Watch Me Breathe

My mom's good friend of many years made me a beautiful quilt.  She sent it with a note encouraging my determination and suggesting I use the quilt to curl up under with Luka and a good story, to hide under on bad days, and to keep nearby when I wish to be warm.  

I received this quilt about five days ago.  Yesterday, I received news from my mom, that her good friend - the quiltmaker - a wonderful woman I have known for many years - lost her son.  Eddie was 36 (my age) and died suddenly and unexpectedly in his sleep from an apparent blood clot in his heart.  When we were kids, Eddie had leukemia.  He was a longtime cancer survivor, a father, and a newlywed.

Yesterday, after I heard the news of Eddie's death, I went to yoga class.  When I sat down and put my hands to heart in the beginning of practice,  I dedicated my strength, my fight, my determination to Eddie and his family.  Because they will need these things to get through this and because this life is not fair.  And you can give me all the talk about things happening for a reason and about God being Good and about forgiving disease and illness and loving disease and illness for showing us the "way," but it still is not fair. 

Cancer is not fair.  It is not fair that Eddie had  to endure leukemia when he was a child and then had his adulthood stopped short because of an unexpected blood clot.  Now his own child will grow up without a father.  It is not fair that my little cousin Sammy has to go have chemo instead of going to school.  It's not fair that I am afraid to eat a cookie because I think I will die.

At yoga, every time a took a breath, I pictured this cancer popping and disappearing and I breathed as deeply as I could; so deep that it hurt my chest.  I focused on my breath and the oxygen moving into my cells.  Cancer does not like oxygen.  Cancer is not my friend so I will give cancer lots and lots of oxygen.

The pose of the month is the handstand.  It is a good pose for strengthening shoulder muscles. Since my left shoulder has been aching for about a month- with the tumor in my lung pushing through the ribs in my back- I work extra hard at my handstand.  I want to build my shoulder muscle to push the tumor back.  I refuse to let it win.  

My favorite pose is the humble warrior.  I held this pose for a long time and kept holding it while everyone else had already moved on to modified cobra and downward dog.

The other night, while I was on my way home from Scott's show at the Langano Lounge, I heard a song on public radio that inspired me to pull over and listen more closely.  The music was acoustic, with some guitars and drums, and the lyrics were sung in a perfectly angelic harmony between a man and a woman.  The words I was drawn to were sung over and over.  "Break me open; watch me breathe." 

The odds are not really with me.  And I am aware of this.  Tucked back into the little attic in my brain, there lies the notion that this is a very large dragon and I am a humble warrior with a rather small shield.  But I am dedicating this fight to everyone who has ever had to endure the battle with the dragon.  To Eddie and his family.  To Sammy.  To Luka and Scott.  To Myself.  

Break me open.  Watch me breathe.

The Hair

I have never been particularly fond of my hair.  It has been described as thin, fine, mousy, dishwater blonde.  I don't care for any of those particular adjectives.  As a Leo, I maintain a certain exploded version of vanity that has in the past involved lots of mirror looking and hairspray.  In high school I had lots of spiral perms.  And highlights.  Leos - you know lions, manes, etc- are known for being really into their hair.  Not that I'm Miss Horoscope Believer, but I'm just sayin.  I've worked on the vanity thing over the years and toned it way down.  With it being a deadly sin and all, I figured it was best to get rid of some mirrors.

Anyway, today my hair started falling out.  I knew it would happen and I'm not particularly upset about it.  It is weird, though.  I was sitting at the record store and I twirled a bit at the ends of my hair as I sometimes do and a bunch of strands came out in my hand.  It could not be described as a clump, but definitely a bunch of hair.  Like 20 strands or so.   

I called my friend Lu.  Lu works at the Salon next to our record shop.  We had talked about this moment - the hair falling out moment - and decided it would be best to shave my head when it started happening.  So I called her up.  

"Lu."

"Yes, Julie."

"It's starting to come out.  My hair."  

"Oh shit."

Up until Lu said oh shit, this moment was a little bit like telling someone your going into labor.  - It's happening.  What should we do?

