"Stop having that feeling"

Ever since I was a little kid of 5 years old, I overheard adults telling each other off for their feelings.

"You've got to drop your jealousy."

"You have to stop being angry."

"You need to be happier."

it has always been incredibly obvious to me that no one has ever managed to tell successfully berate anyone else into a different emotional state, certainly not a positive one anyway! If my childhood taught me anything, it is that people process their emotions at their own pace. No one can force them to be a more enlightened version of themselves and in fact I find the very act quite disgusting.

According to all of these terribly clever people who have met me for 10 minutes at a time, I am "suffering" from ptsd and "must drop my anger if I want to get through this."

Was that intended to be supportive and helpful? The effect was to remove all hope, and plunge me. Into despair, so ... thanks?? I'm upset about the fact that my endometriosis was ignored and mistreated until I thought I was crazy, then finally given cancer from the wrong medication. But now I should also feel guilty about being upset? And how the fuck is that meant to help me?

i've stopped talking to my therapist since she forgot our last appointment. Her apology was heartfelt and I appreciate her work, but I don't feel like it was helping anymore. I wasn't strong enough and I didn't feel understood or heard at all since the chemo started. I don't really feel like anyone grasps how bad chemo is actually... it's become untenable on every level. There is not a point where I'm going to feel okay about this. I just can't. It's terrible.

I'm tired of doing that polite thing where lovely, kind people tell me incredibly obvious shit about myself and I nod and thank them as if they've finally uncovered the holy grail. I know why I hurt and I know it isn't going away. I won't ever heal completely from this, I know I'm tense and scared and broken. What do they want for noticing the most obvious thing in the world? I give them my gratitude but they're telling me superficial nonsense that is obvious to a child. Perhaps deep insight and personal work just isn't possible right now, while my body is depleted...

 

 

Cancer for profit

When I first found out I had cancer, a friend who was just recovering told me "it will be frustrating that life just carries on."

i thought she was referring to work and events, but the reality has been more depressing. Every day new bills arrive, with all of the many errors and inconsistencies familiar to Every American with health insurance. The many, many attempts to over bill and the many phone calls in w;hitch I'm told this is 'normal' or 'out of their control' (naturally neither are' true, but I'm not strong enough to argue, so what recourse do I have?) and it isn't just health insurance, every business I deal with in relation to cancer understands that I will give anything not to have to feel this way, and so the focus is on money and what they can get out of me.

It is incredibly depressing to have to be confronted by these constant reminders from my fellow humans that I am not only unimportant to them, but that they value me and my continued existence less than the paper money they can take from me. That in fact they would be happier if I would die and then they could take the money without even having to treat me, this is the meaning conveyed to me by the business of cancer and how it is treated.

It makes me want to die more than anything else about this.

The essential component here is to recognize and applaud the caring, warm, respectful people we meet along the way, because while the bad may loom large, every day I interact with at least one person who is kind and good. Every tiny interaction experienced with love and respect is another building block to feeling like I want to life in this world.

Politically this is a terrifying time, sad and worrying, but it is bringing so many good people out of the woodwork and this is to be applauded. These are difficult times and any person who is willing to stand up and behave with love and care is a hero and a force for life.

Good days and bad

Yesterday was brutal. That feeling when my skin is all on fire and my insides feel beaten had gone on for 24 hours and wasn't letting up. I was losing my mind to it just enough to stop knowing what to do, it was not good. Finally I spoke to my dad and he said "just take the meds", which I ought to have done immediately but somehow I needed permission... And he was right. That's why the doctor prescribed it, and it worked. I only took 1mg of Ativan, but it seemed to calm down all those misfiring neurons and I was able to handle the rest of the day. My friends online told me to call and friend, so I did and Ian brought over some thai food which tasted fantastic, (very happy to be eating again).

