Posts Tagged ‘health’

The Space Between Chaos and Shape

In Uncategorized on September 8, 2013 at 4:01 pm


A 'before' picture

A ‘before’ picture

To begin, I got up off of the forest floor.  The first step in doing that was most likely writing about having been down there.  The reaction I got from so many of you was overwhelming- it buoyed me back into the land of the living.  Not only the love and support, but the candid honesty from so many about your inability to move forward, to make it better, to make it stop.  Thank you for giving me love and empathy when it was so sorely needed.

The second step was starting therapy.  I was operating under the assumption that I was depressed based on circumstance.  My sister experienced the same thing while going through her treatments for breast cancer when her doctors said that based on what she was going through, it would be weird if she wasn’t depressed.  But I think that response is far too cavalier.  Just because circumstance makes us entitled to our depression doesn’t mean we want to live in it indefinitely.  So while my financial situation made it impossible, the ‘family foundation’ (a term I use metaphorically, hence the quotes) offered to help me seek some help.

I treated finding a shrink much like online dating.  I read a bunch of profiles, picked a handful of people and set up ‘first dates’.  It’s an eye-opening experience.   After every meeting I was struck with the aspects of my life on which I chose to focus.  The surgeries and illness were introduced much like exposition.  They only served as set up.  It turns out I am seriously pissed off about a bunch of shit.  And having learned in my 20’s that no one else is to blame for the garbage you carry with you (sorry about that boyfriend from my 20’s) I need to lighten the load and learn to be content with what is.

I finally settled on a woman (I was sure I’d choose a male therapist) who treated me with gentle kindness (I was sure I wanted a drill sergeant to kick my ass)- much like my choice in who I dated (when I dated) the right person for me was not who I thought I was looking for and is, in fact, exactly right for me.  The thing she said that convinced me she could help was that I have a lot to mourn.  There are things I have lost, physical and emotional and I need to feel sad for those losses before I can move on.  So I’m going to sit with her and see if I can’t sort out some of this shit.  If it gets better, it will make for far less juicy reading in regards to the blog, but I can live with that.

But I would be remiss if I gave all the credit to starting therapy.  After the post about the forest floor I stopped eating flour and sugar and while my weight hasn’t budged all that much, my self-hatred has started to leave the building.  I don’t know why it is, what it is in those foods, but along with making me fat they make me sad, mean, impatient, exhausted and intolerant.  Have you ever tried that personality combination with a nine year old?  The last week or so I have let a little bit of sugar in for a visit.  There just isn’t room for it anymore, so the all or nothing button has to be reset.  I believe that we all have a certain reservoir within us and there’s a lot of space to fill.  But once it’s at capacity, there’s no room for anything else- bad or good.  Food has taken up too much space in mine.  It was intentional, because leaving it empty was too painful.  But now I want that space back.

During Rosh Hashanah there’s a ritual known as Taschlit.  You gather stones that represent the sorrows, disappointments, regrets of the year behind you.  You say a prayer for those things you have carried and then cast the stones into the ocean, allowing them to be washed away with the tide.  It’s a ritual I love and Santiago and I couldn’t go today so this post is my ocean and this despair that I have shared is the stone I am casting.  It’s time to make room.

In the space between chaos and shape there was another chance.  —Jeanette Winterson

Hell yes to saline!!

In Uncategorized on October 30, 2012 at 3:50 pm

This is a lesson in talking to your doctors.  And talking, and talking…

After my last post in which I described my disappointment at being unable to proceed with the removal of the expanders for another three months, I decided to follow up with my general practitioner and express my frustration.  It turns out, he had forgotten that I still had the expanders in.  Now before you respond with horror at this oversight, cut him some slack.  I am a walking medical chart with so many problems there is no way he could track each one at all times and still manage other patients.   He asked me to come to talk about options and promptly referred me to a vascular surgeon to see what might be done to resolve the remaining blood clot.

I saw the vascular surgeon today and he said that the chances of the clot clearing the next three months are slim but as we know the cause (the theory is the IV from the initial surgery caused the clotting) and the location of the clot (in my mid-arm) is not all that dangerous, that I can go ahead and have the surgery as planned on the 15th of November.

Now, it may seem strange to jump up and down over getting to have surgery- but just to recap, this means the hard metal and plastic expanders that have been serving as my breasts for the last four months are coming out and being replaced by some soft, let’s call it breast-adjacent- substance.  So in my near future I can look forward to sleeping on my stomach, not being frisked at airport security, not wincing every time I have to reach behind me, and most of all, not having to anticipate another big surgery.  The two biggies will be behind me, and maybe I’ll be able to move forward in a way I haven’t been able to yet.  Maybe I will be able to really focus on the future and not think of it as something at which I am simply trying to arrive.