So I told Lu I might need to go ahead and shave it in the next couple of days.  She said, "Dude I'll come shave that shit right now."  Did I mention that Lu is cute as a doe, sweet as almond milk and funny like a fox?

Since I want to explain to Luka what is happening with the Hair, I will wait till tomorrow or Tuesday to shave it off.  She is skiing today at Mt. Hood with Scott and I don't want her to come home to bald mom.  When I told her that the medicine I'm taking would make my hair fall out, she didn't want to talk about it at first and then she turned to me and said, "It might be weird to look at you.  With no hair."

The great thing about Gilly's Salon being next door is that those ladies own things like wigs and some of those ladies, like Emie, own like a hundred wigs.   I could wear a different one everyday.  (Right, Emie?)  Or I could wear beautiful silken scarves that will be prettier than my hair anyway and I can still look in the mirror and be a little bit vain.

With cancer, it always comes down to the the hair.  I won't miss it so much as I will miss my life with hair.  Being bald is the cancer signal and from here on out, I won't be so incognito with my damn ugly mutating cells.  People will see my pretty scarf and know I am sick.  

They won't know if I am wearing a cute pixie cut blonde wig, I guess though.  Anyone got one of those?  Also, I've heard some people's hair grows back different, like thicker and curly sometimes.  Maybe mine will grow back into a cute blonde pixie cut.  I'm just sayin.

Opening Jars and Pulling Up Tights

I don't like having to ask my husband to open jars for me.  It somehow makes me feel defeated, as though I've been working my whole life to open jars and now I have to hand them over every time I want some almond butter.  When I ask my mom to open something, it doesn't feel as defeating, but more like I'm four.

Neuropathy is a side effect of the chemo.  I first noticed it when opening a jar.  When Luka was getting dressed for the bunny party I had trouble helping her with her tights.  She stepped into the feet and normally I help her inch the tights up, but my fingers wouldn't close together properly and kept slipping off the tights without pulling them up.  Luka did not get frustrated.  She laughed and laughed.  And hugged my head.  Five year olds must understand better than anyone how it feels when you want your hands to do something that they can't do.

Here's the good thing:  I saw a naturopath, who is trained in Chinese Medicine and acupuncture, at the Cancer Center.  I saw Dr. C on Monday and the neuropathy is already better. (today is Thursday).  We talked for about an hour.  He helped me figure out good diet choices and the best supplements to take during treatment to reduce side effects and enhance the chemo power.  Most of the supplements I had already been taking, but he recommended  L-Glutamine Powder, 6-8 teaspoons a day, to help with nausea and my good buddy neuropathy.

I also got some acupuncture which left me feeling immediately refreshed.  I have been opening jars ever since.

The weird thing:  Getting side effects down means they can hit me with higher doses of chemo.

The funny thing:  (this doesn't have to do with anything.  it's just funny).  My mom was washing chicken the other day in the kitchen.  Luka came in and wanted to help.  She wanted to touch the raw chicken.  Scott and I always let her help in the kitchen, (well most of the time) but we don't let her touch raw meat.  So when Gamma told her she could help  with something else, but that she couldn't help with the chicken, Luka ran out of the room crying in a very dramatic way and yelling, "You NEVer let me touch raw chicken!!"

If anyone has any jars they want me to open, let me know.  Pickles, jam, sauerkraut. . .

