Chemo in Louboutins

These are super special because the first time I met Mr. Louboutin I was wearing these. Very vintage!

CHEMO #10

I was on tenterhooks the whole week.  Would my body work for me?  Would it give me what I wanted – a week home in London?  I had my chemo on Friday.  By the next Friday, my white blood cell count had to be good enough to get on that airplane. On Thursday morning, I was back at the hospital for the blood test.  I waited at least an hour and a half for the results and then the nurse came out and four fabulous words came out of her mouth: “You’re going to London!”

Let the packing begin.  Remember back to May 22 – the day I headed to Philly to start this adventure.  Four suitcases filled with swimsuits, linen and Louboutins came with me.  Now it’s October and winter is coming.  (All you geeks out there will know my GOT reference!)  Delicate strappy sandals are now to be replaced by suede and leather.

A few friends advised me to wear a surgical mask on the plane…you know, the ones that look so dorky, scary and stupid at the same time.  The nurse said that it really doesn’t help you from contracting something, just prevents you from spreading something.

So on that Friday night, I boarded British Airways Flight 66 to London, Heathrow.  Of course, the first thing that welcomed me on-board was someone coughing up a lung next to me.  I just kept thinking positive thoughts and burrowing my head into the pillow and blanket.

Touched down on a sunny warm London morning – “the nicest day we’ve ‘ad for ages” said the minicab driver.  Off he sped us to my little house in London.  (Mom came too as it was a work trip technically and I needed her for my extra luggage allowance!)  Opened the door to piles of mail and went right to bed under my clean crisp covers in my chilly bedroom… taking my requisite three-hour-upon-arrival nap.  Woke at noon and was ready to unpack by 1pm.

A cocktail party was already planned for that night with all my good friends except one who had a bad cold and was afraid she might give it to me. My boy arrived at the door with gorgeous flowers and loads of kisses.  He wouldn’t be out of my sight the whole time I was in London.  Only the heat didn’t work so the emergency plumber was called and he came right away and replaced a tiny something or other and we were back in action.  Off to drinks and the week began.  I won’t go into all the details but it was nonstop until Milan. Then back to London for a day and a half.  Packed up the jeans, boots and three more pairs of Louboutins.  Don’t need to tell you how hard it was to get on that airplane home and back into Chemo #10 on the next Monday.

As much as I was jet-lagged and irritable that I had to be back in the chair, I had the most wonderful nurse.  She said she had seen me here before so knew I had been getting chemo for a while.  She asked me what number and then said, “Ah yes, you are getting the insurance policy!”  I liked that.  It made me remember why I was there.  The sad thing was that my one FABULOUS vein is probably not going to last for two more sessions after this one…but the nurse told me not to worry.  She was sure I would get through without a PICC!

Then she complimented me on my purple shoes!

Most of you don’t know that I work for Breast Health International (www.breasthealthinternational.com). We were in Milan because one of our sponsors was having a press conference to launch a fundraising collaboration we are doing for Breast Cancer Awareness Month. While pitching the story to Vanity Fair Italia, the Head of PR for the brand told VF about Chemo In Louboutins. They were wild about the whole blog shoe cancer story and I was interviewed by the Fashion Director.

Check it out above…The wonderful journalist who interviewed me told me that vanityfair.it had the most hits it had ever had the weekend of my story: http://www.vanityfair.it/news/societ%C3%A0/2012/09/28/blog-susan-schwartz

At the same time, Oncolink, the largest cancer website,  also printed an excerpt of my blog. Read it if you have a chance: http://penn-medicine-focus-on-cancer.blogspot.com/

Although this was exciting and all, cus it was, I am not trying to blow my own horn here. It’s really funny to me that people are interested in this blog and call me strong and inspirational. I don’t feel strong and inspirational. I get dressed up for chemo and write about it in a blog adorned by amateur, kind of out of focus iPhone photos that my Mom takes of me. I am no model as my size 10 jeans are becoming smaller and smaller and don’t feel great even in my fabulous RALF (see the blog about wigs!). I am just doing what anyone would do – getting though it.

What I hope that I can be proud of is that this blog and any press it may be getting is helping someone somewhere who is going through something similar.

THE GOODS

1. A DIRTY MARTINI
Vodka seems to be the only alcohol that doesn’t burn up my esophagus. Yes, another side effect of the chemo…spice, alcohol and random stuff irritate your esophagus so keep it simple and order straight vodka,

2. A WEEK’S VACATION
It seemed like ages between this chemo session and the last – so nice to get away and be somewhere complete different.  I highly recommend it.

