The only person cancer really affects is you!

I went into work for 3 hours today just to help out around the office. I didn’t get very much done but that is because everything is so disorganized the smallest task tasks 3 times as long to complete. At least some things never change. I did manage to buy some snow tires and book a visit to a client this afternoon. Days like this I'm glad I'm not “really” working.

Last night I sent out another “this is what’s happening” update to friends. I am sick of answering the same cancer questions over and over and really feel that people are so self absorbed that they don’t read or retain any of the cancer information I do tell them. It’s insulting and I'm doing my best not to get upset. I'm trying to be understanding that its complex – but honestly I haven’t even told them the complex stuff, it’s just that it doesn’t affect them so they forget it and then think its okay to touch base with me every couple of months about it like it’s nothing more than “how’s that new car running?” conversation.

“So what’s going on with the cancer stuff, what kind is it again?” “I just heard you were doing another treatment, I'm so sorry, I thought you were cured?” (Why because you stopped asking about it last year so you assumed I was done with it too?) “So you just had your stem cell collection, when do they take your bone marrow?”

If after 20 months of this shit you still don’t know what kind of cancer I have, and are not reading my updates - don’t even talk to me!

L.B.D

On Friday a friend asked me to go with him to his corporate Christmas party on the following Friday at the Brookstreet hotel… yes sir! Pulling a party dress out of my closet last minute was not going to be a problem until I realized “Oh shit the boob tube!”

So I headed to the mall with my mother to find a dress. Mum needed shoes for her party so we alternated stores. I wasn’t having any luck in the dress shops and my big feet were starting to turn green with envy watching my mother’s perfect size 8’s slip into anything she wanted in the shoe shops. After a couple of hours of no luck I thought I wasn't going to find anything and was getting a little run down, as I do. Id wear a nun’s habit if it came in my size and hid my permacath… its holy season!

Then I found it, the perfect little black dress - LBD! And that’s when I started to cry. I actually started to cry, and not just the misty eyes; an all out face crumple snort & sniff kinda cry. I think I was just so emotionally done by then, was subconsciously worried about what’s going on with my hair, and had resigned myself to the fact that I was going to have to wear something ho-hum just to cover up my oddities. And maybe a wig too!

I had resolved myself to just being “clothed” that when I was presented with looking my very best it was so beyond my expectations that I started crying. I guess it’s been awhile since I felt I looked and felt fabulous in anything.

So I started crying and then Mum started crying, and then I saw the price and cried a little more, and then Mum started saying “I’m going to buy it for you, you deserve to look & feel great, I'm going to buy it for you” and that’s when the sobbing became an all out scene and the poor sales lady was just so confused.

Friday morning I knew the hair was done and headed for the salon. I thought Id be going out that night in a wig, but my stylist cut it down and it seemed to look thicker. There are some noticeable thin spots on the sides of my head and at the crown where my scalp gleams through, but nothing a little bit of brown eye-shadow on the scalp can’t hide!

For me having cancer is often a daily lesson in humility, but every now and then I need a break from it. I need to pretend that nothings wrong, get dressed up go out and get noticed for my L.B.D and not my C.A.N.C.E.R

I don't have time to fall apart!

It feels strange to be planning something fun and interactive with others right now (Sunday stomp) because I'm a mess right now. I am just barely holding it together. I had a blow up with my mother last night after having one on the phone with my grandmother. I'm feeling very alone and resentful of everyone right now.

I didn't sleep a wink last night (which makes this a 4 day stretch) yet still I had to be up early today for a BMT planning meeting at 8am. Then I have spent all day in and out of client appointments trying to hold it together at work. If I'm not busy I’m fighting off tears; so I keep busy!

Part of me wants to talk about it another part of me does not because I feel like I’m going to have a meltdown once I get talking (and crying) and I don't have the time this moment for that. I’m back at the hospital bright and early again tomorrow morning and then a long day at work, so I just can't fall apart right now. I’m going to schedule my mental breakdown for sometime next week.

It is hard to keep up the facade of being okay. I haven't told any of my friends or work about this (going back into treatment) yet. Again mostly because I feel like if I talk about it Ill fall apart, so I’m waiting until I feel emotionally stable again to say what needs to be said. I also will need an incredible amount of help from people this time and I’m afraid to ask them for help. I’m afraid to ask because I’m afraid they will let me down. I don't think they will get the gravity of what is going on and what's going to happen. I don’t think I do either.

get some fu@kin help, you need it...........

