Coming Back

Has it really been that long since my last post?  I think it's because once I was done, I wanted to be DONE!  I didn't want to think about cancer any more.  I didn't want to talk about it.  I didn't want to be around anything to do with it.  There is a major creep factor with cancer.  At least for me.

Now that I have more perspective, I can own this experience better.  I am learning to integrate the surgeries, chemo, etc., into how I view my life.  I have to tell you, it's a lot easier do do that now that my hair is coming back!

I have been able to work out regularly the past few weeks and I have even started teaching again.  I have a yoga/Pilates blend class that I teach for Spokane Parks and Rec and I'm subbing at the YMCA.  I'm back to taking my bellydance class on Mondays, too.  It's good to feel like my body can respond to what I want to do.

The weird thing that happened between weeks 7 and 8 (after chemo) is that my eyebrows and eyelashes fell out.  They say it has nothing to do with chemo, but I don't know.  I'm having my thyroid tested tomorrow.  I guess we'll see.

I also easily tire.  And even one glass of wine gives me a hangover.  My acupuncturist says that it will take at least a year, possibly longer, to stabilize my liver and other organs.  Given my competitive nature, I'm going to try for six months!  (lol)

I had my tumor tested for Lynch Syndrome and it came back negative.  That's good news for my boys, siblings and nieces and nephews.  That means that my cancer and my sister's don't have that particular genetic tie.  We all still have to get our colonoscopies every 5 years and regular pelvic exams, but the Sword of Damocles isn't hanging over our heads.

My hair is about 1/2 inch long and salt and pepper colored.  I have a few white hairs that are about an inch long.  These are the few that actually continued to grow during chemo.  The result is that my head looks like some exotic pelt that the nouveau riche like to settle over their shoulders.  The biggest difference here is that people don't shrink away from me.  But I sometimes catch this odd look on their faces as if they were thinking, "Why would anyone cut their hair that short."  It's hilarious!

I'm off to prepare for a Pilates class I'm subbing for today!  The sky is blue, the trees are ruffling their leaves in the breeze, the air is warm.  It's a good day to be alive!

I'm Done!

Chemo #4 is over and I'm done!  Words cannot express how happy I am, even though I'm still pretty sick from the chemicals and will feel the effects for the next couple of weeks.

It was touch and go whether or not I'd be able to do it because the week prior to my chemo appt., my white count dipped to .8 on a scale whose lowest number should be 1.5, so my doc thought I'd have to wait another week.  That would have been out of whack since my sister, Carma, was set to arrive from Maryland to take care of me and the boys during spring break/chemo #4.  Fortunately, I see a wonderful acupuncturist, Colleen Smith at Point of Origin, and when I returned to Cancer Care NW last Wednesday, my white count was 3.3.

The worst part was trying to get an IV started--my veins are fried from the past rounds.  But, after 3 nurses and 7 now-bruised entry sites on my arms, one got started in my hand.  And let me tell you an IV in your hand is most unpleasant.  Carma came and sat with me the entire time without fainting or throwing up.  That was a considerable sacrifice on her part and I am very blessed to have her in my life.  She left this moring to get back to her family in Maryland in time for Easter.

Now I just have to wait through the weeks of damage, pray that I retain my eyebrows/eyelashes, and then I can begin to regrow all the hair I've lost.  And start dancing, doing yoga & Pilates again.  And start having an occasional glass of wine again.  

Life is sweet.  And spring seems to finally be here.

Counting the Costs

There seems to be some type of structure to this whole chemo thing.  

The first 2 days I don't feel anything because I'm so full of steroids that how I feel doesn't match the cadaverous-looking person staring back at me in the mirror.  Then the muscle and bone pains come.  If they get too bad, there's always oxycodone, but driving is a no-no.

The first let's call it a "week" (although it could be more or less than 7 days) I sleep a lot, sometimes 12 hours a day, and feel nauseous and don't want to get up off the couch.  I know when I'm getting into the next "week" because I start getting cabin fever.

