Chemo in Louboutins

My boyfriend is visiting from London and now everything is on hold  – even shoe wearing and writing!  Will start again when he leaves.

Thanks for your patience!

Suz

The first time these were ever worn! They are truly gorgeous. Bought in Paris during the sale – they are truly works of art!

CHEMO SESSION #3

Well, well, well…this session could not have been any more different than the last.

After the fun of last time, I was a mess before it even started.  Not only was I sure that it would be as terrible as before, but, this time the appointment was in the afternoon.  I would have to deal with the 7pm quitting time again.

Let me explain – a 3 o’clock appointment does not mean you are seen at 3 o’clock.  First you need to get bloods drawn to check counts, then you wait.  Then you wait some more and then you get shifted to the doctor’s office.  Then you wait again.  Now let me explain one thing: my doctor is a dream boat.  If you had to have any doctor for anything then you want him.  He is reassuring, positive, encouraging, brilliant, on the cutting edge of everything, absolutely divine and spends tons of time with you.  No matter how long you need – he gives you the time.  This is amazing when you want it BUT a nightmare when you are trying to get in and out of chemo before the nurses go home.  You know he is with another patient giving them the time they need, but you kinda want him to HURRY UP.  I was making myself crazy and sick with anxiety.  I could hear Fern (see OM!) telling me to relax and breathe!

He finally came in to see me at 4:30.  I shouted a few things at him: about drinking aloe vera (was not sure), taking acidophilusorally (no), if more of my hair would fall out (couldn’t answer but said that sometimes it starts to grow back before chemo is done – weird but exciting) and asked about yeast infections (yes – women get them loads during chemo.) My blood count has dipped slightly but was normal.  Skin slowly getting better. . I rushed him to answer but it was still after 5pm when we finished.  Two hour warning.

This time, I knew to ask for a room with a window and I got it, even though I felt like a princess asking.  Who cares?

No Reiki volunteers to calm me this time, stressed and a mess was I.  Then Katie, the nurse, walked in.  She was instantly calming.  She put in the IV no problem without any pain and then the drugs followed, pain free, as well.  The dastardly D of my cocktail was made better because Katie took the time to put two heating pads on the IV and my upper arm.  She told me to ask for new ones when they got cool and to make sure I got them every time.  She brought me water and graham crackers without asking.  The whole thing was done in record time with FABULOUS Louboutins on.  Left way before 7pm and was on my way home with the summer sun high in the sky.

THE GOODS

A few things made this session bearable and they are completely do-able.

1. PLAY PRINCESS
It’s ok to be demanding sometimes.  If you feel better with a window, then ask for a window.  If a nurse gave you a heating pad the last time, it’s ok to ask for one again.  Also, if you bond with a certain nurse, ask for her.  This is a sucky time in your life, if a few things make it better then ask.

2. TIMING IS EVERYTHING
Decide your own fate by booking chemo appointments when they are good for you. If you know your doctor likes to chat and the nurses leave at 7, then book an early appointment.  There is already too much stress involved to begin with, don’t add more on like I did.

3. BREATHE
Everything you learned from Mindful Meditation and Yoga, use it!!!  There is a reason we study these things!

NEXT POST: INTIMACY & FRIENDSHIP – it might even rival 50 Shades of you know what!

Everyday Louboutins…

It had to come up sooner or later, reminding me of this Seinfeld bit:

How true…except when going through chemo.  Each hair you see on your pillow you want to keep and not let it go. I can’t speak for those going through any other chemo cocktail but mine, but it has been a lot more difficult than I imagined.  I know the voices in my head are right:  “it will grow back even thicker, curlier and more beautiful,” “It’s only hair,” “It’s the inside that counts.”   Well, when it’s falling out of your head, you don’t hear encouraging thoughts – only four letter words spew from your mouth.

Normally, people about to start chemo, who know for sure that they will lose their hair, prepare themselves.  Some shave their heads, some cut it, most pick out and order wigs.  Since I am going through AVD (no B, thank goodness), there is a slight chance that all my hair won’t fall out.  How do you prepare for that?

My doctor said maybe it would be a good idea to cut it short so it didn’t clog up the drain.  So, of course, I did the opposite.  I thought, screw it, I want to look like me as long as possible.  Who cares about drains?  The third week (after the second treatment) the hair started to go…I couldn’t help but notice that the back of my shirts, pillowcases, sweaters were covered with hair. Washing my hair was even more fun.  It was all matted from falling out the night before and impossible to comb without pulling.  It felt like half the hair on my head was at the bottom of the shower.