Today was a two therapy session day. I met with the social worker in the morning and my therapist in the afternoon. By the end of the day I was thoroughly talked out and wrung out.
Talking to a professional is very purging, and since then have been feeling a bit more inspired. I'm telling ya, talking can be so healing. And not just to your friends, try someone bias that is paid to listen to your emotional vomit. Again totally purging!
I always thought finding the solution to a problem was the answer to the worry, so I spent allot of emotional effort seeking the answer. But I'm really seeing how the process of articulating the problem can be just as valuable as the solution in elevating the worry.

what would Tamara do?

I'm lost and I'm not feeling very good about myself lately. I'm doing everything right, but it just feels all wrong. I get up, I go to work, I eat well, I exercise (not as much as I should – but that’s no the point… in-fact that’s pretty same old same old) and I socialize, I go to the movies, I make inappropriate jokes about what people are wearing and I flip off slow drivers… you know the same shit I always did.

I’m the same, but I'm not the same. There are so many little ways, mannerisms, thoughts and actions that I take that are perfectly normal for the situation but I'm surprised they came from me. I’ve changed, and of course things around me are always changing but my reliable reactions and responses have changed. I find myself thinking “what would Tamara do?” because it’s not second nature to just do it.
In this scene Tamara will be playing the role of Tamara, wow she is good… just like the real Tamara; you’d be hard pressed to tell them apart.

It’s hard to feel like you’re really living when your playing the role of who you used to be until you figure out who you are. This feeling of not really living, rather just existing is with me constantly and is perpetuated on so many levels. It starts with not having a plan. We don’t know if the cancer is gone, and if it is, we don’t know if it’s coming back so I'm just waiting.

How do you get up and get involved in any aspect of life when you never know when today’s plans will change or where tomorrows will take you? I don’t work like that; I need larger plans and goals, so I am really struggling on a fundamental level and existing CAT scan to CAT scan.

The funny thing is I didn’t really know that about myself until now. Well I did and I didn’t. I spent allot of mental energy laying out life plans, yearly goals and weekly tasks and beating myself up when I wasn’t focused enough to make get to those goals, plans and tasks. I always felt Id be living better if I did more of this and followed more of that, I had no idea how much I was “living” until I was just existing.

Now that I am physically able to get a life again I wonder what’s the point? To everyone else I look great and I'm doing good, but I don’t feel good; I'm lost. I need a plan; I need a plan… what would Tamara do?

Choose Your Own Cancer Adventure

I have been thinking a lot about life and death lately… mine that is. I don’t have the same intuitive certainty that “I will make it through this” that I had when I was first diagnosed and facing 8 months of chemo. That’s not to say I feel that I will not make it through, I just simply don’t know this time the way knew last time. I have nothing deep down guiding me.

I do however feel that whatever happens is not entirely up to me anymore. Which is a hard thing to lump! I’ve never been a real “que sera sera” kinda gal; more like a make your own destiny, manage your own shit kinda chick. But if this all had been up to me I would have beat cancer after the first round, so perhaps it’s not all up to me?

So I’m prepping for both outcomes. Which is a really odd thing to be doing! It’s like I live in a choose your own adventure book where I’m starting out along one story and then with a flip of the page ill have to very different endings. Go to pg#46 for life or pg#89 for death. Except up until this point I was reading the book, now someone’s reading the book to me and choosing an ending. Surreal.

On the one hand I’m doing things to prepare my body for more chemo like exercising, eating well and taking a boatload of vitamins while making plans for the future during and after the chemo/BMT. At the same time I’m thinking a lot about what I want to happen if I die and what I can do now to make that better for my friends and family. And I’m not talking about writing out a Will or stupid shit like that, because I mean really ill be dead what do I care about ‘stuff’. I’m talking about what to say to whom and how with the assumption that it’s the last things that will ever be said between us.

I haven’t got very far because I fall apart when I try to think about it. Planning to live is easier than planning to die that’s for sure. But they feel equally as important right now, like no matter what; it’s something I have to do. It’s not that I’m afraid of death the way I think others are afraid of it, it’s more that I’m afraid of what happens to everyone else after I die. The things that bother me about my death are; I wish I could have done more, I’m afraid it will hurt, I’m afraid of the effect it will have on my family and I’m afraid it will happen too fast to say goodbye. Like death, they’re all things I can’t control.

