Chemo in 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!