Correcting Error in Treatment Plan

Last week I wrote a post about what my chemo treatment was going to entail and I got confused by one of the drugs.  I listed that I would be on Taxotere but will in fact be on Cytoxan (AC not AT).  I have updated the original post with the correct information.

Keeping it short today.  I’ve had a long, emotional weekend and I’m tired.  More posts tomorrow.  Have a good week!

A Is For Angry

“Anybody can become angry – that is easy, but to be angry with the right person to the right degree and at the right time and for the right purpose, and in the right way – that is not within everybody’s power and is not easy.”  Aristotle 

This week I have been angry.  I think it all started with my overwhelming day on Monday when I had my eggs retrieved and then had a very long oncologist appointment where I set up my chemo date.  Then I was talking to my landlord who was asking how I was.  I very casually and happily (a defense mechanism) let him know that I was healing well and would be starting treatment soon.  He then proceeded to tell me that chemo was no good and that it was just poison and not necessary.  I tried to tell him that I think my doctors knew best but he was insistent, to the point of overstepping his bounds.  I got angry, told him I couldn’t talk anymore, got into the car with Ken and drove away.  I was livid!!!!!!!!!

It all went downhill from there.  All week I have been snapping at Ken and my family who don’t deserve to be snapped at.  For example, this morning I yelled at Ken because I though he wasn’t helping me find my notebook which I had misplaced.  I mean, really.  Stupid shit like that.  Ken and my family been wonderful and supportive but the smallest things have set me off.  What I perceive to be the wrong tone or a disagreement has sent me either into a rage or completely closed me off.

Anger can be a good thing for me.  I often turn it into productivity.  It lights a fire under me and I get inspired, creative and focused.  I do some of my best work after something or someone has pissed me off.  But then there’s the flip side.  When I’m angry I can be hurtful to the ones I love the most.  My fuse is short and my explosion is thunderous.

So what do I do?   I have every right to be angry right now.  I have cancer and I shouldn’t.  It sucks completely and totally.  It is controlling my life; my time, my space, my body, my work, my creativity, my focus, my sense of control, my sense of humor, my sex life, my private time (what private time?), my personal space, my dignity, my emotions, my sanity…   But the anger has affected not only myself and my mood but also the people I love.  How do I deal with anger when angry is exactly how I should be feeling?  How am I going to get through a year of total suck when oftentimes I will be really fucking angry without damaging relationships?

3 Weeks Post Mastectomy: The Weirdest Side Effect

I can’t believe that it has been 3 weeks already since my surgery.  I’m healing well but still sore.  I can lift my arm almost all the way up but when I try to go all the way, it feels the same as when you try to do a split and can’t get there.  That stretchy, pulling sensation and tightness.  That should go away soon.

But with all of the soreness and pain, there has been one side effect that has thrown me for a huge loop.  Whenever I get the chills or goosebumps, my goosebumps under my arm on my mastectomy side hurt.  Like really hurt!  It hurts to get goosebumps!

I love the fall weather that we’re having but it comes at a price.  I try to wear warmer clothes but still sometimes that is not enough.

How strange, right?  Has anyone ever heard of anything like this before?

Happy New Year?

Rosh Hashanah.  The Jewish New Year.  The beginning of the high holy holidays.  And this year, it’s not sitting well with me.

If you don’t know it already, I’m an atheist.  Actually, I describe myself as an atheist cultural Jew.  I have Jewish heritage on both sides of my family and my maternal side are Holocaust survivors.  You might think that this would make me more religious but, in fact, it has not.  I’m one of those people who looks at the world and can’t imagine that there’s a higher power behind it all.  I get pissed off by the unexplained sometimes (like, why the fuck to I have cancer!!!!????) but mostly leave it to science to figure out.

With everything going on, our whole family has forgotten about Rosh Hashanah.  So much so that instead of finding a way to celebrate, I went to the theatre alone.  My mom, who was watching Oliver, pulled some short ribs from the freezer from last winter and heated it up because it was the closest thing she could get to a traditional meal.

And honestly, part of the message of Rosh Hashanah is hitting me hard right now.  Even rubbing me the wrong way.  It’s not like the New Year we celebrate in America with champagne and confetti, but it’s the day when God decides, “who shall live and who shall die…who shall be impoverished and who shall be enriched; who shall fall and who shall rise.”  And with a new cancer diagnosis, when everything is feeling out of my control already, even the idea that some God has it’s life in my hands completely out of my control, is very upsetting.

I want to be in control of my life.  I know that one day I will die and I probably won’t get to decide when and how it goes down.  But not now.  Not this year.  Not for many years to come.

Correction to Chemo Treatment Plan

My first round is AC not AT.  I will go back and correct it in the blog itself tomorrow.  Sorry for any confusion.

