Chemo in Louboutins

Chemo #4 – These shoes have been my favorite ones since I bought them in 1994.  They wrap around the front of the ankle and the thick heel makes them easy to walk in!

Chemo Session #4 – Wearing a pair of my fav Louboutins…showed up early, blood taken, chin zapped, $20 in my pocket – the same old same old.  Then the waiting game began…I waited, and I waited, and I waited – you get the point.  Soon I realized that I was the only one not getting called for a chemo room.  Maybe it was because I asked for one with a window.

The nurse at the check-in desk said they were still waiting for my blood count.  So back to waiting some more – at least an hour more than usual.  I was on the brink of tears when the nurse came over and nonchalantly proclaimed, “I should have told you sooner but your white blood cell count is too low to give you chemo.  The doctor’s assistant will see you soon.”  The floodgates opened and I burst into tears.  What did this mean?  Everything is supposed to go like clockwork, isn’t it?

I got called into the doctor’s office, but before I could speak, his assistant said, “FINALLY!”  Finally, what?  Seeing my tear-stained face, she assured me, “This is a good thing!”  I stopped blubbering and tried to take in her words.  Apparently it is a good thing.  She went on to explain that it means the medicine is doing what it is supposed to do – kill cells.  Having worked with Doc Schuster for eight years, she has never known anyone going through chemo for lymphoma who was not neutropenic (the technical word for a low white blood cell count) at some point.

She rattled on matter-of-factly that this week I would not have chemo and we would begin again next week, same time, same place.  Though, I would have to give myself three shots of Neupogen this Friday, Saturday and Sunday and every two weeks until chemo was done.  Supposedly, these are self-administering injections, but I don’t know anyone who could do this…thank goodness I have a doctor in house who has forty years experience.

I would also be taking Benedryl thirty minutes before the shot and then Percocet if it hurts really badly.  What Neupogen does is promote the production of white blood cells, so it’s gotta be produced somewhere and that’s the bone marrow in your hips and mediastinum.  Great…another thing.

I started to complain that missing chemo meant that my one plan of the summer – going to see a dear friend on Fire Island – would now no longer happen.   As I started to moan about my predicament, the assistant said, “oh yes I know it’s inconvenient, we have an 18-year-old patient who had to miss her prom, graduation and after party all because her treatment was knocked off by a week.”  OK, how stupid did I feel.  Poor girl!

The Neupogen is annoying but nothing I can’t handle.  I feel it but I haven’t had to take the Percocet more than once or twice.  Kinda scared to like it too much considering how addictive it can be and you feel great when you take it.

So off for a week – it was like a holiday.

CHEMO  #4½  – I felt that my previous Louboutins didn’t have a proper chemo session and, as they are one of my favorite pairs, I decided to wear them again.  This next week a new outfit, a high white blood cell count and fab shoes…I was raring to go.

Bloods, zap, $20 and wait for the doctor.  He was there on arrival and I heard from his own mouth that he had been getting worried that my white blood cell count was NOT going down and the chemo was not doing its job but now he could rest easy.  He threw in that, as this was the end of my second cycle of chemo, it was time to plan a PET/CT scan.  I was to have one next week  and then he would see where I was and how I was doing and how many chemo cycles I had left.   He dismissed me to carry on.

A room with a window, a great nurse who was the best so far, Reiki and out.  The best a session could be…but I was left with those big questions rattling around in my head.  A PET/CT scan would verify if all this was really doing anything.  What if it didn’t, what next…My beau would be here then, how would he handle the news if it’s bad…well, I would have to wait and see.

THE GOODS:

1. A WEEK OFF
Although I was sad to cancel my plans, it was great to have a week off.  My hunger came back, I wasn’t sick to my stomach and I felt well and truly like myself.  I even think the hair on my legs started to grow again.  I felt like me.

2. MASTER INJECTOR
There is nothing wrong with asking for help – we know that already. I am lucky to have a doctor in my house so he gives me my weekly injections. If you don’t have the luxury of having a doc at home with you, ask for help!  If you can’t do it yourself, then tell the nurse and you can come in every day and they will do it for you.

3. LISTENING
I think it is good to be in the loop.  I love my Doctor but I don’t think he realizes that not everyone can understand everything he says.  I think he said that people do get a reaction to Bleomycin and that my white blood cell count might go down but I guess I didn’t really comprehend what this might mean.  I should have asked him more questions.

The original and the modern day Ruby Slippers!

I miss home.  I miss the phone calls, the planning, the chitchat.  I miss complaining about the June, July and August  rain.  I miss everything about my little house in London town.  I would much rather be deciding whether to take an umbrella with me to watch the Beach Volleyball in Horse Guards Parade (I had Olympics tickets.) – than whether to have a PICC line inserted in my arm, or not.  I know these are minor problems in the scheme of suffering and I promise I’m not saying this in a “feeling sorry for myself, woe is me, don’t you also feel sorry for me too” kind of way.  I am just mentioning it once and and then moving on.

