Chemo in Louboutins

I cut this Ralph Lauren ad out of a magazine about thirty years ago and I still have it hanging on my wall. It has traveled with me from New York to London and it is pinned up overlooking me while I write this. There is something so chic and timeless about it that I love.  I have always had long hair and still to this day I love it on women – no matter the age.  That was old Susan – pre-chemo – long, luscious locks dyed blondish.  You can see it in my posts from before.

It’s finally coming back!

OK – the truth is it’s not back, back but last week was the first time I could use a hair band to put it up.  I started wearing my wig September 2012, stopped wearing it February 2013.  Seven months later it is finally long enough to put back into a ponytail.

A few friends were over for dinner and one actually stopped mid-sentence and said, “Your hair is officially long now!”  I do feel totally self-absorbed but it is all about you when you are looking and trying to feel like yourself again.  Unless you had short hair in the first place, it just takes time, and sometimes time is a precious commodity.

So finally I feel a little more like me. I even blew it dry the other day an, although, it was not so glorious as the ponytails above, it’s getting there.  I am leaving it curly – too tough to battle those chemo curls – and embracing the body.

Still I am longing for the day when I can tie my hair back in a ribbon and my black sweater is covered with stray long hairs.  You will be the first to know.

Here is how I look now:

Here is the infamous first ponytail, not quite alla Ralph Lauren yett!

This is the soundtrack for my post today…play it while you read.

Is it too late to say Happy New Year when it’s almost Valentine’s Day?  I don’t think so! So Happy New Year everyone. Hope you are all very well!

Now on to the topic at hand…this post is a love note to those out there who helped me and continue to support me…all of you are included!  I think you are officially called “caregivers:” moms, dads, spouses, partners, friends.  We love our docs, nurses, phlebotomists, etc. but it’s their business to look after us and they do it well and with panache.

You guys are there just for the fun of it, not paid participants or professionals.  For some, this is not an easy job, who wants to see their loved ones suffer – no one.  To act with grace under this type of pressure takes control and is very difficult.  Some have it, others don’t.  That’s why most people react in such different ways when informed of a friend’s illness – some disappear and some are over-the-top present.  I have said before in this very blog that you mustn’t judge your friends on how they react – you never know the story behind the reaction.

One thing is for sure – it is rare that anyone takes any heed of how the caregivers are feeling.  Almost no one calls and asks how they are doing.  If, on the off chance, someone actually does, it for a rare second and then onto how the patient is.  The University of Pennsylvania Hospital provides Reiki for those having chemo and radiation, it is also offered to the patients’ caregiver.  Still a lot never wanted to do it, I think maybe they feel guilty that they don’t deserve having a little indulgence.   This is far from the truth, without them, we, the patient, would have no one.  So my advice is take advantage of the free stuff, it’s ok to have a treat.  Your charge is not going to be unhappy if you get a break once in a while.  We need you to be fit and ready to take care of us. You can’t do that if you are suffering as well.

So Happy Valentine’s Day all you.

Smack, smack, smack (defined as an enthusiast kiss!)

My Valentine Louboutins!

The closest thing I have to poppies – 11/11/13

Today is Veteran’s Day in the US and Remembrance Day in the UK.  It is also the year anniversary of my final chemo (November 5 to be exact).  What I survived pales in comparison to what real veterans have seen and experienced, yet cancer is always described in military terms.  You even call yourself a survivor, if you make it once more unto the breach dear friends once more…

I was photographed by Rankin because I was a survivor  – but did I battle, struggle, fight enough to deserve this prize?  Or did I sit there with an IV in my arm while watching Game of Thrones one day and Once Upon A Time the next, wearing my fancy shoes?  Sure it wasn’t pleasant, but was it hand-to-hand combat?  Was I as courageous as everyone tells me?  Was it real honest-to-goodness bravery?

Is it because it seems so insurmountable that we can compare it to war?  Is it that we are fighting an unseen enemy who is trying to kill us every step of the way?  Unlike soldiers, we are not trained for combat.  That is why some people specifically seek out others who are going through the same thing – to muster up a corps battalion. I preferred to do it on my own…well, I had you all and this blog so I was never really alone.

The doctors, nurses, medical staff are the ones fighting to save us.  They are in the trenches trying out new weapons of mass destruction, so that we can live on to wear those shoes, scarves, wedding rings we already have and to be around to add new ones to our collection.