But it disturbs me that I needed someone to tell me to take my meds, and someone else to tell me to call a friend for help. I should have known to do those things before I got so messed up that I couldn't think straight. How sick do I have to get? I'm a bloody adult, I need to start feeling more comfortable making difficult decisions for myself.

Pain

Tearing through everything like a fire burning a little paper house. The walls and furniture of my body are smashed, all that remains is the raging wind of pain, sweeping across everything, changing the face of my physical existence until all that is left is a smooth, clean landscape of deep sand dunes, tiny grains forming shifting walls against the tsunamis of pain waiting patiently for the storms.

Yesterday I bawled and meditated and stretched, I ate and sang and danced. I cried and laughed and stretched my body out, open to healing and change. It was a long day with many emotional moments which made little or not sense. 

Some sort of special combo of the Taxol and Neulasta seems to have confined to create super intense pain in every part of my body. From what I've read and been told, this is normal and let's. Up about a week after treatment (so hopefully tomorrow of the day after). The doctor suggested Tramadol, but I think taking 1mg Ativan onceor twice week is probably enough. Still it makes a difference, I can think and breath, and. Most importantly gain some distance from my body - if I  think about my friends and family, I distract myself from my shitty cancer!

New Chemo: Taxol

Wednesday was exciting in that I switched from AC chemo (doxorubicin or adriamycin, and cyclophosphamide)to Taxol. Initially it was pretty bad, I had an allergic reaction to it. Shaking, difficulty writing, a rash on my face and chest, so the doctor gave me a low dose of steroids (dexamethasone 4mg 2 x a day for the first 3 days after chemo). It immediately helped, and I quickly noticed that despite the pain and exhaustion, the extreme nausea that accompanied the AC is dissipating! I still have a very fragile stomach, but I can taste food normally, and enjoy it again. It is wonderful!

I was hoping that I'd also have less pain from the neulasta but it's day 5 now and on schedule, I feel so badly beaten that I can hardly move. My torso and limbs feel broken and bruised. Which is why I'm signing off and lying down again - this sucks.

Feeling

Just under a week since the last chemo and as usual around now, I feel terrible. 

Terrible is really such a massive understatement. I feel horrific. I feel like I've been poisoned, which I have. 

I'm so tired of being beat down so hard every two weeks and then spending the entire time crawling back to some kind of half-life only to be knocked flat by another treatment.

Sometimes I tell people all the things that I'm feeling, but they get sad. It's the only way to stop them from trying to minimize it though. I think they must think that they can somehow comfort me by getting me to pretend I don't feel like I'm dying. But I do, and telling me I'm not is just fucking insulting, because getting through this is so hard, but it also makes me feel even more miserable about how bad I feel because it isn't being believed or supported. 

Upshot is that I complain a lot. I don't know if it's making everyone sick of me, but I don't know what else to do with these horribly negative feelings. I'm miserable, exhausted by feeling like shit.

Once more unto the breach...

Chemo tomorrow, then neulasta on Thursday.

By now we know exactly what that means. I've tried to warn the people who might be hurt that I won't be able to talk much (at least not coherently) or read (without puking) so communication is out for a few days. William is coming so I'll have help over the weekend, which is great. That tends to be when I get so wobbly that I'm not able to eat or drink enough, so someone to help me take care of myself is essential then.

And knowing that I'm about to take my fourth journey into the proverbial heart of darkness, I made sure to see people, be social. Shannon came over and hung out at the weekend, then today I went for lunch with Heidi. It was almost normal. And it's good to see them when I'm healthier because then at least I can talk and have a really good chat. Seeing them right after chemo is dismal, since I'm so monosyllabic and talking is so hard, better to see my more silent-type friends when I'm that much of a mess.

So I'm ready I guess... have to be honest, I'm not doing much to prep right now though. I've got the kit already in the bag, Joe is loading the ice into the cooler for the ice-caps and gloves. We've got lots of bland, mushy food I can eat when I'm wrecked... not sure what else to do. It's hard to admit that beyond some basic staying-alive stuff, there's really not much I can do to mitigate this experience. Just have to go and do it.

