Dimly Lit Awakenings

[DRM18]

Yesterday I uneventfully finished my 3rd infusion of Gazyva. Starting Venetoclax on Valentine’s Day. Feeling great, better than I have in years, as I’ve posted elsewhere.

Awake in bad last night (thanks, IV steroids!), I dimly reflected back a bit on my CLL journey.

1st four years or so, I was oblivious I was on a CLL journey at all (lol). Bliss was ignorant.

1st six months after diagnosis, I was on W&W, trying my best to live in denial.

Then, last year, a bottom dropped out. I’ve posted of this elsewhere, but it culminated in 3 separate hospital stays, 5 weeks in a rehab facility, & an inescapable creeping certainty that CLL was gathering its darkest powers. What a jerk.

& thus, treatment. O+V. So far, so fantastic. Rather than suffering the claustrophobic horror of CLL slowly strangling me, I’m enjoying the empowering feeling that I’m disintegrating it, little by little, day by day, night by night.

How long will this feeling last? Hopefully the full year of treatment. After that, I dunno. I fear that, post-treatment, I’ll find myself once again awaiting CLL’s loosened grip to begin to retighten. & I don’t know what other possible treatments are waiting out there in the treatment pipeline.

So I’m really enjoying these-here present tense moments. It’s a cliché to “live in the moment,” one I’ve always told my ignorant self that I live by, but I’ve never been certain about it until now.

& then I fell asleep. 🙃

[PlanetaryKim]

It's so true that all any of us really has is this moment - cliché or not.

[cllady01 Former Volunteer]

the "twilight chronicles" when the sun is below the horizon, we lie in a between awake and sleep and chronicle the stages of our lives.

Your observation of needing to live in the moment---yes! And that is a bit of a dance from time to time, but it is the move I like to make, and is often helped by a good walk.

Yesterday, I was completely in the moment trying to catch a Beagle pup. She would run right at me then dart and run across the street. She would not stop for me or for her little boy owner or for a dog biscuit. When the boy and his mother decided they had tried long enough, they left the neighborhood, hoping the pup would find her way home which in not in this neighborhood.

It was very cold out, and I had to go in--but i could not ignore the fact that I knew the dog was lost and liable to get hit by a car. So coat and earmuffs on, I returned to the hunt.

When a plumber came to his truck, in front of one of the houses, the dog came from somewhere behind me and ran at him. She let him catch her, so I got her on a leash which she has not been trained to walk on--so the pulling and tugging made me pick her up and carry her--she was heavy for my weakened muscles and back, but I carried her a good block to my house and called for them to get her. She was wild in the house, had to be reprimanded and reassured (scared and untrained).

It was only after they came to get her that I felt the exhaustion and cold--returned to reality and wondered if I had done myself harm. But, the feeling I had emotionally was so lifting--I love dogs and I have found and returned probably 10 while out walking for my health over the years.. A good feeling and no harm done to my body--at least detectable as yet.

Daisy is a Beagle. I slept quite well last night.

I hope you will soon get a better sleeping pattern. So glad the Obinituzumab is doing its job for you..

[DRM18 in reply to cllady01]

Beautiful moment, beautiful story, cllady01. Thanks for it.

[cllady01 Former Volunteer in reply to DRM18]

Sweet of you to say that! Thank you.

[kathymac52 in reply to cllady01]

You are lovely person......and this story emphasizes how we must care for God's littlest creatures....

[cllady01 Former Volunteer in reply to kathymac52]

kathy, thank you for those kind words, I do have my moments of unloveliness--we are human, and as the cowboys said, can get burrs under our saddles.

As a caretaker of your husband in some dark hours, you deserve the "lovely" label. I was so pleased to read you were able to make a trip of a lifetime to Alaska.

I hope all is continuing to be well with you both--the winter you have to deal with is one I do not envy as one who once lived too close to Lake Michigan to be able to miss every blast of winter.

[PaulaS Volunteer in reply to cllady01]

Thanks for sharing that story, Cllady. Well done you!

Paula

[cllady01 Former Volunteer in reply to PaulaS]

Thank you, Paula, it was a pleasure to be needed in an instance that took me away from me and my worries. And, it showed me I could still be of use, while a bit slower in many areas. I would not have written it, but for DRM's "staying in the moment" words, which were beautifully written.

[PaulaS Volunteer in reply to cllady01]

There is something very therapeutic about being of use, Cllady. Especially when increasing physical limitations stop us functioning the way we used to.

I love animals too, especially dogs. If I'd been in your situation yesterday I would probably have done the same as you (well I would have tried, anyway).

Thanks for your post, DRM18 . I'm so glad you're feeling a lot better, and enjoying a sense of empowerment as you see your CLL disintegrate bit by bit... As you say, we can't know what lies ahead of us, but we can live in the moment right now - and enjoy.

