Chemo in Louboutins

If you could do yoga in Louboutins, I would!

Coming back to Philadelphia,  I knew there were a few things, other than glam shoes,  I wanted to bring home from my London life.  Yoga was one of them. I had a long relationship with yoga throughout the years.  When I lived in New York, many moons ago, I started doing yoga every Sunday morning at my local gym.  When I wanted to go deeper into the practice, I found a very special place that was Jivamukti Yoga.  They had a very popular downtown center and a tiny uptown space on 66th and Lex.  Downtown was a hive of activity, while uptown was a tiny haven for quiet and peace.

When I moved to London, it was really hard to find a place that compared. I stopped practicing until, miracle of miracles, Jiva opened a wonderful space in London (jivamuktiyogalondon.co.uk).  Manizeh Rimer, Durga Devi, Cat Alip-Douglas, Emma Henry made it a home away from home and I was there constantly.  I will never forgot their kindness and generosity when I was diagnosed with NHL.  I was between the diagnosis and treatment stage, or, what I call,  the “what the hell are we supposed to do with her” stage.  Before I knew it was “watch and wait,” I wanted to make sure I was as fit as I could be before any treatment.  The Jiva ladies donated their time to work with me one-on-one for three months.  It made all the difference spiritually and physically.

In recent years, I had stopped doing yoga so much as my back was bothering me and had switched to Pilates (tenpilates.com).  As much as love Ten Pilates, it never filled the spiritual void that yoga left.

Going into this adventure, I knew it was time to bring back the yoga, start meditating and doing anything else that might help the soul get calm as much as the body was getting battered.  Jivamukti is given in Philadelphia but when Julie, the nurse, said to take it easy, I got scared of going gangbusters.  There went my hope of not only coming out of this summer cancer-free but also with great biceps.  One thing at a time.

The sister of one of my best friends specializes in Yoga for Cancer Patients in Minneapolis (Lura Shopteau, lurashopteau@gmail.com).  She recommended someone at University of Pennsylvania Hospital, where I was having my treatment, Fern Nibauer-Cohen (Fern.Nibauer-Cohen@uphs.upenn.edu).  I explained my situation to her and she immediately went into action. She explained everything that the UPenn Integrative Medicine program had to offer. We met and talked through all my options. I WAS SO LUCKY!  Fern is a dynamo of enthusiasm and kindness and warmth.  She was ready and raring to go, having set up a yoga studio in one of the rooms in the hospital.  We have met twice and our sessions are just as important to me as the chemo.

She also put me in touch with the Mindful Meditation unit, an Acupuncturist for my allergic reaction, and the Reiki people.   I didn’t even know what Reiki was, but she said DON’T MISS IT!

Most importantly she complimented me on my shoes  – this relationship will definitely last a long time!

THE GOODS:

These types of complementary medicine – as long as my oncologist approves – are equal in importance as my other treatments.    Most hospitals in major cities now have Integrative or Wellness centers.  Don’t be afraid to ask.  There are also places like The Haven in London which provide services free to those suffering from cancer.  Do your research.  It can really help you!

1. YOGA
It matters not if you can’t touch your toes or wrap your legs around your head, yoga is for everyone.  Both the spiritual benefits as well as the physical cannot be emphasized enough.  Nowadays, there are centers everywhere.  All you need is google to find them.  If you are going through chemo, make sure you take care of yourself and tell the instructor beforehand.

2. MINDFUL MEDITATION
Sick or not, if you haven’t read Full Catastrophe Living by Jon Rabat-Zinn, then rush out and get it now.  It is amazingly helpful, especially if you live a really stressful life.  I am too cynical to be a hippie, not into detoxing and have never done a juice fast, but this really works to calm your mind and keep you in the present.  Even if you meditate five minutes a day, it is beneficial!

3. REIKI
Had no idea what this was and now I cannot get enough.  At UPenn, during chemo, Reiki is offered by volunteers.  It is not to be missed.  Hands on calming therapy that eases your mind and body.  Divine

4. ASKING FOR HELP
All of these services are on offer at UPenn Hospital BUT if I had not asked, I probably would not have known.  It is really important to know what your hospital offers as it could be really helpful for you during this difficult time.

5. OTHER ALTERNATIVE STUFF
A lot of people have advised me to take supplements, fast before chemo, eliminate foods completely from my diet.  I so appreciate everyone’s input but what my doctor says, goes!  I wanted to continue my Craniosacral Therapy.  I had been a massage freak back in the old days, but people suffering from blood cancers can’t get massages.  Elizabeth Reumont, not only a brilliant yoga instructor and dear friend, but also the best therapist ever, worked wonders on my stiff achy suffering bod many times (restorativebodywork.co.uk or freeliz.com).  The doctor said wait until after chemo, so I shall.

