Being a Science Project

Well, I start radiation on Tuesday.  I go every day for 6 weeks.  That seems like a long time.  I'm not looking forward to it.

About a week ago I went for the "simulation". This is the appointment where they measured everything to get set up for radiation. I need to be in the exact same position each time. So how do they make sure that happens?

First, they made a mold of my upper body for me to lie in. Making the mold was actually kind of cool. Initially it was just a flat piece of plastic with something inside - similar to a pillowcase. Suddenly it started expanding all around me and turned cozy warm. Eventually it hardened into a styrofoam-like substance.

The appointment went on. The technicians (there were 4 roaming around) removed the mold and then started fussing with me. I was not allowed to move - AT ALL (hilariously they told me I WAS allowed to breathe!  Oh good!)  They put tape on my chest. Then they checked the lasers and drew all over me with a magic marker. The whole time I had my head turned toward the wall and couldn't really see what they were doing.  I felt like some mad scientists were experimenting on me. It seemed so dehumanizing and degrading.  Tears rolled down my face but since I had my head turned, they dripped all down one side and dried on only one cheek.  The mad scientists either did not notice or ignored me which made it all the worse.

They measured the height of the bed and its exact position under the lasers. Eventually they were satisfied. Then came the last step: the tatoos!  The technician told me what she was doing but I still felt like a piece of meat. She does this so often that I'm not even sure she would recognize me in the hospital halls! Oh well, who can blame her?

By the way, the tatoos look like small black dots - a bit like dirt.  Ha, should be pretty with V-neck T-shirts and bathing suits.

Another one bites the dust!

Oh, I am so happy!  I finished the last chemo session on Thursday!!!  Chemotherapy bites the dust!!!  I would be even more ecstatic if I didn't already have the joint and muscle pain starting.  Oh well.

Yesterday I went to see the radiation oncologist.  Unfortunately we had to wait 1.5 hours to see her which was very irritating. But it turns out I get a tiny break from medical procedures.  I don't have to go back until Feb. 10th for the "simulation" - they put together a mold that will hold me in place for every session so that exactly the same parts of my body get lasered.  Then I have to wait another week or so until the mold is ready.

Did you know that they will also put small tatoos everywhere they want the laser to be pointed?  Yes, they are real tatoos!  If I want them removed later I will have to go to a dermatologist. Why does no one talk about these things?  Maybe they're so small they're not noticeable? Another strange breast cancer fact - radiation tatoos!  Who would ever even think I would have to deal with tatoos?  Here I spent my whole early twenties resisting the temptation to permanently disfigure my body with pictures of small roses only to have boring, old dot tatoos put all over my chest!  Maybe I'll have them turned into pink breast cancer ribbon tatoos or something when this is all done.

 Oh, and I found out I have to go for radiation every day for 6 weeks, not 5.  Bleh.

One week later...

I'm doing much better.  I still have pain but it's mostly in my knees and slowly disappearing.

And David found my black hat!  It was in with the newspapers, along with Max's astronomy book.  Huh??

Another thing I found out is that my hair will start to grow back about 6 - 8 weeks after my last chemo treatment.  The next one is on Thursday!  I will be very happy to be done.  My hair should start growing around mid-March.

Otherwise not much else to report.

Taxol, Round 3

Thursday I went back for my third Taxol treatment and found out some interesting news.

Falling - Apparently Taxol causes balance problems.  That is probably why I fell twice.  Also, the balance issues can be permanent!  My oncologist told me to be careful and to always hold on to railings, etc.

Menopause - Taxol also causes early menopause which it seems I'm going through.  It can also be permanent!

Finger Numbness/Tingling - I knew this was a side effect of Taxol and now I'm starting to experience it.  Typing is getting harder which means my job might get harder.  Eeeek!  And of course, this can also be permanent.

This Taxol is some serious stuff.

Saturday my joint, bone and muscle pain started again.  Yesterday it was awful!  I spend the day sitting around crying, feeling sorry for myself and being upset about the possibly permanent side effects.  I could barely move and it was so depressing!  Then I started watching TV and there was a commercial for a law firm specializing in disability:  "If you can't work and need help with disability benefits, call the Seelig Firm..."  I imagined myself no longer being able to type, trying to get govt disability benefits because I can't do my job, sitting around home useless and so started to cry, cry, cry...