Money

I finally felt well enough to talk to insurance and the hospital for hours today. To no avail though, they're billing what they bill. They're billing each test as a surgery, and each doctors visit as a surgery (which insurance won't pay for in the same way as tests and doctors office visits) and neither team seems prepared to admit they're being ridiculous, they each say it is the other people's fault. 

This is so upsetting and disappointing. The hospital just wants to rush me into a payment plan so I can't question this anymore. The insurance are happy as long as I keep paying them nearly $500 a month not to cover things properly. It is all just so sick. 

It is patently obvious that neither industry has any interest in curing cancer while they can continue to fleece people who have it.

Still here

That one was a doozy, but unlike the last two treatments, it's a week later and I can actually deal with things. Doctors kept telling me that I'd have a "week off" inbetween treatments, though they did warn that the bone pain from the neulasta might make that difficult. But this week I feel like me again! Not a very good version of me, I'm weak and shaky, my stomach aches a little, my hair is falling out in handfulls, and I'm tired all the time. 

But I feel like me. 

I like this.

...

An addendum to my last post about bad test results: The lab seems to have mixed up (hey look at that, it isn't just doctors who are disturbingly mistake-prone... ugh) and emailed me the bloody last test results, i.e. the ones from when I had the infection/cold, after my second chemo. The actual test results came in yesterday and they're good, (apart from some weird bone marrow stuff that they expected from the neulasta. Let's just hope these assholes don't accidentally give me bone cancer.) Now I can finally start trying to get back to life.

Going down?

The blood test results came back from my pre-chemo test on Tuesday and yes, my white blood count is good (6.9, down from last week but still good), but nearly everything else wen't down and I'm a bit perturbed by that.

Lowered potassium will make it harder to get through the pain of neulasta (which is already pretty unbearable, so that's a shame) and how am I meant to heal if my protein, calcium, albumin, and red blood count are so low? Why have they dropped so low? Was it the antibiotics I took last week or was it a throat infection sapping me? And how do I bring these levels up?

Dr Tang says "everything is fine", which is worrying since it clearly isn't. So I emailed Dr Basho at Cedars and hopefully she'll be able to give me some more information about this. I don't know what I'm meant to do, I feel like I'm dying, but I felt like that after the neulasta last time so I guess I have to just ride this out and hope I'm not dying. This is miserable.

I'm watching Studio Ghibli films to try and keep my spirits up and Sam is here helping me out. If I am dying, at least it's nice here. I don't know how I'm meant to feel about this, or even what to do anymore.

It's coming...

The balls of my feet feel bruised, deep inside. The painful knot of neulasta has spread from my stomach down into my groin, up my chest, and now is beginning to wrap itself slowly around the small of my back and creep up between my shoulders.

It's like watching a slow tsunami roll in, too big to ignore or run away from... I'm forced to simply try and weather the storm, I can do this.

Third treatment

Yesterday I had my third chemo treatment and today my third neulasta injection. My brother Sam took me to both, which went very well. I was a bit nervous since he doesn't get to drive much, but he did great getting me there and back, and even more impressively his attention to detail and care made the 5 hours of chemo go pretty smoothly, and I was able to take dramamine and ativan so that I wasn't feeling so anxious and nauseous throughout. His calm and caring demeanor was so comforting, very happy he was able to come.

Right now I can feel the edge of the nausea threatening, looming as it does on a Thursday. I'm keeping myself as hydrated as I can and taking my L-Glutamine, hoping to head off the worst of it as early as I can. The neulasta injection feels like a bruise in my stomach, but that'll spread out by tonight and by Saturday I guess the bone pain will have started... Sam leaves on Saturday, but I've got Shannon coming by on Sunday for a bit and while Joe is at work on Tuesday, Ian will come by to help out. Hopefully by next week I'll start to recover. The pattern seems to be 10 days off, 4 days on, but my first treatment had brutal side effects because I was still taking that anti-stress supplement that had an amplifying effect on the chemo, and my second was hard because I got such a rough cold. Maybe it's overly optimistic, but I'm hoping I can weather this one a little better.

