7/30/2013

Just a quick update.  I finally got the results of my last PET scan back.  No cancer anywhere.  And in the words of my oncologist, my PET scan was "perfect."  Now I do, for the record, hate that word.  But if my cancer doctor wants to use it to describe how un-cancerous I am, I will not stop her.

So now that we know I have no visible signs of cancer anywhere, we are still stuck with this question of whether or not to do radiation.  We are seeking out a second opinion next week over at Memorial Sloan Kettering, so we'll see where we are after that meeting.

I also got word late today that NYU Anesthesiology feels my red blood cell count is too low for surgery based on blood tests taken a couple of weeks ago.  I've been on iron supplements for those two weeks so I am hoping that I can get in and get another blood test with MD tomorrow.  Obviously I'm also hoping that my count is up.  Rescheduling surgery is not at the top of my list of things I would like to do.

And oh yes, it turns out my hot flashes are normal for coming off the chemo meds.  Cytoxan apparently shuts down the ovaries, so I am going through menopause or something like it at the moment.  Nurse Eileen suggested that I simply stick a leg out from under the covers at night to cool down.  She is a very busy lady so I didn't bother going into the sordid details of how blazing hot my body gets.  But if sticking a leg out is a solution for hot flashes, then my flashes are not hot.  They are nuclear.

To round out the situation, I am also experiencing some fun killer mood swings.  These are par for the course with menopause.  Er, chemo recovery.  What's happening again?!  I have moments when I'm depressed and a few of those moments have been particularly intense.  If you'd like to read a bit into that, please don't let me stop you.  But I also have moments of clarity when all the shit falls away and I can see that life is so so good because everything is only here and now.  Here.  Right here with my kids tucked into their beds and a roof over my head and a husband on his way home and a working computer.  And now.  Alive and breathing and recovering.  Here and now.  It is a nice little mantra.

Tapering

I took a nap at 1:30pm today when a dear, dear friend came over for a visit and told me to go lie down.  She stayed with the girls (Michael is in India) and I slept pretty hard for an hour.  Then I cleaned my kitchen.  Then we went to a Star Wars birthday party.  Then I came home and ordered sushi and took a shower with the kids and read them books and put them to bed and fell asleep with Willa at 9pm.  It's now 11pm.  Obviously I am not asleep.
The latest is that I am tapering off of Ativan.  I can't believe that that is the state of things, but nonetheless, here I am.  My nurse was on vacation last week which is when I started to connect the dots that maybe these hot flashes at night were more than just the crazy heat or faulty combinations of my blankets and nightgowns.  So I haven't officially received word from a trained professional that this early menopause experience might be the result of the pills.  But when I Googled "hot flashes" plus "cancer" plus "Ativan" plus "what the hell," I was able to self-diagnose.  Thankfully, a couple of weeks ago my GP mentioned to me that I should wean myself slowly and not go cold turkey.  So I cut my 1mg pill in half for two weeks and now I am taking half a pill every other night.  Hopefully in another two weeks, that will be the end of Ativan.

In addition to a raging fever every hour while I sleep, followed by a serious chill after I throw the covers and strip my clothes off, I have an engorged left breast.  These things in combination make getting a full night's sleep more or less impossible, so I don't even bother wishing for it anymore.  I consider it a victory when the covers can go off and on with very little drama, and when I only have to pee once.  But the breast is just a big pain in the ass now.  It is expanded to a decent size, nothing too ridiculous, but the expander is hard and bulky and completely immobile and sleeping with it feels like I'm snuggling up to a rock.  It comes out this Friday and will be replaced with a saline implant.  My right side will also get an implant, not to mention the shock of its life.

But what is all that compared to cancer, now really?

I Lost The Real Post

I just spent the past hour and a half writing to you, was about to post, and then I lost all of it.  My email was also hacked this morning so I am starting to think someone is seriously fucking with me.  Just wanted to let you know I am (generally) fine.  I have my implant surgery next Friday and I have hot flashes that wake me up at night as I taper off of Ativan.  Now I have to get to sleep and try not to be angry with a fucking piece of plastic.  I hope you're having a better night.

