Waiting for Savasana


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I was Waiting To Take It…

The Tamoxifen.  I was waiting until I felt a little better.  But last night, I had nightmares all night because I hadn’t started taking it and really, my brain knows I need to do it.

So I took it tonight for the first time.

Tamoxifen has some crappy possible side effects but you know what would be worse than side effects?  Metastasis.

Physically, I am feeling better than I was but still not great.  I am about 60%.  Honestly.  60% and I feel better now than I have in awhile.  That’s saying something.

Tomorrow I have an appointment with the “Survivorship” person.  It says online she is a nurse practitioner.  I don’t think she is the caseworker I spoke with a little over a month ago but it says it is a return visit so maybe I have already met her but don’t remember?

It’s funny.  I don’t remember much of the summer.  The four AC chemos I had were really tough on my brain.  The Taxol was tough on my body but I remember more of that time even though I felt horrible.

I am tired of talking about how horrible I feel…how tired I am.

I am impatient for recovery.


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The Next Step

I got my first bottle of Tamoxifen today.  It is an estrogen blocker.  My tumor had receptors that were responsive to hormones.  In other words, hormones fed the cancer.  So now for the next ten years, I am to take an estrogen blocker in order to starve any microscopic cancer that may be lingering and looking to grow.

I have read a lot about Tamoxifen.  Some people have a lot of side effects like joint pain, hot flashes, and other fun stuff.  Some people have no side effects.

My oncologist wouldn’t really talk to me about side effects.  It was strange and uncomfortable.  I mean the fact sheet lists tons of possible side effects but she insisted the only side effect I should expect is an occasional discharge (Ewww!).

I left her office a bit frustrated.  I am a very direct person and I appreciate when others are direct with me.  I don’t like things sugar-coated.  Seriously, just be straight with me.

She also told me that under her care, there will be no tests, no scans, nothing.  Because according to her, if I did end up with metastasis, I would just get Tamoxifen and they would make me “comfortable”.

Huh?  What?

No.  I am not cool with this.  And I am even more frustrated.  I mean, I am not Stage IV but I know from my reading that often Stage IV breast cancer patients feel discarded.  They feel let down by research who do not spend a lot of time or money, comparatively, helping them.  They often seem to feel let down by modern medicine.

Now I know I just finished treatment and no I do not want to go through what I went through in the last seven months any time soon or really ever again, however,  IF I were to become Stage IV, I don’t think I would be willing to just “be comfortable”.  No.  I am not cool with that.

This is kind of bummer thinking for someone who has just finished something awful but I just had the appointment so it’s on my mind.

This just seems like something else to figure out.  Frustrating.


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One More

Oh my goodness.  Just one more radiation treatment to go!

I am getting crispy so it is good that I am almost done.

It just looks like a bad, bad sunburn… on my chest and my ARMPIT!  Yikes.  Ouchie.

Yes, it’s not just breast cancer, it’s armpit cancer since it got to the nodes there.  Armpit cancer.  Funny no one really calls it that.  Do they?  Next time someone asks I’m going to tell them I have armpit cancer.

Anyhoo, I had a blood draw today and the nosey lady doing the needle sticking was asking me a bunch of questions.

“So your only Stage 1, right?” she said casually.

“No actually, I’m Stage 3………C.”

The look of horror on her face.  Horror mixed with sympathy and pity.

I totally wasn’t offended because that’s how I’ve felt about it since the day I got the pathology report.

This is serious stuff.

But the look on her face was a reminder.  Because I forget that I am actually ill…and that it is really serious.

Someone said that once you are diagnosed with cancer people treat you differently.  Like that’s a bad thing.

I think I’ve been through so much that I deserve to be treated differently.  Yep.  I said it.

I do not expect to be treated like a princess but if people want to be nice to me because I was diagnosed with serious cancer, I am down with that.