I guess we'll just have to see how it goes.

Shifting priorities

It became really clear to us (well, to Joe and then finally to me) that I can't work through this. With chemo every two weeks knocking me out for about 10 days, I only get 3 or 4 "good" days. And those "good" days feel a lot like having flu - the nausea and bone pain is still lingering in the background, my sciatica from the bone pain hasn't gone, my hands shake, I'm weak, and it's hard to do anything beyond care for myself.

More importantly, if I only have 3-4 days every 2 weeks where I feel even slightly capable, I need to do something nice and good for myself. Like yesterday, when Farne took me to the beach for a couple of hours. I'm lucky I live so close, we just drove half an hour and didn't even have to go on any freeways. And the beach is so beautiful, just glorious to wade in the ocean and watch Farne swimming out a little (so brave, it was cold in the see that day too!) It was so inspiring and energizing that I realized how essential it is that I do something nourishing for myself when I'm able to.

While I adore my work, it can't be all I do right now. I just do not have the strength to get through chemo and take care of all the crazy things it does to my body AND do a job, even a small one. It's very sad, and at first it scared me ("what if this is the last time I can work?!") but I have to look at the future and believe I'll have one, so that I can enjoy the time I have right now...

This is terrifying, nothing about it is easy. 

Side-effects

Over the last ten days I've been experiencing the side-effects of this last treatment. It's not great, but nothing about this is. I'm still dealing with the effects of the first one, but they're evolving too...

  • The bone pain caused by the Neulasta has irritated my old slipped discs. My back hurts and doesn't really seem to get better, even though I'm not doing anything that should irritate it.
  • About 30% of my hair has fallen out. Even using the cold-caps, we knew some hair would go, but we didn't leave it on nearly long enough after the treatment (1 hr instead of 4) and it doesn't cover the nape of my neck at all, so that's a strip about an inch deep that has just gone. And when the hair comes out it hurts, so my scalp has a sort of sunburned/plucked feel.
  • The nausea that I was experiencing lessened after the first week, like last time, but it is still omnipresent. For the last two days I've only used over-the-counter stomach meds (zantac, tums, dramamine), so that's an improvement.
  • It's still very difficult to eat dry or hard foods.
  • I'm extremely dehydrated all the time, just cannot drink enough. It's especially difficult because if I try to drink a lot, I can't.
  • The act of trying to put any large quantity of anything into my body is difficult right now, I don't understand it. All I seem to be able to do is take tiny nibbles of things or drink little sips. It is difficult to get enough and it seems to take forever.
  • Sleeping has been very difficult since surgery, I can only manage about 4 hours most nights, it's exhausting along with the weakness. I don't really know what to do about it. If I take something to make me sleepy like Benadryl or Melatonin, I don't sleep longer but I'm much more tired all day. Even when I do sleep, I have nightmares that I've accidentally rolled on to a side and I'm going to damage the temporary, saline tissue-expander or (on the other side) I've twisted the port tube which goes into my ventricle.
  • My memory has become terrible, and I get confused easily.
  • The chemo has brought on early menopause symptoms and I've got occasional vaginal dryness, which is surprisingly painful. But it's easy to deal with, I just use a little of the aloe lubricant that I already use for sex.

