Not as unscathed as I thought

Naturally, two days after my son's field  trip, I came down with a cold. A cold on chemo. I guess that experimental spit got to me.

During chemo Friday, I thought I had a sinus problem since only my left nasal passage was plugged. A not uncommon occurrence in a person with a deviated septum who is addicted to Afrin.   Despite my dislike for the stuff, I asked for extra benedryl during my infusion to see if it would help.  It didn't.  As the night wore on I began coughing, and as I plowed through my first box of kleenex, I realized I had a full-fledged cold.

I had a miserable night.  Who doesn't when you have a cold?  Mine was compounded by the fact that the Taxol causes heartburn and gas, and with all the coughing and post-nasal drip, I was closer to puking than I ever have been while on chemo.  With the chronic "herceptin drip" I always have, plus this cold, my bed was a veritable flood of snot.   Naturally between the wet pillow, the coughing, the almost-puking and the burping,  I was finding it hard to sleep.

Sorry guys, I'm taken.

I actually doubled up on the ativan, shoved a keenex in each nostril and spread some on  my pillow and tried to sleep that way.  Yes I did.

My attempts at keeping dry worked only marginally.

The funny thing is when I was at the Exploratorium, I didn't see one person cough, one kid sneeze, one person pull out the tissues that entire field trip day.  I tried not to touch the exhibits and pulled out sanitizing wipes when I did.  The only area of danger was when I forgot I was Cancer Girl and put on goggles to look at a perspective change experiment - those goggles were probably on 400 kid's eyes before mine.  But, I didn't get an eye infection, I got a full-fledged cold - cough, headache, general misery.

At 5:30 am this morning, I woke up feeling hot.  I took a temperature and it was 100.8.  I was told to call the doctor "immediately" if it got over 100.5, since, of course, I have few infection fighting white cells.   But, I'm guessing immediately didn't mean 5:30 in the morning on a Sunday.  And, if it did for him, it didn't for me.  I can only be so compliant.   So, I took two Tylenol (another no-no) and went back to sleep.  My fever has not gotten past 100.2 for the rest of the day.

During the brief periods I've been awake today, I have pictured my poor old white cells coming out on crutches and walkers and canes to try and kill that infection, and beating it back enough to keep me out of the hospital,  and I'm so proud of them. 

They need to keep it up as tomorrow I have a long-overdue appointment for a tissue-expander fill, and I am also supposed to go to work. 

Think under 100.5 degree thoughts for me.

Things I think about during chemo

Five to six hours gives you a long time to think.  Here are some of the things I ponder as I go through my treatments.

What is up with the word Mastectomy?  I didn't have my mast removed, I had my breast removed.   A mastectomy should only take place on a boat.

If you are having a mammogram to see if your mammary glands are healthy, then why wouldn't you have a mammoectomy?  Of course, they remove a lot more than just mammary glands - they take everything, including skin, areola, nipple, so it wouldn't be very accurate. But neither is mastectomy.

The word mastectomy is derived from the words "mastoid process," which is an oddly-named bone in your ear - one which is apparently shaped like a breast.

What?

Who decided that?  I bet when men need a penis amputation, they don't rename it after a cute little bone in the wrist that looks like a penis  Oh no, honey, you and I both know that they would name it after the biggest bone in the body.  It'd be called a femurectomy. 

Why is it when your breast is removed it's a mastectomy, but when your arm (or penis) is removed, it's an amputation?  I'm not equating the necessity of an arm over a breast, but if they take off a body part, isn't it all an amputation?

I suggest we rename this surgery  Breastectomy or Breast Amputation.  Boobectomy would be an acceptable alternative, but not SweaterPuppyectomy.

How do I refer to my girl(s) now? I never realized how often the subject of breast(s) comes up. Maybe that's because I'm not a guy. But, since I've had my right breast removed, it seems I have to refer to that area of my body often. Obviously, I do that on this blog but it also comes up in conversation a lot more than you might think.

No, I won't say why.

The problem is,  I'm stuck on phrasing. What do I call that area? I don't have breasts anymore. I have a breast and a

...uh....

tissue expander? That doesn't sound right for casual conversation.

The royal family has an heir and a spare, right?  So, do I have a breast and a mess?  No, that's not very positive, is it.  How about, breast and a quest?  A quest to turn that area into something resembling a normal breast?

Old-fashioned women say "bosom" and I suppose I could resurrect that.  It serves a dual purpose.  But, really, the only word that works is "chest" and that makes you sound like a man. 

Speaking of men:  Men get breast cancer too.  But, how is that possible?  Men don't have breasts.  They don't have lobes and they aren't designed to nurse a baby.  Male "breasts" are mostly just fat.  That area on them is called their chest, or if they work out, their pectorals.  So, what kind of surgery do they have?  A mastectomy isn't an appropriate word because while they have a Mastoid Process bone in their ear, just like we do, they don't have the conical shape appendages on their chests that the surgery is named after.

So, why isn't their surgery called something else?  Perhaps they can have Pecectomies. Fatectomies?

Chemo. It's such a happy little word, isn't it?  We patients don't go to have our chemical therapy infusions,  we go to chemo.  Yay!  Chemo is cute!  If I had a girl I might name her Chemo, only I'd spell it Khymo.  Why aren't other treatment names shortened to happy little nouns?    If somebody has a Coronary Artery Bypass they don't say, "Hey, I'm going to catch a CAB" now, do they?.

Why don't we have darling little names for all sorts of frightening medical procedures?  We could just call surgery "sugar."

"Oh honey, Wednesday I'm having a little sugar on my lady parts."

Heh, I said sugar on lady parts.  I bet that gets somebody's femur all excited.

Now you know the kinds of things I think about in that Barcalounger at Khymo when my iPhone battery runs out.  Aren't you glad you aren't in my brain?

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Doing normal things with cancer

My youngest son is in 8th grade and yesterday I accompanied him on a field trip, as I have done many times over his school career.  Because he enters high school next year, and because he's my youngest child, I realized this could very well be the last field trip I ever attend with one of my children.

I was going, chemo or no.

The trip was to the Exploratorium in San Francisco.  The Exploratorium is a huge, two story warehouse just chock full of hands-on science experiments.  It's pretty fabulous, and if you are ever visiting SF with kids, or just like kid things,  it's a must.

