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.