So no matter what it’s I book I feel I have to write, so to speak, but I hope I’m not setting up the plot for a bad ending.

Live Your Truth, the State I’m In & Good Things:

I realize my blogs are a lot of bitch right now, but I firmly believe you gotta live your truth. And my written truth is always the state I’m in! I’ve noticed there are a lot of bloggers who only write when they have something good or uplifting to share about cancer and their experiences. Ill notice a gap in their writing and then a comeback note that says “sorry I didn’t write for so long, I was feeling really down”; I think this is a real injustice to others.

It’s clear that many have a shared experience of feeling down, angry or lost for a period of time during this process, but many are reluctant to share it. I don’t need a dirty laundry list, but if there’s someone else out there who’s going through this process who wants to share – share! Share the good and the bad, that’s the biggest service you can do for another “patient”. No one wants to be alone in this experience, especially in there problems.

However in the last few months I have neglected to post my “good things”…so…

The one thing (or being) that always makes me happy is my cat. This little old man is especially happy to have me back in my parent’s home at his beck and call. He loves the day after chemo because he gets to stay in bed all day and cuddle, and I love the company! At 15 he is starting to experience some health problems so I’m just so happy to be near him during this time. Pets are such a comfort and a wealth of unconditional love… a sick person must have!

Over the past month I have taken over the household cooking and am learning to prepare all these meals from my clean eating and cancer-free cookbooks. I used to own take-out menus, not cookbooks! Early on I learned that a clove of garlic was one of the pieces inside the bulb, not the bulb. In the end the stew with several bulbs of garlic in it (instead of cloves) tasted pretty good, but our house stunk, our clothes stunk, my car stunk, my mittens stunk, and the cat stunk like garlic for 2 weeks! Nobody liked the almond cookies (aka. dog biscuits) I made, but man am I having fun… I learned how to use a Cuisinart!

So throughout this experience I have not found god, it hasn’t brought me closer to my family (thus far), I haven’t bought into the “everything happens for a reason” inner peace shit and I have chronic moments of ungratefulness, wounded vanity and all out bitching. When I’m done with that I pet the cat, try to kill my family with my cooking and blog about the state I’m in!

Cancer Mania

I started to disconnect towards the end of my post treatment consultation with the doctor. I tried to stay engaged and present so I could remember my questions, but it didn’t really matter I wasn’t listening to the answers anymore. I shut down after “3 more months” and “blood transfusion”. I can’t help it; it’s just the way I am. If the reaction coming forth is too much, I shut it down… I’m a zombie at weddings and funerals; the emotional weight overwhelms me into a quite delirium.

I floated out of the hospital and replaced my quite delirium with quite mania. It’s a crazy I’ve just checked out kind of feeling where everything spins around me and I’m sure I get this “I’ve snapped” gleam in my eyes circa Chevy Chase, Christmas Vacation. It’s not a rage, just a deep revolution inside that it’s not alright, none of this is alright… and I’m gonna damn well make it right! You’re only aware of it when you see your nails have left marks in your clenched fists, your jaw starts to ache from being set or you throw eggs at some bitch’s car who wronged you… that’s another story. Needless to say it’s a real fixated mental divide; sshhh Tammy’s gone to her postal place.

In the car I white knuckled the steering wheel trying to figure out what was next and was lulled further into my mania by the introspective intro to “Won’t get fooled again” by The Who. Synthesizer’s rock! When experiencing a revolution you need reflective revolutionary music, thank you radio gods! As I listened I raged at the reality that cancer can kill me and I raged at my foolishness, and arrogance in thinking that it wouldn’t. I was so sure that eight months of chemotherapy would be enough and by February I would be smug with my answers “yes, that’s right I did beat a life threatening illness last year” “I know, I know I do look great considering”. So foolish, I had underestimated cancer, but perhaps still not over estimated myself. I resolved when it comes to cancer, I won’t get fooled again!

Then the music shifted my emotions with the first chorus of “A day in the life” by The Beatles… “I read the news today, oh boy”. It’s always been one of my favorite songs. There’s a quite sadness in the beginning that makes you feel a little lost and helpless about all the things that happen in life. And then just as you’re about to sink into your own self pity the orchestra spirals out of control and drags you into what you must do… “woke up, got outta bed and dragged a comb across my head”. The music comes back around and you realize that this is just the cycle of life; good and bad life just goes on. I resolved that this is just the way it is, crazy or not, and the finality of that thought was solidified with a final boom on the piano keys.

