The Old Lady Transformation

I have concluded that I am turning into one of those morbid, old ladies who always talks about her impending doom.  This transformation has occurred slowly and anyone who knew me before the cancer knows that I have always been a little bit old ladyish, but things have only taken a turn for the worst.  It started slowly, but in the last few months has hit me full on.  Let me just explain a little how this all began.

Initially, I had a lot of back pain.  I did some physical therapy and that seemed to be helping, but not really.  You see the pain is actually caused by the swelling of cancer-filled lymph nodes in my stomach and lower abdomen.  When these swell up, the put pressure on my lower back and cause the pain.  Now, I often walk around with one hand on my back, slightly stooped, and I often shuffle.  I hate standing for long periods of time and get grumpy if I have to do any activity that involves copious amounts of walking or standing.  I frequently need to take sitting breaks.  So yes, I have the stature of an old lady and I have that whole cranky old person thing down pat.

The back pain is so bad that I have been placed on this wondrous drug known as the fentanyl patch.  It’s a little square sticker that adheres to my body and provides a continuous stream of narcotics.  Anyone who has a tolerance for opiates would rejoice in this new-fangled contraption whereas I curse the bloody thing’s existence.  It makes me so very sick.  Nausea is a continued problem.  That fancy, overpriced bracelet that I talked about in the last blog does not work.  I repeat, do not spend your money on it.  It did help a little bit, but it wasn’t really worth it.  Only after we (and by we I mean my lovely parents who are supporting and caring for me) purchased this contraption did we learn that it only lasts for 150 hours and has a battery that is not replaceable.  On top of that, it broke!  The part of the strap that connected to the watch-like center just popped off one day.  So good riddance to that worthless piece of technology.  Since then they have put me on stronger anti-nausea medicine, which does help quite a lot (it still doesn’t completely get rid of it), but also gives me really bad headaches. 

As a result of all of this pain and sickness I have lost an awful lot of weight.  I spend a good three days per week being unable to stand, read, or focus on anything without throwing up and then at least two  or three days recovering only to be hit again with another round of chemo.  I’ve turned into a vomiting slug.  Food is very hard to eat and to keep down.  First of all, eating causes pain.  Every time I eat something it ends up in my stomach and lower abdomen, which already don’t have that much room for extra stuff.   This equals more back pain.  On top of this, my stomach is never fully healed from all the acid that comes from vomiting on a regular basis so it just simply hurts to eat.  In the end, I’ve started to drink those Ensure shakes in order to sneak extra calories in.  You may have seen your grandparents drinking these or you may have seen the commercials with the old people talking about how great they are and nutritious… Yep, I have become the elderly.  Although, the chocolate shakes aren’t that bad.  They taste just like chocolate milk and if you throw them up it’s like throwing up chocolate.  It’s a win win situation. I wonder if they’d put this on their commercial? 

Aside from throwing up a lot, I’ve started all these little hobbies.  I have an herb garden that I occasionally putter outside to water and I’ve started to quilt.  Yes, that’s right, quilt.  I do, however, refuse to learn how to knit, crochet, or embroider.  Nope, I am not doing it.  Though, several people have suggested it.  I may have turned into a grandmother, but I’m a cool grandmother.  Just remember that, I am cool, okay?

I have also started to plan my funeral.  I consistently make jokes about my death and try to pass on beads of wisdom to my friends.  I also find myself saying, “Well, we better do that soon before it’s too late…” in ominous tones.  I’m sure they appreciate this.  They better because, hey, I might not be around much longer (see what I did there?).  I definitely want to be cremated and, if possible, have a tree planted over my buried ashes.  Except that this is really hard to do.  Most cemeteries don’t allow you to plant things because (and this is the most stupid thing I’ve ever heard) it makes it hard to mow.  Seriously, guys?  I mean my family pays for that land and then, in some cases, they continue to pay fees so that you take care of said land.  Honestly, they should suck it up.  So their job is a little hard, at least they’re alive to do it.  Anyway, rants aside, I really do want to have a nice funeral.  I know I’ll be dead and won’t get to enjoy it like everyone else, but there absolutely must be good food and alcohol.  I also really hope that everyone doesn’t wear straight black to my funeral.  I want to be remembered, not mourned. 