The second "week" I stop sleeping more than 4-5 hours a night.  I get nosebleeds and hemhorroids (TMI, I know) and breathe heavily just going up the stairs.  I start thinking about walking, doing yoga and writing in my blog.  The informative word here is "thinking."  I constantly check my scalp to see if 1) any more hairlets are falling out, and 2) any more hairlets are growing.  I check in the shower to see if I still don't need to shave my pits or bikini area.  (We're all friends here, aren't we?)  I can eat more regularly.

The third "week" I begin to dread the coming chemo.  I obsess about what's going on with those chemicals in my body.  I worry about what will (happily) be temporary and what will end up being permanent.  I fret about time and getting things done in preparation for the coming "week #1."  I worry that I'm not nice enough to my kids or giving them enough attention, structure, values, information, love, fun, etc.

And with each chemo session, something new comes up.  After the first one, obviously, there's the loss of hair and depression that goes with it.  I also noticed a terrible smell a few days after, coming from me.  After the second I developed folliculitis, a fancy name for ingrown hairs that is very painful.  Some of them swell up to the size of quarters.  

After this third one I noticed a huge increase in chemo brain.  I joked about it before, but now it's a real thing.  I forget people's faces and names, what I was talking about, how to spell things.  I remind myself of my father after his stroke when he could explain what he was looking for, describe what it looked like and its function, but he couldn't come up with the name.   I have to be really careful when I keyboard because I make lots of mistakes.  I lose my balance a lot and I've fallen a couple of times.  My skin also feels strange, as if there's a layer of water or something between my skin and my nerves.  And my taste has been affected.  Nothing tastes right.  Water tastes like metal as does coffee and chocolate.  Things that have a really sharp flavor like mustard are easier to get down than bland things.  I can drink diet 7-up and water if it has lime in it.  Licorice is the only thing that tastes "good."  And my teeth hurt.  There's a huge food trap that's opened up on my upper left and everything gets caught in it.  If it doesn't get flossed before I eat again, it's very painful.

I feel like I've gone from seeing cancer as the enemy to seeing chemo as the enemy.  I worry that the "cure" is as bad as the disease.  And what kind of damage am I doing to myself by having it?  I really understand how people can say that they'd never do it again.  If this comes back, I probably would go through it again, but I can understand how there are some who won't.  Chemo is like its own disease, a disease of little losses.  Well, some of them are big, like hair.  But it seems like each time you get chemo, you lose something else. 

Here are the benefits of chemo:  

I haven't had to wax my mustache or pluck my eyebrows or chin hair  since February

Every time I go grocery shopping, they fall all over themselves helping me to the car

I have a bunch of fancy, new, long scarves to play with later

I don't have to put on or take off mascara every day

I've saved money on salon days

I don't feel guilty for parking as close to something as I can get

People are nice to me even when I'm grouchy

I'm sure there are others, but I need to go eat some licorice now.

3 Down, 1 to Go

I got round #3 on Wednesday, 3/11.  I look like a pincushion since it took 3 sticks to just get a blood sample and 2 tries to get the IV in.  I am told that the chemicals harden your veins and make it more difficult to get the needles in.  It's a good thing that I only have 1 more to go.  Of course, I'm told this situation will last a couple of years.

I've been sicker this time, too.  And I'm beginning to lose my balance over really stupid things like bending over to attach the dog's leash, or stepping on uneven ground.  I went down in a heap in front of the boys' school a week ago--scared Mickey to death.

My little silver hairs that stubbornly clung to my skull have now begun to fall out.  My eyebrows and eyelashes have begun to thin, although I'm using a special cancer conditioner on them that I believe is helping.  In fact, only my right brow was aching in the same way that my hair hurt before it fell out and I told Mickey that the only worse thing than losing my eyebrows would be to lose only one.  He said if that happened, he'd go out and get me a pirate patch for my eye.  But then I'd need a shirt that said,  "Fuck Canc-aarrgh!"  Might get a few raised eyebrows at school events.