Let’s thank all those who are on the front line for us this special day!

http://www.youtube.com/watch?v=UPw-3e_pzqU

No one says it better than Al in this clip from the Godfather 3.

So you’re home back to living your life..back to the normalcy you longed for while going through treatment, you’re invited to a cocktail party looking all glam and feeling good when someone has to bring up the fact that you had cancer.  In a second, everyone’s demeanor around you changes and you become the “sick” one…the one to be pitied..the one whose hand is touched and you are giving that “knowing, concerned” look and then everyone tells you, Oh my friend has cancer and then goes on to describe their own cancer story.  All you wanted to do was have a glass of wine and enjoy yourself or discuss the new George Clooney movie or not talk at all.  But you are drawn back in….. talking about the very thing that you were trying to put behind you.

Is what you went through something public to be talked about?  Is it what you want to make your life all about?  There are what I call professional survivors who take what they had and make it their whole life going forward  – give speeches, start charities, run races, wear hats and ribbons and support each other and then there is the other extreme, like my Grandmother, who on the last day of her treatment said it’s over now and I don’t want to talk about it. I am kind of in the middle – probably a little toward professional since I have had a bit of press surrounding the blog you are reading now. Still that doesn’t mean that I want defined as the “one who had cancer.” Shoot, I wrote a play based on the porn film, Debbie Does Dallas, that toured the world…isn’t that much more fun to discuss.

I actually never even felt sick (except for the rash) so I never saw myself as a victim or someone to be thought about in anyway special.. only others did and do…

Michael J. Fox is starring in a  new sitcom and he was interviewed for the Guardian.  One thing he said struck me: ‘Nobody pities me and that’s great. I couldn’t stand it.’  And that brings me back to the “look.”  It says, “you had cancer and I feel sorry for you.”  Shit happens to people and most people just get on with it.  I was at a dinner party and out of five girls: one’s mother died, one’s husband is gravely ill, one had problems conceiving, and a dear friend of mine is having a liver transplant as I am writing this.  For some reason cancer gets the look.

So for all of you out there who have a friend going through anything, I read this great article in Allure Magazine, June 2013 – How to Help a Sick Friend by Letty Cottin Pogrebin.  She has some great advice.

Stop by:  She says you should come for a visit. I agree but only if the person really wants you.  Don’t come by unexpectedly…dropping in is not so good if you haven’t drawn on your eyebrows and you look and feel kind of scary.

Listen carefully: Some people don’t want to hear everything so make sure you if you come round that you want to hear all the nitty gritty.

Know what NOT to say: This is the most important part!  People had such a hard time knowing what to say and do and Letty Pogrebin has got it so right here.  The last thing you want to be asked is “How are you?”  It should be obvious how you are. The last thing you want to talk about is how you are.  You want to talk about the George Clooney movie, etc.  You also don’t want talk about how you look – you know how you look (No eyebrows and all that).  The worst was being told that there was a reason I got Lymphoma and to discover what that was and fix it.  Make sure your belief system is the same as your friend or that friendship is not going to last through this.

Tune In: what I said above – stop reminding me that I was sick!

Make Yourself Useful: Do stuff to help your friend.

THE GOODS: Check out her book if you want to know more: How to be a Friend to a Friend Who’s Sick

That’s my rant for this post.  Next time – we just have to talk about HAIR!

If you have a chance, check out the Irish Daily Mail!

(All photos by Rankin, except the one with Rankin in it!)

I was a Beatles fan when I was young. this was neither the cool nor the popular thing to be.  It was the late 70s – Paul McCartney was in his mullet wearing, pot smoking, Wings phase; George Harrison was singing about Hindu gods; Ringo and John were nowhere to be found.  Our parents were the fifties generation so unless they were really hip, there was nary a Beatles album to be played on the Hi Fi.  I really can’t remember where I heard about the Fab Four…but the moment I did I was mesmerized by the shaggy haircuts, matching suits, cheeky smiles, oh, and the music too. (It’s no wonder I ended up an adopted Brit.)

I knew everything about them – used to even, very geek-ily, call myself a Beatloloigst..John was my favorite with his sarcastic wit and  hard-edged sense of humor …so it is amazing that, after living here for nearly 10 years, I have never been to Liverpool.  Finally, on the night of May 17, I found myself at the Walker Art Gallery as part of an exhibit in the city centre overlooking the Mersey: Alive: In the Face of Death.