All of these symptoms are pretty standard as far as I can see. And there are some improvements too:

  • The L-Glutamine seems to work and I have minimal mouth pain now.
  • That cold I caught last week is almost gone (or throat infection, but I think if it was a throat infection, then the antibiotics would have helped a bit. Maybe they did, but the cold sure carried on being a cold all week.) It was very snotty. I'm glad it's tapering off now.
  • I was out of bed all day today, mostly sat on the couch doing some lettering for a comic for Joe, but it was still nice to be up. I couldn't have walked around anyway, I'm shaking I'm so tired.
  • Despite how badly I'm sleeping, today I persisted and after an hour I managed to go back to sleep for a few hours! With 8 hours altogether, I'm feeling slightly human.
  • This morning we has sex for the first time in about 5 or 6 weeks and I was on top, something I hadn't been able to do since before the mastectomy! I think that if I can't really get around, this is a pretty terrific way to get some exercise. It was difficult, but it was wonderful and completely worth it.
  • Farne has been an incredible support, making sure I eat and don't overdo it. I don't know why it's so hard for me to take care of myself. I think maybe I just can't mentally process how quickly this is happening.

Right... so I couldn't post this three hours ago when I wrote it because I suddenly found myself insanely nauseous, dizzy, there were lower abdominal cramps, and a dull ache in my stomach and lower back (where the old disc injuries are). I couldn't stop shaking and I couldn't imagine how I'd get off the couch. A Dramamine and a glass of coconut water perked me up enough to get to bed after an hour, but it was grim. Now I'm sort of alright, but still feel quite horrible. It's been nice not to use marijuana for a couple of days, but the without the nausea never entirely lets up and it is incredibly hard to eat or drink much past that feeling. I hate it. So exhausted now, must try to sleep...

Evolving language

Farne arrived last night and spent the day with me, making me food and letting me talk too much. I feel exhausted and energized, even starting to realize how much I want to get better and get back to work and life and being able to DO things...

(As an aside, while I'm happy that I'm able to recover from chemo and deal with this damn cold so well, it is bloody demoralizing to be so utterly wiped out from a day where I was mostly sitting on the couch, talking, with a little ten minute walk down the road in the middle of the day. How much more can I rest?!)

I've got to sleep now, but I wanted to note this nifty article Farne showed me, specifically this very insightful quote, (the ideas about fasting are interesting, but I really don't know that I can handle it, with losing weight so easily):

"Human beings have had no historical need to evolve language applicable to the sensation of being systematically poisoned. Such a vocabulary has never before been necessary, so it does not exist. Chemotherapy patients are therefore obliged to deploy a limited repertoire of familiar but hopelessly inadequate substitutes; words that can only approximate to the experience, but fail to convey anything of its true essence. So we say that we are tired, and feel weak; that we have no energy, or feel somehow unrecognisably unlike ourselves. What we really mean – and this doesn’t capture it either, but it’s the best I can do – is that we feel dead without having actually died. Chemotherapy strips away every last ounce of vitality or volition, until you are left only with the outward appearance of a living person. But you are a hollow husk, empty of all the essential constituents that make a person alive. It is a cruel irony that a drug designed to stop you dying makes you feel as if you have."

Rough week

Second chemo just flew right in and I zombied right out... Wednesday getting chemo was brutal, then Thursday and the neulasta pain had really kicked in by Friday morning. Jonathan came in the day and took care of me, acted like a proper nurse and did the job better than I would've. Heidi came on Saturday and it was a bit of a blur, we talked all day and I postponed drinking and eating when I really cannot do that. By Sunday night I had a cold. Dr Tang asked me to come in, then gave me an IV of fluid, prescribed antibiotics, and took some blood to test. 

The blood test results were good!
My white blood cel count is 8.5 (normal range is 4.0-10.5)
My absolute neutraphil count is 5.236 (normal range is 1.5-8.0)

That's nice, takes a lot of the "am I dying from this bullshit?!" fear away. Gives me the space to just hate having a bad cold and feeling so beat up. I'm not taking decongestants because I don't want to give my body more junk to be dealing with (when it's already trying to deal with the antibiotics and chemo right now), so I'm a snotty mess. The nausea is dealable as long as I don't move much and keep eating, taking lots of anti-nausea meds too.