I have had a couple of income streams that have opened to me with the onset of baldness.  I was thinking I could impersonate a Buddhist nun and stand silently on the corner holding my rice bowl.  But then my friend, Ann, said she could whip up some orange robes for me and I could dance and sing and sell books in the airport.  Hare!  Both good ideas, don't you think?

We tried to get to Seattle last weekend before my Wednesday chemo so we could have a little fun before the next round of yuck.  We got all the way to Ellensburg (150 miles) before we got turned around for a freak snowstorm in the Cascades.  We could have made it over, but we wouldn't have made it back.  Turns out it was a good thing though because Christian started looking peaked and had a fever by that night.  He kept this little fever (100-101) until he started a dry cough on Wednesday.  I put him on albuterol inhaler, but he said he wasn't having a hard time breathing and his lungs didn't hurt.  Dad took him to the pediatrician on Thursday.  She couldn't hear anything in his lungs, wasn't worried, but sent him downstairs for an x-ray anyhow.  Turns out one of his lungs was completely blocked by fluid and he should have been put into the hospital!  Talk about your parenting guiltmare!  Guess we won't be dusting off a spot on the mantle for that parent of the year award. Based on Christian's behavior, the pediatrician sent him home with drugs and put him on close watch all night long.  Poor Mickey.  The chemo knocks me out for about 12 hours a night for the first week.  He was charged with getting up to nebulize Chris every 2 hours.  And the next day, he looked like it.  It's Saturday today and we're still keeping a close eye on him for any indication that he'll have to go "in" as they say.

Most of the loads of snow we got this winter have melted except for the giant piles accumulated via shoveled walks and driveways.  It's still dreary, cold and now rainy.  But I don't mind.  It would drive me crazy to feel a warm wind blow, see flowers bloom and hear bird chirping, "Joan, come out and play with me,"  all while I'm stuck in a nauseous, bald heap on the couch.  I'll have that to look forward to in April anyway.

We did have some damage this winter.  The car port next to the garage (that I like to refer as a lean-to) had so much snow weight on it that a number of studs had to be replaced so it would be safe to park the car under it.  Paul is our excellent contractor out there taking care of it right now.  Then the flashing in the kitchen failed and we  had water coming in.  Paul handled that, too.  Then our outdoor dining table (metal) got bent in half from the weight of the storm.  That's a tosser.  And a snow plow hit the Cruiser, but the city won't cover it because we don't know exactly what day it happened.  There was so much snow that when the plows went by, they created berms that were 6-7 feet tall and Mickey and the boys had to go shovel out to 1) find the cars (remember the carport was kaput) and 2) create a parking space that was legal and safe.  I was post-op and absolutely no help.  So most of the work had to be done on the weekends and who knows what day the actual damage occurred.  It happened all over Spokane, though.

Before I had this last round of chemo, I wasn't sure I could make it to round 4.  I have a lot of worries about what permanent damage I'm courting by using this poison to potentially take care of any cancer that's left.  I'm noticing brain issues, too.  I can't remember things that I should.  Or I have memories of things that happened and I'm not sure if they're real or just a dream.  

Even so, I think round 4 will be okay.  Carma will be here to tell me jokes and take the boys on outings (it's their spring break.)  Of course, she is my hero if only for the chocolate she sends each week, but also for the candles and notecards, etc.  I have ordered a couple of skull caps made of cotton from a lady on the internet.  Right now I can wear my 1 cotton one with acrylic or microsuede over to keep warm.  My head is so sensitive that only cotton will do to be next to the scalp and soon I won't need the second caps for warmth.  But thanks to all who made them:  Mom, Judy, Holy Rosary.  They are much appreciated.  And thanks to Gretchen for the prayer shawl--it comes with me to chemo.  And thanks to Quisenberry Marketing & Design and Unity Church of Spokane for all the dinners and pick-me-ups.  And thanks to the vast numbers of you out there who have sent cards and prayed for me and my family.  Thanks Phyllis for the Lance Armstrong notebook.  Thanks Linda for the card.  But I still miss my hair.  And the Terhars have been the best friends we could ever have asked for--lovin' every cookie and goody you've sent--also keeping Jesse organized!  And for Denise for calling and making me laugh.  