What To Pack To A Mastectomy

Clockwise from the top: Rosebud Salve sephora.com, lavender sachet lavendarbythebay.com, Cetaphil Facewipes drugstore.com, Vera Bradley Duffel Bag verabradley.com, Drawstring Pants forever21.com, Button down shirt loft.com

One of my concerns for my mastectomy was making my hospital stay as comfortable and convenient as possible.  Here is a list of the things I packed that was helpful and somethings I wished I had brought.

1. A light but easy to carry weekender bag or duffel bag

2. Toothbrush and toothpaste.  I had no problem lifting my arm enough to brush but everyone is different so you might just want some mouthwash too, which I did not bring.

3. Gum or mints.  I didn’t bring it but wish I had for when I didn’t want to get up but my mouth tasted a bit funky.

4. Lip Balm.  I use Rosebud Salve.  It’s one of the things I’d bring with me on a desert island so I brought it to the hospital.  You’ll want some sort of chapstick or lip balm because your lips will be dry from dehydration and from being intubated.  My lips were cracked and I had some splits in my lip.  This helped the healing tremendously.

5. Face wipes.  I did not have it in me to do my whole face cleaning regimen so my mom bought me face wipes and it helped me to feel clean and fresh.

6. Lavender sachet or oil.  I do not like the smell of hospitals so this was to help offset that smell.  Luckily, NYU did not have that hospital smell so I never used mine but if you’re sensitive, you might want to bring something like this.  You never know.

7. Drawstring pants.  Do not pack your skinny jeans.  Your trousers.  Whatever.  You will not have the muscle to pull up anything tight.  Or bend down to pull them up.  Drawstring pants are the easiest thing to wear home from the hospital.  I got a cheap pair from Costco.

8. A button down top.  You will not be able to lift your arm over your head so this is the easiest thing to get on.  I hate button down tops for myself.  I never feel very feminine in them but they were very helpful for the first 2 weeks of recovery.  I got a few on sale at Ann Taylor Loft and borrowed some from my mom.

9. Comfy Button Down Pjs.  I never changed into mine and stayed in the hospital gown.  I didn’t have the energy to change into them.  You might feel differently.  Who knows.

10. Hair band or elastic.  I have short hair so I got a cotton hair band to keep my hair off of my face.

11.  Make-up.  Never used it.

12.  Travel sized hair brush.  My mom brushed my hair for me and that felt good.

13. Tampons.  Because it’s just my freakin’ luck to get my period the day before my mastectomy.  But they wouldn’t let me wear them so I had to wear pads.  7th grade flashback!

14. Easy to slip on shoes.  You don’t want to tie your shoes or zip up a pair of boots.  An easy pair of sandals or ballet flats are the way to go.

15. Chargers for your phone and tablet.  Because, duh!

16. Phone and tablet.  Because, duh!

17. Anything else that makes you happy.  A picture, cards, teddy bear, whatever.  I didn’t bring this but others might want to.

18. Pillows.  We didn’t bring it to the hospital but had it in the car just in case I found the hospital pillows uncomfortable.  I never used them.

19. Mastectomy Camisole.  Some insurances will cover it but it’s like a tank top with pouches to hold your drain.

That’s it, I think.  I hope you find this helpful if you are preparing for a mastectomy.

Chemo Date + Half a Dozen

Yesterday was an overwhelming day.  I did my egg retrieval in the morning then in the afternoon I met with my oncologist to set up my treatment plan.

My chemotherapy is going forward as planned and I get my first treatment on October 15.  My first 4 treatments are AC: Adriamycin and Cytoxan.  This stuff is no joke.  Adriamycin is usually used in conjunction with another drug and is used to reduce the risk of recurrence of cancer in early stage breast cancer (my situation), to shrink a large tumor before surgery or treat an advanced stage breast cancer.  Side effects include hair loss, nausea, vomiting and mouth sores, to name a few.  Cytoxan is a drug that weakens or destroys breast cancer cells by damaging the cells’ genetic material.  It can be taken as a pill or intravenously (which is what I’ll be getting, I believe).  Side effects include, low white blood cell count, loss of appetite, nausea, sores in mouth and irregular periods, to name a few.

My second round of 4 treatments will be Taxol.   This drug is given to reduce the risk of early stage breast cancer from coming back or when advanced stage breast cancer stops responding to certain standard chemotherapy regimens.  Side effects include neuropathy, vomiting and weakness to name a few.  

All of my side effects will be closely monitored by my doctors but they are what they are.  I’m in for a tough 16 weeks (1 treatment every 2 weeks) and I’m very, very scared.  Just like the countdown to my mastectomy, it’s time to start my next countdown to chemotherapy.

I still don’t know for sure about radiation but my oncologist is referring me to a radiation oncologist.  I didn’t know that I needed a separate doctor for this but I guess one doctor specializes in chemotherapy and the other in radiation.  I think it’s likely that radiation will be recommended so I’m preparing myself for this.  Radiation will be administered after chemotherapy is complete and will be for 5-7 weeks, 5 days a week.  It has side effects but mostly it is very, very inconvenient.  i’m hoping it can be avoided.

