Monday, August 31, 2009

Why does everything have to be so HARD???

I mean seriously! I could be dying here (my new favorite phrase) and I can't get logged into the bank website, or my 401k website, the patient assistance people wanted the rest of the stuff they need from me TODAY! It's stuff I am relying on other people to get for me; I'm not magic!

Oh, yeah, my new favorite word is "effing", as in, "Why does everything have to be so effing hard?"

Calm down people, I'm SLOW...BRAIN SLOW...and STRESSED!! I just feel like screaming today. Well, if I had energy.

Seriously, it would be easier to die next week and not have to deal with all this!! CRAP! I know, no one likes to hear me talk like that, but those are the people who aren't dealing with this!!

I wonder if dying from this is painful. I hear it is. But then they hospitalize (ugh, and catheterize) and drug you up good. At that point, I will insist on Demerol, cuz they are probably going to be afraid to give me morphine after the losing consciousness thing in the hospital. The doctor's notes say it was probably from narcotics. No mention of the Ambien...which is what I think contributed. Well, when I'm dying I'm going to want narcotics, NOT Ambien!

I can't cope with deadlines. I hate finding things. I hate paperwork. I don't know how I am going to pay ANYTHING on short term disability (55% of your pay) OR long term in 2 months, which is still only 60%...whine whine whine....I just don't know how to cope! or what to do! I'm not good at this! DAMN IT!

Sunday, August 30, 2009

Word for Today

  • Main Entry: me·tas·ta·sis
  • Pronunciation: \mə-ˈtas-tə-səs\
  • Function: noun
  • Inflected Form(s): plural me·tas·ta·ses\-ˌsēz\
  • Etymology: New Latin, from Late Latin, transition, from Greek, from methistanai to change, from meta- + histanai to set

1 a : change of position, state, or form b : the spread of a disease-producing agency (as cancer cells) from the initial or primary site of disease to another part of the body; also : the process by which such spreading occurs
2 : a secondary malignant tumor resulting from metastasis

met·a·stat·ic\me-tə-ˈsta-tik\ adjective

met·a·stat·i·cal·ly\-ti-k(ə-)lē\ adverb

Friday, August 28, 2009

The Grit

I sat down to blog, but decided I was really too tired / too bored / too...uninterested? So, I listened / sang along with / harmonized to the first song on my playlist (Crazy Love), of which I just never get tired. Then I thought I'd better at least leave the highlights of what I got from the doctor today.

I found this really cool purple evening dress thing that just needs like a bolero or something at the Goodwill, for our Ward "Prom" coming up (generically) in October. No word on an actual date. If it's on Halloween, we may have a problem, or I could just fix up the dress to be "MiMi at the Prom"....

So as far as the questions I asked the doctor:

- The cancer is on a couple of places on my skull, and I was concerned with what brain parts would be affected should it break through. He said it just really doesn't. RARELY. So not even to worry about that.

- Median (MEDIAN) survival rate across all metastatic breast cancer is 2-3 yrs. Bone-only is a better shot. The radiologist said she's had patients go 5-15 yrs, and my oncologist confirmed that 5-15 is BEST-CASE scenario.

- Side effects from Femara can abate a little, but usually just end up reaching a plateau (and staying there I guess). But, if the cancer responds well, goes into remission, you get to stop taking the Femara, unless it acts up again.

- We really won't know more about response, etc, until we do a scan.

- Don't think he knew the radiation machine had been down all week. He does now. Treatment was canceled again today.

- He totally supports my desire to start seeing a counselor/therapist.

- He totally supports my fears that I just will not be able to return to work, i.e. double the pain, double the fatigue, triple the stress. So we will begin work on ss disability soon, and he supports that.

- I have Stage IV Metastatic Breast Cancer. (the first cancer was Stage II, finding in lymph nodes made it Stage III, this is Stage IV.)

I love my doctor. He gave me such great sustaining hugs today. I feel a lot better. He doesn't think I need sugar-coating, as my mother expressed fear that she thought he thought. Maybe she needs it. He said he has always felt he could shoot straight with me, and that we have a trustful, honest dr/pt relationship. His office was BUSY today. He was like an hour behind. And he still took the time to let me read to him what I had written, and go over my list. He is so good like that.

Becky and I turned in everything we had so far to the Patient assistance people for AHCCSS or whatever. I have a couple things to get from work and fax.