A week and a half before checking out the Cavern Club, through a set of very random and roundabout circumstances, I was literally covered in purple paint posing for one of the most famous photographers in the world, Rankin.  He was participating in the Liverpool Photography Festival…http://www.huffingtonpost.co.uk/kate-lawson/alive-in-the-face-of-death_b_3305414.html and had asked me to pose for him as one of the survivors.

I have to admit I was scared being part of this – yes, he was photographing survivors and I had survived something that potentially could have killed me last year but does that make me a survivor? I constantly live in fear that it is not really gone – ok, that’s a bit dramatic, but I don’t think I will ever be the same as before.  Every doctor’s appointment now is wrought with anxiety, but I know that everyone has to deal with something and no one lives without stress in some way.  Not that the knowledge that others have pain makes me happy but sometimes it helps to know that I am not the only one struggling with life or death matters.

Then I told myself that there was no way I couldn’t do it as there are only so many opportunities in life to be photographed by a world-class photographer and I would be so upset not to have done it…so there I was looking like an alien bathed in purple… (He had taken glam shots of me before the dousing – even said I looked like Charlize Theron and praised my smizing – how much do we love him!)

So back to the night of May 17…there were loads of participants attending the opening night exhibition and every one of them had a story.  Most were surrounded by loved ones taking a picture of their picture.  Rankin held court and was sweetly chatting up everyone, even inviting us all to dinner!

One of the ladies in the exhibit who is dying of breast cancer regaled me with stories about how the Pharma companies have found a cure for cancer but are hiding it from the public because they make more money with sick people than healthy people.  It scared the s**t out of me and I had to run away from her.  Hopefully that is not the truth.

Another gentleman, John Ellison, started Climbers Against Cancer, raising fund for cancer research all over the world by selling T-Shirts.  He was amazingly positive even though he had to give up climbing – his passion, living up to his motto of: “You can’t do anything about the length of your life, but you can do something about its width and depth.”

Someone asked me today, if now, a year after chemo, I have a new take on life and I really didn’t know what to say.  Yes, of course, it’s amazing to be home in London and there are tons of things I want to do but hey, I am the same person who procrastinates, wants to find a new job, tries to find more time to write, complains and can be super lazy…but I am wearing my Louboutins a lot more and I guess that was my goal a year ago!

Reunions report: So many of you asked about my 25th, so I thought I would fill you in.  It was amazing but I have to admit that almost no recognized me with short hair – even a really good friend, who I hadn’t seen in a while.  She blamed the heat and P-Rade – and given that it was 90 out and I adore her and she hadn’t seen me in 5 years and my photos on Facebook are all with long hair, I will forgive her.  Only one girl went on and on about why I would cut my gorgeous hair…I had to pull out the “I had cancer” card! Funnily enough, I did have more hair that most of the male members of my class.

Most of my classmates totally ignored filling in the yearbook portion – so I don’t know why I stressed!

Here is the look I was sporting: had spent the whole day before in nice shoes and then my feet exploded and I had to wear flip-flops – so no photos with Louboutins.

I thought my days of Chemo in Louboutins were over but something struck me today and I know this was the only place to rant about it.  Unfortunately, it isn’t the new collection of adorable summer CL’s…

My 25th reunion from college is coming up in six weeks.  Princeton Reunions are indescribable and the 25th is the top of the top as far as reunions go.  Jon Bon Jovi played last year…if that gives you an indication of the scale.  A Reunion Book is published and I am finding it super stressful to fill in the questionnaire.

The first thing they are asking for is my “title”: is it dorky to put Miss at the age of 46 and Ms. is just saying the same thing.  Unfortunately, there is not enough room for Countess like at www.okadirect.com.  It always makes me smile when I receive an email from them addressed to Countess Schwartz…

Next is info on my Spouse/Partner/Children – well, I have no children and I have never been married.  Yes, I have the most delicious boyfriend ever but does the Cypriot really want to be in the Princeton Reunions yearbook?  Another page empty.

Isn’t this reunion supposed to be fun?

