt anymore. Fatigue is an sob for sure. Be well great John.🤙🏽

[treedown in reply to Hidden]

I am the complete opposite. Cold all the time and can handle the heat great, butbthwn I always could and by heat I mean 80s and 90s. The being cold could be from weight loss. I finished RT in mid March.

[Hidden in reply to treedown]

I cant handle either high heat nor cold anymore.. I’m a fickled pc bitch with no t .I must seek out everything that is “ just right” Goldilocks I am now. Sensitive to everything..

[treedown in reply to Hidden]

Fickled bitch 🤣😂🤣😂🤣😂🤣

[Hidden in reply to treedown]

I own it!🙃

[ctarleton in reply to greatjohn]

Hang in there, John. Some of the generalized, long-term fatigue might be from the Xtandi. Also the need for the naps. (I've had similar anecdotal side effects on Xtandi, myself. )

You might want to try Antarctica instead of Siberia for heat relief.

"...The remote Siberian town of Verkhoyansk is known for its extreme cold. ...But on June 20, 2020 temperature in the town soared to a high of 100.4° Fahrenheit. ... the hottest temperature ever recorded north of the Arctic Circle."

Stay Cool. ...... Groovy, too.

[greatjohn in reply to ctarleton]

the whole world is overheating...and I was hoping that the earth would shift on it's axis and South Florida would be MUCH closer to the North Pole! Antartica it is!

hugs,

John

[SuppWife in reply to greatjohn]

Hope you're doing well, Great John =0 )

[greatjohn in reply to SuppWife]

doin ggggreat...all things considered. LOL. I did radiation to the three mets that I had...two lymph and one bone in pelvis. The bone is ALL GONE...the two lymph are less than 1/2 what they were...my Oncologist has taken me off Xgeva (because of no longer have any bone mets) and I'm already feeling much better in the bones. PSA is stable and lowish (for me) 3.4 and I'm doing LOTS...cooking LOTS...resting LOTS...enjoying every day...but missing our summer holiday as we are stuck in the South Florida HEAT @! @ ! @ !

[SuppWife in reply to greatjohn]

That’s all ggggreat news!!! So glad to hear it!!! 😊👍

My husband starts proton beam radiation to prostate bed/pelvic region next week. His PSA is at .26 and stable the last couple of months. Still on Firmagon. It will be interesting to see what PSA does after proton beam. The docs are all very optimistic! ❤️🙏🏻 (knocking on wood!)

[Hidden in reply to greatjohn]

No more bone metzs? Great job! All that we can do John is to accentuate the positive .. everybody’s talking about the weather , but no-one is doing anything about it... that’s beyond our control. Summer highs will end soon enough .. maybe next year do the snow bird thing . ? Rest up and recovery . We can not give in to our nemesis.. Take care GJ✌️

[Hidden in reply to greatjohn]

Nice in the winters I assume?

[Grumpyswife]

As you well know by now, you roll with the waves. However, it does take an emotional toll. I know you are a very positive and hopeful person, yet realistic.

I have to smile when I remember last year-- you at the Minnesota Fair carrying your bag-- after all you went through at Mayo. Good thing you went last year as it's cancelled this year. We are in Minnesota now seeing my almost 92 year old Dad.

[greatjohn in reply to Grumpyswife]

Timing IS everything. So grateful that we made it last year. I was trying to plan a road trip to Maine this year to get out of the heat. I don't think we can do it. I already booked a place, but will be cancelling it soon. I was hoping for better news on the Corona virus front.

We were so lucky with timing in a multitude of ways (except for the catheter issue) ....Minneapolis where we stayed almost in the middle of the city was quiet and beautiful while we were there. Everything changes. I love my pictures posing with a statue there.....of Mary Tyler Moore....LOL. Hopefully, she is still standing.

Enjoy your father. My dad died at 92 years old...a happy old man with Alzheimers that didn't seem to affect his spirit...just his memory.

John

[Grumpyswife in reply to greatjohn]

I would enjoy those pictures. We will venture to Saint Paul next week but not sure if I am emotionally ready to cross the river.

Regarding a trip to Maine, the road trip part to get here was fine. We sought out isolated places to stay and were still able to enjoy local history and uniqueness of where we stayed.

PS I used to have a sofa similar to yours. Gave it to my daughter and she loves it just the way it is--all beaten up by her dogs. I want her to either get it redone or get a new one. Even offered to pay for it but so far it's a no go.