 3. APPLES
Apples are in season now and there are 1000 varieties at MANOFF’s – it’s my goal to try everyone.

SPOILER: THE CHEMO CONTINUES WITH #9

As far as I was concerned, it was all settled and I was so excited.  I was going home for an undetermined period of time before my radiation.  90% is 90%.  My plans were set.  First thing scheduled was kissing my boy, after that London Cocktail Week kicked in on October 8 and I would be there to sip some cocktails.  Bought myself some theatre tickets, arranged a weekend in Barcelona with my boyfriend, made dinner reservations to catch up with friends. I was planning all the things I usually do before my life was cancer, chemo and constipation.

PET/CT scan on Tuesday, Doc appointment on Thursday off on Monday!  The whole gang was coming to this meeting:  Mom, Dad, Doc Schuster, the two radiation oncologists, and various and sundry people.

My sweet Doctor Schuster barged into the room with everyone else following…he was so excited.  There has been a massive change in the scan.  The scar tissue in my chest had been obliterated by 50% and there is no evidence of the Non-Hodgkin’s under my chin.  Excitedly, he shouted from the rooftops that I was to have FOUR MORE CHEMO SESSIONS starting right away tomorrow.  Needless to say, I burst into tears.

To understand it more clearly, think of the cancerous mass like an office building.  The chemo had killed all the people (cancer) after the last scan but the empty building had remained…now after four more chemos the building is half gone.  They were hoping that they could blast their way through the remaining walls with four more chemos…. which meant less radiation.  It was great news.  My Doc never thought there would be such a change.  Still I burst into tears.  I was so desperate to go back to London and do everything I planned…pretend my life was normal again even for a few weeks.

When I explained why I was crying, Dr. Schuster said that no one cried in his office and he went about scheduling my chemo so I would be able to go home for a few days and to Milan for work…but it would all depend on my white blood cell count.  Only if it were high enough, could I go.  I would get an extra Neupogen shot and then cross my fingers.

I know it is a great prognosis and I am more than happy but after so long taking chemo and having the thought of never having to do it again was a dream.  Although I wear the shoes, dress up and put on a happy face, it still is the most exhausting thing I have ever done and now I had two more months of it.

I went home that night and collapsed.  The next morning was spent cancelling all my plans.  This time I was going to wait until the last minute….

The next day at 8am I was up putting on Louboutins, leggings and a cute top (see above) but my heart wasn’t into it.  My new wig made me feel self-conscious and I was tired, very tired.  I had a new nurse who actually was amazing.  She told me that I should be getting EMEND, a nausea drug which has a delayed reaction, so in three days when I am reaching for the pretzels so I don’t vomit, it should start to work.  Not one to take something new, I balked but she said to try it this once as it is a miracle drug.  The rest of the chemo session went as usual and I went home to start planning which Louboutins I will be bringing back from London for the last three sessions.  I couldn’t help myself.

THE GOODS

1. NEUPOGEN:   I take back all the things I said about getting this every other week.  It is a blessing and might send me home.

2. EMEND: It was a miracle drug.  Although I vomited for the first time this week, I felt much less nauseated this week!

3. THE ROYAL NATIONAL THEATRE, LONDON: Their ticket program allows you to return your tickets at least 24 hours in advance.  You get a credit to be used for further productions but this is so much better than throwing the money away.

4. CHEMO: When it works, it’s great!  

5. THE LAST SWIM OF THE SEASON:  The summer is over but that last swim was divine and I shall miss it as Autumn is now upon us.

RITUXAN #3/CHEMO #8/RITUXAN #4

This week’s Rituxan #3 only took three hours and went without a hitch.  Truth be told, the Benedryl so knocked me out that I was asleep for most of the time.  This made it go even faster!  I hope I sleep the last time as well.

Chemo 8 came a week later and I was ready for it, even excited.  As it was the end of what’s called Cycle 4, the entire family came to the hospital with me.  I was a bit worried because my skin was itching and burning because of a flare up of the flagellate rash.  It was driving me insane.

The doctor emerged with an entourage behind him, as always – interns, nurses and fellows joining us.  He looked at my skin and then they all came to the conclusion that it was probably the Rituxan exacerbating the rash.  Sometimes with Rituxan, a bug bite can become a huge deal…larger, itchier, redder.  As I was probably the only person in the world with both HL and Non-HL and Flagellate who was getting chemo and Rituxan at the same time, there was no one else he could ask.