San Francisco is approximately 100 miles away from where I live, and as Californians know, it's a traffic-filled drive. That meant I had to be at the school at 6:45 in order to gather the kids and get on our assigned charter bus.  In case it wasn't clear, that was 6:45 a.m.  Ante Meridiem.  Morning.  I haven't been up that early since my mastectomy back in October.  Chemo means I need a minimum of 12 hours sleep a night, which means I typically wake up between 10:00 to 11:00 a.m.


Now, you might think I'm a little crazy chaperoning almost 300 thirteen year olds on a field trip to a museum where the object is to touch and interact with stuff that other people have touched and interacted with 100 times before you got there.  And, you would be right.

But, as you all know by now, I throw caution to the wind.  I spit on danger.  I just hope it doesn't spit back, which is no guarantee with the Exploratorium.  I think approximately 10% of the experiments involve actual spitting.

The field trip went well and the kids behaved beautifully.  We watched the movies Madagascar and Finding Nemo on the bus. That bus ride was extremely cold; so cold I was getting numb.  When I got to the Exploratorium, I immediately bought an extremely overpriced hoodie so I could have extra padding, and I was already wearing a shirt, sweater, leather jacket, jeans and UGG boots.

We were to be hands-off when the kids arrived at the museum, so we let them run and just walked around making sure they knew somebody had an eye on them.  I made it through lunch and two cups of coffee before fatigue overcame me and I had to bench myself. With more coffee.

I sat on a bench in the public area and glared at any kids who looked like they might misbehave, just so they knew I could get up if I wanted to.

I promised my son that I would wear a wig, so as not to "make the other kids uncomfortable" and I kept my promise.  But, it's the last time that I'll make that promise.  The wig was more uncomfortable than my fatigue, the cold, watching Madagascar for the tenth time, and hearing the squeals of 300 thirteen year olds combined.  The last two hours all I could think about was how I wanted to rip it off my head.  I was *that* close and it was only love for my son, or rather, the comfort of his friends, that I didn't.

I get it: it's bad enough having a mom with cancer, you don't want to have the mom who looks like she has cancer.
 
On the way back I sat with another parent chaperone who also was undergoing cancer treatment.  He has some form of rare sarcoma but has completed his treatment and is into the regular testing for recurrence phase.  We chatted chemo and surgery for an hour or so - finding common ground.

It seems like I run into people with cancer everywhere now.

We made it home by 4:30 and I went to take my boots off.  And struggled.  Once I got them off, I saw my feet and ankles were swollen.

Exhausted, I rested on the couch but all that coffee caught up with me and my nap was fitful at best.  Last night's "Boys" American Idol performances were boring enough to have knocked me out, but since they didn't, and the coffee was still wreaking havoc on my system, I decided to take a sleeping pill before bed.  I needed to work the next day, after all, and couldn't do that with no sleep. 

It was my second time taking Trazadone.  And my last time.  The first time I had taken it in conjunction with Leukine and I attributed all of the negative side effects I experienced to Leukine and not the Trazadone. I was wrong, and the Trazadone goes down the toilet with the Ambien today.   I got a terrible migraine that it took three imitrex injections to control, and couldn't wake up until noon. As I write this, I'm still fuzzy and in my PJs and I only hope I can make it to pick my son up from school.

My alarm went off at 9:00 and groggy and in major pain, with my iPhone right there,  I sent a quick email to my boss saying I couldn't go to work.  I hope I did, at least.  I really wasn't very conscious.  It was disappointing, as the whole reason I took the pill was so I could go to work.


Today the bottoms of my feet feel burned, which is a sign that neuropathy has affected me. And, I ache all over which is normal with Taxol.  Other than those things, I appear to be unscathed.  So far.  I did forget  I was susceptible to infection and played with a couple of experiments - one where you put goggles to your eyes.  If I get an eye infection, I have only the Exploratorium and their temptations to blame. 

Maybe, like a true American, I'll sue them.  Should be a nice ADA lawsuit.  I should get money for them putting out fun things those with suppressed immune systems shouldn't touch.

Aside from overdoing the coffee and the subsequent problems resulting from trying to control extreme caffeine intake,  I'm glad I went.  It wasn't as easy as it would have been last year, but it proved to me that we find ways of gathering strength when we thought we had none.

Even if our strength mostly comes from coffee.

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Chemo Angel

In researching my "free things for cancer patients" list, I came across something called "Chemo Angels." 

This is a group that matches generous people with those of us who are undergoing chemotherapy.  They send little things in the mail to lift our spirits (which we often need) and generally offer support. 

Naturally, being the responsible investigative reporter that I am, when I found them I signed up.  Yesterday, I got my first letter, a lovely card, and a photo of my Angel and her family.  And, I can't tell you how thrilled I was.  A lot more than I had expected to be.

I don't know how the process goes - how they do the matching. But the woman they matched me with has, at least superficially, many things in common with me.  Our two boys are similar in ages - ten years apart..  (Although she has a daughter in the middle, and the girls in my life are my stepdaughters.) We both have been married a long time. Her picture shows a very lovely family, the kind you would want to meet.  She looks to be about my age too, maybe a bit younger.  (But who isn't?)

Years ago, I participated in a charity called "the Box Project."  The idea is similar to Chemo Angels only instead of lifting the spirts of a person undergoing a physically debilitating medical treatment, monthly you send a box of items to a needy family in rural America.  I liked the idea of directly helping somebody through personal contact, and getting to know somebody I otherwise might not.    I was matched to a woman in Louisiana, and I sent her boxes regularly for a year.  But, I realized it takes a special kind of person creative enough to come up with items to send on a regular basis.  It's not easy trying to please somebody you don't know.

So, I really appreciate those who participate in projects like this because I know it takes thought and dedication.

You might think that a person with family and friends may not need something like Chemo Angels, and I was uncertain too, until I got the letter yesterday.  It warmed my heart more than I could have imagined.  Our family and friends are, of course, are supportive.  But the funny thing is - we worry about them worrying about us.  Each time they do something for us, we know they are frightened or worried or feeling bad for us, which in turn makes us feel a bit guilty for feeling sick.

Or, at least it does me.

So, strangely, support and kindness from a stranger may mean the most because there are truly no strings attached.  We don't even have to respond if we don't want to, although, of course, I will. 

In fact, I guess I am. 

The only thing is, I have a feeling my Angel won't be a stranger forever.    But, I'll worry about that when the time comes. 

