In Memoriam: Cagliostro

[Cagliostro]

Any answers on the source of all of this, Cag?

Kinda, and I'll quote from one of my long-winded posts further up the chain.

Also, before my infusion, I had a meeting with the doc who told me that the blood draw they took looked "very good," and suggested that the chemo is working. He also said he did what I think I heard as gene testing, and it looks like the primary source of the cancer is either the gallbladder or the pancreas. Both of which receive the same treatment, and is the treatment we are currently giving me, so yay! So the plan is to be stayed with.

I don't expect to find out which it is, but as long as they have the right treatment and it is effective, I'm good.

[Menolly]

Thanks! I must have missed that in my reading the post. Glad to hear treatment is on the correct course.

[Avatar]

Well, glad to hear things are going relatively well Cag.

--A

[deer of the dawn]

Late to the "party" as usual. Cags, I am really grateful that you are able to stay positive and conversational about this. As I watched my Mom's several years' struggle with C (she was far older than you are) which ultimately took her life, I learned that the best thing is to keep LIVING. Keep talking to people and going out and trying new recipes and ordering shit you like from catalogs. So I am glad to see you thriving while doctors jab you and stab you and inject and inspect you.

Big love from West Africa. <3

[Cagliostro]

I'm just convincing myself that it is going to shrink down and I'll be in remission for over 10 years before I have to fight it off again. Hopefully they'll have better solutions at that point.

It's better than freezing myself like Walt Disney.

[lucimay]

I'm just convincing myself that it is going to shrink down and I'll be in remission for over 10 years before I have to fight it off again. Hopefully they'll have better solutions at that point.

It's better than freezing myself like Walt Disney.

[Avatar]

I'm just convincing myself that it is going to shrink down and I'll be in remission for over 10 years before I have to fight it off again. Hopefully they'll have better solutions at that point.

Something to think about: The placebo effect is empirical evidence that it is possible for your beliefs to alter reality.

Just sayin'

--A

[Skyweir]

Actually dead set its absolutely true. Not sure we have worked out HOW that works but it absolutely does.

I think back at all the faith healings I witnessed AND experienced... that IS quintessential placebo effect at work.

Some call it visualisation, placebo effect, miracles, gods and devils ... ... but a name dont matter.

[peter]

I think it's got to be an essentially holistic thing - the power of positive thinking to effect your neurochemistry, that in turn effects other physiological processes including your response to pathology.

But I'm a little suspicious of it: it smacks of the begining of a pathway that ends with the feeling, declared or otherwise that people who don't overcome their conditions, don't get well, simply didn't want to enough. Or that those who want to bitch and rail at what has happened to them, want to shake their fist at the world for the cruel injustice that they are sick, and the world around them seems so replete with health, should not be allowed to, or even respected for doing so. As if not to bear your sickness in silence is somehow an insult, an afront to everyone else - that you should adopt a Kiplinesque 'If' style stoicism in bearing that which must be borne or you are somehow a lesser individual for it. Screw that I say. Be angry, be a bastard. Shove your illness down the throat of the world and make them endure it too. I mean it. If that's what works then it's okay. In the living of our lives we have paid the coin for this outlet at time of need.

[deer of the dawn]

What you just said, Peter, is what's wrong and toxic about a lot of false gospel and other religions out there... Just believe! Sorry you still have [----], you just aren't believing hard enough, it's all your fault. Which is nonsense. Life happens, cancer and other disasters happen, and while I believe God does have a big picture for all of space and time that is good, that doesn't mean he's a fairy godmother.

Okay, enough about me. I came in to see how you are doing, Cags, and offer hope, if possible. Not hope that the C will go away, but that you are alive today and you seem like a good person and I am thankful you are still here. None of us is guaranteed the next breath. That makes each day a gift (even the sucky ones).

I hope you are looking at, listening to, eating, touching, and feeling things that you love. Take care of yourself.

[Avatar]

Screw that I say. Be angry, be a bastard. Shove your illness down the throat of the world and make them endure it too.

Uh yeah, no. Not that you should be required to be stoic, and certainly not that "not getting well" is your own fault, but I used to have a client who was the most terrible person, and was suffering from brain cancer.

She would call us up and scream at me over the phone for refusing to do (complicated and extensive) free work for a cancer victim, and how could we live with ourselves etc. etc. It was awful.

Whatever the underlying mechanisms behind the placebo effect are (and we just don't know), my point was simply not to discount the efficacy of positivity. (And that reality is not as fixed as we think. )

--A

[Cagliostro]

In the middle currently of round 4, and ugh. Met with the doc who said my blood work was a little low this week, but wasn't specific as he has always been no help when it came to explanation of things, so I feel like it is more annoying and confusing to ask him about anything, and instead talk with the nurses who are much better at explaining. His bedside manner sucks and I'd get another doctor if I felt that the other side of things - the treatment and such - was suffering. He was 20 minutes late, so I also felt like any question I asked would be quickly brushed off after I asked my first question and that was the reaction.

So it turned out that my platelet count was low, was 72, and that if it was below 70 that they wouldn't give me the infusion. They did cut back on an aspect, but yeah. And now I get my blood checked each week. Hopefully I'll get some answers what I can do on my part to improve these numbers. I did eat a lot of garbage this week, and suspect it may have affected things.