The Things People Do

They play Uno with my 5 year old daughter.  They send gift cards for the local organic grocery from across the country.  They send me emails.  When I don't respond, they email me again. They clean my kitchen and bathroom cabinets(!), carefully fix my screen door, and tidy up my front stoop.  They make me soup and bring it over in jars with embroidered tops and labels like "love soup."  They put me on prayer lists.  They give me cards to read for my plane ride. They move from law school in  St. Louis to be a visiting student at the local law school.  They come over and make me juice.  They add beets to the juice.  And cucumbers.  They collaborate and give me gift cards to steam saunas.  They call me.  When I don't call back, they call me again.   They bring me prayer shawls.  They encourage me to keep writing.  They send me funny cards and pictures.  They tell me stories of themselves, people they know, people with strength who have been through this, beat this, lived to tell.  They give me magazines.   They send necklaces that say "believe in miracles."  They come over and hang new lime green curtains in Luka's room and then spend hours helping me organize her ten million things.  They give me pretty earrings from Hawaii.  They make me jars of food like brown rice and beans and then black beans and quinoa, and  label each jar with the date and a little red heart.  They give me flowers.  They arrange playtimes and carpools.  They work extra hours at the record shop.  They make me special olive oil.  They wash my dishes and juicer and get up in the morning with Luka.  They send me special healing rocks and pixie dust.  They send me prayers.  And strength and energy.  They make a family dinner vegan.  They remind me when to go to yoga class.   

These are just some of the things people do and I am more amazed every day.  Thank you to my peeps.

pop pop pop

Today I walked down to work in the sunny fresh air and imagined my little cancer cells going pop pop pop.  I don't know if this is the sound it would make when they die, desinegrate, disappear, but it is how I imagine it sounds.  As though the insides of my body can hear the little pops echoing, and are cheering and chanting wonderful shouts of victory.  Imagery and visualization are supposed to help, so pop pop pop.

Tomorrow my Luka girl is coming back from Wisconsin.  It was hard for me to leave her there - even for only 5 days - but I knew it would be better for her to be playing Uno and eating mini waffles with her 3 cousins, my sister and her husband, then to be here trying to figure out what is happening.  On the night I left, I was putting her to bed and she was having trouble going to sleep.  She was mostly scared of a bat coming in (there had been a bat in the house when she slept there with her cousins in the summer).  I told her bats don't come around in the winter and to remember to be brave like Mulan.  She said,"But mom, Mulan in REAlly brave."  

When I came up to check on her, she was still awake.  She said there was a bug on the wall and things making noises.  I found the bug - a lady bug - and showed it too her.  Then I sat with her and talked about all the different sounds houses make.  The next time I came to check, she was asleep.

At night, I do yoga to keep my body strong while chemo tries to destroy it.  It's kind of annoying to eat raw veggies and choke down green juices and water and supplements and do yoga and walk and still feel kind of crappy.  But I feel ok.  I feel like, yes, I can do this.  I'm not too nauseous, just as though the flu is just coming on, but not quite there.  I can get up and eat and drink water and fix Luka's lunch and take her to school and greet the other kids, teachers, and parents, and not let her know exactly how difficult these things are. 

Guerilla Warfare

The big war has begun.  Today I got to sit in a nicely textured sage green recliner for most of the day.  The inclusion room is bright, filled with natural light from windows lining the 6th floor of the center.  I sat by the window that looked out at the bungalows following each other on 47th Avenue.

First, I talked with the nurse practitioner named Roxy.  She gave me (and Scott) the lowdown. Stay hydrated.  Take extra care of your mouth by rinsing with salt and baking soda to avoid mouth sores.  Other side effects to look for like bones hurting and nausea.  That type of thing.

Then we began with hydration.  

Ten years ago, nausea and vomiting were a real problem with most patients receiving chemotherapy.  Some smartie figured out in more recent years that the chemo was dehydrating everyone and making them feel very sick.  So now it is standard to give IV fluids for about an hour before starting the medicine.  

The two medicines I'm taking are called Cisplatin and Paclitaxel.  The former is a kind of tried and true platinum based crazy drug approved for clinical use in 1978.  The latter, derived from the bark of a yew tree, was approved in 1992 with some controversy regarding it's impact on the environment, particularly the ecology of the forests in the Pacific Northwest.

Some super brainiac learned how to isolate the 10-deacetybaccatin from the needles of the European yew and make a semi-synthetic version of Paclitaxel, so in 1995, the controversy ended because, since the bark was no longer used, the trees weren't in danger.  Another interesting thing is that the, excipient or carrier (to the veins) used is a polyoxethylated (whatever that means) castor oil.  This might account for some of the side effects and new studies are showing DHA (fish oil) to be a more beneficial excipient with less side effects.  Sounds good for future cancer patients.  ( This is my understanding of these types of chemotherapy after some research, but I'm not using footnotes cause this ain't Advanced Comp Class for crying out loud so don't quote me on any of it - or use it for a term paper.  You will get an F).