Vampire Diaries

I am a small person with bird bones.  My wrist is five inches around; I wear a size 4 1/2 ring.  I can't purchase a watch without a picture of Hannah Montana on it, and I buy bracelets to use as anklets.

I have correspondingly small veins.  Watching people draw my blood has always amused me, because I have a strong sadistic streak and no needle phobia whatsoever.  I like seeing sweat on the brow of the phlebotomist responsible for getting blood out of me and into that vial.  It just doesn't happen without hard work.

Typically, the way it goes is the first tech pokes around a while, moving the needle in and out, muttering about tiny veins until she either pops one or freaks out.  She then calls the specialist with the butterfly needle who has the finesse to start the flow. Even when I try to make it easy - drink lots of water and wear warm clothing to "plump the veins," it's never enough to get the well pumping.

I'm so dry if I was Bella, Edward would leave me.  

Back in November when I went in for my initial chemo consultation, I was quite surprised to find out that they weren't planning to put a port in.  (For those who don't know, a port is small appliance installed surgically under the skin near your collarbone. It connects to a vein which allows them to administer chemo drugs without sticking you.)

Because I had lymph nodes on the right side removed,  there is only my left arm available for sticking.  I was certain that with a year of infusions ahead of me and only one arm to use, they were going to insist on a port.  I was relieved when they said it wasn't necessary, but still, I mentioned that medical professionals in the past had difficulty getting blood from me. They all seemed convinced that they were expert enough to handle it, so who am I to argue?  Maybe getting blood out and pushing chemo drugs in are two vastly different things.   I had no desire for yet another surgery and subsequent scar so I wasn't going to argue to get a port.

To be clear: their plan was for me to have a year of weekly infusions in my left arm only, an arm with tiny veins, using no port.

Unsurprisingly, after 2 1/2 months, it has become increasingly difficult for the chemo nurses to access my veins.  They can't seem to get the ones down near my wrist at all anymore since they "roll," and so can only use the area in my elbow, which is becoming deeply scarred.

Last week when one of my nurses spent ten minutes getting the canula in, she said, irritated,  "So, what's the plan for when we can't do it anymore?"

I looked at her, surprised.  I have to come up with a plan?  My plan was to get a port before all of this started.  Their plan was for me not to.

At this point, I intend to stick with their plan.

But, I am not one to leave people without hope.  I said, "Well, when chemo is done maybe I'll try an every three week herceptin schedule and see if I have any side effects.  Hopefully, that will give everything time to heal."

That leaves her six weeks to, as Tim Gunn would say,  "make it work."  

I watch Intervention.  If a brain-dead junkie can figure out a way to inject chemicals into his veins every couple of hours for 20 years, surely a smart chemo nurse can figure it out for six more weeks? 

If I really have to come up with a new plan:  the space between my toes is available.

Did I mention before, that I hate leukine?

Chemo number...oh I can't remember

Is it a bad sign when you are sitting in the doctor's exam room and he walks in, takes one look at you and says, "You look a little tired?"

Is it worse if your doctor is an oncologist who sees a whole lot of tired and sick people?  And, if you put on full make-up for the visit?

I said, "I am really tired."

He said,  "Well, that's good then, you only look a little tired."

He cracks me up.

My whites were low  (0.7 for the number junkies) but I got my chemo so I'm still on track.  He said when he's on a curative path (as opposed to palliative) he doesn't like to skip any if at all possible.

I'm down with that.

But that means today I give myself that horrible, horrible leukine.  Think of me about 5:30 as I inject myself with something I know is going to give me three days of misery.

He was concerned about the breathlessness but it's mere anemia.  My blood oxygen levels are normal, my lungs sounded fine.  My reds haven't gone down any further so I'll order that iron supplement.

He told me I needed to take it easy and I might be doing too much.  (Yes, I have been walking from the bed to the computer and deciding what my husband should bring in for dinner - a grueling schedule). He also wondered why I was working and if it was too taxing for me - um, hello, you told me I could.  You wrote the note!

I did tell him I was going on a field trip to San Francisco with 300 thirteen year olds next week, and he looked at me and pulled out his pen and wrote "admonished patient to take it easy and rest."  Hah! He is a funny, funny man.  He did admonish me in fact; he said that if I overdid it I would likely find myself on the floor with a ring of faces staring down at me. 

Duly noted. 

Really, this is how bad I am.  After he said that I thought, "Oh, that might make an interesting blog post." 

We are going to a museum with lots of benches and taking a charter bus, and I will be with International Baccalaureate students (read: high achiever, gifted and well-behaved students) so I can handle  it.

I did get to sit with Jeannette and Burt this time. I learned more about their lives- Burt was in the military and traveled all over the world.  This made life hard on one of their kids, who hated to move.  When he got transferred to Labrador,  Jeannette didn't go - that's where she put her foot down, and who could blame her? Labrador?   Aside from cool dogs, that place has nothing to offer me either.  Burt told me a story about how he walked across the snow from his 2nd story barracks window to his neighbors 2nd story window for a visit.

I asked Burt what he was going to do with himself once all these appointments were done, and he said he was going to recite the "Senility Prayer"  in the hopes of forgetting it all.   I love that guy.

I said "I'll see you next week!" but as it turns out, I won't.  I am having chemo on Friday next week due to the field trip.  Then Thursday the following week to get back on track..  That leads me to March and I think Jeannette is done with her treatment in late February.

I may have seen them for the last time.

I hope not.

I'm going to make a trip out there and drop them a card, just in case.

Chemotherapy-induced anemia

To keep a faithful record of my cancer experience, there are times when I'll have to go negative.  I try to avoid it, mostly because I find this experience so peculiar that it's more funny than anything else.

But, this exhaustion I feel right now - well, it's hard to make a joke out of it.   I thought I was tired when I had active cancer.  Hah!  I spit on that tired.  Say this with an Australian accent:   That wasn't tired, THIS is tired.

Each week when you go in for chemo, the first thing they do is take your blood for a CBC.  They have a machine right there that can read your blood counts within minutes, and then one of the nursing techs drops the results in your lap.

You learn pretty quickly to read what those numbers mean but for newbies to chemo, here is a website that will help you interpret the results.

