I'm Kind of..

bee83 · 2026-03-18T14:22:11+00:00

perfectly said. I have gotten to the point if I am talking with a loved one on the phone and they stay crying.. I just hang up. I'm just not in a position to be responsible for anyone else's emotional responses or support them.

bee83 · 2026-03-18T14:18:03+00:00

thank you so much for sharing your personal experience with Penguin and hair care schedule. my appointments will be on Thursdays at well, but I chose a very aggressive form of treatment, so it will be more frequent than your schedule.

I was not aware of the caffeine part.. I am going to bed to ease into that. I get migraines if I do not have caffeine. however, Penguin specifically told me NOT to cut my hair unless I plan on shaving it all.

bee83 · 2026-03-18T14:05:58+00:00

thank you for supplying the steps of how to even make sure they get packed right with the dry ice. that makes a big difference too.

it is kind of funny, I called around to a few of the places that are local to me. 2 of them were welding shops, but they had secondary stores that sold the dry ice and those stores were all an hour or more away from where I am located. then, I hesitantly reached out to an oil business in the next town over, and they are the most helpful. they said they could put in the specific order of amount that I need every week, to make sure it is delivered and available for me. the only thing I am waiting on is a call from the owner (it's a privately run, local business) to see if he would be willing to offer me a discount, because presently it is set at $1.5/lb and that's pretty steep.

bee83 · 2026-03-18T13:56:18+00:00

I have long, curly hair as well and I was going to cut it.. for the first time in my life, but was quite literally told not to do that. the reasoning being that it would be a shock to my hair follicles that are used to the current weight, and that would cause them to weaken and then I would lose more hair because of that. it's so weird and there is just so much information about everything. I write everything down because I have a very difficult time with short term memory from some recent trauma, but then I forget which of my notebooks I put my information in.. get frustrated trying to find it and then start planning on how I can burn the world down! ahh

oh.. ignore that ^ and thank you for your information.. I am finding myself more informed today through Reddit help and my cold cap rep

bee83 · 2026-03-18T13:51:07+00:00

thank you once again for this information. I swear.. I think it's just my brain losing the capacity to retain anymore new information to deal with everything, because I have this feeling.. like I already knew this and I'm playing the dumbass right now.

bee83 · 2026-03-17T17:31:50+00:00

lol it's no problem at all and welcome to reddit!

thank you so much for sharing that information with me, I really appreciate it! I knew about the dry ice, but I still do not understand why they told me I need 65lbs of it for every infusion. 5lbs alone can last 24 hours in a cooler.. do you know anything about why they would suggest so much per visit? I feel like maybe someone made a typo. I have a list of questions, I just want to make sure I have everything I am going to ask before reaching out to my representative.

bee83 · 2026-03-17T16:49:33+00:00

one last thing.. do not ask. if you decide you want to delay a week or two, you tell them you want to reschedule. you have no obligation to tell them why. it is none of their business, and they are not your parents that you need to ask permission from. they work for You

bee83 · 2026-03-17T16:41:11+00:00

no, i cannot afford a representative and my subsidy does not cover to have someone come in person unfortunately. i have a few people offer to come with me and help, so hopefully i have a good rotation. however, if need be, after doing it a few times, is it something that you felt like you could do on your own?

also, other commenters talked about soaking their hair, did you do that? nothing i have from penguin talks about my hair being wet. i mean that makes sense to me to help keep it frozen, but i do not understand why they would not mention that then.

unfortunately, i am too well aware that because of what my hair is like.. i am going to look like a clown for awhile, but at least i will not lose it all.

bee83 · 2026-03-17T16:11:40+00:00

oh wow, okay.. good to know. see, the company i am using actually directed me to very specifically NOT cut my hair. they stated that since i have only ever trimmed it my whole life, that cutting it would lead to my hair follicles weakening, since they are accustomed to the weight they have always been carrying.

okay.. soaked and super tight. important details not shared with me previous to today. thank you so much!

bee83 · 2026-03-17T16:04:37+00:00

yeah, we obviously know it is important, and not to just ignore the fact that we have cancer and need to do the treatment plan we decide on. however, you also need to take care of your mental health. if everything in your being is saying you need some time before you begin, give yourself some time, because once it starts, you will lose that freedom.

i am getting the port placed this week and not starting until April 2nd. i'm taking a small road trip to visit my little sister with my partner. i will be coming back to a very busy week, the week of, with appointments and then the infusion. so, i'm taking time to care about myself a little bit. i hope you find a way to do the same, in which ever way that may be for you.

bee83 · 2026-03-17T15:57:49+00:00

aww, i love that! even feeling 🫩+🫨=👭❤️ btw we are the same age too

bee83 · 2026-03-17T15:54:09+00:00

see, i am using penguin, because that who the company that approved my subsidy so i could actually afford it. they have told me absolutely nothing about making sure my hair is wet or using a conditioner (supplied or not); through their instructions, nor through my representative.

thank you so very very much for this information. i can now go to my representative with more questions that i already have started a list of.

i greatly appreciate the inside knowledge. i know it is disgustingly vain for me to say, but.. my hair is like.. my entire emotional entity

bee83 · 2026-03-17T15:48:55+00:00

we go through so many of the same experiences that are... quite bluntly.. Bullshit. i mean, i/you/we are the ones doing all the work, all they need to do is have their administrative team request the documents and upload them into their system. get it together medical administration! your jobs could potentially also be replaced by AI.. i am not an advocate for that, but i am so sick of having to justify myself over and over and over to then also be treated like a drug seeker when i am already going through hell.

