Exhaustion, malaise, wobbly AF

Yesterday I got the white blood cell boosting injection (I don't think that's the official title, but I think that's what it does here);  neulasta. It took 5 mins. I was feeling alright, had the nausea under control with zofran, compazine, zantac, tums, and dramamine. But still weak and shakey, mouth still sore and food tastes wrong. I ate a lot of healthy food throughout the day and fell asleep relatively early around 11pm.

At 4am I was woken by a pain in the ball of my right foot, it felt as if I'd bruised it by landing on it barefoot from a slightly higher height than expected... Obviously I haven't been jumping anywhere. I don't know if this is a little early symptom of neuropathy from the chemotherapy, or if it is a symptom of the bone pain which is a symptom of neulasta.

I'm tired and the small, hard cording that remains around my left chest is making it hard to type too much, so I'll stop.

The port hurts, a raw wound of an ache as you'd expect. I can feel the device, a hard lump grinding against things when I move my arm to type. Right now it overwhelms the nausea, weakness and aches because I'm half an hour away from my next dose of tylenol.

Unsurprisingly with all of these anti-nausea drugs, I'm a little constipated. It's only been 2 days but it only adds to the sluggishness and ache.

On the plus side, the L-glutamine and biotin seems to have really helped the painful mouth and throat, so I'll definitely keep doing that.

I haven't washed my hair since Sunday and I'm only supposed to wash it once a week at most. I've never left it this long between washes, not at this length. It's not helping the feeling of sluggishness. 

Today is the first day alone in a while. I'm a little shaky but glad to have the space to feel as truly disgusting as I do, without having to put a facade on it in any way. I feel pretty beat up, I'll take things slowly.

Nausea

Welcome to chemo and feeling really fucking nauseous all the time. 

It helps if I can eat. Eating is very hard, everything tastes weird and I feel like I can hardly swallow because it is so nauseating. 

I can can take another zofran in 30 mins. Eac=h minute feels like 20, so this'll be a long one...

ready?

Prepping for first chemo in a couple of hours... Port insertion was horrible, lay there under my plastic tent feeling them root about in my clavicle. And the pain yesterday evening became a bit unbearable, had to take a vicodin to sleep through it. It left me quite terrified about what shape I'd be in today, but now here I am, able to do my exercises on just tylenol. This "bounce back" of a sort, healing in 24 hours from this insertion surgery... it gives me hope that I am able to withstand the rigors of chemo while it ravages any microscopic remainder of the cancer.

Off to shower and eat in preparation now... wish me luck!

Fight-ready

When I was a kid, I went to a shit school in a shit neighborhood. So whenever the older girls were gonna have a fight, if they were smart, they’d take out their earrings (so the other girl couldn’t rip them out and tear the ears) and get their friend to hold them.

I kind of feel like I’m at that stage with the cancer treatments now. Someone hang on to my earrings, I'm going in...

Tomorrow at 7:30am (because mornings don't suck enough already) I have surgery to place a port into my chest which connects to my big vein (the one that goes to my heart) and then the next day they start my first 4 hour treatment. I've been going through every emotion imaginable over the last days, well... every negative emotion mostly, heh...

I don't want to do this. But I do want to live as long as I can in as healthy a condition as I can. So chemo it is. I guess I do want to do this if that's the only option... but the desire to run is strong. Just leave this existence and hide in the desert for a couple of years until I die, alone and in peace.

But love, there is so much love in my life. I love Joe more every day, and if I feel that way now after we've known each other for so long, imagine how much bigger and more beautiful that feeling could grow to be... Even now, I find myself stunned sometimes by how much love I feel for him. Just stroking his sleeping head has given me so much comfort when I can't sleep (and luckily he's a deep sleeper or it would suck to have your loving partner mooning over you while you finally get some rest! And my brother Sam, who has grown into such a nurturing and kind adult, who astounds me with his ability to calm and care for me, his partner, my parents, and even himself. I want to keep living to keep feeling these marvelous things, I want to keep watching people I love grow and change, even Joe's crazy kids! Isn't that wild, the little nutjobs are such a handful but somehow I've grown to care about them and love them, despite every attempt not to. It is incredible.

Friends have been offering to help and now I'm at the point where I finally know exactly when the chemo will be (every other wednesday), but I want to see what a treatment is like first so Joe and I'll do the first one alone on Wednesday... fingers crossed, and all that stuff grandma used to say. Actually I think she used to spit three times, both of them did in fact... but the english one only made a noise like she did in a very ladylike way, while my american/polish grandma would do it for real, only a tiny bit, but enough so I had a better understanding of the ritual involved. 