Chemo is NOT easy…why not do something to help your mind and soul which in turn will help your body. Try one or all of the above!

It’s getting hotter here, which makes the itch even worse!

THAT DAMN NEW YORKER ARTICLE!

After reading the article, The Itch, in the NEW YORKER,  you just won’t be able to get it out of your head.  In fact, everyone I know who’s read it, cannot forget it.  To summarize, it’s a depressing report about a woman who can stop scratching, and I mean can’t stop, so much so that she scratches through to her brain. Who knew this was even possible?

Thanks to the Hodgkin’s (which I did not know I had – see ABOUT ME), I have been itchy for almost two years now with an eczema-like rash all over my body.  In that time, I have been inconsolable. I had seen two skin doctors as well as my GP.   No steroid cream, UV treatment, special diet, hypnosis, yoga, could stop the itch.  At night, I would wake up scratching, ripping my poor skin to shreds. I’ve had to wear cotton shirts everyday next to my skin.  It’s really exhausting.  No wonder I have not been in the mood to wear my Louboutins!

Well, I was told that as soon as the chemo kicked in, it would all be over.  The itch would subside and the healing could begin.  I couldn’t even imagine a world without itch…

SURPRISE!  The Sunday after my first session of chemo, I broke out with something that was way worse than what I had been suffering through before.  Big red blotches, long deep scratch-like gashes were all over my body – it looked like I had a fight with a rabid cat. AND IT WAS ITCHY!!! (It’s actually called Flagellate Erythema because it looks like you’ve been whipped with a cat-o-nine-tails.)

The question was how could I bare to live with it until the next time I saw the doctor – in two weeks?  They did say to call if something changed.  Did I want to complain and be the annoying patient?  No, I would man up and suffer through.

Wrong choice. It got so bad in the following days that people on the street were asking if I were OK.  Was it Poison Ivy?  My Mom and co-workers demanded that I ring the doctor straight away.  I was really lucky he could see me that afternoon.

Thank goodness, I did, as this was no eczema…it was an allergic reaction to Bleomycin, one of my chemo drugs. Only a small percentage of people taking this is affected and I was a lucky one.  The good news was this is the only chemo drug, of the four, that can be dropped from the regimen.

Although that was relatively good news, I was left with one ugly looking rash that can take weeks to months to disappear.  So I go out there, head held high ignoring the looks, bearing with the itch as it slowly subsides and hope all eyes go straight to the Louboutins!

THE GOODS

I hope no one has to suffer through this like I am, but if you do, below are my suggestions for easing the itch.

1. DIVERT YOUR ATTENTION: The itch was at its worst after 5pm.  As soon as the sun went down, my nails went into action.  Keep yourself busy!  Do anything you can to not laze around.  See a film, go to the theatre, drinks (non-alcoholic, of course), run…whatever it is, do it!

2. CREAMS & POTIONS: I bought everything for eczema-ridden skin: cream, ointment, oils, over-the-counter, under the counter, behind the counter, etc.  A few helped but mostly they didn’t work for me.  Of all the stuff I slathered on, the over the counter 1% Hydrocortisone creams are great in a pinch.  The prescription Triamcinolone acetonide helped but only because my doctor had added menthol to it.  Make sure you check with your doctor before you use any of these! 

3. THE SAVIORS!

a. FROZEN PEAS AND ICE CUBES:
The itch starts and before you know it, you have scratched your skin to buggery.  Well, if you can catch yourself, not easy, before it gets too bad, throw a bag of frozen peas or a paper-towel wrapped ice cube on the itch.  It stops almost immediately.

b. AESOP PETITGRAIN HYDRATING BODY GEL & 99% ALOE VERA GEL
Two gels have saved my life.  At first, I used Witch Hazel gel from Boots but that is so drying.  By an act of God, I was sent a random spam about a new product by Aesop called Petitgrain Hydrating Body Gel.  It mixes Aloe Vera with Witch Hazel and other stuff to cool and refresh the skin.  It smells good too!  Not cheap at £23, but for me, desperate after suffering for two years, I decided to try it. Thank goodness I did.   Unfortunately, as of now, it is only sold in the UK.  I ran out of it here but bought it from the Mount Street store in London (who generously threw in a few extra products for me to try) and had a friend who was coming to the USA bring it it to me – a rather complicated journey.  They might send it to the USA but I am sure it will cost you.  Keep checking the Aesop stores or retail outlets where you are to see when it is available.  I will do the same and tweet what I find out!