Now they want a picture of me…do they mean a picture of what I looked like before I lost all my hair from chemo or one with the bushy mess that sits on my head now?  Of course, I am so lucky to be alive to have hair on my head but looking in the mirror is still a challenge as I try to adapt to my 1970’s science teacher look.  “Why did you cut your beautiful hair?” – is coming I know it.  What am I supposed to say?  I always find this a hard question to answer.  Maybe because I don’t feel that I truly look like myself yet.  I certainly don’t want to be a downer so I am practicing saying “Yes, I did”…and leaving it at that.

Next page is the what’s been happening in my life since 1988 page.  “Please fill us in!  Try to limit yourself to 500 words, so that we have room for everyone when we print the yearbook.  You are not being graded, so relax and enjoy!” 500 words for 25 years…yeez, enjoy?!  I have written way more than that here and it’s only been a year.  Do I start off with..Well, it was one year ago today that I had my first AVBD infusion (May 24)…

What I really want to write is “shouldn’t we be looking forward, not back?”  Does what we do in the past define us for the next 25 years?  I am constantly growing and changing and finding out that I can do more and more things if I try – way more now than 25 years ago.  No, I don’t think that’s what their looking for.

So the next page is a killer: “Gone, but not forgotten…Please take a moment to share your tributes, remembrances and stories of our departed classmates.”  Fourteen names on a list – many of them took their own lives and many struggled with cancer.  I could have been on that list.  Again what do you say in a Reunions books?  Some polite chitchat when you really want to say that it fucking sucks that these people died?

So I am a wuss.  I answered everything the way I should…I sent them the photo above. I refrained from making any comments about my deceased classmates – I actually didn’t know any of them very well and I sent them a quirky little blurb about my claim to fame, Debbie Does Dallas. (if you don’t know what I am talking about: http://theater.nytimes.com/mem/theater/treview.html?res=980CEED7153FF933A05753C1A9649C8B63&_r=0)

What the last year has taught me is that what I went through really trumps everything.  How can I see past last year to what went before. It all seems so unimportant.  Now, I truly wake up everyday thinking – what can I achieve today that I wasn’t able to do yesterday?   My blog, bestbitsworldwide.com, is re-launching next week, my birthday follows close behind, planning trips to Greece, Cyprus and Burma – looking at today is so much better than looking back…so let’s celebrate that at Reunions!

I don’t know why I am finding this last posting so hard to write.  It should be easy.  I’m done treatment. The End.

The whole Proton experience came and went without chemo or Louboutins, so I feel kind of like a fraud writing about it.  Everyday I got up super early, threw on black leggings and white sneakers and went to my session.  I did walk back from treatment to my parent’s apartment (almost two miles)…still that was no excuse for ugly footware.  Mr. Louboutin designs sneakers –of which, sadly, I have none.  It would have been radiationinnewbalance.com.

New Year’s is usually thought of as a time to start anew (thus, the NEW in New Year’s) with projects and plans and resolutions.  I just want to go back to April 2012 – home from holiday, kissed by the southwest sun of Arizona and the Grand Canyon, ready to go back to work.  A time when I was clueless about what was to come.

I return to London this next week to begin the process of “getting back to normal.  This involves trying to convince myself that I look like a middle-aged Jean Seberg and the weight I gained will slough off.    After four weeks, radiation has only left me with a slight sore throat and some “sun” burned skin around my chest.  “All this will be healed soon,” promise my doctors.

Did wearing Louboutins  make me feel and look glamorous?  Yes, it did.  Am I still filled with fear even now that I am going home?  Yes and I am certain I will always feel that way

Still there is one thing I can guarantee – no more dust covered Louboutins waiting for an invitation to be worn.

THE BEST OF THE GOODS:

There are some people and things that deserve special recognition:

1. THE SLS SUPPORT TEAM
I could not have gone through this and come out the other side without all of you…the parents, boyfriend, friends, those who read and commented on this blog

2. THE SLS MEDICAL TEAM
Everyone at HUP (Hospital of U of Penn), especially the chemo nurses, proton 4 ladies, and the doctors who are trying to cure me and their teams.

3. STEVE JOBS & THE SKYPE TEAM, ETC
Without Facetime, Skype and every other software and/or device that let me keep one foot in the UK – allowing me to speak to my friends and watch Strictly Come Dancing at the same time!