According to my pathology report, I am still HER2 negative.  I have been graded at a 1+.  But my oncologist said that while I’m considered negative at this score and therefore do not get Herceptin, there is a clinical trial happening right now where 1+ is considered “HER2 low” rather than “negative.”  The hypothesis is that women with this score might benefit from Herceptin in conjunction with chemotherapy treatment.  I’ll talk more on this soon but am strongly considering being a participant in this study.  But as of now, I do not qualify for Herceptin treatment by current medical standards and therefore would not be paid for by insurance.

This is a lot to swallow.  I know.  You should have seen me yesterday.  I was a mess.  I real mess.  I’m still not fully recovered.

On a positive note, I got a call from the fertility clinic today and out of the 10 eggs they retrieved yesterday, 6 were mature enough for freezing.  My doctor said that she predicted that we would get 4-6 eggs so we ended up on the greater side of the prediction.  A bit of good news.  I’ll take it where I can get it.

Just for fun, Ken and I were naming our eggs for future use.  What are they?  I’m not telling, but I’ll take some suggestions. Name my eggs!!!!!!!!

*All links were taken from breastcancer.org, a site that I find gives current and neutral information in language that is easy to comprehend.*

Mommy Mondays: I Missed This

I have not been able to hold Oliver for the last 17 days.  More than the pain of the surgery, this has been the greatest ache of all and there is no medicine for missing your baby’s touch.  Since I’ve gotten my drain out I have been healing much faster and the pain is almost gone.

Yesterday, I think Oliver sensed that I was feeling better so he climbed on my lap and put his head on my chest.  And stayed there.  We just snuggled.  We don’t get many snuggle sessions in these days because he’s so active and just wants to run around.  I think Oliver knew that he had his Amma back.

I missed his soft cheek on my chest, rubbing my nose in his soft hair, feeling him breathe against my body.  Oh, I missed it so much.  For now, we are healing.

The Fall Harvest

For the last two weeks, I have been injecting myself with hormones every morning and night in an effort to harvest and freeze my eggs.  It’s taken a long time, longer than expected for the eggs to mature but they are finally ready.

Yesterday I gave myself the trigger shot (I guess that triggers the eggs to do their thing).  It was the freakiest thing I have ever done.  If you know me, you know that I am terrified of needles so giving myself these shots has been very hard for me but I’ve overcome a fear (mostly).  I have been giving myself the injections in my belly with a half inch needle and it hasn’t been bad.

But this last shot, the last one, just as I was getting good at doing these was an injection in my arm with a one inch needle.  Now, if you look at a ruler, and inch doesn’t look so big.  But if you look at it in needle form and know that you must push it into the muscles in your arm, it looks as if it might as well be a full foot long.

I was sweating.  A lot.  I gave myself several speeches.  “I am a WOMAN!  I am FIERCE!  This will only be a blip in time.  This is nothing.  I am strong.  I am stronger that this needle!”  And so on.  For about 10 minutes as Ken stood there pinching the flesh of my arm and re-wiping my arm with alcohol about 5 times.  I had many false starts.

But finally, finally I did it.  I’ll say it again.  I DID IT!!!!!!!!  And you know what?  It didn’t hurt at all.  Classic.

So, tomorrow morning I’m getting up, going to the fertility clinic and harvesting my eggs, just in time for the fall harvest.  I’m sad to say that this seasons harvest is not bountiful.  They only expect to get 4-6 eggs (10 would be nice).  But what I can tell you for sure, what I lack in quantity, I make up for in quality.  Just look at what I did with the last egg I used!

Oliver, one day after harvesting.

Thanks For the Mammaries

I’m a little breast cancer obsessed these days.  Can you believe it?  I go to different magazines and newspapers and search the term.  Today I was on nymag.com and one of the first articles that popped up was, Artist Turns Breast Cancer Into Cause for Humorous, Boob-Themed Art Show.  That is not the only cool thing she did.

When Bettina Hubby found out she had breast cancer, just like most of you, her friends and family were devastated and surrounded her with love but “reacted with panic, fear and sadness.”  She understood why that would be the normal reaction but, like me, wanted more.

The night before her mastectomy, she started a facebook page called, “Thanks For the Mammaries” and asked her friends to send her boob themed jokes, photographs, art, etc.  When she woke up the next day, she had hundreds of replies.  How cool is that?  This is what prompted her to commission art and start an art show that was boob themed.  She will be my hero of the night.

Photo taken from Thanks For The Mammaries facebook page. It’s a potato!!!!

How fun would it be to do the same thing in the comment section of this post?  Send me a boob joke!  A picture of fruit that looks like boobs.  A picture of your boobs (or boob if you have only one right now like me).  Boob art.   It doesn’t matter.  I think this can be fun.  Here is my favorite picture from her art show.  I know how that poor boobie feels.

Photo courtesy of NY Magazine. Marcella Ruble, “Tit Sign,” courtesy of Thanks For The Mammaries

I don’t know if you remember, but if you look at this post, you can scroll down and remember how I sought my power before my surgery.