Waiting for Savasana


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Be Kind

The old medicine made me have to have yet another surgery in June.  A polyp that was thankfully benign.  The new medicine makes me anxious and achey.  It makes my mouth hurt.  I could write a million Facebook postings saying only that my mouth hurts but where is the fun in that?

I soldier on.  It is not a huge burden.  I laugh.  I smile. I drink green tea.

Because it’s still worth it.  Every minute.  Every second.  There is still so much joy.

So when you see me, be kind.

Just send me love.

I am here.  I can breathe.  Everything else is inconsequential.

Just love.

This.


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Hello!

Well, I tried Arimidex after having my ovaries removed last October.  I lasted 4 months on the stuff.

My joints, especially my neck ached like I was 90 from the first week I began Arimidex.  But I could live with that.  After about a month, it seemed to get better.  It wasn’t fantastic but it was manageable.  I asked my oncologist about pain meds.  I had tried Aleve, Motrin and Tylenol.  She said nothing would make much difference except exercise.  So I tried that.  I keep trying that.

Anyway, I was cruising along and managing the pain when once again, same as Tamoxifen things started to kind of explode.  My hands got puffy, my face got puffier.  I could handle that though.

By January, my stomach had started to puff out. My whole abdomen really.   I thought it was weight gain and cursed myself.

February brought fatigue, brain fuzz and depression.  Fun! Fun!

Then I started to have asthma attacks again.  That sucked.

It’s hard to keep up the exercise when you can’t breathe and your feet hurt and your limbs are swollen, you know?  It’s not easy.  It’s a viscious circle.  It’s exhausting.  Being in pain all the time is absolutely exhausting.

And then about two weeks ago, my tongue swelled.  It filled my mouth.  I kept biting it.

And that’s when I looked up Arimidex symptoms.

I had not researched side effects before, even though my pharmacist gave me two pages of them every time I filled the prescription.

Why?

Because I was worried about self-fulfilling prophecy.  I didn’t want to give myself symptoms in order to excuse myself from taking the medication.  That makes sense, right?

Because I really wanted Arimidex to work.  I really, really want it to work.  It’s a very effective medication.  It starves cancer.

For me, even the nastiest side effects outweigh the risk.  Seriously, a little asthma is better than the cancer getting into my brain, my liver, my bones and my lungs.

At one point, I had chills and body aches and a fuzzy brain and I thought, Am I getting the flu or is this the medication?  And I realized how much that sucks.  That the last four months, I have felt like absolute crud because of a medication that is supposed to help me fight cancer.

I am guessing I lived with cancer a long time before it was discovered and I felt fine but the treatment is grueling.  Just terribly grueling.

It’s ridiculous.

Anyway, it turns out the swollen tongue meant I was having an allergic reaction.  A severe allergic reaction and we can’t have that.

Your tongue is a very important organ when you think about it.  It’s almost impossible to function when it is swollen to twice it’s normal size and is painful to touch.

I stopped the medication a little over a week ago.  I see my oncologist on the 20th.  There are more options left to try.  I am hoping we can figure something out.

Because without the anti-hormonals like Tamoxifen and Arimidex, my options are green tea, exercise and diet control which I am totally ok with but…

I worry green tea won’t keep the cancer at bay.  I worry a lot about this.  I worry about worrying.  I worry.  I just worry.

Although there is good news on the green tea front,  I had my DNA sequenced at 23 and Me before health reports were banned.  According to them, I have the genetic code that has been shown to respond positively to green tea to prevent proliferation of cancer.  Yes, there really have been studies done on this and I lucked out with a good code!  Go me!

And the weirdest part to all of this, I look fairly healthy.  I’m still chubby (in part from swelling) but my cheeks are rosey, my hair is back in full force.  It’s just a rage of curl.  I look much better than I did a year ago.

But the neuropathy still makes my hands and feet hurt.  I still can’t clap.  It hurts.  My joints still ache horribly even after a week off of the medication.  I feel so old.  I feel so sick.  But I just keep pushing forward, because it’s all I can do.  And as my dad would say, it beats the alternative.

I guess I better go put the kettle on, until March 20th comes around, I’m going to be drinking a lot of tea.


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Time Flies

Hey!  I’m here!  I’m still alive!  Whoopie!

I’ve been busy these last few months.  Let’s see, what’s been going on?

I decided to stop taking Tamoxifen back in August.  I just could not do it anymore.  For one thing, I could barely see out of my eyes because I was so swollen  they were almost shut.  I also could not breathe.  And I spent most of my time sleeping.  It was really strange and awful and finally I decided that I would rather be dead than spend the next ten (TEN!) years taking this gnarly drug.