It's pretty tricky balancing all this. I'm only coherent enough today to sort of deal with typing all this and emailing some people to ask for support. The problem with being coherent is becoming aware of how bad I feel, and much worse I felt last week, and will again next. It's like having a regular appointment to get run over. It really feels that way. Going to have to go do something else now because typing this making my cry all loud and messy. Joe is out, so I can't get too confused and forget to eat so I'd better stop typing now anyway. 

This is how I'm living; moment to moment, trying to remember how and when to eat, drink, or take medication. Everything else is a luxury that I can't afford most of the time.

Getting back up...

Today I took a blood test (13 days since my first chemo transfusion, 12 days since my first neulasta injection) and my levels did improve enough to do the next chemo tomorrow.

My white blood cel count is 5.7 (normal range is 4.0-10.5 and a week ago it was 3.0)
My absolute neutraphil count is 3.289 (normal range is 1.5-8.0 and a week ago it was 1.35)

This is cheering me up on a couple of levels. Of course I wanted to get the next chemo out of the way and stay on course with my treatment schedule. But it also showed me that I can go through absolute hell, feel close to death even, and then 2 weeks later my body is able to recover and regrow cells until I almost feel normal. The fatigue is intense and constant, but the nausea and total lack of coordination or ability to speak has pretty much healed. Knowing that I can recover and heal (quite quickly) from such intense physical lows is pretty miraculous as far as I'm concerned. It gives me a lot more confidence that I will make it through this.

Funny thing, once I started to believe I was going to make it through cancer, I started to see all the ways in which (although terrible) it is forcing me to deal. Suddenly taking care of myself and staying healthy is my biggest concern and more unusually, doing so is giving me a lot of satisfaction and even joy! Simply being able to eat again or do a little work is tremendously joyful. It's an odd word to apply to mundane tasks, but I'm so appreciative of being able to simply live. It's a real gift and I'm holding this tight right now. It feels good to feel good again!

Useful article about how to deal with shitty cancer feels

Back when I first heard I had cancer, I was loathe to tell friends and loved ones since the passing on of bad news isn't exactly fun. At the time though, most people made it very easy to talk about it and eventually I got used to it to the point where I could stop apologizing beforehand and simply state it as a fact about my life at the moment.

But some people reacted with fear and anger, expressing those feelings to me, antagonizing my own negative feelings about having cancer (which I have a lot of, obviously). Initially my reaction was to pull away, to protect my fragile mind from the negative fury they were venting on me. A friend (a very smart writer I recently met who educates people about people) sent me this article which I was able to pass on to those people and get a very positive result and I want to post it here so that I don't forget it: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Evil, or just plain nuts?

What would you call a doctor who tried to scare you about a condition you will definitely have to live with for the rest of your life? A bully? Sadistic? Insane? Cruel?

I keep thinking about the plastic surgeon who got angry because I elected not to have a double mastectomy (i.e. I did not want her to remove my healthy breast) and so decided to just say nasty things to me. The least of which I suppose was telling me that a lymphedema is "extremely serious. I have patients with arms three times the normal size and it is debilitating!"

Now what logical reason could she have for telling me about the more extreme versions of this disease that I will almost certainly have. They tell me that after the surgery to remove my lymph nodes is supplemented by the 6 weeks of daily radiation (to really kill whatever cancer is lingering in that armpit and chest area) the lymph drainage in my left arm will be damaged and I will have to wear a compression sleeve to encourage the arm not to swell up with discarded lymph fluid. It's pretty horrible sounding, but as many of my doctors have said, it is a hell of a lot better than dying of cancer. And besides, my left arm already has pain and movement limitations from the surgery so it'll just be more of this. Being careful with my fragile bits is key for now, I get it.

So getting back to the disgruntled plastic surgeon... Why did she want me to be scared of the future? Why did she want me to be afraid? After this and other frightening nuggets of wisdom, she told me it was "too late to find a different plastic surgeon if I wanted to have a positive result." There it was, the threat. In other words "If you don't let me do the surgery, it will be dangerous and aren't you already afraid?"