Best wishes,

Paula

[Loveroflife]

Thank you for your update. I can’t wait to start my journey as I feel my CLL is literally and figuratively choking the life out of me. Today is a down day but I am encouraged by your journey. Hope you find joy beyond today and this year of treatment. Hopefully your remission will go well beyond years and you can be blissful once more.

[DRM18 in reply to Loveroflife]

Thanks for the eloquent reply! May you find plenty of room & time to breathe easily as well. & if you start treatment, you will.

[Loveroflife]

Can I ask why steroids? My doctor is being taught by me how to do the treatment so I was just wondering what kind of cocktail they are giving you.

[DRM18 in reply to Loveroflife]

What kinda weird doctor-patient relationship is that? Are they paying you I hope lol? Anyhow hawkeagle answered your question clearly, below. (Make your doctor pay a portion to hawkeagle 🙂)

[Hidden]

Steroids for Obinituzumab ialong with benadryl and tylenol are standard pre infusion procedure to tamp down inflammatory reactions.

The prescribing info including this and a lot more info is available online through the provider section of the O website

[Loveroflife in reply to Hidden]

Ok great thanks will look into it. I am an expat so I don’t have treatment options in the states right now because of insurance issues. I’m just thankful I found a doctor who is willing to administer this treatment where I live and I found a way to have it brought in to the country where my insurance will cover it. The only option I had offered to me was FCR and as I’m unmutated I declined this option.

[Hidden in reply to Loveroflife]

prescribing info:

gene.com/download/pdf/gazyv...

And just in case you are adding Venetoclax: rxabbvie.com/pdf/venclexta.pdf

[Loveroflife in reply to Hidden]

Thanks

[Loveroflife in reply to Loveroflife]

Appreciate the support.

[Big_Dee in reply to Hidden]

Hello hawkeagle

For my treatment of B+R and most of the treatments I am aware of include benadryl and Tylenol pre infusion. I did have some adverse reactions my first two treatments and was able to control adverse reactions with addition benadryl and Tylenol. I did this with doctors blessings. Blessings.

[Hidden]

DRM18, So glad you are having success, and coming into the light from successful treatment after what sounds like a journey through darkness!

[DRM18 in reply to Hidden]

Thanks so much hawkeagle. I used to romanticize what I thought was darkness when I was younger; what a fool I was. (Prob’ly still am.) Hope your journey lightens as well.

[may04cll]

To wax eloquently on CLL here on Healthunlocked , i'm digging it

[Lily_Pad_Master]

Beautiful post. Thank you for sharing. I try my best to focus on my footsteps and my breath. I don't always succeed, but it's a nice place to come back to. I'm MRD- on A-V-O trial at Dana-Farber. People without cancer seem taken aback when I say "When this cancer comes back..." They try to convince me to "not be so negative." I don't feel negative, however, because I know that better and better treatments are coming out all the time. That's why I'm the "Lily Pad Master." I will hop from safe Lily Pad to safe Lily Pad to the end of my natural lifespan. Some of those Lily Pads will be more comforting than others, and I firmly believe each will get me to the other shore. Anything else--i.e. maybe this or another treatment will be a "cure" (or a remission that outlasts my remaining natural life)--is simply a bonus. In the meantime, I breathe.

Thank you for your beautiful writing. It was your title that drew me in.

Best,

Glenn

[DRM18 in reply to Lily_Pad_Master]

Thanks so much, Glenn. I stumbled upon one of your lily-pad analogy posts a couple days ago, & I’ve kept returning to it in my little mind; it’s very comforting, & I thank you for that. My only real fear right now is that we’ll run out of lily pads. I feel like I’m on a big, solidly afloat pad right now (O + V), but I haven’t heard rumors of any “better” pads sprouting ahead of me just yet. Regardless, the waterscape sure is beautiful; time to take it in ...

[studebaker]

When I had Obinutuzumab treatment, the administering nurse was the one to notice I was reacting badly to steroids and when I asked if I really needed it, she talked to my doctor and steroids were stopped.

After that the infusions were fine.

Good luck with your treatment.

Dana

[Big_Dee]

Hello DRM18

That pretty well sums it up, we are on W&W forever. Blessings.

[Smakwater]

Deja vu DRM.

You've Spike the ball!

More to come, I'll be looking forward to it.

JM

[Hidden]

Hi hawkeagle. I know this post is old but after having a family member have a bad reaction to Gazyva just yesterday, first ever infusion, I'm curious to your experience. My family member can't get out of bed today and had to cancel their infusion today. Shallow breathing, overall weakness and heart rate is kinda up there to 92, when she usually has always had a a steady 70. Thank you.