And conversely when someone is mean to me, which has been rare but has happened, I’m kind of like, Dude, don’t you get it? I am really freakin’ on the edge!  Check yourself.  You know?

Even the other day, I was driving with my husband.  We were waiting behind several other cars to turn onto our street and this woman who was in her driveway started backing out and almost hit us.  I laid on the horn!  I was thinking “Hell no!  I did not go through seven months of treatment to get hit by some turkey in a hurry to get to Starbucks!!  No way!”

These are the things that go through my mind.

When I was very little, I told my grandma that I wanted to live to be 100 and she told me that I should never want that because I would just be a burden on others..blah..blah…blah.  But that has always been my hope, to make it to 100…like George Burns.

And I will be honest, I often get the things I really want, eventually anyway.  I’m not talking about diamonds and a money tree in the back yard.  But I AM a believer in “The Secret”  because it often works for me.

While I still hold out hope of living to 100, a dream I have had since age 4, I now have to deal with the reality of being in the hopeful percentage that makes it five years past diagnosis.  And that can be depressing.

But for me, it kind of isn’t.  Because I’ve had seven months to think about this.

We Americans, we don’t like to talk about death.  Even when I was little and asked about death, I was just told that everyone went to heaven.  Hush now.  I remember when a great grandmother died, I asked after the funeral how long it would take for the bugs to get to her and I was abruptly and perhaps appropriately shushed.

And since my diagnosis, there have been people who tried to shush me.  “Don’t talk like that!”  “You’re going to make it!”  “Hush!”

But the reality is that I might not.  I might not make it and the way out could be quite painful.  And that is something I think about but try not to obsess over.

If anything, I am just trying to make peace with it and focus on the here and now.

And there are silver linings to this possibility of dying young…I don’t worry so much about recycling (although I still do it).  I don’t worry about retirement (although we are still saving).  I don’t worry about how my kids are going to turn out. No really! I mean it! I used to worry about sex and drugs and rock and roll and whatnot.  I’m not so worried anymore.  I just want them to grow into the beautiful adults I know they will one day be.  I’m just more into letting them be who they are now instead of projecting my nonsensical worries onto them.  Does that make sense?

Regardless, it’s a good thing.  It makes me a better mom.

And if there is one thing I have learned in the last seven months (although really my entire marriage) is that if something ever does happen to me, my boys will be very well cared for by their father.  Because he has been amazing through all of this.  Amazing!

But I knew he would be.  That’s why I married him (that and the fact that he’s H-O-T, HOT!).

He’s going with me tomorrow for my last treatment.  And he will continue to be my rock and my strength throughout what has been a nightmare.

I don’t know what is going to happen.  None of us do.  But I refuse to let fear rule me.  I’m just going to live.


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Making a Memory

Today we went to Hakone Gardens with our youngest.  Our last stop was the zen garden.

“What’s Zen?” asked the lad.

“It’s when you are just in the here and now.  You don’t think about what happened before or worry about what happens after.  You are just in the moment.”

He was quiet for a second.

And then he said, “Oh.  Can we go now?”

But we didn’t go yet.  We sat at this table and I told him we needed to make a memory.  Have you ever done that?  Have you ever stopped what you were doing and said to yourself, “I am going to remember this for as long as I live.”?

I did it when I was a kid.  One time all I was doing was walking down stairs.  But I still remember it.  I remember the carpet on the floor. I remember the latch hook rug hanging on the wall in front of me. I remember it was summer and the downstairs was cooler than the upstairs.  I remember I was going to see my dad who was watching t.v.  I brought him a Pepsi.

It’s stupid.  A memory of nothing.  But it makes me feel alive.

So today we made another one.  Not of the garden but of the three of us sitting at a table, surrounded in nature, doing not much of anything but being together.

Remember this.


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Red

Well…I managed to escape most of radiation being pain free for four weeks.  But now.  Today. My entire chest is RED.  Like a bad sunburn.  Yikes!  I couldn’t believe it when I looked in the mirror this morning.