So the lowdown for the next course of treatment would be as follows: two weeks from today’s chemo I was to have a PET/CT scan.  The results would tell me what my future would hold. The doctor said that given my skin situation there was a 5% chance that the Hodgkin’s was back (very unlikely he said), 5% chance that the scar tissue that was left would be reduced so significantly that I would need more chemo and a 90% chance that the scan would remain unchanged from the last and that I would have radiation in four to six weeks.

90% is 90%.  To me, that meant that this was the last chemo. In my head, plans were being made: scan, London, relax, radiation, DONE, London, my life back.  I started to rsvp for parties and make dinner reservations in London.  I even set up an Ocado delivery. I could see my boy, friends, sort out my mail, change my clothes and shoes, do all the normal stuff that makes up a life.

I had brought in delicious PA peaches from Bucks County for the nurses and went willingly into the chemo room…IV arm ready!

I had timed it so well.  I had the last of of the Louboutins at the ready.  The seasons are changing here so the days of open toe shoes are getting short.  As you can see from the outfit, I am wearing trousers (which are busting out of me because I have gained so much weight) and am in all black – Fall is here now.  I bought a wig but it is getting highlighted to look like my hair so still in the scarf/do rag combo.  Will have the wig next week ready for London.

Never in my life was I so excited to get constipation, nausea and leg cramps!  It’s almost over!

Rituxan #4 went like a dream as well…slept like a baby…last infusion before a well-needed break.

THE GOODS

1. LOOKING FORWARD TO THINGS
Seeing the top of the mountain, the fans cheers as the finish line emerges ahead of you, the last five pounds lost…nothing is so sweet right now!

2. MAKING PLANS
Plans make up a life…a normal life without heartache and suffering is what we all want.

3. CHANGE OF SEASONS
Surviving to see another season is something people usually don’t think about.  Most complain – it’s getting cold, it’s getting hot.  Try to enjoy it for what it is. How sad it would be if there was no snow, no rain, no leaves falling, no flowers blooming.

RITUXAN #2: CHEMO #7

Rituxan #2 went without a hitch – only 5 hours this time and I felt like I had a lump in my throat the whole time but I think it was psychosomatic as I was fine later.

Chemo #7:  As I sitting patiently waiting to see Dr. Schuster, before what I hope will be my second to last chemo, visitor popped into the office: Dr. Eli Glatstein, Radiation Oncologist extraordinaire. Check out this Glatstein love fest: http://theoncologist.alphamedpress.org/content/15/4/329.full

We had met when I was first diagnosed with NHL and remained friendly since then: dinner when he was in London, a few emails here and there, etc.  He is definitely someone you want to see at dinner, not surprising you in the hospital waiting room. I immediately guessed this meant radiation was actually happening – with its own set of side effects and problems for the future to worry about.

At Penn, they have been treating HL with radiation successfully for years, but now…. Penn has a new toy: its Proton Therapy machine. It cost them a bundle and they want to use it.

The major long-term effects of radiation to the chest can be: breast cancer and heart problems.  Will proton therapy make a difference? To make a long story short, proton therapy targets the spot directly without spatter and doesn’t go through the body. It stops at what it is supposed to target. Regular photon therapy – what’s used now – is less precise and goes through the body so more areas are adversely affected. It seems like a no brainer…but does it work? There’s the rub: they have only been using it for a few years treating HL.  There is no long-term medical evidence that it works as well as the other.  Do I want to be a guinea pig?

There are side effects to both: tiredness and difficulty swallowing.  Since the radiation is going through your esophagus, it might get sunburned making it hard to swallow. So no meat and bread…at least I will lose the weight I have gained. Oh yeah, ice cream is allowed!

I do like Dr. Glatstein very much but he is super serious and so it all comes out sounding very grim. When Dr. Schuster entered the room, he encountered two very scared and teary eyed women.  He changed the mood and eventually made us feel very upbeat and positive.  We left a little brighter but with a head full of future decisions to be made.

After that, the chemo session itself was easy.  Veins holding out so no PICC or Port has been necessary yet! It’s taking less time and at least I know what to expect.

THE GOODS

I know I write about something positive and favorable almost every week and people have commented that I am strong, fearless and funny. This week I had a meltdown and felt tired, grumpy and fed up. Thank goodness for Once Upon A Time. Loving the first series – so creative.

This time, I decided to write a list of all the issues that made me tired, grumpy and fed up. What good is a list like this?  Well, it may help you understand why people might lose the big picture of the chemo killing the cancer and moan about feeling awful.  Be happy knowing all of this is transitory and soon soon soon, you or someone you know will get over these issues.

1. Nose issues:   Runny nose all the time but also dry and scabby. Who knew it could do that! Thank goodness for soft Kleenexes!