If I've forgotten to thank you, I apologize and give you permission to blame it on my chemo brain!

Halfway There

Got my second treatment last Wednesday and it went pretty much as expected.  As I read this back I think, "Well, now, that's not really the case."  I didn't know what to expect.  I guess I can say that it was a similar experience to the first time.  I'm managing the neuralgia and myalgia better this time with ibuprofen--a miracle drug I discovered with endometriosis.  My nausea and tiredness is worse, but not significant or debilitating.  I finally used one of the $22 per pill nausea drugs so that I could make it through Alvin Ailey II--my wonderful Christmas gift from my fabulous husband who certainly knows the way to my heart.

Now I can say that I'm halfway done--and not in the turkey in the oven way, either.  As you've probably noted on my sidebar, I lost all my hair last weekend.  Well, not all.  I still had the stubble from the last time I shaved my legs.  It wasn't getting any longer and it wasn't falling out, so I decided to shave it off and see what happens.  Jury's still out.  As far as my flowing tresses (hah) the most bizarre thing is that the only hair on my head that is regrowing is the silver hair.  And the only chin hair that is coming back is--you guessed it--silver.  What the hell is that all about?

I'd like to pretend that I'm taking this well, but that would be a lie.  I actually thought I might be one of those rare, lucky people who didn't lose her hair.  But it became apparent that something was happening when my scalp ached.  I could feel each individual hair on my head hurting.  It hurt when I laid down to sleep.  It hurt to lean against the headrest in the car.  It hurt to run my fingers through it.  I understand the way a cat feels when you rub it from its tail towards its head.  It just feels wrong.

Then, I noticed a couple more hairs than usual when I styled it using my fingers.  Then the next day  there were more hairs getting stuck between my fingers.  It never really fell out in clumps like a lot of people describe.  Just more and more would fall out from all over, but only when I pulled on it.  I never lost any on my pillow at night, but when I showered it would come down like rain.  I lost the vast majority of it in one day, Saturday, February 14.  And Happy Lovers Day to you, Joan Magnelli.  My hair had become so thin by that evening that there was no point in keeping it any longer.  I had Mickey shave it the next day.

I cried buckets and buckets.  I huddled under the covers and wailed.  I tried to be reasonable and intellectual but found out just how emotional I am about this.  I have a friend who has been through both brain and testicular cancer.  He has what he describes as a trapdoor in his skull where they removed the brain tumor.  He hangs to the left (or is it the right?)  But of all his experiences he says that losing his hair was the worst.  

The hardest part of being bald is that I have lost my privacy.  While I had a great do, I could choose whom I told about the cancer.  But without it, I have become a marked woman.  Every bloody body walking down the street knows what I'm going through.  I can feel their eyes drilling holes in the back of my head when I stop in at Starbucks.   I catch their hastily averted eyes in the grocery store.  In short, I feel like a freak.

I know that inside I'm still the same me and it will grow back, yada, yada.  But I tell you, those French people who shaved the heads of the women who consorted with the German officers during WWII knew what they were doing.  It's odd how losing your hair in this way feels shameful and dehumanizing.  Wish I could put a more positive spin on this one, but there you have it.  And I thought I was prepared for it--had my hats and wigs, etc.  But now that it's happened, it feels like the worst thing that's ever happened to me.

But the good news is that I still have my brows and lashes.  For now, anyway.

CA125

Got terrific news last night.  At first I didn't understand the significance of it, even though my nurse, Gina, tried to explain it.  This morning my acupuncturist, Colleen Smith--wonderful and knowlegable, made me realize how good it is.  I'm going to explain in a long, drawn-out way, so I hope you won't be bored.

In ovarian cancer, there is a marker called CA125, for which they test your blood.  It measures the antigen a body makes in response to ovarian cancer.  The normal range is from 0-35.  At the end of December, after both surgeries, my CA125 was 175.  This means that even though the cancerous tumor had been removed 1-1/2 months prior, my body was still fighting the presence of cancer somewhere inside.  