I’ve been itchy.  I was told not to scratch but I caught myself sleep scratching.

I cut my nails extremely short and am trying to refrain from the urge even in my sleep.  I do not need an infection at the home stretch.

I have decided that after my last treatment on Wednesday, The Husband and I may indulge in some all you can eat sushi.  Sounds good, no?

We will see how I feel that day.

And yes, I am still nauseated on a regular basis.

I decided a couple of weeks ago to push past the nausea.  I get more sore in my body if I succumb to it and lay in bed all day.  Today we will find things to do.  It’s just better overall to keep busy.

I was really, really worried about what the radiation was going to do to my skin but it is still not too bad.  I use pure aloe vera mostly.

I also got Emu oil which is rendered fat of Emu birds which makes me feel TERRIBLE! But it is very soothing.  Last time I saw my Radiation Doc he gave me calendula cream to help with the itch…it doesn’t do anything for the itch but it is nice all the same.

Keep on keeping on.  Looking to Wednesday.


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NaBloPoMo #1: Still Getting Treatment

But wait…wasn’t radiation supposed to end today?

Why yes, yes it was.  It even still says so on my online account.

But my doctor changed my program from 25 days to 28 days and no one told me until last week.

You should have seen me with the nurse that day.

She’s all “So your last day is November 6th.”

And I smile and confidently say, “No it’s not.  I’m done on November 1st.”

And she disagrees with me and shows me that the schedule was changed early on.

“No, no, no.” I say, “On my first day of treatment they gave me the schedule and said it was to be my bible.  And the last day is November 1st.”

The nurse looks at me sympathetically and says that whoever gave me that schedule was mistaken.

“Well, that person is really mean then.” I said, “and this is unbelievable”.

She apologized profusely.

Then my doctor came in and asked how I was doing and I told him I was really angry at the moment and explained why.

And then he explained that after my simulation and CAT scan that I had “a lot of healthy tissue” and he decided to give me a lower dose spread over 28 days instead of 25.  He apologized for not letting me know.

W….T……F?!!!!!!!!!!!

I kept it together in the office.  Although you know how normally, you as the patient wait for the doctor to get up and leave or dismiss you?  Yeah.  That didn’t happen.

At some point, I stood up and said, “Are we done here?” and I left.

My husband was in the waiting room.  I told him about the extension and how no one had bothered to tell me.  I still kept it together.  But when we got to the car I cried.  I sobbed.  I yelled that I hated all of this and that I hated every one of THEM and that it took a certain kind of sicko to do this to a person.

Am I really mad at my doctor?

Well, yes and no.  I know he is doing his job and there was obviously a communication breakdown.  I don’t think it was intentional.

But people, I have been running a six month marathon of pain and illness brought on by treatment and while the finish line was in my sights, it feels like the “team” picked up the FINISH banner and moved it back on me by three days.

And that SUCKS.

I remember my first full marathon.  It was the Nike Women’s Marathon in SF.  My family met me at my last mile and they ran with me.  My youngest was in a stroller.  My eldest was six and so happy to run with his momma.  But all I could see was that finish line ahead. It felt like that last mile would never end.  And let me tell you, if at the last second, they had moved it back three more miles, I think I would have screamed bloody murder!

And this is what just happened to me only instead of 26.2 miles, it’s been over six months.  I am just beside myself.

I am still miffed by this turn of events and today, the day I was supposed to be done with nauseating radiation was a bitter one for me.

Very bitter.

And I am tired.  So tired.  Unbelievably tired.  It’s not just physical (though that would be enough) it is emotional as well.  I am tired.

I am not the only one.  There is a note of irritability throughout our household this week.  It was supposed to be over today and it is not.  All of us are so over this treatment phase.  We need a break.  We need a vacation.

And everyone else is tired of this too.  If I weren’t so tired, I might feel a little lonely.  But then I get a card or a note or someone drops by with a gift or a kind word.  How can I be lonely?