4. YOUR PRAYERS HOPES & WELL-WISHING
These I pass along to the people I met at the Proton Center…who are still going through treatment.

For those of you who do not know me personally and have questions about how I am and what I am doing – you can always check out Best Bits Worldwide (bestbitsworldwide@gmail.com)!

Thank you everyone!

I’m sorry.

The Louboutins have been discharged from the hospital and going out on the town!

Chemo done and boarded a plane back home for a quick jaunt to London to kiss my beau and then onto Paris for work. Sitting on the plane, I realized I had to apologize for being so self-centered for so long.

I mean it.

It’s all been about me and my shoes for more than six months and now it’s getting a bit boring. Enough already about the nausea and mouth sores and constipation – no one really wants to hear about that.  It’s disgusting and boring.

In Paris, something small, but oh so telling, happened and I knew it was time to get out of my head.  A friend and work colleague complimented me on my new haircut.  I laughed off his comment in an awkward insecure way, “this thing on the top of my head…it’s a wig, duh.”  He recoiled in horror and embarrassment and mumbled that he had no idea as he backed away.

Instead of just thanking him, I had to bring even more attention to myself by making him feel uncomfortable. I didn’t do it on purpose.  It’s instinctual now.  This person you see in front of you…it isn’t me but someone else who has cancer.  It’s what I’ve been doing for months now.   Time to accept that it is me and I will be going home soon to reactions such as the one in Paris. Time to be grateful for what I have, not what I have lost. (I did apologize to him!)

Yesterday, the doctor told me that my scan was nearly perfect and I am technically in remission – thus cancer-free. I will still need seventeen rounds of radiation…starting December 18 everyday except weekends and Christmas Day. The last hurrah.  I am still scared to death but everyone has shit to deal with.  Mine doesn’t trump anyone else’s.

Check out Tig Notaro’s situation to really understand: http://www.thisamericanlife.org/radio-archives/episode/476/what-doesnt-kill-you?act=1

As I get closer to returning home for good, I have started to tell more people about what I have been going through for the last six months.  Really so that I won’t have to explain my hair situation.  Usually the conversation starts like this:

Me: Hi there…I have been away for six months because….blah blah blah..

Friend: Oh my god, I am so sorry I didn’t call you back two months ago!

or

Friend: You must have hated me when I complained about my cold, hip surgery, mother dying…whatever it is.

Let’s clear up something – it’s not a contest. As I said before, everyone has their own stuff to deal with.  Either you are going through a divorce, have a sick or dying parent or child, out of work…everyone is dealing with something. I got dealt the cancer card. So did loads of my friends…one had testicular, one breast, one thyroid. They are doing fine. And then there is one of my dear friends who died almost two years ago from non-Hodgkins Lymphoma.

We just can’t waste time feeling guilty that we are alive, less sick, loved less or more than another person. It doesn’t do us any good.  Guilt is what probably got me sick in the first place. I’m still doing it…look at the first words of my posting.

Better than that read this by Suleika Jaouad in her June 14th article for the New York Times: Life, Interrupted: Feeling Guilty About Cancer: http://well.blogs.nytimes.com/2012/06/14/life-interrupted-feeling-guilty-about-cancer/

“In the outpouring of love I’ve gotten since I began writing about my disease, guilt has never been too far away. Intermixed in the spectacular and candid messages of support, I’ve also received dozens of apologies from friends, classmates, and acquaintances who feel guilty for not being in touch or not realizing what I have been going through. Some people feel guilty just for being healthy when I am sick…I’ve learned that guilt is made less powerful when you confront it — writing about it, talking about it, bringing my fears and thoughts to the fore, out into the open. For me, the cure for guilt, to the extent that there is one, has been sunlight.”

Take a deep breath, look outside or down at your Louboutins…

As it’s my last of 12 Chemo session, I brought out the big guns. I wore these to a gala evening this spring Mr. Louboutin attended and even he was surprised and pleased to see these. He said he no longer had a pair and was very envious!

Chemo #12

I always thought Commencement was a weird word to use for graduation.  It should be called Conclusion or Reality Time but this week I totally get it.  I had my last chemo session on Monday November 5.  The doctor assured me for the hundredth time that there was no way he could prescribe anymore.  This time was truly it.   One more week of suffering and then it was over…well, kind of.