At the end of January, even before my first chemo treatment, my CA125 was measured again and was--duh ta duh--11!  Yes, 11.  As in between 10 and 12!  That means that my body's immune system kicked in and kicked out the cancer.  And I have no doubt that it was supported and strengthened by the acupuncture I began the first of January.  And it helps that I'm now eating almost all organic, too!

And, yes, I am still going to finish out my 3 chemo treatments.  And afterwards I will, probably for the rest of my long and exciting life, watch those CA125 numbers.  But I feel so grateful for my strong, healthy body that is performing exactly the way God designed it to do.  

I have wonderful photos for all of you who participated in the "wear purple for Joan's birthday."  Thanks so much for all those great pix.  I'm trying to figure out how to get them on the website--or at least put the link in to the gallery.

I also have pictures of the great haircut.  I have received many compliments from this very short style.  I keep catching glimpses of myself in mirrors or reflected off windows and I immediately think, "Who is that boy?"  But I'm slowly getting used to it.  The other day when I was doing laundry, every time I'd lean over the washing machine, I'd reach up to flip my imaginary locks back over my shoulder.  It reminds me of the "phantom limb" theory that tells of amputees still feeling pain in their missing parts.  But I was missing my hair getting in the way.  And then I realized something embarrassing.  I am a hair flipper!  OMG!  The boys like the new style.  They say I look like Aunt Carma and Aunt Denise.

I have begun to experience something called chemo brain.  It's sort of like pregnancy brain and nursing brain.  I'll start going somewhere and then forget what I'm in the middle of.  This morning I forgot to take Elka to the groomer.  Now I have to wait until Tuesday.  And she stinks--she rolled in poop.  Yuck.  Jesse tried to clean her up, but she's a wiggler.  Better to let the professionals handle it.

Hope you're all well and enjoying life.  I know I am!

One Down

I'm 25% finished with chemo--yay!  So far no terrible side effects except for neuropenia--a tingling under the skin that feels like a part of you has fallen asleep and is waking up to the blood rush.  It was a little weird to feel it in my face as I was falling asleep last night, but it passed.

They give you benedryl and an anti-anxiety/anti-nausea med in the IV before they give you the chemo.  So, you feel pretty loopy before it begins and I've found the most important thing to do is to snag a chair directly in front of the tv so you get to control the remote.  After all, most of the patients were in and out quicker than me, so longevity equals priority in my book.  That's an extension on Darwin's theory of survival in case you were wondering.

A lady in the chair next to mine was on her 7th treatment for ovarian cancer.  She has one more to go and I imagine I'll see her next time.  She is stage 3 and they get about a 20% chance of survival to 5 years, but she's very positive and we all know how that helps.  2 people had their last chemo yesterday and the nurses gather round them, blowing bubbles and playing songs like "We are the champions of the World."  The grins were huge.

I have no nausea and the nurse said that the anti-nausea drug in the IV should last about 3 days.  I don't have a metallic taste, either (Carbo-platin, one of the drugs is based on platinum,) but maybe that's an accumulated effect.

I'm getting my hair cut on Saturday afternoon.  They say that your hair begins to fall out 10-12 days after chemo and takes a week to completely fall out.  Both drugs, Taxol and Carbo-platin, cause hair loss so I have hope in the face of overwhelming odds that I might be one of the lucky ones.  Another lady next to me was there for colon cancer and hadn't lost her hair in all her treatments.  Her drug is related to Taxol, so maybe that has something to do with it.

Oh, and today is my birthday.  Jesse is back to school today and now Christian is down with it.  Last year we had a terrible snow storm right before my birthday and it sealed us off--no presents or cake!  Don't think I don't let the men of my house ever forget that!  Now when asked how old I am I can say that I'm celebrating the 32nd anniversary of my 29th year.  So, if you can't do math, just go with the 29.  I prefer it that way.

I've put a beef stew in the crock pot and I'm going to find a decent bakery for some chocolatey decadence birthday cake.  But first, I must get out of these jammies!