What is initially important is your white count.  Your white cells are the infection fighting cells.  Surely you remember that video they showed you in elementary school?  Your white cells are the guys in white hats and happy faces rushing out to reach the site of an infection (which of course, has a black hat with a mean face). The white hats pull out their swords, swarming the black-hatted infection and battling it until it is dead and its eyes turn into X's.  (Do kids still watch that?  The fact that an infection was killed is probably too harsh for them now, and the black/white hat might be too racially charged).

Well, imagine if you had no white hats and one of those mean-faced cells got into your body.  Since they are mean, they would multiply and kill you, right?   That's what happens when your whites are low - no guys with swords.

One line of the report they give you says "GRA" or granulocytes.  This appears to be what they use to decide if you get chemo or not. Expected "grans" for me would range from 2.0 to 7.8.  If it goes under 1.5, they typically won't give you chemo.

Unless they do. Mine last week was 1.2 and I got chemo anyway - my doctor allows it if you are a little under.

Tomorrow, unless my whites have gone up on their own, they probably won't give me chemo and instead will have me take Leukine.

Having a low white count is asymptomatic.  You feel fine, you just can't fight off any infection.  Right now I have no way of knowing if they've gone up or not.  You wouldn't even know your counts were low until one day, you catch a cold and wake up in the hospital, near death.

When your white counts are low, you get a bonus lecture from the chemo nurses:  use sanitizers, stay away from sick people, don't eat fresh fruit and vegetables and stay home if at all possible..

A low red count is different.   People are more familiar with a low red count because they know the word "anemia'.  What is signifcant for chemo patients is the hemaglobin line item on your report,  Hemoglobin is the protein in red blood cells that carry oxygen to your body.

I don't remember a video for that one - probably because there were no swords involved.

Expected range for me would be 12.0 to 18.0.   Last Wednesday, mine was 9.8, which means I am anemic. If it gets down to 9.0, they said I will need a blood transfusion.  So, naturally I'm eager to see my blood counts tomorrow - something I never thought I'd say in my entire life.  I have no idea how fast they can drop - or if they even will drop.

Having anemia does bring symptoms and mine have gotten progressively worse over this week. When your oxygen levels are decreased, you feel tired.  Really, really tired.   I am short of breath, even on resting.   I want to sleep all the time but no matter how much sleep I get I don't feel rested.  My body feels heavy - it's hard to move it around. My brain feels like it's covered in gray cotton.   But, the breathlessness is the worst.  Even typing this is making me breathe hard.

I volunteered to go on a field trip next week to San Francisco.  It's likely the last field trip my son will take and he has been excited about it since he heard about it.  Right now, the thought of getting up at 6:30 in the morning, taking a bus to San Francisco with 300 13 year olds, walking through a museum for five hours, sitting outside in the San Francisco fog to eat a bag lunch, and then another two hour bus ride home is almost more than I can imagine.

But, I'll manage.  Maybe if I can skip chemo this week, I can recover a bit.

I've been awake and sitting in the same place for five hours.  It's time for a nap.

Valentine's Day

I've never been much for Hallmark Holidays.  But, perversely, should my husband ignore it, it would be at his peril.

People are complicated.

Men say they don't care about it, and I think they truly mean that.  We women say it too, but I'm not sure we fully mean it.  For the majority of us, at least one day a year we want to be appreciated by our men as feminine and attractive women.  That's not to say our men don't treat us right the rest of the year.  But,  Valentine's Day is pure,silly romance and not about being admired for strength of character or a being a full partner.  It's about being appreciated merely for being a woman - his woman.  No, we don't need Mr. Hallmark to remind us when to be romantic, but it also doesn't hurt.

And, it's good for the economy.

As I've said before, breast cancer has not changed my self perception, and my feminine identity hasn't been downgraded at all.  Breast or not, hair or not, I feel exactly the same.

But, has it changed for my husband?    He's now seen me, a woman who once had a pretty great figure,  with a caved in hole where a breast should be.  Nightly, he sits and eats dinner and watches  TV with a bald woman who wears no makeup because it's causing eye infections, and who has a ridiculous hand-held fan in her pocket for sudden hot-flashes, and who has two very different sized breastical areas -one resembles nothing more than a hard turtle shell crawling towards the neck.   I look sickly, ten years older than I did three months ago,  and my energy for him or anything has never been lower.

Hell, I have poison coming out my pores.  After chemo, my dog sniffs me for days.

It might be unpleasant for him to have a wife he once thought was pretty end up permanently scarred and bald and sick and smelling like chemicals..

For the rest of his life, he's going to have to put up with a woman with mismatched breasts, with scars, who will have repeated surgeries. He, too, will live with the fact that it could come back at any  time, and maybe next time will be fatal..  And, yet, he's never once made me feel anything less than I was before and in fact, I'll bet none of what I just wrote ever crossed his mind.

If it did, he never told me.

So, this Valentine's Day I think I need to forget my false idea of what is romantic and remember all he's done.  No matter how tired he is or how long a day he has had, he stops and picks up food because I can't cook - without complaint.  He's cleaned the bathrooms when my whites are low so I don't get sick.  Almost all errands are run by him.   Weekly,  on chemo day, he cuts out of work early to pick our son up from school. He's picked up my slack in more ways than I can count - including financially.  My salary is cut in half and as a state worker, he's taken a 15% paycut.  Yet our expenses have gone up due to my medical condition - we have copays sometimes four times a week.  Prescriptions and hosptial parking fees and medical equipment and gas to and from appointments, and silly things like wigs and foobs and false eyelashes and even heating bills as I'm cold all the time  - and I've not heard a word of complaint.

That's romance baby - the quiet kind.

So, happy Valentine's Day, honey, and thank for all you do - and if you feel cheated, thank you for never letting on.  It's truly what marriage is all about - not Valentine's Day cards and flowers.   When all this is over, I owe you one and I won't forget it.



Now, where's my chocolates?

(See, I told you people are complicated)

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Journey with Cancer

I just heard Carly Fiorina talk about her journey with cancer, and it gave me pause.

Carly gets a journey along with her breast cancer diagnosis?

How come I don't get a journey?  I've been pretty much stuck here in good old Sacramento, shuttling between doctor's appointments and home; between my bed and the couch.

Apparently, along with her cancer diagnosis, Carly got a vacation,  which somehow persuaded her to run for California's US Senate seat.  Along with my cancer diagnosis,  I got a messy house, an emptier bank account,  and a job scaled back to part-time.

