Waiting for Savasana


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Ten Things

1. I am really tired of thinking about/talking about/dealing with cancer.  I have reached my fill for the moment.  Am I in denial?  Perhaps.  But since I currently have no evidence of disease (knock wood), I just don’t feel like thinking about it.

2. With that said, three out of four of us are currently sick with a cold.  Unfortunately, I am in the majority.  We walked to a restaurant yesterday for lunch.  It’s about a mile each way.  I barely made it home.  I immediately got into bed and stayed there the rest of the day.  I watched Mamma Mia on dvd.  That cheered me up a little.  However, it stinks feeling sick and tired and having two kids who are mutually miserable.  Yep.  Poor hubby is taking care of the family AGAIN.

3. Our holiday consisted of a trip to the desert.  My husband and my first vacation together was to the desert.  We stayed in the same place as last time but in a cottage.  It was lovely but it was very different from the trip we took fourteen years ago.  Life is different with kids.  It just is.  Regardless, a good time was had by all.

4. I finally got around to watching “Cloud Atlas” while on holiday and, strangely, I loved it.  I didn’t expect to at all. But I thought it was incredibly entertaining and evocative.  I made husband watch it with me the next night and…he hated it.  He felt the exact opposite of me although we both agreed that Jim Broadbent saved the entire movie.  We’ve been talking about it ever since.  I actually want to buy the movie and he thinks I’m crazy.  I love how we can disagree on something so completely but still have great conversations.  I’m not mad at him for not liking it and he’s not mad at me for liking it.  We just have different opinions and there is room for that.  Regardless, I need to watch that movie again because it’s super long and both times, I fell asleep in parts.

If you don’t know anything about the movie, it’s basically six movies in one.  Each movie represents a different time period and genre but contains the same actors playing different roles, races, genders.  My husband felt much of it was superfluous.  I found value in every story.  You know it’s pretty cool when Hugh Grant is in every story but only recognizable in two out of six (and in one of them, he’s a scary cannibal!!).  The main point of the whole thing is the belief that our lives transcend birth and death.  I just can’t stop thinking about it.

5. I don’t think I’m going to be ready for that Hot Chocolate Run in two weeks.  I thought I could walk it but there is a 15 minute mile time limit and sadly, I am not there yet.  I try to walk daily and I’ve got this 2.7 mile loop that I walk in my neighborhood.  Sometimes it takes me 45 minutes and i come home covered in sweat.  15k?  I don’t think so.  There is a 5k option.  I’m going to see if I can do that.  I’m kind of bummed but I know that when I signed up, I was being optimistic.  I’m honestly just glad to be walking a couple miles a day.

6. I listen to audiobooks while I walk.  I am currently listening to “The Goldfinch” by Donna Tartt.  I remember her first book, “The Secret History”.  People loved it.  People raved about it.  It didn’t touch me.  I was disappointed.  I am enjoying “The Goldfinch” but it seems like a Murphy’s Law kind of book.  The main character just seems to be bombarded with crappy circumstances.  Sometimes it’s a lot to take in.  I do not know how it ends and I am hoping this kid catches a break but things are not looking good so far.

I’ve had an Audible membership for a couple of years now.  Every month i get one token to spend on a book.  I am very particular about the books I choose.  I usually opt for longer books in order to get my money’s worth.  I pay something like $14 a month so I find books that are at least comparable in price.

I have listened to some incredible novels I probably would not have picked up on my own.  Ender’s Game and Ender’s Shadow being two of them.  Also the entire Outlander series.  Davina Porter is an artist narrator.  I could listen to her read the phonebook.

I have also taken chances on books I haven’t been able to finish.  Pillars of the Earth, blech.  I know most people love it but I hate that book.  I’ve also never been able to get into “The Kite Runner” so I thought the audiobook would be an excellent way to finally read this book…but it’s narrated by the author, who I’m sorry to say is not a great narrator so I still have not read that stupid book.

Hmm…perhaps my love of audiobooks would best be expressed in a longer post all of it’s own.

7. We have absolutely no plans for New Years and that is awesome.  I think we might cook a little, play some games, watch some movies.  I don’t feel like doing much else.