It was time to get some professional help.  My Mom’s stylist, Mel, at her neighborhood Hair Cuttery, came to the rescue.  I explained the situation and she took control.  She washed it with the special shampoo I had brought and then carefully combed the rat’s nest that my hair had become.  Much more left my skull but some of it was still hanging on for dear life.  Once combed out, off went three inches to add a bit of bounce. Mel had saved the day.

A chemotherapy session later (#3 – the next posting) and more fell to the floor.  It was at that point that I was super depressed and decided it was time to take control.  Did some research and called around.  Found two wigs specialists – one local to me here in Philadelphia and one in New York.

Both had very different approaches.  The local one was sure I would lose my hair right away and told me it cut off and buy a wig as soon as possible.  I burst into tears.  I think he was a bit upset by my open display of emotion and offered me some additional options.  Since I wasn’t ready to commit to getting a full wig, he produced a Halo Bob and a blue cap. It makes you look like you have loads of hair…but don’t remove the cap or you see the truth!

The next day we went into New York to see the most famous wig man in the USA.  He worked his magic for Vidal Sassoon and has been there for the ladies who need him ever since.  He was a doll.  Born in Sicily, he used his Italian charm to make me feel totally at ease.  He had absolutely no attitude.  He examined the few locks I had left and said it could go either way, I might lose it or not.  He made it clear that he had a few wigs around that could be used at a moment’s notice and not to worry.  The most distressing thing for me would be when I lose it from my hairline in front.  Then it would be time.  Even then, maybe I would just need to get a small fall and not an entire wig.  He was there for me whenever I needed him and he could do anything.

He also explained the complexity of wig making and answered all of our questions.  He also would teach me how to take care of it myself so I wouldn’t have to worry about coming to see him every month.  We left it that I would call him when I needed to. We shook on that!

As of now, it’s still hanging on but at least I am secure knowing that I have a few options.  I am just hoping it stays on until my boyfriend comes to visit me on Friday.  If not, I know the shoes will be enough!

THE GOODS:

1. SHAMPOO & CONDITIONER
I loved Philip Kingsley (philipkingsley.com) shampoo & conditioner in p.c. (pre-chemo) life.  They are one of the only brands to have a No Scent No Colour line. The shampoo and conditioner have no sulfites, no parebens and are colour free.  The conditioner is super conditioning which is great if you are trying to comb out matted chemo hair.

2. MEL at HAIR CUTTERY (or someone like her)
Mel wields her scissors in a tiny local branch of the Hair Cuttery.  Find a local place and let them do the dirty work.  Take them aside and explain the situation and I am sure they will help.

3. RAFFAELE MOLLICA: raffaelemollica.com
Yes, he is the famous wig guru.  They may be expensive but are light as a feather.  They are world travelers: ladies from all over come to him for all their postiches.  He’s a total sweetheart.

4. WIGS BUYING –
I don’t know much about wigs but since I tried on a few, I know that you need to make sure it’s comfy as you will be wearing it a lot.  Otherwise,you will be stuck with a very expensive dust collector.  It’s OK to go to a few wig people without committing. Don’t let anyone bully you into buying one brand or type.  Ask questions and try it on because it’s about how it feels on your head.  If you don’t want to ask someone you know for help finding a wig stockist, call the nicest salon in town and find out if they know someone.  I called Frederic Fekkei Salon in New York City for a reference and they called me back in a day and recommended Raffaele Mollica.

I had NEVER worn these before and they were bought in 1995!

CHEMO SESSION #2

OK, I confess.  I put off writing this post because I was scared, selfish and just a plain mess. My second chemo session was ages ago, but I just didn’t have the heart or energy to relive it.  I was deluded into thinking that this time it would be easier than the first session.  I mean, how much rougher could it be than the first time?

I guess, going into it, I was already in a state.  If you zoom into the photo above, you can see the flagellate flagellating on my uncovered arms and legs.  It was itchy and I was miserable.

My second chemo session was in the morning.  I had planned this way so no one would be pushing us out the door at 7pm.  Had my bloods drawn, my chin prodded for another $20 and then waited for the doctor.

No more Bleomycin or Benedryl. At least, it was the one drug you can cut out of the cocktail without adverse effects.  The doc informed me that my white blood cell count may go down so I needed a blood test the next week.  If it did go down, I would have to take Neupagin which promotes the growth of white blood cells.  I would also need to take Perocet with it because it hurt the bones.  I so didn’t want to go down that path. Let’s hope my cells were working for me.