If you can’t get that or can’t afford it, find 99% Aloe Vera gel in a health food store.  The ones at CVS and Rite-Aid are more gel substance than Aloe Vera.  I think the Lily of the Desert Aloe Gelly is fantastic and only $5.

Throw whatever you buy in the fridge and the cold gel stops the itch and moisturizes at the same time.

Boys, you can stop reading here.

4. FEMININE STUFF
One of the itchiest places is in my private parts.  1% Hydrocortisone cream has been good but I do hate to use it a lot.  Going to the gynecologist next week to find out what is going on down there!  Will report back.

Topsy-turvy this week!

The Belmont has just finished and I know how that horse feels.  It’s like I’m at the gate running the most important steeplechase of my life.  I made it through the first hurdle and now the course is getting tougher.

Two obstacles knocked me off my Louboutins this weekend back to back. First – the nausea. Second – well, that can wait for the next posting.

Remember when I said listen to the nurses, I didn’t, and there I was in the shower, light-headed, about to fall to my knees, feeling like I was going to lose it.  Thank goodness someone was there to help me.  My Mom helped me out of the shower, I sat down – head in hands until it passed.  Then I actually took the medicine that the doctor gave me in case of nausea.  The nurse had said – at the first sign of nausea, take a pill.  My first two days were smooth sailing and I thought I was in for an easy ride.  No such luck.  Why was I so presumptuous – because I had a nice shoe collection?  So I swallowed the pill that the doc had warned me would make me even more constipated and I ate a piece of toast.  Five minutes later I was pretty good.

My doctor has also wanted me off of white refined sugar which he feels really feeds the cancer.  Now honestly that is like telling an alcoholic to go cold turkey.  I am a sugar fiend – in my tea morning and night, hard candy, lollipops, cookies – I eat it all – especially when I am here in Philadelphia.  My main adversary is ice cream – any Ben and Jerry’s to be exact and Capogiro’s (capogirogelato.com) Lime and Coriander sorbet. To torture me, Danny Meyer’s Shake Shack (philadelphia) just opened here – with their fabulous Shakes and Concretes. He was kidding, right?!

I knew in my heart that I would have to now be proactive to ensure that I had no other shower incidents.

Today, THE GOODS reflect some of what I found to be helpful for dealing with the difficulties of nausea, constipation and sugar-free living.  This being new to me – it all may change in the next weeks but, as of now, this is what I got. Funnily enough, I am actually finding that it’s easy to GAIN weight living sugar-free.

1. MORNING TOAST: Forcing down a piece of toast with butter or cream cheese with my tea (I am not a coffee drinker) the minute I wake up has helped me tons.  It settles my stomach almost immediately.  I can wait to eat a proper breakfast a bit later but this first toast has become my lifeline. After that, I tend to put something in my mouth about every two hours with bigger meals at breakfast, lunch and dinner.  Eating some sort of protein at least twice a day has helped with my energy levels and made me feel strong.  Ginger is supposed to be good for nausea but I haven’t tried it yet.

2. WATER: Think how hard your liver works on Sunday morning after a night of cocktails, beer and/or Thunderbird. Well, with all the crap coursing through your veins right now, it is imperative that you drink tons of water and, gasp, keep off of the alcohol.  No matter how much water you drink, drink more!

3. SNACKING: These have done me good in times of trouble: raisins, pretzels, Triscuits, especially the Parmesan Thin Crisps, Babybel’s.  Pretzels have been my go-to in times of need.  When my mouth started to hurt a bit, I got bald ones – Unique unsalted splits are my favorite: uniquesplits.com/pretzels-unsalt.asp.  I also always have a Cherry Pie Larabar in my handbag at all times: www.larabar.com.  These are all natural fruit bars…cherry is fabulous but they have loads of flavors from which to choose.

4. QUIRKY FOODS ISSUES: I have had to keep away from onions and spicy food because my mouth and throat get tingly.  Your mouth is going to do funny things so be aware.

5. THE DREADED CONSTIPATION – I know no one really wants to talk about this but it can get so bad with the chemo and the Zofran (for nausea) that you can end up in the hospital.  I was really afraid of this happening so I took too much fiber to start and got cramps.  One Colace a day plus, the miracle of all miracles, Konsyl (konsyl.com) – not just for people going through chemo.  Mix a teaspoon and a half or a packet and a half with Simply Orange or Apple Juice (simplyorangejuice.com), which has no added sugar, and swallow it down everyday and you’ll be fine.  Trust me – this is something I know about!