Anyway, life is just super frustrating right now.  I get winded just walking a mile on the days when I can walk.  Most of the time, I just hang out on the couch trying to figure out how to move or be comfortable without causing pain or vomiting.  I seem to lack a sense of purpose and, to be honest, death doesn’t look that bad.  Things do get better on my week away from chemo.  It just sucks that I feel so worthless most of the time.  Who would hire a girl who’s sick two-to-three days per week? No one would.  I could find a way to be self-employed, but it is hard to be motivated when your head is pounding or you think you might throw up at any second.  It just really sucks right now.  Maybe I will get used to this chemo and it will get better?  I don’t know.  We won’t really know until it happens.  Also, I won’t know if this chemo is even working until next week so it just feels like I’m doing this for nothing at the moment.  On the bright side, I have begun watching a great deal of HGTV and now feel confident that I could help you buy a house or redesign a room.  So yeah, I will sit here with my old lady self and wait.  Maybe next week we will get some good news and maybe we won’t.  The thing about having cancer is that you never really know anything.  Oh, and that it turns you into an old woman. 

Sick of Being Sick

Recently, I wrote a blog entry that was pretty much a ball of raw, pent up emotions.  Since I pretty much threw it at everyone without explanation, I'm certain that more than one of you is confused.  Let me try and explain everything that's behind that last post.  It's kind of a long story, so you might want to sit back and settle in somewhere comfortable. 

About a month ago, I started having back pain again.  This pain was so bad and so unexpected that it would wake me up in the middle of the night or early in the morning.  After one particular bout of pain, I called my regular doctor and set up an appointment to discuss my back pain and what could be done about it.  The doctor promptly scheduled me for physical therapy to strengthen my abdominal muscles; which, it appears, have been destroyed by reconstructive surgery and tumors.  Yay, abs of steal here I come!

Unfortunately, this was not the only problem.  Though the physical therapy helped a lot at first, soon, it did not.  The pain came back and worse than ever.  I ended up in the Emergency Room at 12a.m. on a Friday night.  They gave me a steroid shot that seemed to help and prescribed me a steroid to take for the next few days.   It would seem that that particular steroid causes me extreme depression as all it did was make me cry for three days.  The pain came back on Sunday and I called Illinois Cancer Care.  They told me to, "hang in there" and wait until my Tuesday appointment to figure it all out.

Monday came around and it was time for my weekly migration to and from the hospital for blood work.  I looked at the phlebotomist in tears and explained that there was no way she was going to get any blood from my veins and that she should call a nurse to access my medi-port.  Serendipitously, the nurse was Emily.  My chemotherapy nurse who is one of the most amazing people I know (Side note: You do NOT mess with Emily.  Girlfriend is tough as nails.).  She immediately looked at my sad and pathetic self and made a phone call.  By that evening, I had new pain medication to tide me over until my appointment the next day. 

You would think that things would get better at my doctor's appointment, but they didn't.   My chemotherapy had stopped working.  My cancer counts, which had dropped about 100 points went right back up.  I was to undergo a barrage of testing and scans for the rest of the week.  Also, it had been two weeks since I had last received chemo and I would not be getting chemo that day.  It was a bit hard to swallow and definitely terrifying. 

That evening I started my new pain medication; a fentanyl patch. A fentanyl patch is essentially a small Band-Aid filled with narcotics.  It slowly and steadily pushes them through your skin and into your body.  It was not a happy union.  So followed the day of vomiting.  I had to go to the hospital to get a bone scan so that meant spending an entire day at the hospital throwing up into their little vomit bags (honestly, a green color is perhaps not the best of choices for their bag. Though whoever decided this has a sick sense of humor).  I was so dehydrated and under nourished that we called Illinois Cancer Care and asked for an IV to be ordered at MDH. The girl on the phone said that she could order one in Peoria, but not at MDH, which is silly because they order IVs at MDH for other cancer patients all the time.  So essentially, she wanted me to get my bone scan, spend all day suffering, and then drive the two hours to Peoria just to get an IV.  The lady in charge of my bone scan said that was ridiculous because they would get much better pictures if I were hydrated than if I weren't.  I looked at my mom and I said, "Call Dr. Miller."  Dr. Miller is my regular doctor and a saint.  He immediately put an order in and I spent the hour or two between my radioactive injection sleeping on a hospital bed and plugged into an IV.  It helped so much.  Though, it didn't quite stop my vomiting, it did make me feel better and slowed it down.  I succeeded in making through the day.  Thursday was a blur of pain medication induced sleep, and by Friday I was well enough to get my CT scan and starting to adapt to my new medication.  Unfortunately, one of the side effects of this medication is that I am often nauseous and I tend to throw up in the mornings around 3am. On top of that, it doesn't work as well as I would like it to and I often have to supplement with Tylenol and long baths.  The long baths thing isn't really a problem though, I'm just whining because I can…