This is all just really hard and we are just exhausted.  Tired of cancer.  Tired of fighting.  Tired of feeling sick.  Tired of wondering if it’s even going to work.  Tired of feeling like I need to be some kind of Pollyanna when I am anything but that.  This whole thing just stinks.

And the wort part is that there are still three days left.


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Keeping Busy

Radiation is still kicking my tush.  I am still nauseated on a regular basis.  I am also exhausted most of the time.

However, the show must go on.

My Mother in Law or MIL was here in April when I had surgery.  My husband bought some plants for her and my youngest to put in our garden bed.  I have no recollection of any of this happening.  I assumed that there would be a variety of vegetables but it turned out, they planted tomatoes.  Just tomatoes. Lots of tomatoes  Mostly cherry tomatoes because that’s what the little guy likes.

Well, my little guy watered that garden all summer and did he ever get a bumper crop!  We had mounds and mounds of little tomatoes all summer.

We thought we were done with tomatoes a week or two ago.  Apparently this is not so.

Here is yesterday’s harvest:

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My husband is thinking of making sundried tomatoes with this batch.  I made chilli with the last batch.  He made a huge vat of tomato soup with a couple of the hauls.  We have been up to our ears in tomatoes!

The little lad is so over it.  He is tired of picking tomatoes.  He stopped watering a while ago and we still are getting huge hauls of them.  He claims he will soon rip the plants out by their roots!  I have enjoyed them.  They make me happy.  And they are so sweet and delicious.  And my little 8-year-old did this all by himself with some help from grandma in the beginning.

It’s been very cool.

And speaking of fresh fruits and veg, we joined a CSA of organic fruits and vegetables.  It’s delivered to our door every week and it has been an adventure.  Here’s a picture of one of the deliveries:

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We used every bit.  Although I must admit, I am not thrilled about squash.  It’s nobody’s favorite around here.  At one point, we received a butternut squash.  I was baffled and intimidated.  The husband chopped it in half for me and I roasted it with some agave syrup drizzled on top.  Then we didn’t want to eat it.  So I found a recipe and purreed it into soup which we kind of half enjoyed.  I made a salad with the lettuce, carrots and heirloom tomatoes and that went over much better than the soup.

I still had half a roasted squash left so I processed a puree and made squash muffins:

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The little lad decided they needed frosting:

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And after all of that, we unanimously decided, that we as a family, don’t care much for butternut squash.  Lord knows we tried.

Lastly, in an effort to de-cancerify our home, we’re trying to get rid of our nonstick cookware.  That coating is toxic, you know, especially if it has been scratched.  We had already bought a small cast iron skillet and The Husband ordered a bigger one on Amazon.  We knew it was going to be big but not this big!

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Look at that pan!  It’s ginormous and its also quite awesome.  You can make a stir-fry that lasts for a week in that pan.  And it was $39!  I love it.  But I don’t love cleaning it.  I am learning though.  Cast iron is not quite as convenient as non-stick but it does the job.  It’s like we’re pioneers!

We are also trying to phase out all of the plastic stuff in the kitchen.  Did you know when plastic is heated, it leeches chemicals onto your food?  I did.  But I thought I was good as long as I wasn’t putting plastic in the microwave and reheating.  But think about it, hot food on a plastic plate is also a danger.  My kids everyday plates have been these Make-it Plates that they have been making since preschool. You can see my son eating his not so delicious muffin on a Make-it plate.  I love Make -it plates.  They remind me of my boys at every age.  They make me happy BUT they’ve been retired to a box in the garage.  Got to lose the plastic if you want to be safe. Right?

This is what I’ve been up to during radiation.  Besides sleeping and eating and a great deal of t.v. watching.  I thought this step would be pretty easy but it’s still quite challenging.  Thank you for keeping us in your thoughts and prayers.  We still need them and we still need you.