[Hidden in reply to greatjohn]

Who could topple Mary Tyler Moore? That would be a travesty . Who did Mary hurt?😔

[Tmetz]

Sending positive thoughts

[Tmetz]

I remember that poem from high school. Nothing really lasts. Impermanence is the name of the game.

[greatjohn in reply to Tmetz]

I used to have it memorized. Whenever I see someone with a lot of concern about making a name for themselves I think about the first few lines....🤔

[pjoshea13]

Ozymandias (Ὀσυμανδύας) - Greek name for the Egyptian pharaoh Ramesses II. Wiki.

[Haniff]

All will be well greatjohn

Chin up, it could just be a blip, 👍

My very best to you ❤️

Haniff

[greatjohn in reply to Haniff]

Thanks. I feel pretty much prepared for anything. Another day on the journey 🤔

[Hidden in reply to greatjohn]

Rest up and recover ... you’ve got that CRV just itching for road trips once you’re ready again ..💪🏼

[Haniff in reply to greatjohn]

Yup agree with Scott, take it out for a spin, that’ll raise your spirits up ❤️

My very best 👌to you

Haniff

[Hidden]

Nice carving on this leg and facia. Good job completing this newest treatment. Buying time? What a concept? What is life without hoe? Dam dismal ... You’re still standing and I know that you appreciate life. You’ve told us so . Your strong spirit give hope to us.. Pray for good results🙏🏼

[nobaday]

Were you undetectable at one point? If those 3 spots have been zapped good then the PSA should not be coming from them.

I had like 5 treatments and 70GY of stereotactic on my neck a year ago. No more pain in the neck! The radiation did not seem to fatigue me. Can you do the same exercise you were doing before. What scan did u do to identify just the 3 Mets? I like the stereotactic radiation because it’s very selective and should kill the tumour. And typically minimal short term side effects.

[greatjohn]

I wasn't ever undetectable since starting this(6 years ago) ....and since I assume the spots were "zapped good"....it has me worried it's coming from somewhere else. I had Axumin Pet Scan. I have one every 3 months.

My oncologist (radiologist) wanted me to come back after 3 months...and that's my visit on this next Monday. I await what he says now...he perhaps gave me "too much hope"....if that's possible. It has been really nice to have more than just "buying more time" type hope...and actual hope....but if it's been "false"...it was STILL a good ride! And, worse case scenario, I have hopefully....bought "more time". Because as a friend reminded me....a little more time can mean a BIG advance in Cancer treatment.

John.

[treedown in reply to greatjohn]

I had a whole inner conversation with myself soon after diagnosis if false hope is better than no hope at all. Pretty sure there's a term for it and the answer is yes. So keep hoping no matter what.

[RalphieJr64]

John, can I ask how do you feel physically? Any pain? (Bone, joint, intestinal) weakness, fatigue? Flashes or fever? Or something else?

[greatjohn in reply to RalphieJr64]

of course you may. I just feel fatigue and take a nap every afternoon. I'm sleeping well at night. Awakening a couple of times a night to go to the bathroom....but sleeping very soundly. My pain issues are neuropathy pain in legs and feet and occasionally a little discomfort in my stomach.....bowel movements are great. Overall...I feel very good and people keep telling me I look great for 63....and then when I tell them I'm Stage 4 they are really wowed. I also have lower back pain that I have had for a few years....from a herniated disc...I was going to a chiropractor before "the plague"...it's actually not been too bad lately, really. My joints do hurt and I have muscle weakness...but 4+ years of Lupron should explain that...and 2+ years of Xtandi. I am on Xgeva and I think I feel some strange pain in my bones at time.

Did I answer your question?

How are you feeling?

gJohn

[RalphieJr64 in reply to greatjohn]

Thanks for replying John. I’m off my clinical trial because it stopped working. Starting another in a couple weeks. I’ve been off for 4 weeks now. Having some sort of quality has been wonderful. No side effects. So I’m gonna enjoy myself these next two weeks. Going up to West Hollywood for a week. Restaurants shopping and hiking. Already been tested for covid. Bringing our masks and Lysol spray haha. I’m glad you’re doing well. Don’t worry about that PSA.

[Hidden]

Stay Hopeful and positive. Don’t dress rehearsal with worry .

Let us know what happens on Monday.

Love and light sent your way❤️🙏

[MateoBeach]

It is well known and common to have a PSA “bounce” after RT targeting PC as the cancer cells are slowly dying off. It can take many months to reach a true nadir. Hang in there. I am in that same boat.

[j-o-h-n]

Well, keep on standing.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/25/2020 6:37 PM DST