The next Tuesday came around and I met with my oncologist.  He put me on a new chemotherapy that is over the counter.  This is wonderful as it means I do not have to come to the Macomb Oncology Center as often.  I only have to go every three weeks or so for doctor's appointments.  I also only need to do blood work on the day before that appointment.  YAY!  However, it turns out that this drug also makes me nauseas.  I just want to spend a day or even a whole week not throwing up. At this point, my throat, mouth, and nose are all burnt up from being sick on a regular basis.  I can hardly stand it.

My life this last month hasn't been easy and it doesn't seem like it is about to get easier.  I really hope that this new chemo works and eases up on my back pain.  Once that happens, I can get rid of the fentanyl patch and just focus on the chemotherapy drug.  At this point, it just seems like there are too many drugs.  All of them help me, but they all make me sick too.  I am sort of getting used to this, though it is super hard.  I'm just trying to get by one day at a time.  Hopefully, things resolve themselves soon.

You're Just So Pretty

"You're so young," they tell me as I give them the news.

Like it isn't possible, like it negates the fact that it's happening.

I take a moment to put on the smile.  You know, that smile that says it's okay.

The one that says, "Hey it's no big deal, I'm tough." That one.  The one that puts them at ease.

Then they really lay it down, "But you're pretty."

As if pretty means that it is all okay.

As if pretty protects me from the pain.

As if pretty keeps me from throwing up in that little plastic bag at the hospital over and Over and OVER,

because the medication that's suppose to HELP me only makes me more sick.

"You look like Snow White" they say.  Like it's supposed to make me feel better.

Like being pale as a result of the poison pulsing through my veins is a good thing.

At least you look like a princess.  Little do they know, I am a princess caught in a prison cell.  I am stuck within my own house, within my own body fighting to get out. 

The plot twist, the villain is me.  As these cells divide and multiply, the very pieces of me that give my life bring me closer to death.  As these cell blocks are building on themselves, they are tearing the rest of me down.  I am screaming in pain, silently, every bone in my body, my muscles dying to get out. 

"You're just so thin. I wish I could look like you."  Do you?  Do you really wish that you could fight this battle.  This battle between good and evil.  This civil war with yourself?  Waking up throughout the night, being unable to move as the pain slowly climbs through your veins. 

It starts by slowly creeping up your spine and through your stomach, spreading into your fingers.  It starts as physical pain, but soon twists its way into your thoughts; writhing and gnawing at you, telling you, "you have no purpose, give in, give up, you're dying…" Ah, but then, this is what you wanted right?  This is the desired effect.  You're young, you're pretty, you're thin."  This is what they've always told us we wanted.  This is what I've always been told that I needed to be. 

"You're just so pretty," they tell me.  Again, I put on the smile and fade away.

Cancer Patient Etiquette: A Guide

I have wanted to write a post about cancer patient and family etiquette for some time now.  Quite frankly people just do not know how to respond to sickies.  I know I didn’t before I got cancer and even now I sometimes catch myself slipping into that nervous anxiety about where to look and what to say to other sick people and their families.  I guess we all just need to put ourselves in a position to understand.  The best way to do that is to speak up.  So I’m speaking up as a cancer patient and a person whose doom is imminent (I guess this is true of all people really. I’ve just always wanted to use the words imminent and doom in a sentence…).

If you are not a cancer patient and no one has recently foretold your demise, then I suggest you speak up by asking questions.  Honestly, please ask me!  It is so much better than uncomfortably avoiding real conversation or awkward silences.  I don’t usually mind and if I do mind, I will tell you.  So go ahead!  I have talked to so many other current and past cancer patients about this issue.  Being sick is isolating and part of the reason that this is true is because people are afraid to talk to you.  People don’t want to inadvertently hurt others.  While this is wonderfully kind and gives me hope for the human race, it is also counterproductive.  By trying to avoid hurting us in the first place, you just make us feel more alone.  This is no good.  Ask questions and get answers. 