What does a journey with cancer mean, anyway?   I picture Carly walking on the beach, footsteps in the sand, ocean foam gently washing at her feet, hand-in-hand with her tumor.   It sounds so romantic, doesn't it?

If you think about it, a journey is more than a vacation - it's travel where you learn something, right?  So, we walk with our cancer, learning important life lessons.  A journey with cancer is a backpacking trip among the real people of Europe.

People who mug you and make you sick, that is.

So it's a journey now?   I thought we were battling cancer.  We aren't supposed to walk with it, we are supposed to poison it, burn it, take that tumor's hand and hurl it into the ocean, right?

Is there some point when the journey with cancer becomes a battle?   Or, does something happen to turn this battle into a journey?

Like, running for Senate?

These are the questions I would ask Carly if I was interviewing her.

Then, knowing she's a billionaire, I'd ask her to pay for my own journey.

Preferably to Maui.

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No, I won't be going nuclear

Meaning - I won't need radiation.  I figured it wasn't going to be necessary for me, but my plastic surgeon, having seen what can go wrong with breast reconstruction and radiation, wanted me to have a consult.

So, I did.

I showed up for my 10:00 a.m. appointment at 9:50, paperwork completely filled out and even a typed list of medications handy.  Getting up to be somewhere  in the morning is extremely difficult these days but they couldn't accommodate an afternoon appointment.  I was impressed with the friendliness of the staff, and they even had coffee, tea and cookies available.  I sipped some coffee while I waited in the empty room.  I did get a chance to see Burt when he came in to drop something off - Jeannette was in the car.  Cancer World is very small.

But, when 10:45 rolled around, my coffee was drained, I'd updated my facebook status more than anybody should  and I realized that my next appointment at 12:15 was going to become a problem, I admit I almost went nuclear - without the assistance of their machinery.    I went up and asked if my appointment time was really at 10:00 or if I'd made a mistake, because I'd been sitting there and nobody else was in the waiting room.  The extremely nice woman said, "Oh, technically your appointment is 10:30, we want people to show up."

That put me in a bad mood.  I'm an adult.  If you tell me 10:00, I'll be there at 10:00..  I don't need to be told 10:00 when you mean 10:30.  Not especially when I'm on chemo, anemic, exhausted, and could have used the extra sleep.  Anyway, I said that I had another appointment and I would wait until 11:00.  They said I could reschedule and I said no, I wouldn't be rescheduling.  If they can't see me now I'd go elsewhere.

They got me in, and being the only patient there, that wasn't too difficult.

The doctor, despite the glitch with the time, was one of the nicest doctors I've encountered yet.  I told him that I didn't think I needed radiation, which he agreed with. (I always like doctors who agree with my medical expertise.)   He did an exam anyway, told me because I'd had Lobular Carcinoma in Situ in my amputated breast that I had a 50% chance of having it hidden in my remaining breast without having shown up on MRI and to watch it for a growing  cancer.. I plan to do that but in all reality, it'll probably end up slipping my ADD mind as time goes by.

Wouldn't it suck if I had to do this all over again in ten years though?

He also strongly suggested I get a bone density test for osteoporosis because of my small frame and brand new menopausal status. 

Another test, oh joy.  The old lady test, to boot.  Cancer made me old.

But, the important thing was I get to skip having radiation, which is fabulous.  On to reconstruction!

Once chemo is over, that is.

I made my other appointment and got a call from the radiation office.  They had forgotten to give me my insurance card back.  Sigh.  So, I  flew back and stopped off to pick it up first before chemo.  She apologized, which was nice at least.

My whites, once again, were very low and my doctor, once again, wasn't there.  The nurses decided that since they'd given me chemo when it was low before,  they would do the same this time too.  Nurses have a lot of autonomy in that place.  But, they couldn't authorize me to take Leukine again, so odds are very good that when I go in next week, I will not get chemo.  Which will push my end date back a week and into early April - my birthday.

Just what I wanted.

Worse, my reds are now quite low at 9.8.  If they get down to 9.0, I will need to have a blood transfusion.  Being super anemic  does explain why I've been breathless and tired.  I've been given the name of a liquid iron supplement to try to find - one that is apparently easy on damaged chemo guts which iron typically isn't - this is to build my red cells up to try to prevent the transfusion. But, according to the package directions, it takes 2 to 3 weeks to see improvement and 6 months to get the full effect.

The name of the supplement is Floradix.  Along with iron, it has: aqueous extracts from carrot, nettle worth, spinach, quitnch roots, angelica roots, fennel, ocean kelp, african mallow blossom and orange peel.

I think I'd rather just eat steak.

Wig Woes

I've made it through two days of work without crawling under my desk.  Although, I did need a three hour nap when I got home.  Work four hours, sleep three, that's the plan.

Worst part was how badly my head itched the entire time I was there, all from wearing a wig.  I'm used to being bald inside my house and wearing scarves out.  But, for work, I figured I'd actually dress up and put on hair.

I so wanted to be a wig queen. I'd planned to have a variety of wigs to go with different outfits. My thought, long before my hair fell out, was that if it was going to have to happen, I might as well have fun with it.  So before chemo, I went a little crazy and bought 7 or 8 hairpieces, foolishly purchased without the understanding that underneath the perfect styles and shiny colors, they are instruments of torture.

They don't tell you that ahead of time.  A typical description will say that their wig has a "woven weft construction that combines airy ventilation and a feeling of lightness, while giving you the confidence of having full coverage and a secure fit."

Wow, that sounds perfect.

Wait.

What is a "woven weft construction?"

Do you recall those 1960s lawn chairs?  They were made out of lightweight aluminum with a pastel-colored, two toned, three inch, plastic-based webbing structure across the back and bottom?  They, too, provided "airy ventilation."    You'd relax by the pool in one of those chairs, wearing your darling little bikini, and by the time you finished your soda, you had deeply quilted, raised patterns in your skin that would sting and itch for hours.

Well, the manufacturers of those chairs haven't gone out of business - they now make wigs.

Like those lawn chairs, the inside of the wig consists of a scar-inducing series of straps that go across the top of your head, with a cap in the center that the hair is sewn into.    At the base of your skull there is either velcro or hook and eye area so the wig cap can "give you the confidence of a secure fit."