2. Hair Issues: These are obvious. I have lost almost all my hair even thought the nurses told me that “we don’t have many people who lose hair on this floor.” NICE!  Even the eyebrows are thin. I went to pluck one that was a bit out of control and it dropped off willingly! Thank goodness for Raffaelle Mollica whose wig made me feel normal–ish again and putting mascara on my remaining eyebrows which seems to have dyed them and made them look a bit bushier.

3. Pain & Suffering Issues: Bad headaches after the chemo, nausea, itch back thanks to the Rituxan. Thank goodness for aspirin, Compazine, Zofran and Aesop Petitgrain Skin Gel.

4. Discomfort Issues: The sides of my mouth are splitting, the inside of my mouth hurts like I ate way too many lemons, I wet myself when I sneeze/cough, have hardly slept a full night,  the constipation is horrible even though I take Konsyl & Colace every day and the hemmoroid I developed has made me feel oh so sexy!  Thank goodness these only happen the first week after chemo and then they go away.

5. Vanity Issues: I gained weight, am bald, and can’t fit into any of my clothes.

THANK GOODNESS MY SHOES FIT AND THEY MAKE ME FEEL HOT!

NOW, NO MORE COMPLAINING! 

PS: Another issue – I cry all the time…every commercial, tv show, whatever..in tears.

Fabulous color, non?

Rituxan #1: Chemotherapy #6

If you want to find misinformation about any medical condition – do a google search! Then, make sure you have a good sense of humor and don’t believe everything you read.

My doc and his trusty nurse had said that sometimes people can be allergic to Rituxan – the drug which treats Non-Hodgkin’s lymphoma that I was now to take in between my bi-weekly chemo sessions.  It’s given through an IV and not supposed to have the terrible side affects that chemo does. The first dose is given over six hours.

“Why is it given over six hours,” I mused.  “Because the patient can be allergic to it,” said the kind doctor.  “What happens if you are allegric?”  “Well, you can get hives in the back of your throat…BUT the minute the drip is stopped the allergy goes away.”  WHAT??   Your body reacts to the medicine and it’s like, “Whoa Tex! Stop right there!”  Then it gets used to it and each dose gets easier and easier until the last which is very quick.  Or so they say.

Hives on your throat – I was afraid to ask what that meant and I was scared, thus the google search: first time reaction to Rituxan. The first lady I came upon had a heart attack and the EMS (EMT, UKers) had to come revive her. Great.  Then I read about a man who was not being able to run his usual 12 miles the next day, only six.  Well, if that isn’t going from the ridiculous to the sublime I don’t know what is.

I only know I was a mess going into the infusion center that day. To be honest to all of you fashionistas out there – I broke down and wore leggings and flats.  I mean I was going to be there more than six hours!  Anyway, the blog is called Chemo In Louboutins, not Rituxan in Louboutins!

They started an IV, took some blood and then gave me Benedryl. If you have ever taken Benedryl for allergies, you know it makes you tired. Well, getting it in the arm is like it being shot into your brain.  A switch is flicked and you go from normal to drugged in a matter of seconds.  You can’t form words and you can’t keep your eyes open.

Then, they started the Rituxan drip very slowly. The bag was huge and looked like it never would end.  A few nurses pop in and out, making sure you are ok. I told one the story about the lady having a heart attack and she looked at me and said, Well, that’s absurd!  She obviously wasn’t at Penn. That would never happen here… We would never let it get that bad..so stop worrying.”   The nurse also assured me that in all the years she has been a nurse, there was never anyone who didn’t get the whole first dose.   So I knew even if I reacted, I was staying there until the bitter end.

After the first hour and a half, they came in to speed it up.  About five minutes after the change, my throat felt funny and I panicked.  They stopped the medicine right away, then alerted me that it would get worse before it got better. I felt a big lump in my throat as they were giving me an IV of Pepcid, resuming the Rituxan again after 30 minutes.

On our floor, four of us were getting Rituxan for the first time and every one of us had a reaction at the same time. The nurses were scrambling to take care of all of us. After this first reaction, it was fine for the last five or so hours…just exhausting. I got home and crawled into bed.

Thank goodness I had no symptoms the next day and, no, I did not go for that six mile run to test myself.

The next week was Chemo 6.  By now I am a pro – I know exactly what meds I take before the chemo and which nurse is the best for getting in the IV the fastest. Miraculously it did not hurt and I was out in record time.