I get my next PET/CT scan on November 27 and then the big meeting is November 29.  Will I or will I not have radiation?  That question can only be answered after the next scan.

We waited a good two hours to see the doctor this week.  So many people are so sick…the waiting room was packed.  He told us that he has no appointments free for new patients until the New Year and a few patients had even come in from New York over the weekend to be treated because they could not get to their own hospitals because of Sandy.  How lucky have I been?!

As fate would have it, the same nurse I had for my first chemo session in May was to help me for the last one.   My veins worked for me this last time and all went without drama.

Now I don’t know if this is true for every hospital, but there is a bell here at the front nurses’ station.  When patients are finished all their chemotherapy, they are urged to ring the bell.  I am not sure about this tradition, being a bit superstitious.  I have to return in six weeks to have my next Rituxan so this is not the last time.  Battling two cancers, not one, I feel I will never be done.  Therefore, I have no right to ring that bell.  So I didn’t.

 The adorable nurses did make me accept a Certificate of Achievement…which I did, gracefully.

So now I am done for the moment – at least with chemo.

Have I commenced? Can I start to be Susan again?  As much as I love the fact that chemo is working to make me cancer-free, I hate what it has done to my body. Looking in the mirror happens less and less.  When I do catch a glimpse,  I see reflected back, not the Susan who started this journey, but someone I don’t know, is completely unrecognizable.

Now that the worst it over…will the Susan I recognize come back?  I don’t know….we’ll see.

The Louboutins have been my lifeline. I look down at my feet and are reminded of my world before this started…but with a difference.  Now, everyday is a Louboutin day…no more special occasions only, no more dust collecting in closets…but I am getting ahead of myself.  November 29 is on the horizon and, as I was told before, radiation has its own set of side effects.  We’ll see what happens.

THE GOODS

These ladies are the ones who are really courageous and who astound me with their courage and determination.

1. SULEIKA JAOUAD:  LIFE INTERRUPTED
Ms. Jaouad is not only a Princetonian (Go Tigers!) but a brilliant writer.  She is going through treatment herself and has been chronicling her life on the pages of the New York Times.  Please check out her blog.

2. CAROLINE ROBERTS: THIS IS ME
Ms. Roberts went through a harrowing experience and is now getting her life back.  She wrote a beautiful and helpful article in Tatler about finding yourself again after chemo in the October Issue.

3. ROBIN ROBERTS: ABC NEWS
Everyone in the USA knows Ms. Roberts from morning television.  She not only battled breast cancer five years ago but now has to deal with myelodysplastic syndrome – a blood disease.  She embodies grace and calm even during these tough times.  She is a true inspiration.  Her words, “focus on the fight not the fright” are in my head constantly.

CHEMO #11

A hurricane has come and gone, Halloween horrors long past, the fear of the unknown squashed as you have been doing the same thing since June.  You think you’ve seen it all, until chaos ensues and you are left gasping for air…ok, a bit dramatic but y’all know me already.

After ten chemo sessions, one would think there would be no more surprises…one would think…

It started normally enough.  The same old routine you are bored with.  Come in a half hour early…bloods drawn and then chin poke.  (They are still poking my chin and giving me $20 even though there is no more lump there – thanks to the Rituxan.)  Not such a long wait for Dr. Schuster this time and promising no more chemo session after #12.  Got a room with a window as requested and one of the great nurses I had before to do my IV…what could go wrong.

My lovely, dear, fabulous vein that has been working for me so well felt good to go. The IV went in and then, surprise, no blood return which meant it might be as dead as the other vein on my other arm.  Out came that IV and another healthy vein had to be found.  Mission accomplished…a little further down that same arm.  Blood flow good and all was well.  Opened my computer, turned on the latest downloaded episode of my new guilty pleasure Once Upon A Time and let the EMEND enter my system.

All of a sudden, the nurse rushed in and blurted out that they had to remove that IV asap.  There was a chance that since she punctured a vein higher up on my arm that the chemo would leak out – this is not a good thing.  It can severely damage your skin and cells…nice.

Out came that IV.  Now the other arm was checked.  You know the veins that pop out on the top of your hand…well she went for one of those.  The last time they had used a superficial vein like that it burned the whole time.  Still, there was nothing I could do but watch and wait.  Waiting in limbo as I was, it was kinda hard to concentrate on Charming and Snow.