Do other people think their dead relatives are rooting for them someplace? It certainly comforts me to think about my grandmas, grandpas, and my baby brother all with me right now, sending me strength and love. 

Axiliary Web Syndrome

Have you heard of "cording"? I had not. It is also called "Axilliary Web Syndrome" which is slightly more descriptive of how it feels... Imagine if Todd McFarlane drew a bra and sleeve made by Spider-Man.

After a mastectomy and lymph node removal, apparently sometimes people develop this web of thin, restrictive cords which inhibit movement of the arm. I am one of those lucky few. This wasn't entirely unexpected, they just didn't tell me that, (of course). They already set me up with a physiotherapist and we've been working on stretching them out. When you stretch them out enough they snap and the other ones feel much, much tighter, which sucks. 

At this point (just over 4 weeks since surgery) I've done enough work to release most of these, so now the only ones left are around my armpit and breast. They're so tight that I can see the dent from the cords pressing across my breast and I can't raise my arm over my head properly.

This web of cords gets oddly tighter when I don't move much, so at night I have to wake up enough to remember to stretch out or sleep with the arm stretched enough so it doesn't cramp, but not so much that the pain keeps me awake. It's quite the little juggling act. 

On the plus side I haven't had any tylenol since this morning, and those worse off about 6 hours ago. This is the first day since surgery I've been able to do that, it's pretty great. And I didn't use any edibles yet either, just smoked a little. It's making me feel a lot better about how healed and strong I am in terms of chemo prep.

Heidi came over today with all sorts of recommendations and advice. That was precluded and interspersed with little questions about why on earth we'd been out of touch for the last 20 years... I found a lot of creative ways to say "I used to be mean and crazy" but she was really nice about it. Sometimes when I meet people from my past I can't believe how much they remember me, how many conversations they recall... I don't know if it's my past experimentations with drugs in my teens and twenties, or the experiences with surgical anesthesia over the last 3 years, but my brain is mercifully free of my own past conversations. I envy them a little their memories, but I don't know if I could handle remembering what a cock I used to be / still am!

Time to stretch again now. Gotta get these webs broken and soon.

The Fear

I just did a meditation where it told me to name my negative feeling, greet it, even personify it, so that it would create more of a separation between me and the emotion/thought, and so that it would make me more aware of it when I slip into that behavior in life.

My first thought was that if I'm going to have to be Superman to get through this, then my cancer is Lex Luthor and the chemo is Kryptonite. I'll have to expose myself to something that could kill me in order to kill off this murderous, devious interloper. Lex is weaker than me, so before the Kryptonite kills me, it will kill Lex Luthor and I will be saved. Weakened, but saved, and I'll quickly recover as Earth's yellow sun revives my super physique.

Yes, the meditation was talking about feelings. But it's really hard to tweeze out any one specific feeling from the massive pile of feelings associated with having cancer and the painful treatments for it. Fear, sadness, disappointment, misery... then all the mourning and pain associated with all of the loved ones I've lost to cancer, that keeps coming up unbidden. I can't help it. 

My oncologist at Cedar's, (the one I'm not getting me chemo from because she isn't local, but she set up the treatment plan) said a telling thing at the end of our last office visit. She was telling me what I could eat or do during chemo and finally she just looked at me with the saddest eyes and said "Just do whatever you can to maintain your sanity."

I'm trying to hard to prepare for this, I suppose I feel like if I dot all my "i"s and cross all of my "t"s then I'll have at least done everything I can to make this as good as possible. But it will be bad, even if I do everything right. This is known. I can only hope that my superhuman, Kryptonian invulnerability and strength will help me through this.

New chemo oncologist

My oncologist at Cedars suggested I find a local place to get my chemo, so she told me to find a local doctor willing to work with her. After phoning all the local hospitals and clinics and getting a lot of "I dunno" type of answers, I tried the American Cancer Society which somehow eventually led me to a tiny little local place that is only a 15 mins drive away. The doctor is a Chinese woman, same age as me, kind of disheveled and the building the office is in is having building work, so it was also a bit of a mess.

These things aren't great, but I really don't think they matter and more importantly, there were some pretty nice things about it too that I think make it a good option.

The two nurses in her office were incredibly friendly, communicative, and clear. (You know how in nice places they offer you a bottle of water? Well here they offered me a bottle of Ensure! I understand that people getting chemo need to keep their stomach full to help stave off nausea. Still, it was a funny switch and a reminder of the world I'm entering.) Anyway, back to the good aspects of this option. The doctor answers her own phone and is happy to answer any questions. This is big, since it was a bit tricky to get directly in touch with my oncologist at Cedar's. The office is small, on the second floor, and the parking is easily accessible (this is a big plus for when we have to drag 3 coolers of dry ice and cold gloves & caps to freeze my extremities - something I need to do to avoid neuropathy, where you hands and feet go numb or have pins & needles, sometimes permanently).