I didn't take a nap today, even though I could have, so hopefully I will SLEEP tonight before 2:30am.

Wednesday, August 26, 2009

Word of the Day

  • Main Entry: pal·li·ate
  • Pronunciation: \ˈpa-lē-ˌāt\
  • Function: transitive verb

1 : to reduce the violence of (a disease); also : to ease (symptoms) without curing the underlying disease
2 :
3 : to moderate the intensity of

pal·li·a·tion \ˌpa-lē-ˈā-shən\ noun

pal·li·a·tor \ˈpa-lē-ˌā-tər\ noun

Recently used: Side effects of radiation treatment were explained in detail to this patient. The patient understands this is for palliation.

NOTE: I wish they would get the dang machine fixed so we can get on with the palliation!

Tuesday, August 25, 2009

Prognosis: vague?

I have TWO (2) followers now! Hooray!!

I've been thinking about my prognosis, or lack thereof. Radiation was canceled today and yesterday because the machine broke down and they were waiting for parts. (Maybe they need a new machine??) It broke down on the patient right before me. Through my mind flashed the scene from "Logan's Run" where the plastic surgery machine went bezzurk and tried to cut up Farrah Faucet. I hope he didn't get cooked; I didn't see him afterward.

Four days without treatment. Is it my imagination that the pain seems worse? I don't know, since they are saying that the treatment can alleviate 80% of the pain. I still have a lot of questions. Or, maybe I just am beginning to formulate questions, and that may be a good thing. I'm sure my brilliant doctor is anticipating everything, being a brilliant doctor and all.

I don't want to go back to work. I feel like crap, and don't imagine the crap just going away on it's own in a couple of months; not if I have to continue taking Femara. And if my pain is thus after 7 treatments, I don't see it diving to 80% in 7 more. But maybe I'm just a big damn baby. Maybe an "8" for me on the pain scale is everyone else's "4". I doubt it. I happen to think I tolerate a lot of pain.

I was very disappointed that the nuking machine was still broken today, because the radiation doctor sees everyone on Tuesdays, and I really wanted to pick her brain about the prognosis.

I see the oncologist on Friday after my radiation treatment. I will have to see him alone this time, so I can get better answers from him, one-on-one.

Dear Doctor P,

As a preface, let me remind you that I love and respect and admire you. You are brilliant, kind and caring. This I hear from everyone I speak to who has worked with you, and from my own experience. You know how special you are to me.

I'm terribly, terribly bothered by the fact that I completely blocked out the biopsy that I apparently had. Perhaps I could see a report or something to make it more real to me. Some things are still creeping me out, random things flash me back to the scariness and freakiness of the ICU. It was not a pleasant place, and my hallucinations/dillusions made it worse. I still want to smack the nurse who kept asking me what year it was. Who the hell cares?

When we visited last Friday, I asked said that I needed to know, "if I was going to get better and go back to work, or if I was dying". I think mention of going back to work may have caused some excitement, and you assumed I needed a goal, a point B, to work for. You said it wasn't unreasonable to expect to be back to work by Halloween or Thanksgiving. We all felt good about that at the time, perhaps because it would mean that some of the other stressful things facing me would not have to be dealt with. We did, however, skip over the part about dying. While I don't need a goal, I do need a bottom line, so that I can plan what needs to happen. Bottom line, if I'm likely to die, I can dig in my heels and try not to. Bottom line, if I have to go back to work, where I worked in pain for 9 months, then I'd just as soon be preparing to die. While I like to be busy, energy permitting, and have a purpose, forcing myself back to work, where people (dare I say) persecuted me for my pain and were quite intolerant of the things that chronic pain causes, makes me want to curl up and scream. Or scream and then curl up. Not sure which natural order in which these things come. If my cancer is likely to grow and get worse over the next 6-12 months, then why, WHY do I want to force myself back to work? That will only make me more tired, have less energy, and require that I take more medication to deal with stupid / unfair people.

I worked through most of my treatment the first time around, and looking back I say, Why the HELL did I do that? It's because we fear and feel we have to. Being a single person, single parent, I have pushed myself to endure and tolerate things that others would not. Well what the hell...I'm not doing that this time. If I have life-threatening cancer, then I should take life-protecting measures. Or at least life-easing measures. I don't know. I could have 2 months, or 3, or I could have 6 months, a year, or more! I guess we really won't know until we compare scans after radiation treatment to see how far it has progressed or retracted. Oh, let's not forget I have some on my skull as well.