I knew that stopping tamoxifen would mess with my survival odds.  I ended up going to this site called Cancer Math and plugging in my stats.  Guess what?  My odds of survival stink anyway.  Too many positive lymph nodes.  It’s scary to see it on the screen.  That I should possibly be dead already but there it was.

But here was the interesting thing, stopping Tamoxifen according to CancerMath would take 6 years off of my life.  But getting my ovaries removed would add the years back.

I had my blood tested in July and I was testing post menopausal.  Chemo messed up my ovaries bad.  Fried them in fact.

So I decided to get my ovaries out.  I had a baseline ultrasound this summer that found a nasty looking cyst on my right ovary anyway.  I’m done having kids.  The ovaries are kaput anyway and if it really makes my odds of survival better, why not?

So I had the surgery in September.  It was fairly easy.  Two tiny incision on either side and a tiny hole in my belly button.  It was all good except that for about eight days after surgery, it felt like I was being stabbed on the left side of my abdomen whenever I moved!  Stabbed hard with a twisty knife.  If I was reclined, I was absolutely fine but if I sat up or moved at all, the pain shot to a strong NINE.  It was rough.  Pain killers didn’t even touch it.

So I watched a lot of tv.  I binge watched Scandal which I found to be mostly good.  I wish Olivia Pope had more facial expressions than *constipated* but otherwise, it’s a good show.

I swear I could not even stand up for more than a minute.  It was really, really unpleasant.

And then one day, I was suddenly fine.  Almost no pain at all.  My husband thinks there must have been some internal glue that dissolved over night because it was a miraculous recovery.

Still, I spent 10 days inside my house.  Seriously.  I did not set foot outside of my front door for ten days.  And to be honest with you, it was kind of nice.  I understand now why people become agoraphobic.  It’s nice to just be in your house, in your pj’s with people coming to visit you.  It was pleasant.  Really pleasant.  A girl could get used to just staying in the house.  What the heck is wrong with me, right?!

It was different from getting chemo.  The day after chemo, I’d have to go back for my neulasta shot.  Then there were check ups and all that.  I was out and about with chemo.  With this surgery, it was nice to just stay home.  really nice.  Almost too nice.

Anyway, back to the ovary removal.  I was concerned that there would be more menopausal symptoms with the ovaries gone but it seems they were truly, truly fried because, if anything, my symptoms have improved.  Less anxiety, less hot flashes.  It’s one of the best things I’ve ever done in fact.  I feel pretty good.  I feel more like myself than I have since I was 12 and got on that hormonal roller coaster.  It’s pretty awesome to not feel cray-cray every month.

And I am trying a different anti-hormonal drug, Arimidex.  I have had some joint pain but it is easily fixed with Aleve.  Other than that, I feel pretty good which is a nice way to feel especially after the 8 months of feeling like a truck had run over me on Tamoxifen.

Quality of life matters to me.  I am not being glib when I say I’d rather be dead than spend 10 years feeling like something my cat bashed around and then pooped on.  And I was useless.  On Tamoxifen, I was an invalid.  Who wants to be that?  Not me.

Especially if this cancer free stuff is simply a respite.  Because you know what the first line of defense if I end up with cancer in my organs or bones?  Tamoxifen.  I’m not going to torture myself when I actually have the potential to feel good.  Does that make sense?

A lot of other stuff is going on.  We went to Disneyland!  I assistant directed a play!  I got a new preschool gig! I found more of my shoes!  But I’ll have to wait until later to tell you about it.  I have to go make this Cheeseburger Casserole.  It looks yummy and I am intrigued by the pickles in the ingredients.

I will let you know how it turns out.


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Boys Are Back

Waffle and Dr. Warlord  (their camp names) returned home from camp today.  Those were the names they chose for themselves and used all week.  Both boys had huge smiles on their faces.  Both boys gave the camp 10 out of 10 stars.  Waffle’s only gripe was that the first night Warlord got homesick and ended up sleeping in the teen cabin with him.  Eventually Warlord started sleeping in his own cabin on the third night.  Waffle claimed annoyance.  Dr. Warlord said it was all about love.

They told us that there was one part of the camp where they talked about hopes and wishes and everyone cried, including them, but they said it was a good cry.

For two boys who were extremely reluctant to attend this camp, they felt pretty happy about the whole experience.

We picked up Waffle’s, class schedule this week since he was away at camp.  What a social gathering!  It was nice to see everyone and weird to be there without children.

My boys are already back to their computer games but I think after that we shall play a game or two and maybe I can sneak in a snuggle.  It’s good to have them home.


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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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