Are you asking – hey Schwartzie, love the shoes but what’s with the hair and glasses – we can’t see your face?   Well, the time has come for me to cover up my hair-starved head.  I haven’t lost it all but, man, is it thin. I had bought this Halo Bob half-head hair thing and putting it on gives me the perfect chance to get out the Pucci scarf which matches the shoes (kind of).  The glasses are my defense mechanism because I am not feeling so pretty and the dress is big because the pounds are piling on.

The boy has left so not so happy…thus the false grin.

THE GOODS

1. THE INTERNET
The Interweb, as my friend Helen calls it, is great for many, many things: FaceTime, Spotify, watching shows online, blogging, etc, etc..but use it carefully.  Finding out medical info online can be as helpful as it is dangerous.  Make sure you know who is saying what and where they are saying it…this definitely pertains to anything to do with your health!

2. THE HALO BOB
This work of hair artistry has saved my life.  For anyone unsure of when their hair might fall out, this is perfect.  I had too much hair for a wig and too little to feel pretty.  Embrace the Axl Rose look!

3. CELEBRATING THE END OF PROJECTS
I know I already wrote about projects but I finally got through my first one – so time to celebrate! A needlepoint pillow I have had for at least 10 years – finally done. Now started the XMAS stocking for my beau…cranking that one out…and the other pillow for my Mom. Hopefully chemo will be over by the time these are finished!  Oh, had a dirty Martini to celebrate!

These are too sexy!

As you can see from the photo above, the hair is not so full and lush, every week a new clump disappears never to be seen again.  Still, thrilled that I can go out without anything covering my head.

Four sessions of chemo down and doctor’s orders are for a PET/CT (Positron Emission Tomography – Computed Tomography) scan to see what’s going on inside me. The whole procedure is as follows: they shoot you up with radioactive sugar; you drink two glasses of hideous orange/coconut flavored barium (the stuff of nightmares), wait an hour and then are scanned for 20 minutes. This scan picks up the metabolically active disease in the body – which means it tells you if and where cancer is hanging out. Done by 9:30am and the waiting begins until…the next day….

…Chemo #5 and scan results day. Since it was such an important day, I wore my super chic Jean Paul Gaultier skirt and my most sexy gorgeous CL’s with their fabulous silver heels. As I left for the appointment, my visiting boyfriend inquired as to why I never had worn this outfit before, because I looked really hot. I had no good answer for him.

My family came with me to the hospital, both Mom and Dad. The boyfriend was not invited, which I hope he was ok with. I didn’t even want him to sit with me during chemo. Don’t get me wrong – he would have come if I wanted him to. He respected my wishes and spent the day walking around Philadelphia.

I guess even though I want him to be a part of this whole nightmare, I don’t want to expose him to the gritty details. I am happy that while he is here I have hair and I look like myself except for a little bit of extra weight and loads of Bleomycin scars. But mostly, I look like the same girl who left him in May. It has all to do with my insecurities – nothing to do with him. I want him to be with me sipping an Aperol Spritz on the Gritti terrace in Venice, scoffing blueberry pancakes at the diner in Lambertville, having tea in my little house in London – not watching the AVD drip into my arm in an airless hospital room.

As we waited for the doctor, we heard his voice approaching but he then turned into another room. Damn, It would be another hour until he saw us. But my mom was quicker than I and she stopped him in his tracks before he had a chance to enter the other patient’s room. “Please give us a hint – we can’t sit here for another hour in limbo!” Kind Dr. Schuster said it was better than good. Do we breathe a sigh of relief now? Would he report that I didn’t need any more chemo? It was all over??

When it was finally our turn, he showed us the scan and it looked like the only place there was still cancer was under my chin and that was the incurable but livable NHL. (Before the chemo, I had an enlarged sickly lymph node under my chin. Most people didn’t really notice it was anything unusual – just a massive double chin. This lump had halved in size since the chemo.) My chest appeared to be empty of cancerous cells and my spleen was clean. This is amazing news and being superstitious I hate to even write about it now. Doc Schuster said I was to get two more cycles of chemo (4 more sessions) and begin to have Rituxan in between the chemo sessions. Rituxan is the first line of defense against Non-Hodgkin’s Lymphoma. So now every week, I was to get an “infusion.”

Then as I was jumping for joy inside – I heard him say the word RADIATION. What was that again? Yes, I did hear it right – after the chemo I was to have radiation – just to be sure. Radiation…radiation…shit. It wasn’t over yet.  Radiation brought up a new set of concerns, which like Scarlet O’Hara, I am going to think about tomorrow – not today.

Needless to say, I called my boyfriend to let him know the good news as I waited for my fifth chemo.

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.

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!