The final song to end my music therapy starts with a ticking countdown that pumped me up into the final stage of my manic epiphany, ahhh the power of Loverboy! While I worked out all the things I’m going to do to beat cancer, I sang at the top of my lungs. It was a real lunatic moment reflected in the eyes of the dude next to me at the stop light… my ear flap ski hat really completed the crazy picture. “I’ve had all I can take, I can’t take it no more, I’m gonna pack my bags and ffffllllllllyyyyy…. my way, or no way at all!” If you scream that part, you still wont sound as good as Loverboy, but you will resolve that from now on this cancer thing is gonna happen, my way… or no way at all!

I’m afraid for this to end. I have just two more scheduled treatments to do, and you would think it would make it easier to do knowing I’m so close to the end, but it's not. Everyone keeps talking about this ending and me going back to work and back into a normal life and it makes me feel worse - anxious. I've been sick for so long, and feel so run down now it's hard to imagine ever feeling good again. And then going back into my normal life, I don't even know what that is anymore! This whole thing has changed me, I can't quite pin point how but I know I am not myself; I’m going to feel like a stranger in my own day.

Treatments are getting harder physically now in that I feel very nauseous during and after treatment and my body is just not recovering the way it used to. These days I barely have anytime between treatments that I feel good and have a normal amount of energy, my WBC never recovers before the next round now. I’ve upped my Neupogen to 4 shots per cycle, but it’s not really helping and the pain of it is too much for me to do 5 shots. Id rather have low counts and be a slug.

Despite the nausea I have done a fabulous job of eating my way through this experience. I’ve pushed out of most of my jeans and had to buy bigger underwear! Horrifying, I’ve gained weight before but it never pushed me to the next ass size. I keep telling myself Ill deal with the weight after, be happy with the cookies now, but I’m a little afraid I wont have the energy to shape myself up after.

The weight is also tainting my excitement for our upcoming vacation. My family has planned Christmas on a beach to celebrate the end of my treatments and give us all a break from… why we’re going with each other I don’t know? But there is no way I’m getting in a bikini, not that I can get much sun so soon after chemo anyways. So I have this awful picture of myself fat, pale, baldish and in one of those old lady skirted swimsuits knitting in the shade. That’s right I knit!

Going Feral.

I haven’t got much of a reason to leave the house today, so I’ve been circling it like caged animal. My responsibilities and abilities are so minimal these days there’s not much to do; not much I want to do or much I can do. I thought about getting dressed and going out to the mall but it seems like a lot of effort for nothing, as I’m out of spending cash and what’s the point of painting on my eyebrows when I’m just going to wipe em off again.

This is perhaps how depression starts. Why get out of my pajamas when I’m just going to get back in them having done nothing in-between, might as well stay in them. It’s hard to keep track of day and night when you have no routine beyond the recognition that Oprah signifies that transfer between daytime and evening television at 4pm.

However it is amazing how fast time flies pissing it away, Tuesday was lucky number 13 (out of 16) rounds of chemo finished. I am the last patient booked each Tuesday, so the place is empty when we are done and the nurse ends her shift to go for dinner when I finish. Unfortunately for her I have an uncanny knack of waiting till the end of my rounds to be sick which makes the nurses stay late and Mum terrified that she'll have to drive home with me, head in a bag. Although she much cooler about it since we started driving my car to and from.

So it was a tough time when I got home and crackers for dinner. But it didn't last long; thankfully I got a new prescription to help me sleep... I think it must be anesthesia in pill form because I barely remember taking it and woke up quite refreshed the morning after - organs intact.

Sobbing with Joy!

A tear started rolling down my cheeks as I walked out of the hospital this afternoon, and by the time I hit the hwy I was sobbing with joy. I had a check up with my hematologist to see how I had progressed halfway through my treatments, and the news was great. After four months of chemo, the mass in my chest is almost gone.

At first I found it odd to be sobbing over the news, since I barely cried when I found out I had cancer. I mean I cried a little (or allot at specific periods) but it was more about upsetting my family, never the cancer. I always accepted the cancer like a moment I knew was coming had finally arrived.