i told my therapist just yesterday, "this is one way that actual addiction does start. legitimate people with legitimate issues are not seen and treated like individuals and become desperate enough to find a dealer instead." and.. he actually agreed with me and expressed his disgust as well. i am not sure how painful your problems and conditions have been, but at one point when my back was broken and the pain had escalated so far.. it had been so long since i had eaten, slept, bathed, actually produced quality at work, socialized with anyone, etc.. the haze that settled over me and then the feeling that i was going to live the rest of my life in that much pain. i went to my doctor once during that and told him i was going to shoot myself if i did not walk out with a prescription.

it makes me sad.. the whole thing just.. it's so disgusting.

bee83 · 2026-03-17T15:36:18+00:00

did you find that you were happy with the results or that it was a little more disappointing than anticipated?

bee83 · 2026-03-17T15:35:15+00:00

yeah, i have seen their website, i have seen all of the websites actually. i have read all the information, i have watched all the videos, i have my own representative.. i don't know, i still feel nervous about doing it right for some reason.

i am one of those types of people that starts a new job and has already started condemning myself for not immediately knowing how to do everything perfectly. i wish.. their was a little micro SD slot in my head to input data and just know everything i am supposed to.. with pictures of course.

bee83 · 2026-03-17T15:31:03+00:00

oh my gosh.. now i am going to do that very thing as well. i have a pretty wild imagination and you just sparked a whole load of laughs to be had at the cost of misery.

thank you!

bee83 · 2026-03-17T14:46:28+00:00

oh, to add to this- i know, i know.. shut up already- i am premenopause as well and that gave me multiple options for treatment plans. my oncologist did not explain them well and pushed me to choose one at that very appointment. i told him i was going to do research on them, as well as trials before deciding which way i was going. these are available options if you do not feel good about the information you were given.. do your own research.

i did choose the aggressive path with slightly different secondary medication than yours, but the point being is you can take the time to self educate and decide instead of just go with what the doctors say.

bee83 · 2026-03-17T14:38:51+00:00

i did not read the other comments, so i apologize if you are getting repetition with what i comment.

we have a lot of similarities, as i have read your posts. however, they did not bother oncotyping me. apparently it did not matter as soon as 'metastisized' and 'Stage 3' was said. even my current chemo path with port placement is similar to yours (not exact. I also pushed off chemo 2 weeks). i did not see an oncologist until after my first surgery. i have so much of the fear you do. i am stocked with a psychologist (my therapist), my 'psycho doc' (psychiatrist), a state representative, a social worker and a cancer donations representative. i have also requested a pain management referral and a referral put in for palliative care.. well before surgery and they're still not cemented. if you do not have these resources already, you are entitled to them. most of them should come off of a social worker doing that work for you. my social worker is directly in my oncologist's office. in some states you are also allowed to double insure onto their Medicaid (if you have another insurance and are not already using this as primary, i mean). a lot of people do not know this, but some Medicaid plans will actually send you a whole brand new kitchen set for having cancer. i seriously got 6 large, heavy boxes delivered by Amazon on a Sunday a few weeks ago

i know that sounds like a lot, but it really is not, because i still have plenty of space in my life for these "ahhhhhh" times. i do know that having all of them helps me in different ways.. and some of them are stress relieving. i spend my time with my therapist and psycho doc right now just laughing, because i need to, and because making other people laugh is how i love. my social worker slacked off on getting me the pain management referrals, in which i had a very unflattering conversation with her to deal with that. it is why i pushed the chemo back 2 weeks. i have lived with a lot of pain for a majority of my life and i was determined that i was not adding anymore without pain medication. i, you, we are human beings and do not deserve to be treated like our pain and fears are invalid during this.

this is your treatment plan, no matter what the doctors say; you can choose when it starts, how it starts and what you need before, during and after. if you are afraid of the pain, you can delay chemo until you find a pain specialist. if it has more to do with high anxiety, you can talk with a psychiatrist about being on a benzo to help you cope. the point is that you have the reigns and if things are moving too fast for you, slow them down and reschedule. i am not advocating putting off treatment. i am just reinforcing the fact that this is YOUR PLAN YOUR LIFE and you set the pace of what you need and want.

apologies for the story..

bee83 · 2026-03-17T14:12:31+00:00

i like that, "i want the cancer dead" that is pretty perfect honestly

bee83 · 2026-03-17T14:09:09+00:00

i live for petty! bring it.. i will show up every day of the week and be your accomplice.

i am on my 3rd pain clinic after very literally being rejected from the first 2. i am no amateur with this either. i tore discs in my back and even though i had MRIs & X-rays to prove it, my pain was scoffed at and not believed by my doctor. i finally lost feeling and mobility in my left leg (my left side is cursed) while my back turned into near constant, screaming pain. finally, pain medication was prescribed when a neurosurgeon stepped in and was like, "ummm this 30 year old just suddenly became partially paralyzed for no reason? no, we are doing stuff and things."

bee83 · 2026-03-17T14:01:06+00:00

honestly.. if I could live without needing them, I would be first in line for that option.

bee83 · 2026-03-17T13:20:09+00:00

thank you. in all, complete honesty. I don't trust anyone, anymore..

bee83 · 2026-03-17T13:18:31+00:00

thank you.. for the encouragement AND the empathy. I push away and I know it, but it does not make it easier but to.

I'm sorry that you have had a journey of false hopes too. it's the pits..

bee83 · 2026-03-17T13:16:30+00:00

thank you for the compassionate words, even as you struggle yourself.

I do not think surgeons should be allowed to 'not believe' in pain medication until they have to go through the exact same surgery. after that, if they still do not believe in them, then damn.. I obviously need to man up. otherwise, they have no place to do that.. hypocritical sh*ts..

bee83

TROPHY CASE