I'm having a stronger dose of the side-effects this week too. I'm taking the same precautions as last time with my eyes, but when I take off the sunglasses, I get hit with it. I did see the eye doctor on Tuesday who said my eyes looked just fine, and shouldn't have much to worry about, other than old age and that my eyes get really dry during chemo. He gave several drops samples, and since drops kicked off a reaction before, he said it should improve with more use. I had a reaction with one of the drops today, and realized it was because I was scrunching my eyes shut, which has brought it on in the past.

Other than that, the cold sensitivity is bad already, and I had another thick tongue reaction this morning, which is unnerving. My hands are shaky and my joints sore frequently, and I keep getting thumb cramps. It's all unpleasant but for the most part livable. But it is getting harder and harder each time. I'm feeling down about all this as I was hoping I would at least get to the halfway point before it got difficult, and it is looking like it is already getting there. So I'm disheartened, but I'm still strong and need to take better care of myself. I need to eat better, exercise and stretch better than I have been. I just hope it makes a difference and that the next blood draw is better. Otherwise I fear they will take me off it or have longer between treatments which will make it less effective.

Stress is getting to me too, so meditation is also what I need. But for all these things to happen, I need some damn time. I dropped my therapist this week for that very reason, but we were having trouble finding things to talk about, and I felt I have been doing fine. This setback certainly makes me wish I didn't though, as she has been a good source for self care. But work has really been getting to me as it feels like my coworkers, including the boss who kinda begged me to come over after we had worked together at a past job, does nothing to try to train me, and since I'm stuck at home, I don't have the face to face I am used to.

But all this crap and bitching aside, my idea of bringing all this up is a bit informative. I wish I saw something about someone going through this before now so that I'd have some idea how to handle it. I'm sure there are blogs out there aplenty, but finding the right one would be difficult, I'm sure. I am still doing my best to remain positive, and during treatment I get a lot of writing done, which is great. But dammit, I just want it to get easier instead of harder each time.

[Menolly]

When SD and Dam-sel's son went through chemo for his acute leukaemia (different from the chemo for my chronic leukaemia), when his platelets dropped he would be given a transfusion. I think low platelets is an expected side effect of chemo. I don't think there is anything you can particularly do to prevent them from falling.

Are you also taking care to eat thoroughly cooked foods? I remember their son's immune system was highly compromised during treatment, also more so than my walking chemo, and everything had to be thoroughly cooked.

[Cagliostro]

Huh....I hadn't heard of needing things thoroughly cooked. Is that just the meat or everything? Because I eat a lot of raw veggies along with the cooked ones.

Ugh....not looking forward to transfusions if that is what will happen next. Wow, always a new surprise during these treatments, eh?

[Menolly]

The more I hear of your medical team, the unhappier I become. This should have all been explained as basic chemotherapy orientation.

From what we learned during Dam-et's treatment, you should be approaching everything as though you are highly immunocompromised. For instance, always use clean utensils in condiments like mayonnaise or peanut butter. So, use two separate spreaders for the peanut butter and the jelly, or wash the same one between using in the two different condiments, to avoid cross contamination and the potential of spreading germs.

I am a rare, basically raw, meat eater. But during that time all meat needed to be cooked to like 176 degrees, I think? It may have been even higher, temperature wise.

I'm pretty certain raw fruit and vegetables are fine, if they are prepared without the threat of bacteria from raw or undercooked meat spreading to them. So use different knives and cutting boards, or prepare the raw fruits and vegetables first and put in to the refrigerator to chill while you move forward with preparing the raw proteins.

I'm hoping your medical team has at least recommended hand sanitizer. We must have gone through three large bottles of the stuff during Dam-et's treatment.

I'm sure there are precautions I'm forgetting. But, let me do some searching regarding safeguards during chemotherapy. Maybe my medical team at Seattle Cancer Care Alliance has general information posted on their site.

[Menolly]

Here's what I found on my cancer center's website. This document is long, although you may find all of the information beneficial. The part regarding low white blood cells and potential infections, followed by food preparation begins on page 102 and goes through 118.

General Oncology Program Patient Care Manual

While platelets are mentioned several times, and a range is given of what is considered "low," I don't see any mention of bringing them up via transfusion in this document. Let me keep aearching.

[Menolly]

This is from the Mayo Clinic. It at least gives you very general information as to what low red blood cells, white blood cells, and platelets mean to your treatment, and how each may be addressed.

Low blood cell counts: Side effect of cancer treatment

Hope this isn't too overwhelming, and you find it useful.

[Cagliostro]

Thanks! I'll try to give it a look-see.
The thing is that I'm also subject to bad timing with the whole COVID-19 thing, but really, I wish they had given me any information. I meet with the doc every once in a while, but he never gives any information and always seems like he is in such a hurry. If I ask any questions, I usually get the brush off or "somebody will be in touch about that" or a long winded and unhelpful analogy that sucks. I've gotten to the point that I don't even want to ask any questions because I know it is useless.
I've asked his assistant questions and had them sometimes answered, but usually she routes it through him and back to me, and it seems....incomplete. Mostly they say just keep eating and do not worry about weight loss right now. But yeah, they really have given me nothing like this at all. I'll try to look it over at some point, but have found some about foods that are much smaller, but not about all of this, so I think a lot of this will be helpful. Thank you very much!

[Ananda]

Can, sorry to read about this. Hang in there. First time I'd checked this place in some years and was sad to read this. glad you have so many people in your life making things better.

[Cagliostro]

Thanks, and nice to see you about again!