Waiting for Savasana


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Boys at Camp

This is the week the boys went to Camp Kesem.

Kesem

This is a magical place for children who have had a parent with cancer.  It’s a place for them to just be kids and enjoy themselves.  We met the counselors in May at their informational meeting and the boys were excited to go.  But the night before, they both were a bit unhappy about being gone for five nights.  We assured them that it would be a good experience for them and a chance to bond with other kids going through the not so fun experience of having a parent with cancer.

We dropped them off on Sunday and will pick them up on Friday.  This is the inaugural year for the Santa Clara University Chapter so they kept the camp small at less than thirty campers.  There are 16 staff members so the ratios are excellent.  I have seen a few pictures and it looks like the kids are having a good time. My younger son, I think I will call him Ferdinand, was a little homesick the first night.  The counselors checked in with us and we helped them with ideas for easing his homesick feelings.  So far, they seem to be working.

There are many branches of Camp Kesem throughout the country and it is a completely free camp.  If you know of children who have a parent who has been through, is currently going through or has passed away from cancer, please send them a link to Camp Kesem.

It’s been really quiet in our house.  Too quiet.  I miss those boys.

But I know they are having a good time and that this is a great experience for them.

My first thought when I was diagnosed was for my boys.  I was so concerned for them.  I actually felt like I had failed them as a parent by being diagnosed with breast cancer.  I was so down on myself about what my illness would do to my boys.

And we had a rough time.  We bonded as a family but it was all still very rough.  The hardest thing for me is not being able to be the active and energetic mom that I used to be.  I know we all do the best we can but my best is not great at the moment and not at all what I envisioned for them.

And one thing I have learned is that having a parent with a serious illness can make you grow up really fast.

And that is why I am so thankful that an organization like Camp Kesem exists.  I hope my boys have taken full advantage of the opportunity to just be kids and enjoy themselves.

Because this stuff is really hard when you are a little kid.  And everyone has commented on how supportive my boys are and how well they have handled my illness, but that in and of itself is a concern when you think about it.  I mean, it’s great that they have been so awesome but it is hard to see them acting so grown up.  It’s not normal to have to grow up so fast.

But it is a reality for so many kids today.

I just know that this cancer stuff was never in my game plan.  When they were babies, I never once even entertained the thought that something could happen to me.  I was just trying to keep the two of them alive, you know?!

I miss those two so much and I don’t like the quiet that has fallen over the house.  I can’t wait for them to come home to us.

But I hope they are having the time of their lives.

 

 


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Tamoxifen Blues

I am back to feeling pretty crummy most of the time.  I had stopped Tamoxifen before my last surgery and felt better almost immediately.  I started it back again at the end of May.  And now it is August and I have taken that white pill every night for two and a half months and I am back to feeling awful.

The first week I was ok.  Then things started to hurt.  Then I started gradually to wheeze again.  And then there was a bit of malaise which turned into fatigue which turned into exhaustion.

I feel not great all the time.  I feel like you feel when you are about to get the flu.  Kind of achey and run down.  Only the flu never comes and I just keep feeling lousy.

I am also wheezing again.  I have difficulty doing anything remotely strenuous.  It’s a challenge to just get off the couch without being short of breath.

I am also quite un-Tiggery most days.  I’m just back to being an Eeyore.

And I am supposed to do this for ten years.

I don’t think I’m going to be able to do that.

And I know there are people who will say that having a recurrence is much worse than Tamoxifen side effects and I agree.  To a point.

There are plenty of people who take Tamoxifen for the prescribed years who still end up with a recurrence.  It’s not like Tamoxifen is the magic answer.  All Tamoxifen does is lower my chances from like a 20% chance of a recurrence to a 15% chance.

It doesn’t work for a lot of people.

So I’m taking this drug that increases my chances of endometrial and ovarian cancer, it increases my risk of blood clots and it makes me feel like a mildly stinky pile of poo most of the time just to cut down my very likely chance of recurrence by a mere 5-8% points.

I don’t know if it’s worth it.

What would you do?  Would you spend whatever time you have left taking a drug that *might* prolong your life and/or might give you cancer in other places and at the same time has some really gnarly side effects like the ones mentioned above?