Your experience might be different if you’re having treatment in the same place you live – your friends, boyfriends, work colleagues all know what you’re going through since you’re there.  Not only am I not doing in the city where I live, but not even in the same country.  Most of my close friends know but I didn’t announce it on Facebook.  What has made the distance bearable is that every friend, relative, acquaintance, nurse, doctor who does know has been stellar.  One email/text message/facebook poke makes the day. They are all goods!

THE GOODS:

1. FRIENDS

For six years, I have been unsure whether I should tell people that I have cancer.  Is it vanity or privacy that keeps me silent?   I think it is the fear of people giving me “the look”.  They can’t help it….you tell them you have cancer and they see you in a coffin.  I don’t want the “doe eyed, mouth turned down, hand on shoulder, ow, how can I help you, you poor thing” look.  I want them to say – “that’s nice, what’s for dinner?”

I just want people to go back to how they treated before I told them.  Everyone has fears about getting sick, no one wants to die and now I am shoving mortality in their faces.

Living with one kind of cancer, like I did, was a piece of cake.  I was told that it wasn’t something I would die of, but like diabetes, controllable if you kept on top of it and would kill you if you didn’t.  For six years, I lived with the inconvenience of having to see a few doctors every six months and a couple of scans thrown in for good measure.  Now that I have two different cancers and one can kill you more quickly and I need chemo – it’s a completely different kettle of fish. I kinda had to tell people…or I disappear from London and told people I was “working from home this summer.”

How they individually dealt with the news was very interesting.  There are some who call or email me every week, sending little presents, and continuing to ask how I am.  There are some who never ask, just going on as if nothing is different.  It’s all good.  There is no wrong and no right.  I love them all for doing exactly what they are doing.  I so appreciate the little extras from people whom I didn’t expect if from but I also adore my friends even if they don’t call just because… I told them not to and they listened.

To be honest, I have been on both sides of that spectrum.  One of my good friends died last year of Non-Hodgkin’s Lymphoma.  He would send out emails about his progress and I just couldn’t read them.  I even asked if he would take me off the email chain letter.  He knew that it didn’t mean that I loved him less or did not want him to do well – of course not.   Another friend would send out notes about his father’s cancer and we became closer friends when I constantly responded to each one with a well-wishing reply.  He told me that he was struck by how many of his close friends never even answered.  Cancer is weird – we are all scared of it and fear makes us do funny things.

Since I am am here away from most of my friends, they have to travel great distances to see me.  I love that they are making the journey but am terrified about what they will find. This is not normal fun-loving Suz lazing by the pool eating PA corn and tomatoes.  No matter how many Louboutins I wear or how strong a face I put on.

My skin is ravaged by scars from the Bleomycin, the bags under my eyes could hold food shopping for a week and my hair..well let’s just say I am going to see the wig man this week.  I’ve gained weight,  I look and am tired and feel like I am going to vomit a lot.  This is not just bog standard Suz but some alien Suz that popped in for the summer to visit.

That is not to say I don’t love it when I am with them but trying to act like normal Suz can be exhausting in itself.  It’s that double-edged sword.  Even though they might not care, I do. So what’s the answer – love them for who they are, let them visit because down deep no matter how bad you feel or scared you are about being the same, they love you for you no matter what Suz is showing.

2. THE BEAU

If any of you read my other blog, bestbitsworldwide.com, you know him as the Cypriot.  He is the kindest man I have ever known and I miss him desperately when he is not here.  He’s the kind who tells me I am beautiful even though I look as I described above.  More importantly, he checks my mail, waters my plant, and does all those things I can’t do cus I’m not there.  He finds humor in everything and always tell me I am going to be fine.

So he was coming and I was praying my hair would just stay on until he got here – which it did.  As it was falling out in clumps during the visit, he helped me arrange it so the bald spots wouldn’t show – that is a true find.  He understood that he was coming to visit me – it was not a vacation or holiday but to visit his girlfriend who was feeling poorly.  He did just that and with great aplomb.

The daughter of one of my oldest friends once said that “…he is a good man”.  Out of the mouths of babes…

My advice: Find one of these if you are looking for a partner.  I recommend Match.com.

3. THE DIRTY BITS

Chaste kisses are about all you are allowed when on chemo.  If you are to be intimate with your partner, no bodily fluids should be exchanged as you don’t want your chemo getting into his/her system.  That means no sex without protection and no oral sex at all!   My gynecologist made it clear that you should use non lubricated condoms with a lubricant such as Astroglide.  The dry condoms are hard to find in the UK so you might have to get them online.  Trojan and Durex make them.  Astroglide you can find everywhere.  This advice was helpful to me….but if you want to refrain that’s your business!   They say you can lose your sex drive on the meds….so cuddle away.  If you have no partner, make sure you hug everyone you see.