8.  I am going to do a Whole30 beginning on January 1.  I am doing this because I am feeling very inflamed after everything and I think cutting out inflammatory foods cold turkey could really help things.  My armpit hurts, people.  It hurts a lot.  Nobody ever told me it would be my armpit that hurt the most.  Weird thing is, the skin of my armpit is completely numb (which is great when I am getting my pits waxed, and no I don’t shave them because I am afraid of getting a nick, since there is no feeling and getting lymphedema which I just do not want), it’s the inside, the muscles and tendons that are really painful.  Things are supposed to get better when I have my exchange surgery that trades out the uncomfortable tissue expanders I am currently sporting for real implants.  Unfortunately, exchange surgery is pretty far off (six months after radiation) so I just take Advil and deal with the pain.  It gets worse at night time.  I stretch and do my PT exercises but my armpit is still not great.

Anyway, I am hoping the Whole30 does what it did last time, reduces inflammation and instigates much needed weight loss.  No dairy, no grains, no legumes, no white potatoes, no sweets, NO CHEATING. Just lots of fruits and veg and some meat.  I’m ready.

9. I am extremely impatient about my hair growth.  It started growing back while I was doing the Taxol but things seem to have stalled. Being a lifelong curly girl, I was hoping it would come in straight (a girl can dream) but at about one inch, it started to curl.  So it looks like an unkempt pixie cut.  I’m thinking about going in for a trim but that seems counterproductive.  Regardless, my hair is currently annoying me.  Just grow already!  Sheesh!

10. Everything is currently in limbo.  I’m still just slowly recovering and I’m ok with that.  I am thankful for normalcy.  I am basically just in a deep exhale.  Maybe not even an exhale, more like the space between an inhale and an exhale. Believe it or not, it’s a good place to be.

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Making Stuff

This year, our holidays will be fairly low key.  We are finding ourselves a bit of what my old friend Judy (who passed two years ago from this horrible disease) “cancer poor”.  We are ok.  Thank goodness for decent insurance, right?  But there were expenses…like three times as many summer camps for the boys than usual, money well-spent IMO.

We are just needing to tighten our belts and personally, I think it’s a good thing.  I think it teaches good lessons to be fiscally responsible.

So, I’m making stuff with my fancy sewing machine  that was purchased pre-diagnosis.

We bought cards but they are from Costco and I bought the bare minimum.  And no, I did not include a picture of myself on them.  I am not in any frame of mind to put my mug on a dorky holiday card and send it out.

I love getting holiday cards.  Seriously.  I love it.  I tape them all over my window sill.  They make me really happy.

But the pressure of sending them.  It’s a lot for an unorganized girl like me.  Every year, I run out of cards.  Every year, I go digging up the same addresses.  Every year, I finally give up in exhaustion knowing that I most likely sent three cards to the same house.  Mail merges and lists are a great idea but it’s not my strong suit.  Every year it’s the same thing.  But that’s okay.

Want to see how many cards I got when I was going through treatment?  I kept them all.  They make me really happy.  They give me goosebumps.  I keep them in a pretty bag.

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I wish I could make something crafty for every single person who thoughtfully sent me a gift or a card or several cards.

But for now, I am starting with my boys’ teachers.  My youngest is making his teacher a reversible scarf.  It’s of his own design.  I’m like, “What about this nice pattern?  Or this one?” and he’s all, “No Mom, I know what I want to do.”  So we went to the fabric store and he picked his teacher’s favorite colors and we will work on it once he finishes this other project we’ve been working on.

And as a side note, I strongly believe that parents should give a gift to their child’s teachers around the holidays and at the end of the school year.  I don’t just say that because I am a teacher.  I say it because I know how hard these people work.  I know it is often a  thankless job.  I know these teachers have a lot on their plates besides making sure our kids get a good education.  They deserve something nice.  Even if it’s a card your child made for them that you filled with words of gratitude.

Regardless of what I make and what I do this holiday season.  For me, this December is really about appreciating the people who made my life easier while I went through a difficult time.  People who went above and beyond to bring a smile to my face or that of my boys.  I said early on in this blog that I am historically an insecure person.  I fully expected to be alone once I was diagnosed.  I really thought that I would lose everyone.  Sadly, I just braced myself for that because it has been a pattern in my life.  But it didn’t happen (well it DID happen on one level (a horrendous level) but not with the people who really know me and LOVE me).  I am overwhelmed by the love I received.  And yes, a card in the mail makes a difference.  A text makes a difference.  A phone call makes a difference.  Calling me and asking if you can come for a visit makes a difference.  If you brought us a dinner, it made a difference.  If you thought about us, it made a difference. Support is support.  And it makes all the difference.  I was tidying and I found a note from one of my dearest friends whom I have known since the second grade.  “I wish I lived closer.” she said.  It made me tear up even months later.