Then I tried HGTV (which I never watch) and there was a guy who bought a house having just become engaged. He was excited about eventually having a family.  Then he lost his job, fiancee dumped him, bank was close to foreclosure, he owed more than he could sell the house for but the nice broker gave up her commission but then the buyers backed out and there wasn't even a good ending.  The bank foreclosed on him. What if I can't work and that happens to me (never mind that we don't even own a house...)???  Waaah!  More crying, crying, crying.  I was a wreck!

During one of the crying bouts, Leo came over and just stood in front of me.  Finally I told him I just didn't feel well.  He said, "You'll probably feel better tomorrow, Mom."  Then he let me hug him for a long time.  He went away and I heard a bunch of whispering between him and Max.  Suddenly Max came over and said, "Leo told me I should come over to you."  I told him I just needed a big hug and he let me hug him, too.  Then he skipped off.  They seem surprisingly unaffected by all of this.  That is a blessing.

Today I'm a bit better.  The thought of having permanently numb fingers and balance problems is freaking me out but I'm trying to remain calm.  There are worse things that could happen.

Also, I found out that even though my cancer is "officially" triple-negative, my oncologist said it responded slightly to hormones.  If I want to further reduce the possibility of BC recurrence, I can try hormone therapy after radiation ends.  She said it may not make a difference in my case but I think I will do it so long as it doesn't have any bad side effects.

Oh, I only have 30 eyelashes left on the bottom left which, even though it sounds like a lot, is not.  Try counting how many you have.

On top of everything else, I lost my favorite black hat!  Probably everyone who sees me regularly is quite excited and is giving a loud cheer and fist pump about this but it makes me sad.  Waaah!

There's not that much to do in here...

Although you wouldn't necessarily see it this way, one of the "benefits" of chemotherapy is hair loss.

Let me explain...

It occurred to me a few days ago, while in the shower, that I really don't have much to do.  No hair washing, no shaving...all I have to do is wash my body and I'm done.  Really, there isn't much of an excuse to be in there.  A few days ago I tried...let the warm water run over me, "washed" my bald scalp with scented body wash, checked to see if my armpits needed shaving (no, they didn't)... I thought I had enjoyed the warm water a long time but it turns out I was in there about 3 minutes. 

So, it turns out applying my makeup takes longer than showering. 

I kind of feel like a bald man but they still need to shave their face, right?  I don't have any shaving.

I guess I win the "who can shower the fastest" award! 

Kind of cool. 

If you care about these things.

Taxol, you are not my friend!

Stupid, Taxol!

I thought you were supposed to be so much better than the Red Devil?  Why do you torture me with joint and bone pains?  I can't believe you can even overcome Tylenol-3 (tylenol with codeine)!  You make me feel very old, barely able to hobble up the stairs for days at a time.  And I am surprised that you can get me to wince with your sharp stabbing muscle pains.  You don't seem to do this to any other chemo patients! 

And now I'm starting to suspect that you are affecting the stability of my joints.  Why else would I fall twice within 2 weeks?  My poor left ankle is all swollen and my right knee is bruised and banged up.  Not to mention the gigantic spectacle I made of myself both times I fell!  Once on Christmas Eve, in the middle of rushing to get a seat in the packed church and the second time in the middle of the overpass rushing to catch the train.  I mean really, there was tea sprayed everywhere, purse and bag contents spewed forth and me sprawled right in the middle of everyone's path.  Three people stopped to help but you could tell they secretly hoped they wouldn't miss the train.  Was that really necessary?

What is the point of such behavior?  Isn't having cancer bad enough?  What, you want a piece of me??

I am not happy with you and your supposed "easy" side effects.  NOT ONE BIT! 

Well, the least I can do is get revenge and spread the word that you are not a friendly drug!  I have more than 25 people reading this blog and you have been exposed. So take that!

Hellooooo Taxol! What treats do you have in store for me?

Happy Holidays! 

Due to popular request (and in recognition of my tardiness), I am quickly updating this blog on Christmas Eve Eve to let everyone know I'm doing fine.

Here's the latest:

When last you heard from me, I was gearing up for my first chemo treatment with Taxol.  I will have a total of 4 treatments, one every 2 weeks for 8 weeks. 