It was frightening. So much so that I managed to find another, (extremely well-qualified) surgeon within 24 hours, just in time for him to do the surgery. When it comes time to put an implant in, if I decide to go that route, I'm happy that I have a surgeon who doesn't want me to be terrified and dependent.

I'm going to be charitable to the original plastic surgeon and just assume she's insane instead of evil and abusive... even though her actions and words certainly are those things. It all comes back to what I have to keep learning; I am my own best advocate and I must always stand up for myself.

Things that go wrong

Today gets a second post because I'm punchy and tired enough that I'm actually dealing with some of this stuff now and I don't want to forget all this.

On Monday the doctor asked me to come in. I went and they took a sample of my blood. On Wednesday she asked me to come in again to find out the results. I got there for my 9am appointment and at 9:30am the doctor arrived. I overheard her administering chemotherapy to all of them, nurses were asking things like; "How much do you give with this, 50 or 100ml fluid?" She replied "100ml", to which the nurse said "Oh no, I've already started the IV with a 50ml bag!" and she quickly eplained to him how to add another 50ml bag in so that the patient wouldn't be receiving the wrong dosage. Stuff like this went on for over 2 hours. Finally she comes in to the room to ostensibly run an EKG and simply says to the nurse; "You do this, then print out the results and give them to me." So the nurse does and half an hour later the doctor sticks her head in finally and simply says "You're young so this is all fine, don't worry. You're healthy." She literally only glanced at the print out for a second before saying this, so that was a bit scary. Then I ask about my blood test from Monday. "No" she says, "We didn't do a blood test on Monday, you're confused by the neulasta injection we gave you on Thursday." I insisted and she pushed back harder, getting the nurse to confirm it. The nurse dutifully agrees with her, then laughs at me telling me that the chemo is making me confused. Being alone in this I have no choice but to let them take blood again.

The blood tests came back and as I said in my entry on Thursday, they weren't great. So I email my doctor at Cedars just to let her know and she replies that she wouldn't even bother with blood tests in the first week, that there is no way to tell if the neulasta is even working that early and I need to get tested much closer to the day I'm getting chemo. That's what I'm going to do now anyway, I have to because we need to find out if I can handle more chemo and if the white blood count doesn't come up, we'll have to wait.

So it all nets out to a similar result. Except the reality I live in netted out with two extra trips to the doctor, (one of which I had to wait over 2 hours for while feeling terrible and having zero immune system) and 4+ tubes of blood I really can't spare right now since the chemo is eating it all. 

I'm sticking with this local doctor for the next treatment, but this cannot go on again. I have to be much better about noting these kind of events and the problems they cause, but more than that, I have to head them off at the pass, stop these kind of things happening. I think I can do this in the following ways:

1. Be more assertive.
I often simply nod and smile politely when doctors or nurses tell me something that's wrong. I want to avoid bothering these busy people and I want to avoid annoying these very dismissive people who seem to hate me already just because I'm a patient and it's a pain in the ass... So in future I must be much less acquiescent and more forthright.

2. Take better notes.
The only way to make these people believe something is if I have a written document. The only way to hold them accountable after-the-fact will be to have a written record of everything I've taken and everything they've done. I have notebooks, I have this blog, there is no reason not to be even more scrupulous in my record-keeping.

3. Ask more questions.
If I'm told to take a blood test, ask why and what for. If they tell me to come in on a day when it looks like they'll be busy, ask for a different day for an appointment. If I don't understand some results, I can get more information from a family friend who was a breast cancer surgeon for many years, or my doctors at Cedars. If there is any change in my health, my doctors at Cedars seem perfectly happy to keep me informed and answer questions, so I'm going to keep sending them on. 

Three things, eh? I thought there might be more I could do... ah well, they're pretty big things and I think it'll be enough (or it won't and I'll die and hey, it's been nice knowing you, world!)