Or would you rather spend your respite feeling good?  Feeling human.

Because guess what they give you if your breast cancer recurs?

Anti-hormonals like…you guessed it Tamoxifen.

Right now.  I have no energy.  I have shortness of breath and I ache everywhere.  I don’t feel like I am really living any kind of life.

And I keep going back to the fact that all that time when I had cancer and didn’t know it?  I was running marathons and half marathons, I was working a job that required a lot of energy and I was actively raising my boys.  I felt great.

I felt great while I had cancer.  And now I am doomed to ten years of feeling like I have the flu?  What’s the freaking point?

If they were able to say to me, “If you take this drug for the prescribed time, your cancer will not come back. 100%”  I would be more apt to keep taking it.  But nobody can tell me that.  Nobody.

It’s all, well MAYBE it will work…it works for some people.

And I keep taking it because I am scared.  Because I am hoping that it will do it’s job and keep the cancer away.

But what is the point of being here if I am just a lump on the couch?

I am tired of feeling badly.  I am tired of this.  I did what I was told.  Surgery, chemo, radiation and anti-hormonals.  I have not felt good in a year and a half.  I am tired of being a patient.  I am tired of feeling horrible.  I would like to be able to breathe again.

But I don’t want to die.  And I really don’t want to die the horrible death that is death by breast cancer.

Although, I probably will anyway regardless of what I do.

And I can talk myself into circles of this for days.  And I keep taking the meds.  Even though they make me feel absolutely miserable.

The fear doesn’t end.

I don’t know what I’m going to do.


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My Poor Neglected Blog

I just haven’t felt like blogging.

I started radiation therapy this week.  It’s very weird.  The technicians are nice.  One guy tells corny jokes.  Everyone seems nice.

I hate it.

That machine is a big monster.

Tuesday I left treatment feeling nauseated.  Wednesday morning I threw up.

“Oh no!” they all exclaimed, “It couldn’t be from the radiation.  That’s not a side effect.  You must have a stomach bug.”

Yeah, I call BS, I don’t have a bug.  I did some research and apparently, nausea can in fact be a side effect.  It’s just not a common side effect.

I was nauseated all week.  And now it’s Saturday and I am slowly feeling better.  And hmmm… no radiation today.

Sometimes I feel like every doctor I meet is trying to pee on my leg while telling me it’s raining.

Let’s see how I feel tomorrow and compare it to how I feel on Monday after my next treatment and see if this is just a bug.  Hmph!

When I went for the simulation, they made me this cool moulded pillow for my head and arm.  So that was cool.  It has my name on it.

I got a couple of dot tattoos and many people have written on me in extremely permanent marker and I have bullseye stickers on my torso that will not come off no matter how much I shower.  It’s all to keep me lined up so the beams hit me in the right places.  It makes me feel like a piece of meat but whatevs.  I’m a big girl.  I know who I am.  I’ve been through worse.

I come in and lay on the table and put my head and my arm where they are supposed to go and then the techs move me around until I am in the right spot.  My arm goes over my head every time.  The arm that lost most of it’s lymph nodes and a big chunk of armpit in April.  That arm.  Over my head.  It’s not the most pleasant way to be.  The first two sessions, I had to be in that position for an hour.  I started whimpering at one point my arm hurt so bad.  But I stuck it out.  You know what trained me?

Bikram Yoga.

I kid you not.

Bikram taught me to withstand extreme heat and extreme pain. Just breathe into it and you get by.  Thank goodness for Bikram.  Bikram taught me never to give up and to find peace within discomfort.

And yes, I am still upset that I may never get to do it again.  Angry face.  Angry face.  Angry face.

People at risk for lymphedema should avoid extreme heat changes.  Bikram is done in a very hot room.

Screw it!  I will do it again.  I will, I will. Someday.

But back to radiation.  In and of itself , it’s not terrible.  I made it through week one.  The nurse recommended using clear aloe vera gel on the areas because I AM going to get burned.  It seems to be doing the trick for now.  Many people recommend Emu Oil which is rendered fat from Emu birds.  I feel guilty using it…but it’s very soothing.