I’ve been reading that when someone is diagnosed with cancer, many just don’t know what to do.  It scares them.  Some it scares so badly that they need to turn away.  But if you are reading this and you are scared, I just have to tell you that it doesn’t take much to make someone’s day.  A card, a text, a prayer, a Facebook message.  Being brave means doing things even when you are scared so if someone you love this season is going through something and you just don’t know what to do, just do something little.  That’s really all it takes.

And conversely, if someone you love is diagnosed with something horrible, don’t go overboard either.  Respect the person’s boundaries and listen to their wishes.  Their illness is not about you.  I really believe that a lot of misunderstandings and arguments occur because of this.  I learned that my illness is my thing and that I have the right to set any kind of boundary without others adding their egos into the mix.  The last thing I wanted to do during chemo was argue with another person and yet, in the beginning of my treatment, it was happening a lot and everyone involved was miserable.  Cancer patients don’t have the energy to waste on petty ego arguments.  The last thing I needed was that.  Think about it.  It may hurt to hear that your presence is not needed but it isn’t always about you. That may sound harsh but it’s true.  Toward the end of chemo, there were times that I was home alone and I was too sick to answer the door.  I had to cancel dinners that people were bringing because I knew I couldn’t get out of bed to open the front door.  I felt awful and ungrateful cancelling but you know what? Everyone was understanding.

That’s love.

One of my friends had even MADE the meal.  I asked her not to bring it and she put it in her freezer.  Then she texted me asking if she could bring it in a couple of days but I didn’t get the text for months.  I was mortified.  I felt so rude and bad.  But when I contacted her…she was totally cool about it.  She was all kindness.  That matters.  It matters.

Having this cancer has taught me a lot about myself.  About who and what is important.  About who I can rely on to really have my best interests at heart.  And the little things mattered.  That time my friend Michelle brought me popsicles mattered.  That time my friend Julie patiently let me change my mind about a coffee date three times mattered.  That time my brother came to visit and hugged me and told me he loved me mattered.  That time my sister texted me pictures of my adorable new niece, it mattered.  All the times my clan of  aunties sent me a card to lift my spirits, it mattered.  And when my mother drove seven hours simply to take my children to GolfLand to give us all a break, that mattered.  The daily texts throughout my chemo from my friend and sorority mom Jennifer, those texts mattered a lot. That time my friend L knocked on my door with a Starbucks, that mattered.  That time I told my friend Heather I was too tired to talk and she gently let me get off the phone, that mattered.  That time this wonderful guy, Rich ran a marathon for me and brought me the Tiffany necklace. Well, that just made me cry like a baby.

I believe that patterns happen in our lives and it is up to us to see them and face them and fix them when we can or, if we need to, let them go.

I think this cancer (while it is a horrible thing) has shown me how loved I am.  And that is a big lesson for a person who deep down has not always felt very loved.

I am so grateful for the love and care I have received.  I am so lucky.  I wish I could send every one of you a present I made with my two little hands.

But all I can really say is thank you for being there for me in whatever way.  It mattered.


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“Are You Okay Now?”

That’s a question I get asked a lot.

It’s a tricky answer.

Technically, I have been “cancer free” since my surgery on April 18th.  We confirmed that with bone and body scans.  There is no detectable cancer in my body.

There could, however, be microscopic traces of cancer still in my system and since it made it to my lymph nodes, there is a bigger chance.  The chemo was done to try to prevent the microscopic traces (if there were any) from growing.  The radiation was done for the same reason.

See it’s not like if I had a blood cancer and they were giving me chemo to kill it or put it in remission.

The doctors cut out my cancer and then blasted me in the hopes of keeping it away.

Of course their aim was to “cure” me.

My new oncologist told me that if it doesn’t come back in fifteen years, that means I was cured.

Fifteen years is a long time to wait.  I will be fifty-six.  In fifteen years, both of my children will be in their twenties.  Fifteen years seems like an eternity.  Anything can happen in fifteen years.  I can’t really even contemplate fifteen years.

For now, I am ok.  I hope to remain that way.

I never felt sick with the cancer.  It was the treatment that made me feel unhealthy.

It is a very strange thing to wrap one’s head around.

Am I okay?  Yes.  I am okay.

Will I always be okay?  We don’t know.  Nobody knows.