I think that we all have a tendency to put our lives on hold when we are staring down major medical obstacles.  How often have I heard, “”just get through this first and then you can deal with x y & z.”   But I recently realized that I have been treating my entire life as though I am…done.  The book has been written and sealed and that’s the end of it.  As though my future was simply something to be held steady.  Fuck that.  Having made it through , the last thing I want is anything to be held steady.  As Missie keeps reminding me- “as long as we’re going to live we may as well…”

So send suggestions.  I have a big wish list but the world is a huge place and I guarantee there are things I have never even thought of that I know I’d love to do.  In the meantime, I am going to try to stay calm, to do what my doctors say, to remember that menopause is temporary and most of all, to make plans, toss them aside if need be, and make some more plans…

Update Shmupdate

In Uncategorized on October 15, 2012 at 9:40 pm

So I have been waiting to write a post until I felt better as I hate to go all negative Nellie when I write, but shit just keeps hitting the fan.  So I’ll do a brief update now and hope that when next I write things are a bit sunnier.

To begin, menopause is really beating me up at the moment.  Today I described it to my doctor as feeling like my mood is the equivalent of nails down a black board.  I do everything I can think of to combat it.  If I am restless at home, I go out.  If my concentration is for shit, I change my method of working.  If I am eager to punch someone in the face, I make a point to find someone I really detest and then I just go ahead and do it- for Christ sake, I have to blow off steam somehow.  I asked if there was ANYTHING that can be done to stabilize what feels like constant, full blown PMS and my doctor said we might try Wellbutrin, an anti-depressant that can be used in conjunction with Cymbalta, the other anti-depressant I take for MS nerve pain, but I remembered that my neurologist told me that Wellbutrin wasn’t allowed for MS patients as it has possible seizure side effects.  So- back to the drawing board, or the black board as it were.

And it’s not enough to be a depressed, painfully impatient hag with metal and plastic boobs without nipples- you know, reminiscent of barbie’s boobs.  To add insult to injury, life has to continue to go on.  And this state doesn’t allow me to take things in stride.  This week forced me to contend with the sudden viral death of my son’s new kitten, the imminent feeling of powerlessness that comes with the exit of people I love, and news that my blood clots are not clearing up.  So what does this mean in the grand scheme of the BRCA battle.

Until the clots clear I cannot go off of the blood thinners, which were supposed to be complete on the 20th of this month leaving me cleared for surgery on November 15th.  Due to this recent development, I will not be able to have the expanders removed until February, assuming the clots decide to clear after 6 months.  Which means that my reconstruction will now not be complete until September of 2013.  It will be more than a year of treatments, surgeries, blood thinners, and menopause with no hormone replacement therapy and let me tell you- I am not Miss Mary fucking sunshine about these developments.

But what can I do.  A friend suggested primrose oil for my menopausal symptoms- I’ll ask the team if that’s an okay alternative therapy and pray it calms my nerves a bit.  I’ll look into acupuncture and acupressure for treatment of blood clots.  I’ll continue to work, to write, to take care of my son as he mourns the death of his sweet little cat, and I will probably get him a new one before the year is out, after he has had a chance to process this in his 8 year old manner.

I’ll also take painkillers when the expanders hurt- because I’ve lifted too much, walked too much, travelled too much or done anything else that normal people do everyday.  And I’ll wait, impatiently most likely, but I’ll wait to have these pieces of metal and plastic changed out for something that resembles real breasts.

When I started on this journey, I had no idea how hard and long it was going to be.  I know it’s a means to an end- I see the bigger picture and all of that crap that I have been saying to keep myself afloat since this all began, but right now I’d just like to lie on my stomach- or even my side- and not be deterred by the pain inherent in having robot parts instead of body parts.

I know this isn’t the end of the world,  I get that.  I have still reduced my cancer risk from 97% to 4% at least where breast cancer is concerned, but I have begun to wonder at what point things might ease up a bit.  I could use some joy, some pain free days, some relief from worry and someone to tell me it’s all going to be okay and for me to actually believe them.

I feel like a living version of “you couldn’t make this shit up if you tried.”  That isn’t the slogan I’m going for, so I guess I’ll just have to keep moving until the reality of my life and the hope I have for it meet somewhere in the middle.