Why does it mean so much to me to know that it’s almost gone? I think I figured it out… I didn’t know I had so much to be afraid of when I began treatments. Ignorance is bliss, and that bliss got me through about the first three months of treatments. Knowledge, experience and fear has started to wear me down over the last month.

Thank god there is nothing to compare just how horrible chemotherapy can make you feel. If I had known… I can’t even finish this sentence; I have no answer for it. I don’t know what would have happened if I had even just a taste of how four months into the future might feel. It’s that knowledge of how awful it does feel that had shaken my resolve over the past month when anticipating future treatments.

Everyone was really enthusiastic about me reaching my halfway point in treatment, but I couldn’t get into it the same way this news has affected me. To them the worst was almost done; to me the worst was still coming. Chemo doesn’t get any easier; it’s cumulative and gets worse everytime! I hate to articulate that to anyone who’s just started. I feel like I’ve told you a bully’s about to kick your ass around the next corner, rather than let you take at least the first half the surprise beating in shock.

Anyways this news has given me back something that I didn’t realize was missing until it popped back in my head tonight, “you can do this, you’re strong”. I run an inner monolog constantly, I mean constantly! (I keep myself up at night because I wont shut up.) I tell myself that I am a strong person all the time! It is a constant phrase in my mind during tough times, because… well cancer isn’t the first pile a shit I’ve dug through. And I just realized it hasn’t been in my inner monolog for the past few weeks, I was really starting to succumb mentally to the physical beating of chemo.

Well I still have to do four more months of treatments, but I start my second half with the same resolve to stay strong that I had when I began my treatments. Now that’s something to sob with joy over!

seventh-inning stretch

I had a little sob on the front porch this evening with my mother. I feel like I am nearing the end of my emotional & physical strength; like I’m going to run out of chemo-steam before the chemo-train is done takin me for a ride. I’m not there yet, but I feel it coming. It’s like every fiber of my being is screaming at me “what are you doing… you remember how awful it was 2 weeks ago, don’t go back… listen Tam, I really think this chemo thing is designed to kill us… you’re crazy to keep letting them do this to you!”

Every other week as I near chemo day my fight or flight response starts to whisper “you can’t win this one, just sit this one out, remember how it knocked us out last time; please don’t do it to us again”. That Tuesday morning I have a self preservation siren that is screaming code red in my head telling me to abort the mission as I drive to the hospital. How long can someone ignore themselves in the best interests of themselves?

Paragraph one “you’re crazy to keep letting them do this to you!” After puke treatment 5 I decided I needed to disengage myself during chemo visits in order not to become overwhelmed by the process of putting in the needle, receiving the drugs and really just acknowledging that I was there and that was happening, because sights and sounds of the hospital were making me physically sick. Did Pavlov’s dog barf at the sound of the saline drip? Somehow I’ve trained myself to; so I disengage, pretend I’m not there and block out what’s going on around me. The problem I’m now having with that is a feeling like this is being done to me, and it perpetuates the reality that I am not in control of this, and I can’t stop it. (Cancer or treatment)

In the beginning I felt in control, I was a willing participant; I’m no longer willing and as much as I hate the word, I feel like I’m being molested every 2 weeks. Every 2 weeks I don’t want to drive there, I don’t want the needles, I don’t want the drugs, I don’t want to sit there for 3 hours while it burns up my arms. So I close my eyes and try to will myself to sleep or pretend I’m asleep and that I don’t feel the chemo or hear other peoples cancer conversations, and I walk out feeling (well sick and disoriented) but also wronged… like it was wrong of them to that to me because I’m not willing.

So I’m emotionally stuck. In the beginning I felt like had a choice, and the choice was to embrace the treatment in a calm rational manner. I mentally can control my outlook and chose to make the experiences positive. Except now I’m like a dog that’s been kicked to many times for wagging it’s tail and my body is taking over and declaring my mind unfit, because it’s evident to my body that we (I) need to be in panic mode and stop wagging my tail at it. “I’m being attacked, panic, panic”. Yet if I choose to shut it all out and endure, my self preservation siren still goes off screaming “how can you let them do this to you emotionally, and by the way it is still happening physically!”

Mind and body don’t want to do it regardless of whether I embrace it, acknowledge it or ignore it and pretend… there’s no foolin me. If only I was schizophrenic, then only one of me would have to go through this. The rest of me could just carry on “la de da”, although it would be hard to explain the hair loss to the other me’s.