It seems strange to do all that work and go through all that torture and not know if it even works.  But the truth is, only time will tell.

So when people ask me, I am never quite sure how to answer.  I tell them I’m ok for now.  I tell them I hope to be okay forever.

When I was a kid, I read a book about a girl who had bone cancer.  I remember thinking to myself, how scary.  How do you live your life knowing you have cancer?

Well, now I can tell you that you just do it.  You just live.  And you are grateful for every day you can get out of bed and be alive.  Even boring mundane stuff is fun these days.  Cleaning the kitchen is even fun.  Seriously.  Heck, breathing is fun.

And it feels great to feel better, even when it is in baby steps.

The other day, I called my friend Heather.  We’ve been friends for over twenty years.  The last time I talked to her was right after I had finished chemo and I did not have much to say. The call was quite brief.  This time, I talked and talked.  It made me realize how much progress I have made in my recovery.  I don’t take it for granted for one second.

Am I okay now?

Yes.  Today I am okay.

The actress Lynn Redgrave had her first battle with breast cancer in the early 2000’s.  After her treatment, she apparently stated that she would not die of breast cancer.  And then, several years later, she did indeed die of breast cancer.  It came back.  And the weird thing is, if you do a search, you will see that there are breast cancer survivors who were mad at her.  Mad that she would be so bold to say that she was cured and then have the audacity to die.

Really?

She was trying to be optimistic.  She was trying to take control of her disease.  She was hoping she was cured.  And people got mad at her for dying?

All I can say is that the internet is full of jerks.

I do not find myself as bright eyed as Ms. Redgrave.  My brain is wired to be more realistic.

The truth is that this disease could eventually kill me.  That is a big possibility.

But it isn’t going to do it today…or even tomorrow.

Today, I am okay, and that is all I’ve got.


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Blech

I seem to have caught a little cold.  It’s the first one I’ve had since last winter.  It’s really been kind of nice.  There has been a great deal of illness from other members of the household but I have managed to escape it all for months until now.

It’s weird when you consider it.

Yes, treatment has brought a great deal of pain and drama but I have not been conventionally sick in almost a year.

“It’s about time.” said someone who shall remain nameless.

Humph!

Anyway, I have a little cough and head ache.  It’s nothing hugely bad.  Just uncomfortable.

In other news, I met my new oncologist this week and the meeting went well.  A lot more listening, a lot less gruff than what I had been experiencing with my former oncologist.

I am not trying to disparage my former oncologist.  Like I said, she served me well during treatment and was very aggressive.  She was also attentive when trouble arose.  Like when I had mouth sores on my birthday.  She called in prescriptions at the speed of light.  I appreciated that care.

I explained to my new oncologist that while she and her colleagues have years of experience and schooling behind them in the field of fighting cancer, I only really have the past eight months and I need a sympathetic and patient ear when I have questions.  And some days, I have lots of questions.

I am also unwilling to be put out to pasture or dismissed.

Regardless, I have never been a “do what I tell you to do” kind of person.  I need someone who is willing to work with me.

These doctors hear these question hundreds, even thousands of times but for me, it’s the first time asking them.

Hopefully, this new oncologist will continue to collaborate with me.  This is my life we are talking about here.

Onward and upward.

 

 


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Ways that I am different

Physically:

Well, I’m still chubby.  Whatever.  I’m working on it.

Other than that,  there have been some more disturbing changes.  For one,  hands and feet still have some neuropathy.  It is not debilitating but it has changed me.  I was once a person who only wore shoes and socks when I had to.  I never wore slippers.  Slippers?!  How absurd.  The minute I got home, off came the shoes and socks.

Not anymore.

My feet are sensitive.  Cold floors bug them.  Ouch!  And forget about what happens if I step on a lego these days!  It’s crazy how sensitive my feet are.  I wear slippers.  I wear socks.  Constantly.

It’s weird.  It’s so unlike me.  I think it has changed me.  Not for the better or for the worse.

I’m just different now.

And my hands.  Still very sensitive.  It’s difficult to write for long periods of times.  The other day we were out and about and my husband chided me for not clapping for some performer.

“It hurts my hands to clap,” I told him.

Oh.

That’s different.

My hearing is also off.  I’m thinking it might be permanent.  I even took an online test and while I am in normal range.  I am on the very low side of normal and my test looked very different from my husband’s.

I ask people to repeat themselves.  I turn up the t.v.  I try very hard not to act like an asshole.

