On losing hope... and then finding a crumb and picking the trail back up

After my cancer treatment ended, I felt AWAKE.  I felt newly alive and filled with gratitude and wonder and love and calm.  I felt like a better person.  I felt inspired and believed people when they said they felt inspired by me.

 

Now I feel like I have lost every bit of whatever I gained from that experience.

 

Now I feel defective and unfixable.  I am wracked with guilt, constantly unable to talk myself out of thoughts that I have ruined Ryan’s life and destroyed the confident, invincible man he was before my illness.  I feel hopeless that this cystitis will never be fixed or that the longer it takes, the more broken I will become in the process and the harder it will be to bounce back if I am EVER able to.  

 

And I feel alone.  It’s easy to support someone going through cancer.  It’s something everyone is familiar with and understands.  But once you’re “cured,” that is all some people can see.  They expect you to be all jubilant and healthy and my reality is – that’s over.  The fucking cancer continues to ruin my life.  Possibly even moreso now.  I am in pain almost daily since the surgery.  Some days it is crippling.  I walk around the shop at work with my shoulders hunched practically to my ears because every fucking step is agonizing.  Everyone here looks at me with pity.  They are awesome and try to joke and make me smile, but it’s getting harder and harder for me to do.  One day, as I was feeling especially sensitive, one of the dudes who likes to tease me every half hour when I walk by to pee did his standard “Gotta pee?” and I snapped at him that he’s making fun of a painful side effect of my cancer treatment.  He got sorta serious and said he knew, but he figured if he made me laugh about it I wouldn’t be so sad.  

 

And that’s just it.  I am sad.  This condition has made me so sad.  I feel like I can’t do anything.  I’m afraid to make plans.  Afraid to be out of the house or away from a bathroom for too long. The pain is crippling but the sadness is destroying me.  I’ve lost my life.  

 

Someone recently said something about a line in a movie they had seen… I can’t remember who it was or what the movie was, but I remember the line:

 

“Don’t die before you’re dead.”

 

I feel like that is what I’m doing most days the past few weeks.  Like I am a zombie.  I can’t even really remember the person I became after my treatment.  Who was that woman who was so awake and so alive and so filled with positivity and gratitude?  Every night before I go to sleep, I write in my 5 year journal things that I am grateful for today.  Yesterday, I wrote “Today I am grateful that I have a home and a job.”  Really?  That’s all?  I feel sick that that is all I could come up with and feel like I was being honest about yesterday.  Embarrassed.  Who have I become that I didn’t feel grateful for anything else. For my life.  My husband.  My family.  I laid there in bed, looking at that journal, and for the first time in the year and a half since I started writing in it, I honestly felt grateful for nothing.  But I wrote my job and home just so the page didn't stay blank.  Pathetic.


I have an appointment shortly with Dr. Avellone, and I feel hopeless even about that.  I cannot figure out how to be Positively Phoebe again.  She is lost.  Ryan read a bunch about various treatments for this Radiation Cystitis that have moderately good success rates, but some of them sound like painful procedures and I am so tired of being poked at down there.  I will do anything, obviously, to fix this or make it suck even a little bit less... But I can't say I have a lot of hope.  We shall see...


.............


Later:


The appointment went well, I suppose.  Dr. Avellone said that my case is right about in the middle, severity-wise.  He also said that my particular cystitis is concentrated at the bladder neck, which is a much more sensitive tissue, hence my more intense pain.  He also believes that, since the pain seems to have gotten considerably worse since the biopsy that perhaps the pain I am feeling is related more to the biopsies he took taking a while to heal.  This is common, I guess.  He said it could take months for that to heal, and perhaps once it does, the pain may settle considerably.  


At that moment, I felt myself soften again.  And something resembling hope came trickling back into my heart and mind.  


He wrote me two prescriptions.  The first is a daily med that should cut back the whole having to pee 15+ times a day thing.  Ringing in at a fucking dreadful $66 a month.  He said there is a cheaper version that is a three times a day one that will cause my mouth to essentially turn into the Sahara, but I my just have to go for that, or at least try it.  I cannot deal with that expense.  Especially considering the other one, which is supposed to settle the whole pain thing is $73 a month!!!  Ughhhh.  I cannot win on these medications!  And my insurance deals with meds in a totally fucked way.  Sucks.  The awesome thing, though, is that second 'script is called... wait for it... 


Urispas.  No.  Come on.  Sound it out.  You're. A. Spaz.  I have been given a drug that is calling me a spaz.  Ryan and I both cracked up when Dr. Avellone told us that one.  He said it was good that we had a sense of humor about it and Ryan responded that him prescribing me a drug called You're A Spaz was the best thing that had happened all week.  Sad that that could not have been more true.


Also sad to be 38 and have a monthly prescription bill of close to $200, and an organic, hippie supplement bill of another $100.  All because of cancer, the fears it brought, the realities it brought into focus, and the side effects it left behind.


Fuuuuuuuuck cancer.


Fuck it for me.  For Ryan.  For my knitting dad who beat it three times and my mum who went though it by his side and by mine.  For the four grandparents I lost to it.  


Fuck it for Pepper.  Fuck it for Christina's mom.  Fuck it for Andrea.  Fuck it for Kristen's dogs.  Fuck it for Dixie.  Fuck it for Spencer and Lacey and Todd.  Fuck it for a dear friend's dad.  Two dear friends' dads, actually.  Fuck it for everyone from my retreat the other weekend.  Fuck it for another close friend who had a huuuuge scare last week.


Fuck it.  


I need to get Positively Phoebe back.  I really hope I can.  But I guess the fact that I am hoping at all is progress from the stuff I wrote before my appointment.  So I must not be dead yet.


Xxo, Phoebe 

Comments

Pepper said…
Hey-we have to stick to some plan we made unspokenly a decade ago: we are going to have EXCESSIVE VITALITY on the coroner's report and that better be at least another 38 years. Or longer, since 38 more years would mske us Officially Middle Aged Women and that makes me nervously think of polyester and tupperware. No deal.
Daniela said…
I know you're sad. I feel it. But you still represent hope. It is still in there. It is stitched into every fiber of your being. You will get through this, and I love you. And you have every damn right in the whole universe to be sad. You feel whatever you damn well feel like feeling. Because you still radiate light. And we will all see it for you until you're able to see it again. *hugs*
jim nelson said…
Sweetheart... I know the feeling. We've talked about it, and being POSITIVE takes work, but it provides us with hope! I am here for you, and I am SO GLAD YOU ARE HE FOR ME!!!
Anonymous said…
"Don't die before you're dead"

Wow. As an annonymous reader of your blog this of all words and posts hit me. I in NO way have gone through cancer - but the past two years have really sucked a big dick. I have not only physcially suffered but more mentally.

Thank you for that one line of clarity.

Thank you for your honesty.

Thank you for allowing all of us in internet land to see your vulnerability.

Thank you for writing things that make me realize sometimes life sucks and after the suck is over you can feel lost and sad and even though people say things are "better" they are in many ways not. Sometimes it is just good to know we are not alone in that feeling.

However "Don't die before you're dead" is quite the wake up call. Maybe we all (well ok I) need to try a little harder to be kind with myself and allow life to come back to me to be all that I can be.

I hope you continue to heal in all ways.

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