These are the main troops in my body.  They are trained to kill anything and everything.  Good and bad.  I am allowing them to battle because they are good fighters and can kill kill kill the cancer cells, but I do not care for their lack of judgment.

Which is why I am happy to be also using the tactic that showed triumph in the Vietnam War - Guerilla Warfare.  My tactics include, but are not limited to fish oil, magnesium abcorbate, quercitin, bioflavinoids, whey protein, acidopholis, vitamins CDABKE, selenium, evening primrose oil, garlic, maitake mushroom extract, ginger root, marshmallow root, green juice, raw foods, whole grains, no sugar and a whole bunch of other boring things.

These tactics help to strengthen my puny immune system and normal cells into a fighting machines.  And though, these cells are local and native and have been oppressed for quite some time by the evil tyrant, the mutant cancer cell,  they are sharpening their swords and setting booby traps as we speak. (sorry to sound so D&D here).  They are ready to work alongside the idiot main troops and keep the good cells working so the immune system can learn to attack the cancer on its own. 

So here we go.

Today in the green recliner I read three magazines, the last half of a book, and watched an episode of  The Shield on DVD.  The nurses are attentive and helpful.  Scott brought me soup he made in the slow cooker.  

I have "good veins", so the medicine goes in through an IV.  If  it's hard to find veins, or if they are too small, like on a little kid, they have to use ports in the chest or a main line in your upper arm.

I feel fine.  Side effects probably won't show up till a few days from now, and with help from my guerilla warfare, I'm not anticipating them to be debilitating.

The man next to me was large and sleeping the whole time.  I noticed his skin looked a strange cream-yellow color.  Then I looked at my hands and saw that mine were also cream-yellow colored.  I think it was just the hue from the light.  But I guess I don't care If I turn cream- yellow for a while.

Polka Dots

On the plane back to Portland, the seat next to me was empty because that's where Luka was supposed to be sitting.  I cancelled her fight so she could spend some more time in Wisconsin with my family and not have to witness her mom's first encounter with chemotherapy.

I looked at the empty seat a couple times and was about to set my jacket there when the woman in the aisle seat threw down her newspaper and her Horticulture - Planning for Spring Magazine.

Onto Luka's seat.  

For some third grade type reason, this made me mad.  The woman sat squarely in her seat, pleasant as can be, adjusting her seatbelt and moving her hips to get comfortable and she did not know that I was totally pissed at her.  She was wearing black pants and a black sweater with big  green, blue and white polka dots and a green turtleneck that matched some of the polka dots.

After a few minutes, she put an empty candy bar wrapper on the seat too.

Why did she think that she got to use the empty seat?  Didn't she know that was Luka's seat, where she should be sitting all scrunched up complaining about being hungry and wanting another cookie and then laying her head against my arm?  But that she wasn't there because her mom has to go get some chemOtherapy on Tuesday?  

She did not know this and I knew I could not blame her, but I still sat there mad at her for putting her stuff there and sitting in her aisle seat, smug as toast, wearing polka dots.