Because I am the one with the hearing loss.  It would seem stupid to lose patience with someone else because I can’t hear them.

I try to be polite.

Although,I am not perfect… someone I love dearly is a known mumbler.  I still lose my patience a little bit there.  But now I say,”HEY!  I really can’t hear very well, can you enunciate please?”

I do wish I had been told there was a chance that Taxol would impair my hearing.  I still would have taken it.  It just would have been nice to know.

What?!!

🙂

I’m still having aches and pains.  Laying around for seven months will do that to a person.  My back starts to hurt if I am in the kitchen too long. My core muscles are shot.  Kablooey!  But every day feels a little better.  It really does.

You know what helps?  Big doses of L-glutamine mixed with juice.  It helps a lot

I refuse to be a person who sits around complaining about her aches and pains.  I refuse.

So I am trying to exercise more and am keeping up with my supplements and acupuncture and if I need, some nice analgesics like ibuprofen.

Emotionally:

I am doing ok.  Trying to stay positive.  Trying not to have murky, scary thoughts.

The holidays help.

Early on I was having obsessive thoughts about breast cancer.  It got to the point where I was annoying myself so I knew I was annoying those around me.  Nobody wants to talk about that stuff in the first place.

But like I said, the holidays have helped.  They make me happy.  Decorating and baking cookies make me happy. I like to be happy.

Something else I’ve noticed is that having this big scare has sharpened my bullshit detector.  Not only that, it’s given me distance from drama.  I don’t want any part of meanness or petty stuff.  I just walk the other way.  And I see it.  Oh I see it.

But I don’t care anymore.

And the things that used to bother me…well…they just don’t.

I realize that a lot of it is people’s egos.  I’m trying to see past that and still love the person.

And I am not even joking right now!

I’m just living in my Beth bubble.  It’s actually quite a nice place to be.

I don’t know, life is simplified.  I take things as they come.

I laugh more.


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Stockaversary?

This Thanksgiving marks a full year that I have been making my own broth.  It all started with the bird from last Thanksgiving.  I took off most of the skin and put the bones and joints and turkey stuffs in my crock pot.  I added some vegetables and some peppercorns and let it simmer for twenty hours…and thus a new lifestyle was born!

This picture looks gross but it made some good broth!

This picture looks gross but it made some good broth!

I use the broth for everything, soups, stews, mashed potatoes, gravy…

We drink it.  I drank it a lot during chemo.  The broth is full of minerals and gelatin and it’s good for you.

I always roast first (we have roast chicken about once a week for dinner) and then I simmer the bones for broth.

My boys hate the smell of the cooking crock pot.  I admit, our house often smells of “old people”.  They boys don’t have much to do with the broth on it’s own.

Last night, we had a simple dinner of pan roasted salmon, green beans and quinoa.  I had some quinoa in bulk and wasn’t sure how to prepare it, then I shrugged my shoulders, got my ladle and dipped into the crock pot to get some already simmering broth.  I brought it to a full boil on the stove, added the quinoa and some salt and pepper to taste.  It turned out nicely.

My youngest is not a fan of eating.  He never has been much of an eater.  I was really worried when at 18 months of age he weighed eighteen pounds.  I was buying him milkshakes to try to fatten him up.  Our doctor said not to worry, that he would probably just be naturally lean.  She’s right.  He just had a physical though and while he is in the 90th percentile for height, he is in the 40th percentile for weight which makes him almost off the curve on the combined scale.  So finally, even the pediatrician said something to him about his eating.

Thing is, the kid likes fruit, vegetables, candy and hot dogs and that’s about it.  However, last night he said, “Mom, if you make dinner like this every night, I will eat it.

Salmon, quinoa and green beans.

Before my diagnosis, I wasn’t that concerned about the meat in our house being organic.  I tried when I could but organic is pricey.  Since my diagnosis, we are eating a lot less meat so I almost always buy organic.

Another bonus to making my own broth is that it is much more environmentally friendly than buying it from the store.  I am not throwing away cans or those weird paper containers.  I bought some freezable containers and store extra broth in the freezer.

Also, have you actually read the label on commercial broth?  Even the organic kind can often be filled with soybean oil and fillers.

The crock pot makes it easy to do it yourself and you know what is going into it.  This current batch was turkey bones, a couple of carrots and a leek.  I fill the pot with water and it’s good to go.

I just have to remember to air out the house when it is done.