I have to wonder if the things you said while I was unconscious changed when I woke up, or what. I need the straight poop, the bottom line. If it's not good, then I'll deal with it, and I'll have you and a team of others to help me do so. If I'm supposed to get better, but still feel like crap all the time because of the Femara, then I'll need even MORE help. Maybe I'm a big woosie this time around, but I seriously do not feel like being anyone's martyr or hero. First time around I was younger, stronger and healthy going in. This time I'm older, more tired and already exhausted and pain-riddled. Perhaps we should also discuss the antidepressant factor. I'm not sure I'm getting enough help in that department.

Prologue to this is that I think you're awesome, that I don't want anyone in my family yelling at your for anything they imagine needs yelled about, and I know that you want what is best for me. I am exhausted and depressed and I need support for that. I need real answers, not just answers that make others feel better. I know I can trust you for this, even if it is difficult.

Shelli G.

Saturday, August 22, 2009

The Dirty Pink Under-Belly

I just got home Monday from 17 days in the hospital. {Pause here for audible gasp.}

It started as "let's get this pain under control". Sounded like a vacation. OK, to back up a little...I've been having back and hip pain since last November. I had a car accident that aggravated the sciatic nerve. I did many many chiropractor visits, spinal nerve injections at the pain center, and about 13 wks of physical therapy. At some point in the middle of physical therapy, I thought I was finally turning a corner and getting better, but then it pain came back, but slightly different. I had been walking with a cane for months.

I saw my oncologist in July sometime, and he was concerned about the pain, and about my concern about the pain. He suggested a bone scan just to make sure there wasn't anything to worry about. About two days before the bone scan was scheduled, I thought I was having a kidney stone. The pain was severe enough and in the right place. I went to the ER that night to get it checked. The CT scan they did showed nothing wrong with the kidneys, and after forever, they came back in to tell me. They were probably doing paper-scissors-rock for who had to tell me. Nothing on / in the kidneys, but what looked to be possible metastasis on the back etc from prior cancer. The P.A. drew the short stick and had to tell me. He did a good job. Somehow, I guess I was expecting it, subconsciously.

I had the CT scan sent to the doctor, and he wanted to see me right after the bone scan I had scheduled for that Friday. That's when he decided to get me in and get the pain under control, and I don't know what else. My memory starts getting a little spotty here.

I went to the hospital from the doctor's office. Got checked in (what a nightmare) and settled in the room. At some point within a couple of days, I had a BIOPSY, which I do not remember planning, talking about, scheduling, having, or discussing. I have completely blocked it. Apparently it showed that the metastasis was the same cancer as my breast cancer (damn lymph node time bomb!). I have completely blocked discussing it or having it.

I remember the night that the music therapist and massage therapist came to my room, but not in chronology with a biopsy at all. I think I had asked for something to help me sleep that night. Later, the nurse came in and couldn't rouse me. Later she told me that they were able to revive me with just drugs, and didn't have to do chest compressions. My sisters say I wasn't just passed out, I was gone. There was some vomit and stuff around me, and I apparently aspirated some vomit. I was intibated for three days, unconscious mostly. They didn't know how long I'd been out when I was found so they didn't know how long I was without oxygen. The doctor used words like "If she wakes up..."

I was sent to the ICU from there. When I finally started waking up, I thought I'd been kidnapped to a foreign country and not allowed to leave. They were running a Chinese restaurant out of the front office. I remember a mean rough nurse shoving the poop sac catheter up my butt, but I must have passed out after "ouch that hurts" because I don't remember decking her. I was tortured by a nurse every morning who would ask me what year it was and then try to convince me I was wrong. I finally started asking him if he wanted to know what year I thought it was, or what year he had been telling me it was. They tried to put a pic line in near where my port tubing went in on my neck, and they didn't adequately explain it to me, so I ripped it out. I remember the pulling, but don't remember any blood or pain. Maybe I passed back out. They wanted to put one in my arm, and didn't have the patience to explain it well enough to me, so they just asked my POA if they could do it. Impatient bastards.

The night before I left the ICU, I was tired of being in the bed. No one would come when I called them to tell them that my arms and legs were nervous and jittery and driving me crazy. I yelled for a while, and then decided I was going to get up by myself and sit in the chair. I ended up not falling, but rather lowering myself to the floor as my legs wouldn't hold me. Then I had to call for someone. They had to bring in the big winch and crane to get me back up again, and then I was grounded, and they put the alarm on the bed.