I keep telling myself that this radiation thing is something I need to do.  I’m not happy about it one bit but I’m not happy about being diagnosed with breast cancer at age 40 either.

But it’s like I was saying to my son earlier, the worst part of all of this is that even after my diagnosis, I FELT FINE.  It’s the treatment that is really grueling and painful and horrid.  It’s the treatment that made my hair fall out and has kept me home bound and often bedridden.

And there are no guarantees, no promise of a cure.  Just hope.

And now I drive my butt to the doctor’s office every weekday to lay in this stupid Darth Vader looking machine that buzzes at me and radiates my body and gives me nightmares.

All I can think is, this had better work.

This had better work alright.


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I couldn’t help myself!

I signed up to do a 15k in January.

marathon_beth_sj_rocknroll

That’s me!  This is what I used to do.  And I loved it.

My husband and son are scolding me.  They say January is too soon.

But there is hot chocolate involved and Run Girls!

I love my Run Girls.

And I can’t be still.

I can’t let this get me.  Studies show that women who have breast cancer and walk for just 30 minutes a day, six days a week, reduce their chance of recurrence by something like 50%.  I read that in “Anticancer” by David Servan-Schreiber.  I am still reading it actually and I highly recommend it for anyone.  Lots of advice for preventing recurrence and preventing GETTING cancer in the first place.

I mean, you can say I had the genetics for this because my biomom had breast cancer last year but I got it 18 YEARS before she did!  It isn’t just heredity people, it is a combination of many things.

This does not contradict my Angelina Jolie rant, however if there are people out there who have done actual research to help me keep this cancer away, I’m going to do my best to follow their advice.

Have you heard of Jane Tomlinson?

She was given six months to live after being diagnosed with Stage 4 breast cancer.  So you know what she decided to do?  Run marathons.  She lived seven more years and started a charity and raised a whole bunch of money to help people.

image from dailymail.co.uk

Wasn’t she beautiful?  Now that is living life.  That is doing it.  Someone should make a Nike commercial about her if they haven’t already.

Right now, I can barely get off my couch.  Yesterday, I actually rolled off the couch onto my hands and knees on the floor and then pushed myself up to stand because I am just that sick and out of shape.

But I refuse to stay this way.  I refuse.

I think I will actually start with a 5k Turkey Trot and move onto that 15k in January.  I may walk the whole thing.  I don’t care.  My friend said the cut off is a 15 minute mile and I think I can do that.

And if they pull me off the course, so what?!  At least I’m out there trying.  Not giving up.  I’m ok as long as I get my hot cocoa at the end.

I won’t give up on life, on love, on friendship and family.  I won’t give up on hope.

I won’t.

I refuse.

And anyway, I am getting pretty bored lying on my couch drinking apple juice.


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A Patient Patient

You know I have been waiting forever to use that title.

I finished round 2 of Taxol and it was just as rough, if not rougher than round 1.  Blergh.

My oncology nurse told me that they are finding that younger women feel more pain from dose dense Taxol, perhaps because they have younger nerves.

I have no nausea just a lot of pain.

Two days ago, I told my husband that maybe I wouldn’t do round 3 and 4.  I was feeling that bad.  He got worried.

As of today, I will drag my butt to round 3 on Tuesday.  For him.

I am also developing neuropathy despite icing my hands and feet during chemo and taking mega doses of L-glutamine.  It is difficult to walk.  Pains and numb spots in the bottoms of my feet.  Good times.

I am finding it makes it difficult to write thank you notes.  I wrote two yesterday and my hands really hurt.  So that’s my excuse for not writing anymore.

I am trying to be normal but I am finding I need to be patient with myself.  I do not have a lot of energy and I am in a lot of pain.  It makes me a little grumpy.

Last night my little one and I were swinging on our glider swing and we noticed these:

IMG_1483

They are pomegranates.  We have a bush?  Tree?  It looks bushy to me.  Whatever.  We have one in our yard.  We also have a lot of squirrels because there is a large oak tree next door.  Every year, we get a crop and every year, the squirrels get to them before we do.  This year, there appear to be several that are out of reach for the squirrels.  The little one and I got very excited and Daddy came out and took the picture.

