My First Chemo Session

At 2:15, I walked into the oncologist's office and was taken back to the infusion room. It looked like a large storage room, filled with a bunch of old gray lazy-boy reclining chairs up against the walls all covered with a mixture of old, donated blankets that I don't want to think about too long. There were a couple of grey wigs stuck in a corner that I presumed were loaners as well - and those I really don't want to dwell upon. There were poles for IVs near each chair, with a big open yellow waste bucket between them.

Here is what was in the bucket:



Looks like Vincent was the patient right before me.

I was one of the first to arrive for that session and was waved over to chose my chair. Because I was sporting a cold, I decided to take the furthest one away - the last thing I want to do is make anybody sick. From my vantage point, I had a full view of the room, and was surprised to see, as it filled up with those of us who got The Cancer, that I was, by far, the youngest person there. By at least 20 years.

It's been a long, long time since I was the kid in the room.

My nurse came to start my IV and she was not happy to discover that I was to have a 90 minute herceptin loading dose. Oh, she was nice enough about it, but I could see that she was mentally rearranging her schedule. The long loading dose meant I'd be doing herceptin until 4:00, and still had the pre-meds and the carboplatin and taxotere to go. Most people have told me that it takes five or six hours for your first chemo infusion so I was surprised that they had scheduled me for a 2 1/2 hour session. Now I know why: mistake.

Herceptin went in and I sat there, playing with my iPhone, chatting with my husband who had come to keep me company. No side effects from it, not even the herceptin headache that I feared.

I spent some time watching the other patients. Most of them were querulous and complaining old people, asking for lots of special favors and needing pillows propped and wanting medication samples and detailing every ache and pain. The nurses were pretty patient with all the whining - I wasn't. I had to put my headphones in to drown it out.

Nurse: another job I'm not cut out for.

One woman, who seemed to me to be pretty clearly dying, had come from over 100 miles away, just for saline. Her son had driven her, and she had to come back for chemo the next day. I wondered why she had to go so far. Seems very sad that a woman who probably had just weeks left to live had to drive 100 miles each way to get her treatment,especially since there happen to be hospitals where she lives. But, how many cancer patients do I know - maybe she wasn't dying? She complained a lot too: how long the infusion was taking, how long the drive had been, how it was taking too long to get treated - which only made me want to never take off my headphones. I'm an evil person for being annoyed by a probably dying woman's complaints. I smiled at her a lot to make up for it.

At at little after 4:00, the herceptin was done. I got up to hit the restroom, dragging my rolling pole with me. All the elderly in the room smiled up at me like I was a curly-haired and precocious 3 year old in ruffled panties and a sun dress. Honestly, this chemo thing is good for the ego.

Time for the pre-meds; the steroid that is going to give me the energy to clean my house and an anti-nausea med called Aloxi, and then the chemo. As the nurse hung the bags on my pole, the 90 year old man next to me started making jokes about how I was getting more than anybody else and should share. I was joking back - until his wife of 69 years told me he couldn't hear me. So, I just smiled at him from then on.



Taxotere went in first. I got a metallic taste in my mouth but no other side effects. I sucked on mints to help with the taste and read a funny book a friend had sent, which was very helpful in taking my mind off this weird situation I found myself in.

At about 5:30, it was time for the Carboplatin. Obviously, the nurse was going to have to do her overtime, but I'm very thankful that she was not complaining about it. I had fears that she would open that drip up all the way to get home on time, but she remained professional. And, good thing, as I did have hot flashes with the carboplatin, and the drip had to remain low most of the time. At 6:45, I was the last person there.



The janitor had showed up, most of the nurses had left. My nurse and one other were working on a new computer program, and each time I looked up at my drip, it still seemed to still be halfway through.

My husband and I agreed that next time she checked on me we were going to ask for it to be opened a bit wider. Hot flashes be damned - it was time to get out of there and eat!

We did, she did, I ignored the heat and we were done by 7:30.

The worst part of the whole thing was when she ripped the bandage holding my IV in and ripped off the hair on my arm. I joked at at least I wouldn't have hair next time, and she seriously said, "Oh no, not everybody loses their arm hair, it seems to be the last to go."

How cruel! Are you telling me I'm going to lose my head hair, my nose hair, my eyebrows and lashes - and still have monkey arm hair?

How cruel is this disease, anyway?

Life is seriously not fair.

Why I need chemo

People have asked, why, if I'm node-negative, I need chemo. The answer lies in the size of my tumor along with my HER2+ status.

According to various studies done, the risk of recurrence is quite high for HER2+, even when node negative and even with tumors smaller than 1 cm. (My largest invasive one was 3.4 cm and I also had other smaller invasive tumors).