I arrived last Thursday morning promptly at 9 am.  I saw my beloved nurse, Sheryl, and her sidekick, Dr. Wasserheit.  They congratulated me on finishing with the Red Devil and being half-way done.  I'm thinking, "Yeah, yeah, let's save the congratulations for the end. Let's get this over with" so admittedly I wasn't paying full attention when my sweeties were going through the new side effects to be expected from Taxol.  Something about joint pain, taking tylenol, numbness in my fingers, eyebrow and eyelash loss (which is already happening). Most of what I heard was "It won't be nearly as bad as the Red Devil".  My white blood cell count was sky-high so they decided I should not have the neulasta shot.  Ok, so I bebopped up to the chemo suite all ready to go.  I even sent David off to do Christmas shopping instead of wasting time sitting around with me watching chemicals drip into my body.

BTW, chemo "suite" is a very generous term.  It's basically a large room with recliners (but not really the cozy Laz-E-Boy kind, more the hospital "let's pretend this is a recliner" kind).  Each recliner has a chair next to it for the visitors (no need to give the visitors recliners - they don't need to be comfortable).  There's a fridge (big sign "For Drinks Only, No Food") and a basket of snacks on top (another sign "Please take only one per patient"). Then, each recliner has a TV near it which annoyingly only shows Memorial Sloan Kettering advertisements and/or shows.  A patient once turned it on and the whole thing was about cancer patients telling their stories:  "8 years ago I felt a lump and went to a doctor.  He kept telling me it was nothing. 3 years later I finally went to Memorial Sloan Kettering and they determined it was a tumor..."  Basically the underlying (not so subtle) concept is that Sloan Kettering is the best and you should be suspicious of everyone else. 

Oh, I should mention the Sloan Kettering pets.  Some of the waiting rooms have huge fish tanks filled with gorgeous, unusual fish.  My favorite is a big, yellow, chubby one that has one snaggle tooth hanging out - no other teeth to speak of.  He always looks cranky - like he wishes he were in a more prestigious tank somewhere - Mystic Aquarium, maybe?

Ok, back to the story - I bebop up to the chemo suite.

DID SOMEONE, ANYONE, MENTION THAT IT WOULD TAKE 6 HOURS FOR MY TAXOL TREATMENT??!?  No. No, they did not.

First I had to have the benadryl drip.  Then another steriod drip.  Those, combined with the 5 steroid pills I had to take the night before and that morning finally prepared me.  It was time for the Taxol. 

Now apparently Taxol can cause a severe allergic reaction in some people to the point where they can't breathe.  So the nurse explained that she had to watch me for the first 15 minutes and if I felt ANYTHING, no matter how small, I should tell her.  I told her I'd play my online sudoku game b/c if I didn't, I would definitely feel something.  You always feel weird things if you pay attention to your body - try it.  Suddenly that little jabbing pain on your shoulderblade seems suspicous. So I played my game and she kept asking me how I was doing and if I felt anything.  I never did.  Finally the 15 minutes were up and she moved on to someone else. 

Well, I was up there quite a while.  David got tons of our shopping done.  But before we knew it, the kids were going to be coming home from school and I wasn't nearly finished.  David rushed home to get them and then they all had to come back to get me.  I arrived home around 3:30.  More than 6 hours later!  Sheesh! 

I felt great the next day.  Well, not great for normal people, but great for a cancer patient.  No comparison to the Red Devil.  Saturday was great, too.  Then Sunday, DURING THE STEELERS GAME of all things, I started to get very bad muscle and joint pains.  Stabbing pains that made me writhe on the couch.  I couldn't even focus on the game!  Horrible!  I took tylenol and advil, remembering that my sweeties had told me I could alternate.  I thought for sure there must be something severly wrong.  I could barely move.  This must be how arthritis feels!

Quick research on the internet revealed that this is a very common side effect of Taxol.  93% of people experience it.  Monday I called my doctor and she said it happened right on schedule - 72 hours after treatment.  It usually lasts 5 days. 

So, today is the 5th day and I'm feeling almost back to normal.  Cancer-normal, that is.  Just in time for Christmas.

Merry Christmas to All!