When the chemo room was ready, I was led to a windowless, dark cell.  Not wanting to be a princess, I sat down without asking for room with a view.  I could deal, right?

A different nurse came into the room and started the whole rigmarole.  She prodded my arm for a vein and decided to use the same one as last time. Before she began administering the meds, it just didn’t feel right.  The IV felt too close to my skin and it hurt.  She said they couldn’t take it out and another more senior nurse came in and said it was fine.  As she started with the adriamycin, the medicine burned like hell going in.  You are NOT supposed to feel adriamycin or vinblastine going in – only dacarbazine.  They couldn’t stop and so they carried on.  Needless to say, I was a totally distraught, upset and in pain.

While in this state, a group of ladies knocked on my door and asked if they could have a minute.  Carrying blankets and smiling ear to ear, I knew they were probably here to say something reassuring.  The nurse asked nicely if they wouldn’t mind coming back a bit later.  When they did, I was still a mess and asked my Mother to deal with them.  She told them that I was new to all this and was not ready to see anyone (Yeah Mom!).  They were survivors and only wanted to give me hope and support.  Mom told them to give her the hope and she would pass it along. They left, saying they would be back in a couple of weeks.

Why didn’t I want to see them?  Or at least have the decency to hear what they had to say? I know I was upset but usually I am not rude.  Was it that I didn’t want to be thought of as a survivor?  Of course, I want to survive but I never wanted it to be “sick” in the first place.  I didn’t feel sick so how could I be sick.  As the chemo drugs were coursing through my veins, I still don’t want to admit it.  I have cancer and there is nothing I can do about it.  I have been brooding over this for two weeks now and I want to apologize to them.  I want to scream out loud: I want to be a survivor – come back and say hello!

As the dacarbazine started and I was in a right state, someone knocked on the door.  A Reiki volunteer turned up and wished to know if I wanted a session.  I nodded and she came in, turned off the lights and started doing her business. Finally, with the lights out and her hands on me, I calmed down and everything got better.

It’s funny that everyone who send me wishes has called me brave. In every email, it’s…”oh, you are so brave”…”I admire your courage”…brave this brave that.   Why…because I put on nice shoes and I am writing a blog?  I assure you I am no braver than anyone else.  It’s a front to fool myself into believing that it really isn’t happening to me.  I have to accept it and move on.

THE GOODS

It is so important to keep busy so you can get out of your own head.  My work is slow at the moment because I can’t travel.  All my summer work projects have been put on hold until I get back to London.  This is dangerous as I have too much time on my hands and am only thinking about myself.  Here are a few suggestions to start me thinking about something and someone else.

1. GOALS
A friend gave me some great advise: set some goals for this time. He had been laid up with back surgery and read all of Proust – “Now, when people mention the Duchesse de Guermantes or Madame Verdurin or the Baron Charlus, I know whom they’re talking about and it makes me feel immensely superior.”  I love this and it made me laugh!  I never though about reading Proust but now I am almost finished 75 pages. Only 3425 left.  A friend also suggested reading War and Peace, which is on my list too. One thing I have wanted to read was Robert Fagles translation of Homer’s Iliad.  I even have tapes of Sir Derek Jacobi reciting it.  So with three projects laid out for me: Proust, Tolstoy and Homer – I am set.  (In between, I might sneak in 50 Shades of Grey for some literary relief, nothing dirty!)

2. TAKE A CHANCE
Try something you have never done before!  A friend of mine sent me watercolors, paper and a brush.  I never paint.  She said it is really relaxing and to give it a try.  Why not? There is no one watching.

3. PICK UP SOMETHING YOU MEANT TO DO A LONG TIME AGO AND FINISH IT
I used to do so much needlepoint.  Every time I went on a train or airplane or sat and watched TV, I would work on a pillow.  Life gets in the way and attention is diverted.  I have glorious pillows waiting to be made – it’s time to start again.

4.  THINK OF SOMEONE ELSE
Like those ladies who came to visit me, think of doing something else for someone else. Help those being affected by the terrible fire fighters: redcross.org or those suffering the African famines:  oxfam.org.  Give locally or globally.

5. DO SOMETHING EXTRA
If you don’t feel like tackling the greats of literature, making pillows or have no funds to donate right now, pick something positive to do so that after all this is done, you can say, “Well chemo was a bitch but I…”