We had a great time snuggling in the back yard chatting away.  Until I was told I was hated because I won’t allow him to get a guinea pig.  Oy!

Whatever.

Still not getting a guinea pig…and now there is a price to pay to get back in my good graces.  I told him he has to do five nice things to negate the ugly.  I’m thinking we will start with breakfast in bed…

Here is me with my chubby steroid moon face.

IMG_1476

I don’t know what I can do about it.  It’s the steroids and the Taxol.  They are doing a number on me.  The more water I drink, the puffier I get.  I was given some lasiks to help get the fluid going.  There’s not much more I can do.  This is what I mean about being a patient patient.  I don’t even recognize myself but there is really nothing I can do about it.  I just have to keep on keeping on and get through it until I am a patient no more.

My hubby is so cute.

I’ve mostly stopped looking in mirrors.  Except to draw on my eyebrows, which is something I am surprisingly pretty good at.  Even my husband has commented on my eyebrow skills. And one day, my eldest asked me if my eyebrows had grown back!  I’m that good.  I am quite proud of this because I know people in real life who can’t draw on their own eyebrows (now I want to take them in a bathroom and help them, perhaps this will be my new mission in life…I am looking for one, you know).

Having cancer does not make one an angel or a saint. Snarkety-snark-snark-snark.  I actually wrote a post about that very topic based on my own personal experiences but it is in draft mode because I couldn’t express myself accurately.  Basically, you are just you, with cancer.  I’ve learned this the hard way.  Mostly, I am still nice albeit grumpy but I am no angel.  I can snark with the best of them.  I can also still stand up for myself.  I have not changed one bit.  And for me, that is a very good thing.

At the beginning of this, many of my friends old and new kept calling me feisty, as in “You are the feistiest friend I’ve ever had, you can beat this!”  I think that is saying a lot.  It hasn’t changed and I am feisty.  Ask my children.  Ask my husband!  Ask anybody.

But I am trying to be a patient patient.  Patience was unfortunately never one of my strengths.

Next time I will write about my adventures so far in the world of Radiation Oncology.  But based on our wacky experience on Monday, I am going with the doctor my oncologist initially recommended. Meeting him tomorrow. I hate to leave you hanging (because it is a good story) but it is the middle of the night and I need to try to get some more sleep.


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Update Taxol #1

I get Taxol today.  It’s made from Yew trees so it’s natural, right?  Ha!  Natural.  Lot’s of poison comes from nature.  But I will try to think fondly of Yew trees.  They may save my life.

Courtesy of Google images and wikipedia

Courtesy of Google images and wikipedia

Pretty eh?  Peaceful.  Lifesaving tree.  Mr. T may hate trees but i do not.  No sir.

I had to take 5 steroid pills at once last night.  I have been stressing about it for weeks.  Sheesh. 1 steroid pill 2X’s a day turns me beet red.  What the heck was going to happen?

Turns out nothing.

I did what my doctor told me and took an Ativan with the 5 FIVE steroids and I watched tv.  And then an hour later, I took another Ativan as prescribed and then I slept 5 hours.  And now I am getting ready to go.  I have ice packs to put on my hands and feet to try to protect them from neuropathy (tingling and numbness).  I have all kinds of medication and alternative stuff like vitamin B’s and L-glutamine which is also supposed to help with neuropathy.

I had blood work done yesterday and I got the results last night.  My blood is all kinds of messed up but apparently still good enough to get chemo.  Surprisingly for the first time, my blood sugar is elevated, which I find disturbing.  Never in my life have i had elevated blood sugars.  Oh yeah, and I havesome”ToxicGran” white cells which if Dr. Google is right explains why I am so achey and why it feels like every tissue in my body is inflamed.  But I will defer to my Dr. on all this.  She went to Harvard and she’s been in this biz for thirty years.  I trust her expertise.

I am getting “dense dose” Taxol.  It will be 4X’s every 2 weeks.  I asked my Dr. yesterday about people who get weekly Taxol because i heard the side effects are less with the lower dose.  She told me that if I did it weekly, it would be for 12 weeks.

