Chemo in Louboutins

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.