Right now they're trying to arrange to have my port put in by a surgeon next week. That's a rubber thing implanted in my chest which connects to my veins so they don't have to put a massive needle in my arm every time I get a treatment or some other medications. Although the chemo is only 1 day every 2 weeks (for 16 weeks), they're going to be giving me all sorts of other things to make it possible to give me this dense dosing (i.e. to elevate my white blood cel count) which may also have side effects. It's all pretty daunting.

Breast cancer - support group

I've got stage 3 breast cancer. Or I did. I'm not sure how to talk about it, since I had the tumors removed, but I still have to have a ton of chemo and radiation before I think I'm allowed to talk about this in the past tense...

Anyway, that's my life right now. It is pretty all-consuming, eating time and energy like no job, relationship, or hobby I've ever had. Every day feels about 3 hours long, and I never get everything I wanted to do done. Life feels very short, understandably since it very much might be.

Today I went to a support group for the first time. I still need to go to a specific breast cancer one, so that I can ask them if they have permanent boob cramp over the tissue expander, if they get still get itchy incision pain after a month, if their doctors are so uncommunicative and cheerful, if they were pushed into taking hormonal birth control in the past which contributed to the breast cancer, etc... But right now I have to say, it felt good simply to talk to women who are suffering with me, dealing with life and death in the same way. 

After the support group let out, I realized it has lasted longer than I thought, so I got a parking ticket. Another reminder that money is just fluid as fuck right now and cancer is expensive, gotta watch that shit. All the other women were talking about memory loss from the chemo, but I already have a horrible memory, what on earth will I be like in 4 months?!

A woman in the group advised me to find a way to work through my anger, actually she said "you'll need to drop your anger" (I'd been flippantly telling them about endo mistreatments contributing to me, or even giving me, cancer and I think a little resentment crept into my voice. I also might have said a few times that doctors are arrogant assholes who smile while they murder you, so ya know... yes, I was certainly exhibiting anger.). It sounded sensible, but in retrospect I don't know if I really can simply "let it go", I think it's helping me. At the moment, when I'm not angry about this stuff I'm miserable about it, so miserable that all I want to do is rock back and forth and cry (or run away). It's depressing and terrifying that doctors who I trusted to treat me for endo consistently mistreated it for decades with hormones and drugs which definitely contributed to me developing cancer, all the while making my endo worse too! If only I'd known that surgery was the only effective treatment eons ago, all of this could have been avoided. But I trusted my doctors. This means that now it is difficult to trust doctors now, especially the ones who are definitely treating me with poisons and radiations now! So emotionally, if my choice is fetal-position-fear-crying or strident-angry-ranting-woman, I guess I choose the latter...

I think I'm going to work on visualizing a third option where I'm some kind of awe-inspiring super hero like Wonder Woman or Supergirl and I blaze through my chemo like a champ and come out of this stronger and happier than ever.

Doctors are still bullshitting me now. The surgeons all withheld information (i.e. lied) about the pain involved with healing with a tissue expander in. I'd never have let them put it in if I'd known how it would slow and complicate my surgical recovery. I don't care enough about tits to be in pain for them for no fucking reason, and I made that as clear as I could to the surgeon. But the doctors all had this idea that I needed breasts, and they seemed so clear about it that I thought I should try it. I thought maybe my conflicted feelings about it were based on an assumption that I might not survive, but now that I'm on the other side of surgery I see that they simply did not believe me about my own feelings about breasts. Still, the thing is settling down now and I can't do anything about until I'm done with chemo and that's at least 4 months away, and probably a few months after that to recover my immune system before more surgery. Perhaps after radiation we can figure it out. They are sure they'll be popping in an implant. We'll see...

If I live through all of this I'll be pleasantly surprised. If I don't, I wonder what the hell people will do with all my junk. I'm not clearing stuff up, I refuse to waste my fucking time alive preparing to die so that the lazy cunts left alive don't have to go through any hassle. Nope, let 'em. If it comes to that, it'll be someone else's problem. The days are too short as it is, I have to funnel my energy into taking care of myself, not just physically but mentally and emotionally, it's all one big package. 

Tonight I'm determined to start another painting. I really enjoyed the last water color and ultimately, if I do anything at all with this sliver of time I have, painting has to be part of it. I want every aspect of my life to be like a work of art I perform for an audience of one - me! I think it's what I've always been striving for, but I forgot for a while. If one good thing has come out of getting cancer, it's getting back in touch with this desire (it's a need really) to create art, always.