What would you do?

4x’s over 8 weeks or 12x’s every week.

I’m sticking with dose dense for now.  I want to get this part over with.  4x’s over 8 weeks is the plan.

I hate all this.

When I feel sick IRL, I take vitamins.  I usually feel better.  I can’t do that now.  No multivitamin, certainly no Emergen-c.  Only approved vitamins.  No Antioxidants during chemo.  It defeats the purpose.  Isn’t that crazy?

Yesterday, between getting blood work and seeing my Oncologist, I walked over to a mall.  Very proud of myself for making it there and back without falling over.  Got a blister on the bottom of my foot from my flip-flop though.  Anyway,  There was a sale.  I got two cute skirts.  Size L.  Because of the steroids, I have now gained 10 pounds since beginning chemo.  I weigh more than I ever have besides when I was pregnant.  I don’t really care. Yes I do.  I’m bald.  Why shouldn’t I be chubby too.  I am channeling Molly Weasley and she is a bad ass.

Courtesy of google images

Courtesy of google images

So I bought 2 skirts.  I was wearing my curly short wiglet with a cute hat.  I am all about the cute hat.  The lady checking me out asked for my driver’s license and commented, “Nice hair” ( from my picture: curly, long, dark…awesome).  I thanked her.  Then I leaned in and said, “I’m actually bald right now.” and I smiled.  She looked at me and said she would have never guessed.  She got a little teary.

“Oh no. Did I bum you out?” I asked.

“No,” she said, “Thank you so much for sharing that with me.”

And we smiled at each other.

Some people hide it all.  I can’t.  I never could hide who I am.  It’s just not me.

Wish me luck today.  I am expecting to be achey by Thursday.  Some people have described Taxol pain as “bone crushing’. I gotta stay off the internet, people.  Somebody stop me.

Ok, here goes nothing.


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No Pollyanna Here

I am hurting over here.  There is no way to sugarcoat it.  Every treatment seems to bring new challenges.  Each one is worse than the next.

I am barely functioning.

The boys are at day camp and doing well.  I’ve been lovingly calling them my daycare kids.  See, I have always been home for them at least part-time.  My kids have had a regular babysitters through their lives but mostly, especially in the summer, they are with me.  And that is how we like it.  That has been our plan.  Do I even need to say that this is not a judgement on others?  Because it totally isn’t.  I made a choice long ago and this is how I like my life.  Hanging out with my kids in the summer is one of my favorite things ever.  We cook, we garden, we go on minitrips to the beach and other glorious CA locals.  We have nice summers.  We watch tv.  We read books. We swim.  We roast marshmallows. They play tennis.  We ride bikes.  We hike.  We play.  Our summers are usually idyllic. And I am fully aware of how lucky I am to be able to spend the last 12 summers with my children.

And now I am barely hanging out with anyone at all.  I’m in my room, feeling like crap.

Extended care.  My kids are signed up for Extended Care at many of their camps.  Because Extended Care beats hanging out with hairless, nauseated, barely able to lift her head up sick mama any day of the week.

No cookies are baking in the oven.  The kiddie pool got put out on the street.  There is no fun happening at our house unless Daddy is facilitating it and Daddy’s got to work.

I am so very sick.  No kid needs to be around that.

I have to say though, both boys are exhausted.  They come home TIRED.  We chill in front of the tv for a bit and then it’s bed time.  Then they get up and do it all over again and I stay home in bed missing them.  Those two boys I love so much.

Feel sorry for me, not them.  So far, they are ok.

This summer, my boys are making comic books, going on animal adventures, learning to fish, making spaceships, doing science, having fun with physics. Heck, the oldest is even going to Band Camp.

These boys are busy.  And yes, it is costing us some dough but it’s cheaper than a nanny when you break it all down and my big hope is that those two monkeys can escape this summer relatively unscathed by my illness during treatment.

And all of you who are like me.  Don’t judge the Daycare Kids.  I don’t.  But I never did.  Sometimes, it’s the only thing a Mama can do to keep everybody sane.