One looked at 5-year recurrence for women diagnosed between 1990 and 2002 with HER2+ tumors. They found that 30% had recurrences, and this was for tumors between 0.5 and 1 cm. It is commonly thought that the larger the tumor, the more likely the recurrence - estimates for me range from 40 to 50% chance of it coming back with no further treatment.

Plus, 15% of the women studied had recurrences with metastatic disease - meaning stage IV. Frightening stuff

After chemo and herceptin, only 7% had recurrences. Most of the recurrences happened between 1 year and 3 years after treatment.

So, you can see, that as much as I don't want to do this chemotherapy thing, I really have to if I believe in science and statistics, which I do

Herceptin is very new. There is conflicting information regarding whether dropping off herceptin after your year is up means it will eventually lose its efficacy. Recommendations are one year - there are people doing it for two now. Stage IV gals get it weekly forever and it seems to be prolonging their survival.

Time will tell but I'll be paying attention.

Anyway, that is why I have to do chemo.

Off I go.



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PreChemo

I was super-excited about today - the day before my chemotherapy starts - because I get to take a steroid. Actually, two: one in the morning and one later in the day. This steroid helps prevent fluid build-up around the heart and lungs and can also help prevent nausea in chemo patients.

Why was I excited about it, you might be wondering? Well, I hear that this medication can give you energy. People have reported cleaning their houses all day, not being able to sleep at night and still having energy left to do more the next day.

I want some of that.

Naturally, I put off all my household chores for the past couple of weeks, waiting for today. You would too, I know. Why not wait until you know you'll be working like a maniac anyway. No point in using steroid-induced energy cleaning when it's not even dirty, is my way of thinking.

So, when I woke up this morning with a serious sore throat, I was sorely disappointed. No steroid? No clean house?

No chemo?

As much as I don't want to do this chemo thing, I am mentally ready. I don't want to be put off another week. I can't get it over with until I start.

I called the oncologist to find out if I can keep my appointment. I believe that I probably just have the beginnings of a cold and it shouldn't make much difference, but I figured I'd better be safe - for both me and the other patients I may come into contact with.

Whew! The nurse said as long as I didn't run a fever I should be okay. Call them in the morning if anything worsens but so far, we are good to go.

So, I popped my steroid.

As I waited for it to take effect, I sat at the kitchen table and surfed the web, did some online shopping and bargain-hunting, forum posting, game playing. Every once in a while I'd check the clock, waiting for that energy surge that meant my house would soon be sparkling.

Three hours later, I'm still sitting.

Wouldn't you know, the one side effect I really, really want, I don't get.

I bought six wigs already.

Maybe that means I won't lose my hair.



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Happy Thanksgiving

To all my American readers, family and friends - I wish you a very happy Thanksgiving. There is so much to be grateful for this year - friends and family who have stepped up to the plate (no Thanksgiving pun intended), including many who surprised me with their caring. Coworkers who put up with my distraction and absences and family who have taken on the bulk of the work that I used to do. I'm grateful for the new friends I've made through this cancer experience. And, I'm very thankful for medical researchers who created the targeted drug, herceptin, that will allow me to have many more Thanksgivings.

Eat lots of turkey and pie, and enjoy your family and your day. I leave you with one of my favorite Thanksgiving memories:



A good rickroll never gets old.

H1N1

I am always impressed with how efficient the government is. Especially the California government. And, most especially the Sacramento County government. Everything runs so smoothly here, you would not believe it. It's all a Swiss clock and the trains run on time too.

Okay, we don't really have trains. And, there are lots of potholes in the streets and the traffic lights don't synch and the cops won't come unless somebody pulls a gun on you and even then it takes an hour. But, you know what I mean.

Naturally, when I found out that the government was going to dole out the H1N1 vaccination instead of doctors, I was thrilled. After all, what do physicians know about who should get the swine flu shot? Why should they make that health care decision, when the government is perfectly capable of deciding for them?

And really, why would I even want to get it from my oncologist in his office when I can get it at a homeless shelter surrounded by thousands of citizens and injected by county health workers?

This vaccine is in short-supply. So, it would seem that each city is given an allotment and are left to individually decide how to handle the distribution.

Some of the more inefficient cities distributed it to medical personnel and hospitals. Some gave it to Walgreens Pharmacies. Some gave it to large employers and universities, some distributed it in schools and some did a combination of things.

Sacramento decided that they were going to open clinics in various homeless shelters, community centers, and churches throughout the city every other day or so. Only those people designated "high risk" were to get the shot for the first few clinics.

High risk means pregnant women, healthcare/EMS workers, people caring for babies under 6 months, and adults 24-64 with specific medical conditions (including those who will undergo chemotherapy)

But as our local newspaper wisely reported - it's all on the honor system. Nobody actually has to have any kind of proof they are in the high risk category - nobody will check. All you have to do is say you have a condition and bam! Needle in the arm.

Thank God the newspaper published that tidbit, just in case somebody didn't think of it on their own.