Getting out of the ICU / foreign country where I was held captive was great! I was away from the room and walls that seemed so strange and odd from my dillusions. The new room was really big and seemed more normal. They moved me to telemetry (?) because they had room and because I was having some chest/cough issues from the intibation (which also cracked the front of one of my teeth). I had two catheters (I don't know the technical names, save "folley", but I call them the pee bag and the poop sac) and an IV for fluids. I was so uncomfortable with the poop sac, that I talked them in to taking it out the first or 2nd night I think. This was fine, except that now I had to use a bed pan to poop, which was very uncomfortable, and people had to wipe me ass when I was finished. (You know you really just don't care anymore when that ceases to be embarassing.) Finally Physical Therapy came to teach me how to get up and down with a walker. Oh happy day, besides the bleeding hemoroids, when I could get up and use the toilet. Ok, so I still needed help wiping my ass, but still. I drew a picture in honor. Several days later, I convinced them to remove the folley and after that, convinced them I didn't need the IV pumping pee juice into me that made me get up every two hours all night. Being completely unattached was wonderful. Getting to the restroom was still exhausting and a huge deal though. Several times, no one came to help in time and I pooped all over the place on my way to the toilet. I couldn't get back in bed very well, so for many days that was a huge ordeal, needing help back into bed and to be positioned. Ugh. I was so weak. For lack of someone saying it was no longer neccessary, I was on a liquid diet for DAYS. Pureed soup twice a day, which looked the same as what I was pooping out on the floor when I didn't make it. Finally I just couldn't eat, and finally, FINALLY I got the doctors to own up and change my diet! Then one night they sent me stew by mistake...I almost hurled, but got over it. Kinda lost my appetite after that.

I'm trying to remember things, but can't. I started feeling better after all the stuff was unhooked. The doctor decided, first, that I could move back to oncology, then changed his mind and said that as long as they didn't need the bed, I could just stay where I was. Next day I was told I was moving back to onocology. To a teeny tiny room about the size of a broom closet, where my walker wouldn't even go around the bed or fit in the bathroom. It felt like punishment, but at least...I dont' know what. I felt rather ignored after that, though I should have been better looked after back in oncology. Finally they started saying I could go home monday morning, and then everything just gets dumped on you at once. I don't even want to think about it right now. Too much to think about and deal with.

I started radiation on thursday before leaving the hospital. I also started taking Femara, orally. Between the two, I feel achy and tired. I am very achy and don't feel good every evening, after taking the Femara, and wake up achy and tired. It never goes away. I tried to pin the doctor down on friday about the prognosis, but I'm not sure I got a straight answer. I just dont' know if it's assumed that I'll get better, or assumed that I'll get worse. I don't know if his idea of setting a goal of getting back to work is just a distraction or a legitmate goal. He never did address the "or am I going to die" part of my question. I love and respect him, and I know he doesn't want to lose a patient, or fail to give someone hope, but I need to know if I am going to have to go back to work, or if I will have to deal with losing my insurance, etc.

So this metastasis is the unpublicised part, the part for which there are no parades, no pink ribbons, no hats. I think I read that 30% of "survivors" end up with more cancer. But we ruin the statistics. We totally screw that survival ratings, so I'm pretty sure they just ignore it so the numbers can look better. They've come by and took my pink hat and deribboned me. I'm no longer a survivor; I've no longer been cured. "Cured" is such a bull-shit word anyway. Seriously, no one can know if they will never get cancer again until the day they die of natural causes. 2nd time around, they dont' even use the word. My metastasis is "treatable but not curable". You have to live with it forever, until it kills you I guess. I really don't know what is going to happen with the cancer, and we still have to do a PET scan to see if any organs are involved. I think that it was probably too soon to be setting goals to be back to work, but I think maybe it made the doctor feel better.
There's no looking back and saying "I should have" or "I could have". There's only making it now, knowing what I'm dealing with and making the best. My next move is to get some cleaner answers about the prognosis and then about my insurance / disability.

This is the dirty pink under-belly; the part that exists but is not glamorous or glittery, for which no one marches or holds parades. The only pink ball caps are the ones dropped in the gutter and run over and stepped on. It's a dirtier shade of before, and it's reality for many.