To keep up with the summer theme, you get the same confidence of a secure fit with wigs as you do with that great little bikini you wore when you sat on those fabulous lawn chairs.  You know, the kind that were crocheted and the bikini bottom actually tied on each side?  You had to get it perfect which took a lot of juggling in front of the mirror.  You tied it loose on each side, and then tighter on the other - back and forth until it would stay on.  If you got one side tighter than the other, you ended up walking funny.  Tie it too loose and well, you could only be confident of a attracting new boyfriend.  Unfortunately, with no guarantee that he'd be a secure fit.

Wigs are the same - tighten it so it won't go awry if you need to scratch your forehead and you are guaranteeing yourself a migraine.  But, leave it comfortably loose, and with one sneeze it's on your lap.

Unfortunately, unlike the bikini example, any wig mishaps aren't going get you a new boyfriend. Nothing says "I'm not hot" like a lap full of woven weft constructed hair.

I have wigs that range in price from $5.00 to $150.00.  Expensive or cheap, they are all hot, scratchy and uncomfortable - they feel like they are made out of industrial strength burlap.

Now, maybe on Project Runway they can make something floaty and comfortable out of burlap, but Rene of Paris hasn't quite mastered that skill.


So that's me, back at work.  Exhausted, with a lawn chair strapped on my head.

Back to work

Tomorrow I will be going back to work on a part-time basis.  I'll go in on Monday, Tuesday and (probably) Thursday afternoons.  I would have liked to say I can come in mornings but it's impossible.  I need 12 hours of sleep a night at this point, and when I say need it, I mean I cannot function at all without it.  I simply can't get up - my body refuses.  So, I will go in about 11:30 to 12:00. 

I'm extremely fortunate in that I have an understanding boss and HR department. They are actually allowing me to come back a little early and accommodating a part-time schedule, which I understand they don't usually do. 

This should bring me joy, a step towards getting my life back to normal.  But I'm rather nervous because I'm not sure exactly how much I am physically up to.  The last thing I want to do is be unreliable.

The fatigue chemo brings on is hard to describe.  I woke up today at 10:30.  I was tired still, and still a bit queasy, but decided that I would leave the house.  I wanted to buy some ballet flats - all the better to sooth the neuropathic foot.  (I'm a heel junkie - that's going to have to change.)  Since my husband has been doing almost all of the grocery shopping, I thought I'd also go to the grocery store and give him a break and let him watch the super bowl.  So, I got dressed.

That act required a rest period.

I left my house at 2:00.  I had to sit down several times in the mall to catch my breath.   This, by the way, is a very tiny, dyiing mall, with only a Macy's, A Broadway Shoes and two or three little stores inside.  It's not like I was walking inside the Mall of America.  So, it was me and grandpa, sitting in the chairs in the middle of the store: one waiting for the energy to move and the other waiting for his wife to finish her shopping.

I bought my shoes and when it came time to pay, I actually leaned on the counter.

Honestly.  Elbows on it, head down, catching my breath.  Not being dramatic, not thinking about myself.  Just waiting to breathe and regain some strength before I realized how ridiculous that must have appeared.  I was dressed trendy and bewigged - on first glance I didn't look old, cancer-stricken and worn out.  But, what I didn't know was that waiting in line is energy-depleting..  The clerk joked with me that I must have had a hard day shopping and I agreed.  I didn't tell her that I'd been walking for all of 15 minutes.

I thought about skipping the grocery store but decided to soldier on.  I bought a rotisserie chicken, some tubbed mashed potatoes and some carrots - and asked for help to my car.  

I  now desperately need a nap.  I need to sleep like a marathon runner in the Dubai desert needs water - deeply, urgently and endlessly.

I've been awake 6 1/2 hours total.

This must be the chemo-induced fatigue everybody talks about.  It surrounds you like a fog.  Even simple things, like getting dressed, require rest.

So naturally, I'm concerned about my work productivity.  My job is a desk job so once I get there I should be okay.  But, it sometimes requires some low-level thinking, and I'm finding even that hard.  My memory is completely shot and I can't write a paragraph of this blog without forgetting a word I intended to use. Chemo-brain rears its ugly head.  (Thank goodness for tabbed browsing and thesaurus.com)  I get very confused at certain things, anything that requires memory or organization.

It will be nice to do something useful, and turn my focus to something aside from cancer. It will be comforting to have a place to go where a man in a white coat isn't asking me intrusive questions, or where somebody isn't putting an IV needle in my arm.   It will be nice to be in a place where everybody isn't focused on me, and where other people have problems too.   I'm looking forward to being there and seeing my coworkers again and trying out some normality. 

Naturally,  I fear I'm not going to be up to normality, as much as I'm ready for it.    But, over the years,  I've learned we often end up being able to do things that we originally thought we couldn't.  So, maybe going to work will be energizing for me. Maybe it won't be any more exhausting than being at home.

The one thing I do know - this too, shall pass. 

If not, and you need me, check under my desk.  I'll be taking a nap.


.

Taxotere vs Taxol

Because I was getting painful neuropathy in my hands and feet, my doctor decided to switch my chemo regimen half way through.  Instead of a large dose of Taxotere along with a side of Carboplatin every three weeks, I am now getting a smaller dose of Taxol weekly.  So far, I'll still keep my every three weeks "Carbo" schedule.

Wednesday, when I went in for my infusion and my nurse saw the new orders, she looked surprised.  I told her why I was being switched, and her surprise grew to shock.  "You are kidding me!  Taxol's number one side effect is neuropathy, much worse than Taxotere!"  It was my turn for shock, which she noticed because she want on to say, "Well, what do I know, I don't have a big ol' doctor brain."

Not exactly a confidence-inspiring moment.

Anyway, because Taxol can cause allergic reactions in some people, I was taken to the "high risk" room, meaning I couldn't sit with my chemo buddies Jeannette and Burt this week.  Neither of us were happy about that. 

My pre-meds have changed to prevent the possibility of allergic reaction.  Now, along with the steroid drip and anti-nausea meds, I also get IV Tagamet and IV Benedryl.  I wasn't happy about the benedryl, because the pills have made me hyper in the past.   I could just see myself sitting there, chained to an IV bag, body jittering and tense, rattling the IV pole and irritating everybody around me.   But, bendryl is different when it's in an IV.  It made me sleepy - even though they gave me a half-dose,  I was still drowsy for half hour or so and my tongue felt like it was made out of cotton..

I couldn't have talked with Jeannette and Burt anyway.

Aside from the different meds, the infusion went as usual.    Jeannette and Burt peeked in and waved good-bye when they left and as always, I was the last one there, staring at the clock, just as I did in school.

