Chemo-Pond Reflections

Third chemo toxin round complete.  Three is a big number for me, it seems.  Let’s see if it ends here…

I came home with battle wounds.  The “needle man” punctured two of my tiny veins right through.  It took over half an hour for him to find a vein that he could actually use.  I am amazed that I have not developed a phobia of needles, especially after my delightful experience with the “spinal tap needle man” in the ER.  No puking, but I had to resign to my bed and that is where I stayed until this evening.  The rheumatology nurse called me to tell me I had to up my dose of Vitamin D because I am too low.  I know it’s probably because of the chemo (it’s known to strip the body of Vitamin D), but it’s more dramatic to think it’s because I live a vampiric existence these days.  The sun hardly ever touches my moon face. 

Lisa Ray, the actress living with bone cancer who inspired me to write this blog had her last chemo the day after I had mine.  She hadn’t written in her blog for weeks.  She said she couldn’t participate in her life, that she was “sitting on the roof” tipping pepperettes and whipped cream into her moon face.  She came back down from the roof, of course, but before she did she asked her readers, “are you fantasizing about a Cancer Vacation?  Cause if I didn’t feel so completely depleted, I’d be having the time of my life.”

I don’t have a rare form of cancer.  I just have lupus.  The timelines of my life are not held in the same menacing way.  I can’t begin to understand what Lisa Ray is going through and yet when she writes those words I feel myself melt right into them, like they were mine.  She too, is on steroids, experiencing night sweats and alterations in her personality, she calls her body her expanding wetsuit and every entry has at least one salute to her ever-expanding moon face and her unquenchable hunger.  I don’t have cancer.  I have lupus.  How can I have the audacity to say that I know what a cancer patient feels like?  Things could be so much worse.

My friends and family tell me to relax.  They tell me to watch movies because they wish they could stay home from work and watch movies.  They tell me to sit back and enjoy my “vacation.”  Have I mentioned that I am now officially on “medical leave?”  I have a great boss and I work for an amazing organization and they have given me time, as much time as I need to rest, to recover, to find myself again, to understand how the wolf has changed me this time around and I can’t even get myself to have a good time while doing it?  Everyone wishes they had this opportunity to sign out for a while, to reflect and all they see is me, sitting on my floor with my moon face in my hands wishing I was back at work again… wishing I was doing SOMETHING, anything.  I’m trying to have “fun.”  I swear.  It’s just that it also feels wrong to “have fun” right now, especially when I know things are so busy at work and also because, well, things just don’t feel very fun-like.  

I am happy though, of course.  I have such an amazing support system.  I am held up by the strongest and most loving people in the world.  They visit me and bring me my favourite treats and take me out to eat my favourite food.  They email me lovely notes telling me how much they love me and how proud they are of me and how strong they think I am being.  I have a roof over my head and lovely home-cooked meals and I get to see the smiling, warm faces of my parents everyday.  I can take walks and sleep in, write stories and read books.  I haven’t had a major manic episode in almost two weeks.  This might be my last chemo treatment.  I am down from 60 mg of prednisone a day to 40 mg.  Life is good… so, why can’t I have “fun?”  I feel like I owe it to all of you, all of you out there working hard without a break.  If I don’t have fun it’s like a slap in the face, time wasted.  That’s the last thing I want to do.  There is no time to waste.   

To be honest, I have found myself thinking about not writing in this blog anymore.  I am still sorting through those feelings… I have been feeling very confused about it’s role in my recovery.  I have been doing a lot of research on lupus, brains, bipolar hypermania and steroidal psychosis lately, even more than usual.  My whole premise for this blog was that “knowledge is power,” that we all have the power to heal ourselves, that in order to do that we have to face our disease full on with openness and courage.  My mania made me unafraid to pour my heart out into the internet world, to share how weak I felt sometimes, the fear and yes, the hope as well, but is it too much?  Should these words be tucked away in my journal somewhere or reserved for late night conversations over tea with close friends?  Am I just as silly as those who twitter their everyday goings-on for people they hardly know?  Is this just some kind of self-centred, self-serving exercise made in throes of mania?  I came across some “knowledge” the night before my chemo treatment that sent me reeling.  It made me question if knowledge is really power at all.  I’ve been in search of knowledge constantly these last two months – I am reading, researching, googling, questioning 24/7 and I don’t feel like I know more at all.  I just feel more confused.  I am no closer to figuring out how I move forward with my life, of what the next step is in regaining the independence I once had.  The only thing that is certain is that I am changed.  What that means in it’s entirety I do not know.  Only time will tell.  So do I just stop and truly “sign out?”  Do I stop researching and blogging and just read fiction and write stories?  Is that the real way to heal?  Is that the real way in which I will discover the Elena left behind after all of this is over?  I, of course, don’t know and I don’t think any of you know the answer either, so maybe the whole point is that there are no answers.  

Well, that’s just unacceptable, people.  There has to be an answer.  There has to be.  I just wish I could trust myself enough to know when I’ve found it.

4 thoughts on “Chemo-Pond Reflections

  1. I don’t think you owe anything to those people working. I wouldn’t expect you to be having fun, you aren’t on a holiday, you aren’t taking a leave of absence for no reason. You are working, working really hard everyday to fight for your life. I think you have the hardest job that I know of, right now. It is 24/7, you can’t leave it at 5pm or at the door when you come home. Do not feel remorse about being a vampire on your time off and not having fun. Now is not the time for fun!!!!

    I also hope you don’t stop writing in the blog. It is selfish I know, but I feel like I am connected to the real elena going through real problems and know on a regular basis how you are doing and how it feels to be you. But of course I will support you whatever you chose.

    Love ya!


    • The other keepers have expressed the same sentiment re: the blog. I will keep writing for now, for you and for the rest of my lovely keepers, who represent the majority of people who come on here anyway! :)


  2. Perhaps you are being too hard on yourself about the research. Knowledge acquisition is not an instantaneous thing. We can’t read a book one day, and BANG, we can now talk intelligently with industry professionals for hours on end. I’ve heard you speak on the topic, and you speak well based on your research.

    Take heart, take care, and rest easy knowing you are making the progress even though you feel you’re not.


    • Thanks for your message, Steve. I appreciate your support and kind words. My post was more about my frustrations on how the knowledge I acquired only made it more obvious that I will not find a definitive answer in regards to the cause and ultimate effects of my own lupus cerebritis case. The “experts,” my doctors, are not able to provide me with any answers, so I guess I shouldn’t be surprised that my own research would come up with the same result. Oh well, I think I have to accept that there are some things we will never know for sure.


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