6. SUGAR-FREE SNACKS: I don’t do and can’t recommend any artificial sweetener.  I hate them all and think while going through chemo..and life..you should keep away from them.  Honey, real Maple Syrup, Agave are all fantastic substitutes…all low-glycemic and natural.  You can find them in supermarkets or health food stores.  I took my own Vermont Maple Syrup to the diner and slathered my blueberry pancakes and no one batted an eye.  There are loads of drinks made with agave: Columbia Gorge Organic: Lemonade with Agave at Wholefoods (cogojuice.com) can’t be beat.  I also made my own iced tea and added agave  – tasted like normal.

If you live in a big city, you might be able to find a bakery such as Sweet Freedom Bakery in Philadelphia: sweetfreedombakery.com.  They don’t use any refined sugar in their baking and you could never tell.  They use coconut sugar which is also low-glycemic and tastes nothing like coconut.  Google “vegan bakeries” and your nearest city to try and find one near you.

7. JUICES: I am a big fan of the idea of juices but I always forget to drink them.  Now with the chemo and all, I am shooting to have a fresh juice every week.  A friend of mine told me her Grandmother was sure she kicked aggressive Ovarian Cancer by adding freshly squeezed carrot juice into her daily diet during chemo.  She lived to be 97! Here in Philadelphia we have Pangaea Earth Foods (pangaeaearthfoods.com): the Miracle Tonic and the Skinny Green are great.  Yellow Juice Bar is meant to open any minute (yellowjuicebar.com). Find a juice bar in your town or buy a juicer.

8. KINDNESS: Be kind to yourself when thinking about what you put in your mouth.  Treat your body well and eat those foods that are good for you and that you like.  There is plenty of information out there about what constitutes a good healthy diet.  Try and stick to that…BUT do allow yourself a treat now and then.  As in Harry Potter where chocolate is given as medicine, I believe that my eating ice cream and having a sip of wine once a week is a necessary part of living my life…the rest of the week, I can stick to sugar-free living.

If I find anything else out about foods that might help, I’ll tweet about them. (@chemoinlou).

As for the second obstacle, oh baby…that deserves its own post!

The tried and true!

THE AFTERMATH

On pins and needles as I woke up today, had I changed overnight?  Would I feel different today now that drugs were coursing through my veins?  Woke up and actually felt good enough to do some errands and even saw a cheesy but cute movie, The Best Exotic Marigold Hotel.  We (I am staying with my parents so they are bound to pop up here now and again) went to dinner and I found that I could only eat little bits.  I was stuffed after two bites of salad and one sip of soup.  Ah yes, my nurse told me this might happen – small meals a few times a day…that’s what she meant.

Advice, advice, advice – when seeking for that online and in books, it is hard to find exactly what will help you.  There are books and blogs about people’s journey through cancer and chemo and recovery.  That is all very worthwhile but it would be nice to have, in one place, a list of things to expect…so you feel like you have a handle on what’s about to happen to you…the down-low, the news on the street, the goods…yes… THE GOODS.

My well-wishers have been amazing and I really felt I wanted and needed to pay it forward.  For anyone and everyone else going through any chemo or who knows someone who is, I thought it would be helpful to have some very personal “best bits” for beating anything that might come our way.  Also some treats and stuff you might not have thought about before to enjoy during what will be, I am sure, a very dramatic time!

These Louboutins above, these sensible flats that I do wear all the time, are my old friends, well-worn.  I know from experience that they provide comfort both inside and out.   Hopefully, these small suggestions might do the same.

FIRST CHEMO SESSION GOODS:

In hindsight, I can tell you that the following made my first session less scary:

1. A friend:  Try not to go alone to your first session, not matter how strong you are.  It is beyond tiring and it’s nice to have someone to keep you company when you enter the fourth hour of the seemingly endless drama.  Even if you don’t speak to each other.

2. An IPAD, Audiobooks or the TV:  If you don’t have one, try to borrow someone’s tablet.  Most hospitals have free wireless for their patients.  It is much easier to read on a tablet with your one free hand.  You can also download a whole series of Downton Abbey or any you might have missed and watch it during the sessions.  Pick something your friend hasn’t seen as well.  OR watch the TV that’s in your room.  Now the hospital channels are pretty good and you might get distracted by an old Fred Astaire/Ginger Rodgers movie on TBS or the Joan River’s collection on QVC!