Tick tock.  Tick tock.  Drip.  Drip.  Drip.

Finally, released.  I drove home feeling okay but not hungry as I normally am.

Thursday I had my usual post-chemo feelings. It's hard to describe -- your body is kind of shut-down but you can function fine on a slow level - most think because you still have steroids in your system.  But, I wasn't hungry, and I had to force myself to eat some soup and drink my water.  I woke up at 10:00 a.m., napped from 4 to 6:30, and still went to bed at 10:30.  (Insomnia is completely gone by now.)

Then came Friday.  I was extremely tired and slept a lot and began experiencing nausea for the first time.  The hot flashes seem much, much worse and it's hard to imagine how that's possible,  I can just about heat our house with my body temperature alone.  I would melt a snow cave.  Plus, I'm achy, and that's new.

So, was the switch worth it?

The neuropathy came back.   My hands and feet are again tingly, but even more painful than before.  I'm having shooting pains in my hands.  Weirdly, my index finger feels feels like there is a thorn stuck in it.  I keep looking and trying to pull it out - but, there isn't anything to pull, nothing is there. It's just a nerve screaming at me.

I'm taking l-glutamine regularly in the hopes that it will help in the long-run.  Which is hard because now I have this chronic, low-level queasiness and the thought of swallowing it makes me kind of gulp.  Back to anti-nausea meds.

In the Taxol vs. Taxotere fight, so far, Taxotere wins.  I'm sorry I put my money on the wrong one.

Eight more weeks to go.  Drip. Drip. Drip.

Cancer Cliche #1: Shaving Heads in Support

You've all seen the movies. The poor woman, sick with cancer, bald from chemo, comes home from the hospital, eyes circled dark, and completely exhausted - only to see a group of her friends and family, standing there - bald. Heads shaved in support of her. This makes her smile and gives her energy to go on with her treatment. Seeing other people bald gives her the will to live.

In a recent movie, a bald teenage cancer patient who wants to go to a prom but is embarrassed by her head watches as her gorgeous mom, Cameron Diaz, shaves her head to encourage her to go, showing her support for her bald daughter. Then they go wig shopping because we know Cameron isn't going to walk around bald for a whole movie. I'm sure it was embarrassment enough that they cast her as the mom of a teen.

Naturally, being a fan of media and pop culture cliches, I've been expecting to come home any day to find friends and family with bald heads, shivering in the cold to support me.

But no. Not a head shaved in my honor.

I'm so depressed.

Does nobody love me?

Okay, my husband gets a pass, since he's already sporting a full head of male pattern baldness. But, what about my 23 year old son, with not only a mass of curly hair but also a beard and mustache? What about his girlfriend - she won't lose her sassy short curls in my honor? What about my 13 year old? Granted, he did cut it from his shoulder to his ears - but is that really enough? My sister still has all her luxurious, curly hair. How dare she? Why, they are practically flaunting all that hair in my face!

A rite of cancer isn't happening for me, and I'm disturbed by that.

Or, am I?

My husband has taken over many of my household chores and has put up with more than he ever expected when he married a young thing like me, 11 years his junior.. My son has to endure his bald mom in scarves picking him up from school everyday, and we know how well middle school kids tolerate differences. I have had to skip an out-of-town contest he was in because of a chemo treatment. He never complains and his grades are still straight As - isn't that support? My oldest picked up my youngest from school daily when I was recovering from surgery and hospitalized - that is support I couldn't have done without. Friends have sent me thoughtful gifts and several meals were delivered. And, I have received wonderful cards and messages of encouragement from all over. It's time to go back to work, and my employer is even going to accommodate my grueling medical schedule, which they don't have to do.

Having any of them be bald wouldn't have made any of these things any better.

If you are considering shaving your head in support of your loved one with cancer, keep this in mind: it won't make chemo go any faster, it won't remove scars,  it won't make the cancer patient's hair grow back, and it won't change their prognosis.

In the secret places we cancer patients talk about this kind of thing, the consensus is by most of us that we don't want people shaving their heads to support us.  As for me, most of the time, I'm not even thinking about being bald and suddenly seeing my kid's bald head would startle me back into thinking "Oh, yeah, I have cancer."

Personally, I like looking at my older son's lovely curls and his girlfriend's gorgeous cut, and I love watching my teen's hair start to curl softly around the edges. I would be deprived of that.

Not to mention, if I had some sort of bald fetish, I know where to get my jollies: I see a wide assortment of bald heads weekly in the infusion room.

My advice: before you take that cliched step of shaving your head in support of somebody with cancer, think about exactly what kind of support that will really provide. Is it something they will find touching? Are you sure?  Or, is it an empty gesture in lieu of actual valuable help they will need, such as  meals, phone calls, help with rides, and house cleaning?

If you are certain you want to do this,  at least grow you hair out ten inches first, and then donate it to Locks of Love. That shows real support to children with cancer.

Otherwise, my advice is to leave this silly cliche in the movies, and to Cameron Diaz, where it belongs.

Chemo Psychology

All of us on chemo count down to when it ends. We celebrate our halfway marks and rejoice when it's over. Even those of us on herceptin, and who still have 9 more months of infusions feel the same way about our chemo dates - we set them as mile-markers on the road to the end of our treatment. Each one is a step closer to being done with cancer and getting back to our lives.

Three weeks ago, I had reached the halfway point. Three chemos down, three to go! I'm halfway home! At least one thing will be completely finished in this cancer game. I knew that the last three would be more physically disabling then the first three - but after the third, I would be over the hump. The finish line was ahead of me.

Then, neuropathy got bad enough, early enough in treatment so that the doctor didn't want to push through. My chemo regimen changed. Instead of having chemo every three weeks, I'll get a weekly dose for nine more weeks.

Instead of having three chemos to go, I now have nine.

I'm not halfway there after all.

Intellectually, I know it all comes out the same in the end. My end date will be the same, likely March 31. The lower doses more often may even be physically easier on me. I go in weekly for herceptin anyway, so it won't change my plans for Wednesdays.

But the fact remains that I am no longer halfway done with chemo. Instead of spending three more six hour days in the infusion room, I now have nine more five hour days. Not quite the trade-off I'd hoped for.

Plus, this new regimen means extra steroids, extra nausea meds, extra sleeping meds, lots more water drinking/high fiber foods, etc. Instead of every three weeks, I have to do this weekly.