A friendly face came to visit – one of the other nurses popped in to say hello!  She asked how many sessions I had left and all that.  When told of the impending radiation, she sighed a heavy sigh and said, “Oh boy, that brings its own set of issues…you thought chemo was bad, well radiation is a doozy…I hope I’m not the first person to tell you that!”

Like I need to know that now? Sitting here with the third IV of the day in my poor hand?  I retorted very snottily, “Well, my grandmother went through it at 84 and she was fine, so I am sure I will be!”  She kinda of snorted back with a ”I hope so” and left me to await the burn.

Then another nurse came into check on me.  She admired my Ralf (my precious wig, for those of you just joining us). I told her that my hair was starting to grow back – which it is! – and she replied, “Don’t get used to it, that’ll fall out.”

Are these caregivers?  Or their Halloween equivalents?  Now, don’t get me wrong.  I adore the Penn nurses  – they are incredible women, practitioners, and nurturers.  I could not have gotten through this without their weekly and biweekly support and treatment BUT it seemed like everything I heard that day was negative and the opposite of helpful.

Thank goodness and most importantly, the chemo did not bother me as much as I feared it was going to.  Got home a bloody mess, though.

Handling the week after chemo can be almost stressful as the chemo itself.  I thought again I had it down pat:  Monday: treatment; Tuesday: feel fine; Wednesday: nausea sets in; Thursday: tired, nauseated, constipated; Friday: all of the above; Saturday: start to feel normal; Sunday: a little better until I feel like myself.

This week I got the brilliant idea of trying to get the handle on one part of it in a new way.   Thursday night, I would take Ducalox.  All would be sorted and it would be clean sailing for the rest of the week.

THIS WAS NOT A GOOD IDEA.

I took it before bed and was awakened by the worst stomach cramps I have ever had in my life.  I was in pain and also vomiting the entire night.  I actually woke my Dad up at 5am to see if I had appendicitis – remember I am a drama queen.   Now I can’t blame the whole thing on the laxative since I must have had a slight tummy bug as well but why did I mess up the regimen by adding in another element.  Next week I am sticking to my own advice of Konsyl and prunes.

These past two weeks have quite literally made me – for the first time – understand what “practicing” yoga meant.  I have been sort doing yoga on and off for at least ten years. I know they call it yoga practice but it never really registered until this week.

A work drama occurred and immediately I went into panic mode, making myself sick with worry.  I went over what I did and why I did it and why didn’t I do it another way and how could I be so stupid.  I do believe it is one of the reasons I am sick now.  My mother was with me and although there was the possibility that the work problem could affect her as well…she was calm as a cucumber, reading the newspaper as if nothing ever happened.  She kept trying to reassure me that I had to let it go, but I just couldn’t.  She then really almost shouted at me that, the only thing she really, truly was concerned about was my health.   She was calm because she knew there were more important things going on right now.

It was then that I knew why people PRACTICE yoga…to use it when it is most needed.  That may be super obvious to everyone but it has taken me ten years to discover it for myself.  Oh yeah, that stuff I have been doing for ten years – that’s what it’s for…I took a deep breath…and slowly thought of my Mindful Meditation tapes and started a full body scan.  I was on an airplane when this all went down so doing downward facing dog was not an option.  It was a start, a Band-Aid taped over something that really needs to be addressed, or I will make myself sick again.

Still working on how to fix the problem permanently.  Step one: wear your Louboutins, Step two: working on that one still.

THE GOODS

 1. PRAYERS & THOUGHTS
My heart goes out to all of you affected by Hurricane Sandy – be well and hopefully your electricity is back on soon.

 2. YOGA & MINDFUL MEDITATION
I know I said it before – it’s good for you – just do it!

3. $$$$$
I counted up how much I have saved by NOT getting my hair colored, cut, waxed plus not going to the gym, Pilates, etc.  A brilliant holiday is in the works, when treatment is done.

4. A NEW CALENDAR
Time to buy a new datebook, diary, whatever you call it.  I love the ones made by this company: bookbindersdesign.com

5. NOT ENOUGH CHEMOINLOUBOUTINS.COM
Some are asking me to write more…but since i write in more or less real time, I have to wait until something happens to me.  Check out my twitter page: https://twitter.com/ChemoinLou or @ChemoInLou for things as they happen!