3. Trust the nurses:  When the nurses offer you a drink, take it.  The nurses have been doing this a long time and know what might help. Don’t be afraid to ask for anything.  My vein was going crazy and the nurse asked if I wanted a hot pad, I had no idea what she was talking about but nodded meekly. That little hot pad made all the difference.  She also spent about ten minutes massaging my upper arm, as she saw I was in discomfort.  They know the tricks that help so use them.

4.  Pre-Chemo chores:
a. See the dentist – Try and get your teeth cleaned beforehand.  Chemo kills the most rapidly dividing cells and some of those are in your mouth.  You can’t do this during chemo for fear of infection so do it now.
b. Get waxed or do your own – If you can pay someone else to wax your bikini line, do it.  Or else have a friend come over and get silly doing it yourself – use Neat, Nair or shave.  You feel sexy and, in case your hair falls out, it nice to feel sexy somewhere!
c. Color your toenails – supposedly your nails can change during chemo so do this before – see above about feeling sexy!  Do it yourself as, again, you do NOT want to get any infections during chemo!

Louboutins from about 2004/5, Dress by Cos

Gussied up and ready to take on DAY 1 – my first chemotherapy treatment.

The dress is perfect – short sleeves for the IV, roomy for comfort and stylish, of course.  The shoes divine – only the second time they’ve been out in public.  Hopefully, they will help calm the fear of the unknown.

Had to be at the hospital early as I am taking part in two clinical trials* – one where they poke my chin and give me $20 and the other where they check my heart is still ticking and throw me a $10 credit for Potbelly Sandwich shop (www.potbelly.com). The easiest money I ever made.

After that, one of the nurses took my blood as she has every other time I visited the doc BUT now it was all about the shoes.  “Fabulous” was the consensus! Every blood taking nurse had to have a look. Told them that they hadn’t seen anything yet!

The doctor was waiting for me when I went into the examining room.  He was super enthusiastic as he geared me up for what was to come: the four IV drugs, Benadryl, saline after to flush everything away and various other oral medications to prevent uric acid build up, nausea and fever.  I signed the waiver that allowed them to start the process and back to the waiting room until my name was called.

I came to realize that it was all theoretical until that moment that your name is called.  Until then you can only guess how it’s going to be and how you’re going to feel.  Now there was no going back.

My folks had joined me for my debut session and the chemo nurse led us down a semicircular corridor with room after room full of people getting chemo.  At least that answered my first question – we all had our own separate rooms…thank the lord.

My very chirpy nurse came in and started going through the whole procedure with me:  IV, four drugs, three by syringe, one by drip, first they would test to see if I were allergic to one – that would take a half hour, then a Benadryl drip, then Tylenol and anti-nausea drugs by mouth, then all topped off by the saline drip – like a waiter listing the specials for the night.  She found  the biggest vein in my arm and in went the IV.  While the test drug was dripping away, Julie proceeded to give me all the advice she thought I would need for the months ahead.  Thank goodness my parents were with me because it was a load of info to deal with: eat smaller meals more frequently; always have small packets of food with you; if you don’t do exercise already, don’t start; don’t start flossing your teeth now; and MOST importantly, if you are tired, rest.  She told me that the one thing that gets people down the most is not feeling 100% like themselves – not the chemo, not the hair loss, but the fatigue.  Be nice to yourself, she said, it’s so important.

Very quickly it became apparent that it’s not easy to do much while you’re sitting there – forget needlepoint. If the IV is in your arm, you can’t turn a page, so forget reading.  The adriamycin, bleomycin, and vinblastine all went in without a hitch but as soon as the dacarbazine started, I knew the fun had begun.  Dacarbazine is a curious drug.  It is quite harmful if it leaks out of your vein and it hurts like a bitch going into your vein.  They need to drip it very slowly and with a load of saline to accompany it.  Also, your vein goes into spasm, so, at the same time, it feels as if someone is slowly tightening a tourniquet around your upper arm and squeezing it to buggery.

This is where the importance of the Louboutins comes into play.  Looking down at those lovely black and white striped pieces de resistance made me remember why I was here and what I was fighting for.  When the nurse came in to tell me that they would have to make the drip faster (faster=pain) because all the nurses left at 7pm.  I didn’t let loose with “WTF!…I’m suffering here and you want to get leave on time.”

I breathed and gazed down at my feet.

*The two trials are:

1. Biochemical Control of Tumor Bioenergetics and X-ray Response

2. A Multicenter Study in Patients Undergoing anthRacycline-Based Chemotherapy to Assess the Effectiveness of Using Biomarkers to Detect and Identify Cardiotoxicity and Describe Treatment (PREDICT): http://www.clinicalconnection.com/exp/EPVS.aspx?studyID=304092&slID=4017332