Another issue is eye contact.  Aside from avoiding conversation topics, people tend to avoid looking at cancer patients.  I think this stems from our parents telling us how rude it is to stare at others.  Technically, it is rude.  However, I would rather you stare at me and ask me questions than try to interact with me as little as possible.  This time around things are better for me because my hair is not likely to fall out and I have very few outward signs of illness.  However, many cancer patients or other sickies tend to have very obvious signs that they are not healthy; be it baldness, scars, a mask, or missing limbs.  It is so sad when no one will look at you, talk to you, or touch you.  I beg of you, go ahead and stare.  At least it means I exist.  Again, if it bothers me, I will let you know.  Communication is a wonderful thing, my friends.  I am not afraid to use it. 

As an ESL instructor I’ve given more grammar lessons than I can count. That being said, even native English speakers need a grammar lesson every now and then.  Verb tenses can be confusing, but let us all remember that the simple past should only be used to describe or discuss actions that have already been completed.  So to quote the mighty words of Monty Python, “I’m not dead yet!”  Please don’t say things like, “It was a pleasure knowing you” or “I was so happy to have been your friend” or “You had so much ahead of you” or “You had so much promise.”   I mean really people.  I should hope that it is still a pleasure to know me and to be my friend.  Unless I did something to offend you and then that’s fine, though I would sincerely wish that you talk to me instead of terminating our friendship.  I also have faith that there are still things ahead of me and that I am still promising.  Sure I’m dying, but I am currently alive and hope to accomplish as much of a future as I can.  I will continue trying to live my life even if I only live five years or twenty. 

On the dying note (remember, dying not dead), I will and do make a great number of off-color death and cancer jokes.  I want you to know that it is okay to laugh.  I can’t do too much about this so I might as well laugh about it.  Besides, I’d rather die laughing than doing anything else (see what I did there?).  Again, it is okay to laugh.  We all cope with things differently and my method of coping is an insane amount of potentially politically incorrect jokes.  However, if it makes you uncomfortable, say something.  I understand.  I won’t necessarily stop, but I will tone it down around you.  You really don’t need to feel bad about it. If you choose to make a joke, I won’t be upset either.  Actually it makes me feel more comfortable knowing that you’re comfortable enough to joke about it too.  If you offend me, I will tell you.  Until then, keep laughing.  It’s better than the sad face.

Speaking of the sad face, let me explain to you exactly what that face is.  It is the face that people come up to you with that says, “I’m so sorry you’re dying and have cancer and I know I’m supposed to look very serious and sad when I talk to you so I’m trying extra hard to look sympathetic.”  PLEASE STOP!  I know that you care.  You do not have to try so hard to show me.  I appreciate it to no end, but it’s depressing (pun intended).  I know that you are sad.  Cancer sucks and dying really sucks.  I am aware.  You don’t need to be extra hard on yourself.  You can hug me all you want (seriously, I love hugs…), cry if you need to, be sad, and you can tell me you’re sorry but you do not have to try to look extra sad.  I will definitely believe that you are sorry regardless of whether you “look” sorry.  I believe in taking people at face value.  Perhaps that’s not the best choice of words to use here, but you know what I mean.

The last thing that really gets to me and to my family is the assumption that I and my family should bunker down and wallow in sadness.  We are certainly sad, but we have chosen to enjoy what time we have left together.  I am allowed to continue to live and so are they.  They do not have to nor should they be expected to drop everything that they love to do simply to sit at home and wait for me to die.  They are going to continue to go out with friends, enjoy parties, go to work, and generally just have a good time.  It would be so hard on me to think that they wouldn’t live their lives or be happy just because of me.  On that note, it would be difficult for me not to live my life just because my body decided to stage a civil war.  I am capable of doing things.  My doctor told me recently that I could and should get a job before I went crazy.  Many people with cancer do continue to work while receiving treatment.  Cancer doesn’t mean incapable.  It just means that some things can be a little tough.  I believe someone told me that the hard things in life are those most worth doing.  It seems to me that if cancer makes life hard, then life is worth doing.  Bam! logic!

So there you have it, a fool proof guide to treating cancer patients and their families like human beings.  Essentially what it breaks down to is ask questions, acknowledge our existence, expect us to live our lives and pay attention to your verb tenses.  I am a person and I will continue to live until I am not. 

*If anyone else has any good suggestions or pet peeves considering the treatment of those who currently qualify as unhealthy, please write them in the comment section below.   I appreciate any advice that could potentially help others.