Today as I get ready to leave, I should be saying, "Only two more left after today" but instead, I am saying, "I have 9 more treatments to go."

Psychologically, the road seems to have gotten a little longer. I'll have to reset my markers.

After today, I'll only have 8 treatments left. After next week, I'll be halfway there.

Free Stuff for Breast Cancer Patients

Yeah, cancer sucks.

But, there is always a silver lining - you can get free stuff!

Who doesn't like that?

There are many companies that generously offer free services to breast patients. The items offered range from headwear to makeup to classes to gas cards to informational booklets.

Being the super kind and wonderful breast cancer patient that I am, I have compiled a list for you so you can get your very own freebies.

In return, when you do your Amazon shopping, please come here and use my search box to find your items. I want free stuff too! ------->

The American Cancer Society has a lot of help for cancer patients, from classes to goodies. You can get gas mileage reimbursement if you have to travel a certain number of miles per year medical for appointments, and they will send you a $25.00 card to get started. You can get either a free wig or a $75.00 reimbursement on a wig, purchased from certain shops that they will recommend. They offer numerous support classes, such as nutrition for the cancer patient, and many others. They also offer rides for those who can't drive. They are a wonderful resource and kind on the phone too.

My favorite was the Look Good, Feel Better class. You sit with a group of ladies who all have cancer and are in various stages of chemo. A licensed esthetician teaches you to put on makeup to hide the changes chemo will cause, and you also walk out with an amazing goodie bag with tons of free (and name-brand) makeup. (One thing I hadn't thought of - your old makeup has bacteria on it - and when your white counts are low you can get an infection from it. So, this new makeup is not only fun but necessary for your health.) They also had some free hats at the class I took. Check out the website to locate one in your area - it's a national offering.

France Luxe will give breast cancer patients a gorgeous silk scarf of their choosing. Click on good wishes on the top right of the site to request one. The CEO herself will contact you back. They ship free inside the USA and internationally if you cover the costs. These scarves retail for $70.00 so it's a generous offering. If you aren't a cancer patient, buy something from them because they do good work.

Heavenly Hats will send you a package of hats. Keep in mind, these are donated - some will work for your style and some may not but heck, it's free. It was started by a kid and has grown to be a wonderful service for those who have lost their hair.

Fill a Heart offers a free, heart-shaped pillow which comes in very handy after a mastectomy.

Awesome Breast Forms  will send a free crocheted or knitted breast form - this is especially nice and light after recent surgery.

If you have had a mastectomy and lymph surgery, you are forever at risk for lymphodema. You cannot have blood pressure taken or blood drawn from that arm. If you are going into the hospital and want to remind medical personal of the risks, you can get a free bracelet from ReidSleeve.com

The Livestrong Foundation offers free downloadable materials, as well as guidebook that will help you navigate your cancer experience. You pay for shipping on the book.

Cleaning for a Reason will provide three free housecleaning services for people undergoing chemotherapy. You have to fax a note from your doctor. May be overbooked in some areas, (like mine) but is a very necessary service for those who can take advantage.

People undergoing active chemotherapy can receive little treats from the Chemo Angels. There is an application process, and you can sign up for a family member to surprise them.

Casting for Recovery is a fabulous organization which offers weekend retreats for breast cancer patients in all stages of survival and teaches them fly fishing. Its a great bonding weekend where you have a blast, learn a new skill, and are spoiled by the volunteers who put it together. They offer retreats around the country and some overseas.

Little Pink Houses of Hope offers free retreats to breast cancer patients and their families on specific dates.  They have places from the Carribean to Lake Tahoe.  Often, you will be invited to go on short notice.  Many have told me they loved their retreat and everything was perfect.

There are numerous local outlets that offer items to smooth your cancer experience. My hospital has an outreach program with a nurse who called me monthly to make sure I was fine and if I need anything, and who delivered a bag of goodies to me in the hospital. Your doctor will put you in touch with this group if it exists in your area.

There is also more functional help for those who may end up in financial distress because of cancer treatment. The National Institute for Health and the American Cancer Society is a great place to start finding these grants. They offer financial help to pay for medication, travel, medical costs, even rent.

I have also found that most wig shops will automatically offer a 10 to 20% discount for chemotherapy patients. If you are buying a wig while you still have hair, make sure you ask.

If you know of any national companies that offer a free item to a cancer patient, feel free to post it in the comments and I'll add it to my list.

Loathing Leukine

My granulocytes have been seriously low. Normal is 2.0 to 7.8 and mine have been 0.2.

No wonder I now have chronic eye infections.

That means before chemo I have to take a granulocyte stimulating drug called Leukine. Most breast cancer patients get neupogen or neulasta, but I get leukine. It does the same thing so I'm not sure why this is my doctor's favorite, but they all cause unpleasant side-effects.

The drug has been waiting for me in my fridge, staring at me sadistically.

Last Wednesday I was told to take it once a day for three days. This is an injection you give yourself subcutaneously, which is no problem for me as I have been giving myself Imitrex injections for more than 20 years.

The side effects from this drug are awful. Way worse than chemo, which are mostly just fatigue and a vague dysfunction of your bodily systems.

Leukine, on the other hand, causes a major migraine-style headache that, unlike regular migraines which manifest behind the eye, start at the base of the skull. It also causes me a seriously stiff neck, to the point that I can't turn my head at all. It causes all-over bone pain and volcano-like heartburn. And, it exacerbates the already present chemo-related fatigue.

The good news is on the first night I took it, I slept 15 hours. Not great sleep as my head was throbbing violently in my dreams, but it was sleep nonetheless. No sleeping drugs necessary. The other good thing is when you stop taking it the pain stops. I took it at 6:00 p.m. on Wednesday through Friday, and by Saturday afternoon I was head and neck pain free.

My biggest fear is now that I'm going to a weekly chemo schedule, I'll have to take it more often.

That stuff is killer. I can function at a minimal level on chemo. I can't function at all on leukine. My husband's car was stolen on Day 2 of my leukine injection and I was not even able to help him by driving him to the rental car place. I just couldn't function and was in bed until 2:00 p.m. He's been so helpful to me over this experience that I hated not being able to help him the one time he needed me to.

You want to will your body to do things, to function normally, but sometimes - it just doesn't work, no matter how much will you have.

I loathe Leukine.