The Cold

It's cold here. The kind of cold that freezes air and makes it hard to take a deep breath. I'm in Wisconsin with my family, reading about supplements and cell walls, and getting Luka settled so I can return to Portland and begin treatment. Little wide eyed kindergarten girl will join us again on January 17th, giving me time to adjust to this thing called chemotherapy.
I went to the Oncologist Dr. B last Monday. We walked into the cancer center and up to the 6th floor and around the corner through a really long carpeted biege hallway. When I got the the receptionist counter to check in the first thing I noticed was one of the receptionists was sitting not on a chair, but on a big blue yoga ball. I stared at the ball for a minute and then the second thing I noticed was a photograph of two kids. I was really thrown off, because the photo looked so familiar. As the receptionist was asking my name and birthday, I realized the photo was familiar because I had taken it. It was a from a portrait session I had done a few months ago. I said,"hey I took that picture," and both receptionists looked at me rather quizzically and then one of them said "oh - those are my nephews - did you do those. . .etc." After that I felt a mild sense of comfort and also a little wierd.
We sat in the waiting room for a while and then went and got weighed and blood pressured and then sat in another room for awhile. I kind of paged through a Sunset magazine. Scott's hair was all messed up so I fixed it alittle bit for him and then Dr. B came in.
Talk talk talk repeat repeat repeat what happened where why what hurts now what hurt then symptoms odd cancer advanced do you want to see the pictures of the insides of your body?
I like Dr. B. He is kind but he is no bullshit. Lay it down doc.
You have cervical cancer that has metastitized to the lung, chest wall, neck tissues, and another area near the spine. (Already knew that). It travelled through the blood stream and may have been there for some time, but was too small to see on an xray or scan. (Didn't know that). We can treat it, but we can't cure it. (Was pretty sure he'd say that).
I did not ask for any statistics and he didn't offer any. He said he doesn't think it will go to my brain and that most people living with cancer don't live decades. We will treat it with two kinds of chemotherapy.
That is all I need to know. Because, people of the world, one of my favorite things to do is to prove people wrong. Really, it gives me an almost unruly satisfaction. I understand now that it is my doctor's job to treat this ugly thing, but it's my job to cure it.
I'll take my full deep breaths outside in the freezing air, you know. I grew up here and I know how to do it.

Kindergarten

Today Luka started school again after a two (almost three due to snow days) week break.  She will go to school today and then we will leave for Wisconsin tomorrow.  She will be out of school for another two weeks.

Luka was excited to tell her teachers that she was going on vacation to visit her cousins and grandparents. She wanted me to let her tell them at school so they would be surprised.   Her Kindergarten teacher did act surprised when she burst through the door to make her announcement, but I knew by her face that she had gotten my email.  In the email, I explained to Luka's two teachers that my cancer had come back and that Luka would be away while I started treatment.

 I didn't think I'd be upset dropping her off at school, but when one of her teachers handed me some journal pages for Luka - but not too many, because she didn't want to overwhelm her, I started to cry.  I tried fanning my eyes, but it didn't work - and I'm not certain that that trick does work; seems more like a nervous reaction to crying - and I had to leave the classroom fast.

When I got home, I watched a movie with Scott and then closed myself in a room and practiced yoga for about a half hour.  Now I feel better.

Today we go to the Oncologist to find out what exactly he thinks is going on, and what type of treatment they think will be best.  I am supremely wishing that this doctor will be hopeful, despite the advanced stage of this awful monster cancer.  I am supremely wishing he will agree with me that I am young and strong and can beat it.

I've been keeping an advice journal for Luka.  I am also supremely wishing that when she is sixteen and reading it, I will be sitting next to her.  Or at least washing the dishes while she is upstairs in her room with the door shut listening to strange loud music.

Robitussin

Can't I just use a whole bunch of Vic's Vapor Rub?  Castor oil on my chest?  What if I just drank a whole bottle of Robitussin?  Would that make it go away?

I'm still waiting for the results of the MRI.  I figure no news is good news.  Today it snowed again.  I wonder why I'm always bombarded with heavy health news during extreme winter storms.  Last year my first appointment at the awful Hospital on the Hill was cancelled because my doctor could not shovel her way out of her driveway.  It was the first appointment with the oncologist after they discovered the cervical cancer.  I said to the receptionist, "Does she want me to come pick her up?  Because I can, you know."  Where was Doc Baker?  He could make it through a blizzard in a horsedrawn carriage and show up in time to save a pioneer woman from dying during childbirth.

When I first had chest pains and went to the hospital this year the Sunday before Xmas, there was about 8 inches of snow in Portland.  Some guy was blocking the emergency entrance with his SUV door while he wiped off his windshield.  I rolled down my window and asked him to close his door so we could get through.  He said, "I ain't closin shit, bitch." I said, "Cool.  I'm going to the Emergency Room, so thanks.  Thanks for your help," and he started walking toward me with his coffee cup.  He was big and bald.  Scott drove around him while almost knocking his door down.  There was lots of snow and ice.