Along with that helpful advice, the paper published the dates and times of the clinics. I start chemo December 2nd and am supposed to get my shot two weeks before. There was a clinic near me, Saturday the 21st, which was the last one available to high risk people (or those willing to lie). It was 11 days from my chemo date so I was cutting it close but it was the only one I could get to in between doctors appointments. I marked my calendar, dreading it, because reports were that over 5000 plus people were showing up, but I work in a school, if I want to go back I have to brave the crowds.

So, I'm hanging around the house last Thursday listening to the radio, and suddenly my ears swiveled towards the radio like a cat's. The weekend flu clinics were being canceled due to rain, a decision made by our public health officer Glennah Trochet. The exact quote - and you can't make this up - is that the county health department was worried somebody might slip on the sidewalk.

I kid you not.

I checked the forecast, figuring we were in for a huge early-season storm.

The forecast? 54 and 20% chance of showers.

Honestly, I'm so impressed. The government is so concerned about our health that they aren't going to allow cancer patients to get the shot in time for chemo - because we might slip on the sidewalk.

Is that efficient, or what? Thank GOD they didn't dole it out to oncologists or other doctors - why, we foolish people might have gone out in the rain to get the shot!

It's too bad private business aren't as concerned about our health. After all, the Sacramento Kings play on rainy nights, the B Street Theater insists the show must go on in spite of any rain, concerts continue on days of precipitation - even those limp-wristed San Franciscans don't cancel outdoor 49er games on rainy days.

I think we should all boycott these businesses because they clearly don't care about us.

So now, I'm left with a dilemma. I can go to the next one in my area, but risk getting it only 8 days before chemo - or chance not getting the shot at all.

If I wasn't a school employee, I'd have skipped it. But at some point I'm going back to work, and it'll probably be at the height of the flu season and teachers don't seem to go home sick - they just come in my office and cough on me. So, I picked November 24, although it's listed as open to anybody, and I knew the lines would be huge.

Today is the 24th and I got back not long ago. And, because I work for the government myself, and feel kinda tired now, I'll relate my vaccination experience later, when I feel like it.

How is that for efficient?

By the way, we got a whole 1/10th of an inch of rain the weekend they canceled the clinic, so it was clearly the right decision. My husband and I bucked the danger and went out to brunch. We are super-adventurous types. Amazingly, neither of us slipped.

Or even got our hair wet.




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Life without cleavage

Did you know that if you drop popcorn down your blouse after mastectomy, there is nothing there to stop its descent, and you have to reach down to your belly button to dig it out?

Maybe I should skip the movies for a while.


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First Tissue Expander Fill

I had an appointment with my plastic surgeon to get my first "fill.' This is a process that will go on for about a year - every three weeks or so, he will inject the tissue expander under my mastectomy site with saline. This will stretch the skin and muscle enough to allow for an implant.

If you are anything like me, you love to watch those surgery shows. I'm particularly fascinated with the ones where they separate conjoined twins. To make sure they have enough skin to cover the areas of separation after the surgery, they use the same type of tissue expander I have.

I'll never forget some sweet little babies joined at the head who had one of these things - at the end of their expansion it looked they had three heads.

That's what my breastical area will end up looking like - a big baby head. They have to over-expand it to try and get a sagging match on the other side. For a time, I'll have a baby head on the right and a small, saggy real breast on the left. Getting dressed is going to be fun.

Anyway, the procedure went smoothly. He took out a device, I think it's a magnet of some sort, to find the area in the tissue expander to insert the needle. I was concerned because no numbing agent is used and there are random spots on my skin where I have sensation - fortunately, the opening is not under one of those spots.

He asked me if I wanted to be conservative or go for broke - I said broke. The needle went in and they started pumping in the saline.

It was like a mission control countdown. The nurse was urgently calling out, "10 cc's." "20 cc's." "30 cc's" The doctor put my hand on my skin so I could feel it rise with each cc. I could feel the muscle and skin get tighter and tighter and about 80ccs I could feel tension in my arm, so that is where we stopped.

The nurse told me that night I would feel like I had done 200 push-ups.

I can't relate.

The doctor stated that sometimes people go up to 200 cc's their first fill. I guess that means I didn't do very well. I'm a TE expansion failure. However, asking around on the breast cancer forums, nobody has gotten that much so maybe his regular clientele are the type of women who can relate to what it feels like to do 200 push-ups.

I'm the kind who can relate to the after-effects of a big shopping trip and carrying an armload of clothing. Ouch!

I experienced almost no pain that night - slight soreness and my usual muscle weakness. Next time, I'll ignore the arm stretching and try for 100 cc's.

Now, please excuse me. I'm off to get one of my son's super strong magnets to see if I can find this injection area myself and stick a magnet to me.

Ann, the walking refrigerator.

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