Bitter/Sweet: End of an Era Beginning of a New

[skipro]

Awe,

Where to start and what to say.

The bitter

My marrow biopsy at 13 months into V + O showed very little CLL. I was hopeful it would be gone for the 18 month biopsy but there was a little more disease, possibly within margin of error evidence that the Ven had maxed out on its usefulness. Plus the marrow cellularity had dropped from low (30% to 10-20%) with the questions of sampling error, v. effect of Ven that would eventually recover v. early signs of MDS. Plus I have realized for some time that my wife is the biggest source of anxiety and stress and suffering in my life. Here actions have been far more painful than CLL and all the treatments etc. The sweet

My doc recommended stopping the Ven and after 1 month I feel so much better! I am hoping for a several year reprieve from treatment and its side effects. I hiked the other day to a level I haven't in years, from 8,500 to 9,800 and got some pics of the last of the wildflowers and a few days later, the first of the Fall Colors and mountain snow.

While it's bitter to see the wildflower season come to an end, the coming of the Fall Colors and the snow that will bring more joy snowshoeing and skiing are sweet.

My plan is to enjoy as much as possible and take maximum advantage of the W&W period. After 2 of these periods, I've learned that staying busy and trying not to think about the relapse and complications that will come down the road does NOT help, and robs me of joy. So NO watch and worry is my goal.

Thank you to everyone on this site as you have all been great.

I plan on posting pictures of hope, but I am not sure I can answer questions or deal with hard news of others that leads to more worry on my part for now.

God bless all of you!

[Spark_Plug]

You have to do what's right for you. You've suffered, you've triumphed, but in both you've shared, Thank you.

Our paths may cross yet again, until then stay happy, healthy, and safe. 🙂👋

[skipro in reply to Spark_Plug]

Thank you

I try to be upbeat and yet real

[Newdawn Administrator]

Hi Skipro,

You seem to be experiencing that classic CLL malady of ‘what next and when’ that so many of us suffer. Sometimes words and experiences on the site reassure and bolster us and sometimes they induce greater fear. You obviously want to step away from that for a while and it’s totally understood.

You take advantage of a less stressful W&W and I hope you have many, many treatment free years with greater peace of mind.

Keep enjoying those experiences which enrich you. I’m sorry your marital situation sadly hasn't been one of them.

In terms of the boring admin stuff, I would advise locking your post to this site seeing as it contains quite personal stuff.

Best wishes,

Newdawn

[skipro in reply to Newdawn]

Thx

Not sure what locking my post means

[Newdawn Administrator in reply to skipro]

When you post (doesn’t relate to replies), there’s a box at the bottom before submitting it and the default tick is to allow anyone to see the post or change it to only this community. By ‘locking it’, only members of this community have access to your post denoted by the little padlock next to the post. Otherwise the post can be harvested and put on the web which is great for recruitment to HU but unwise if we are seeking privacy with content.

To change the privacy setting retrospectively on an existing post, you’ll need to scroll to the bottom of the post and click on ‘More’. The next step is to select ‘Edit’ from the drop down list that appears. Once you’ve done that, you should scroll to the end of the post editing frame. Select ‘Community Only’ by changing the tick to lock the post to our community and then select ‘Post’ to action your change.

Newdawn

[Agfar]

Your goals are sound. I wish you well. I look forward to seeing your photos in the future so for that to continue would be lovely. Maybe you need to extend your photo exposure and get yourself your own photo website. It would help in forgetting other things in your life.

[skipro in reply to Agfar]

Thank you

I'm in process of trying to figure out how to do the photo website

Fortunately my neighbor is a retired professional so I'm picking his brain

[Agfar in reply to skipro]

Excellent. I use a photo website template company (UK based). It's fairly logical, they do the behind the scenes stuff and I upload my images - for an annual fee!

[LeoPa]

Get rid of everything that stresses you, I say. Ever since I was diagnosed I flat out refuse to be stressed about anything. Someone ticks me off I quickly send him/her to take a hike. It helps that I'm a born hermit and don't mind being left alone 😀.

[skipro in reply to LeoPa]

Good advise

[skipro in reply to LeoPa]

Would that include a cruel spouse?

[LeoPa in reply to skipro]

Most assuredly. It's better to have no spouse than to have a cruel one.

[CLLCalifornia-USA]

Take one day at a time and look for the beauty. My grandson shared some wise advice with me this week. He said he never stresses over what anyone thinks or says about him. He says he knows who he is and what’s in his heart and mind. We can’t always change others but we can keep them from taking the joy from our lives. Such great advice for a young man only 24 years old. Good luck. Sally 🙏

[skipro in reply to CLLCalifornia-USA]

Great advice

I'm working on that skill, to not let what others say or do affect my happiness

Thank you

[JerrysGirl3 in reply to CLLCalifornia-USA]

Well said ❤️😊

[Smakwater]

Ever Consider the possibility of a trial, maybe one that would include identifying resistance treatment as well?

I know these types of endeavors can become a lot of work, may include travel, and are not for everyone.

Yet, they can also be fruit bearing if one is wired up for such a challenge.

I was instructed once by a Ski Pro to face straight down the fall line with the upper body in order to keep from falling. It seemed un-natural to stay pointed down in order to stay up, but it forced weight on the edge that produced a controlled turn. Much like sail tacking into the wind, it's works and it's weird until you do the math.

Going downhill fast does not sound right, yet it can be a lot of fun! If you know what I mean Skipro.

Cut the tops off those Volkswagens. "The Plunge" is in Telluride.

I just remembered that we are both in our sixties, best ski only powder on bluebird days.

Look forward to cool pictures.

JM

[skipro in reply to Smakwater]

Yea

I starting asking about mop up trials but got distracted by my mixed motor/sensory polyneuropathy work up, neurogenic bladder eval, cardiac eval for long QT syndrome, tooth implants and a bunch of other stuff so maybe next month

And yes I love your description of how you ski

sounds like me

at 66 I still take the plunge down the double blacks at Snowbird which changed most of their blacks to blue and double blacks to single black diamonds just to snub the bad PR a writer from LA gave them about how hard the runs are 😀

the arrow next to "A Different Breed" is pointing to Snowbird resort

color photo

[Smakwater in reply to skipro]

Indeed!, And I understand the distractions too.

They tell me "No rest for the wicked & the righteous don't need it".

[Danie50]

awesome! And thank you for sharing ! And I agree! I think we should watch and enjoy versus watch and worry !! Enjoy the new adventures that are on the way !!

[skipro in reply to Danie50]

👍

[Steffi50]

God bless you too skipro. ❤️

[skipro in reply to Steffi50]

Awe thank you I'll take all the 🙏 I can get

[tesoro5858]

I so enjoy your posts and photos. I feel a kindred spiritness (is that a word?) with you on a few things, although CLL-wise, I am treatment naive so maybe not with that so much. Your zest for life and love of nature is very inspiring to me. My roots are in beautiful New England. Our age is the same and expect that we have some commonality on how we view life experiences and how they have influenced us to be who we are today. Please keep us comforted with your photos and your medically-educated perspectives.Susan

[skipro in reply to tesoro5858]

Awe Susan, thank you and yes spiritness makes sense.

I need to get out there for the fall colors.

[JerrysGirl3]

pictures are so lovely 😊😊❤️

[skipro in reply to JerrysGirl3]

👍

[CycleWonder]

Skipro - go and enjoy your freedom! Hopefully I’ll still be here when you drop back in.😊

[skipro in reply to CycleWonder]

👍😀