I like my new doctor, Dr. L mostly because he was at the hospital during the big storm.  He apparently did not have trouble shovelling his driveway, or maybe he took the bus.  In any event, he was there and he ordered the tests and he found the cancer in my lung.  I have this feeling he would have called me (even though he isn't in the clinic on Fridays) if the results of the MRI showed anything weird on my lumbar spine or in the soft tissues of my neck.  It was last Friday he called me to tell me about malignancy in my lung.

He said, "Well, I it isn't what we thought.  It's cancer."

I said, "I knew it."

        And he said, "YOU knew it?"  And I liked how he said that for some reason.

I'm going to move the little gingerbread couple off our front stoop later today because the little gingerbread woman keeps falling and landing on her face at the bottom of the steps.  

I'm trying to organize my house because apparently that gives cancer people a sense of control over their surroundings, which is important when your insides are out of control.  The organization process is going pretty well (to my standards) except I don't have matching socks on and that is bugging me today.  I did a big load of laundry and washed a bunch of socks, but all the matches are in the other load.  Hopefully, I can sort this out later today, but when I keep wearing mismatched socks, it gets harder and harder to wash matching socks at the same time.

I took my 5 year old daughter and her 6 year old friend to see the Three Stooges movie marathon at clinton street theatre yesterday.  I knew her friend would mention something about our messy car.  The first thing she said  in the car was "why is your car so messy?"  Then she said, "why is there a coffee cup on your front lawn?"  "Why not?" I said.

Like I said, the organization process is going pretty well (to my standards).

What about Nyquil cold and cough mixed with pomegranate juice?  Like gallons of it.  Would that work?

 

Space Invaders

I was always pretty good at playing Space Invaders.  Mostly Atari, but I did alright at the arcade too.  At Alladin's Castle in the mall I had the high score more than once.  I usually put JAF for my initials, but once I went too far and put JJ, then added another J and decided that looked better.  So a couple of times, my high score initials were JJJ.

Right now there are some space invaders in my lungs.  They may be pushing through my upper left chest wall, into the soft tissue of my neck and also down through my diaphragm.  They go by the name of Squamous Cell Carcinoma.  

Today I had an MRI, which lasted for two hours and was not unlike lying in a tanning booth in the middle of a rave.  Although I was aware that I'd be in this enclosed round shaped space,  I was unaware of the noises this round shaped machine would be making.  It really was somewhat like a dance beat and jittery and loud, but I actually felt relaxed being in this machine.   It was as though it was protecting me and offering a steady noise to distract me at the same time.  I'm pretty sure this is not how most people feel having an MRI.  Also, after two hours of being in there, I felt less protected and relaxed.

The PET scan the other day was a different story.  This I did not like.  Most of the not liking had to do with the syringe the size of a toilet paper roll, encased in steel, and full of bright yellow liquid.  That and the sign on the door that said Nuclear Medicine.  Anyway, that syringe is full of the contrast that makes the space invaders glow.  I wish it could also shoot them with little dashes and make them disintegrate.

 So there are PET scans, and CT scans and MRIs and I've done all those.  I'm waiting for my doctor to call me tomorrow with hopefully good news about my lumbar spine and soft neck tissue.  I'm also a bit worried about my diaphragm.  I know they can take out my upper left lung lobe to get rid of this one certain tumor, but if the diaphragm is involved it may be a whole different story.

The doctor will (also hopefully) tell me tomorrow whether awful Hospital on the Hill has sent over my slides and reports so Much Better New Hospital can look them over and determine whether these cells are coming from my earlier cervical cancer, or if they are a whole new set of out of control cells coming from who the hell knows where.  As was explained more than once to me, both scenarios would be odd.  I never had much of a problem being considered odd, but in this case I do.

It's New Year's Eve.  In 2008, I maybe got in the Top 10 at my own game of Space Invaders - aka Cell Wars.  In 2009, I plan on getting the high score.  JJJ.