PET Scan #2

Another PET scan today.  Let's review.  Low-carb dinner the night before, no alcohol, nothing to eat after midnight, 20 ounces of water the day before, 20 ounces of water the morning of, no caffeine, no sugar, no coffee, no food in the morning.  Come in at 11am to The Cancer Center anxious and miserable, have a nurse prick your finger, stick a needle in your arm and leave it there for the next two hours.  Drink Barium (what is that?), lie in a room by yourself for 45 minutes, No Moving, No Texting, No Reading.  You can listen to music. 

NYU: Want us to turn on the radio?

Miserable Me: Do you want me to shoot myself?  I mean, what's worse?  This needle in my arm or the freakin radio?

Drink more Barium.  Willy the nurse injects you with something that comes out of a scary silver bottle that looks like a large bullet or a small bomb.  You are now radioactive.  Don't touch or get near your kids for 10 hours.  Cry about that.  Drink the last of the Barium.  Lie on this board.  Here's a blanket.  Put your arms up over your head.  Into the scanner you go.  See you in 20 minutes.  Try not to think about the cancer we might find.

I never really treat myself to anything because that's not how my brain works.  But right now I'm smoking a bowl and finishing off two different flavors of ice cream because it's been that kind of day.  

So the reason for the scan is that we are checking an area of my chest again where lymph nodes showed up inflammed in the last scan.  Chances are good that the inflammation was due to the surgery, but there is a small chance that the inflammation is an indication of cancer cells in those nodes.  If that is the case, then I will definitely need 3 to 5 weeks of daily radiation (not to be confused with being radioactive because they are acutally two separate things which makes no sense but it also makes no sense that they treat cancer with things that could give you cancer so just shake your head and move on) in September.  If the inflammation does not appear again on this latest scan, then radiation remains an open question.

But also I should say that I am 17 days out from my last chemo treatment and I am generally feeling pretty good.  I'm feeling my energy again, most of which I am happily allowing my children to drain from me every day.  Happy, happy, happy to do it.  Also I made it out of the house last night and had dinner (lo-carb, no alcohol) with Michael and some dear friends and it was the nicest bit of normalcy you ever did see.  I did have a little difficulty applying mascara to the seven lashes left on my lids, and then three minutes before I left the house I realized that in a certain light my maxi dress clearly dileneated one plump, round, nipplessless breast and one significantly smaller nippled breast.  I did not care enough to do anything about it, I only cared enough to feel slightly sorry for myself.  Vanity has taken a nice long vacation but Self-Pity still lingers. 

And dinner was lovely.  After greeting my friends at the bar and exchanging our hugs and kisses, I asked them how they were.  They had a lot to tell me - it's been a rough five months for them.  But they stopped themselves and said they didn't dare talk about their troubles to a woman with cancer.    "Oh, please," I begged.  "Please please please don't let me go home and cry myself to sleep thinking I'm the only one with problems.  Please tell me you have problems, too!"  They obliged and I was so grateful.

Four other friends came to my rescue today.  I planned on lunch with my friend L when I had blocked out of my mind that I would be radioactive after the PET scan.  She came over and brought bagel sandwiches piled high that we both devoured, but she also stayed and kept me company throughout the rest of the afternoon and kept me distracted me from the miserable fact that I couldn't hug or be in the same room as my children.  I'm also really grateful to my friend K, for many many reasons, but today for her podcast Tell the Bartender, which I listened to when there was No Moving, No Texting, No Reading for 45 minutes.  On her latest show, our friend M openly and honestly and hysterically shared the story of the first and only time that he tried to have sex with a woman.  I laughed uncontrollably but then got very nervous that I had ruined my scan because I was sure someone had also told me No Laughing.  

And then tonight, when we had one last miserable hour of trying to keep the kids away from me, when Clio was in tears because she couldn't hug her momma, my friend S had the kids over to her place to play with her bunny Pumpkin.  Oh yes, I'm also very grateful for Pumpkin.  

But I have to say this about miserable moments - they make the ordinary moments feel pretty stellar.

The Chemo Diaries. Is it over yet?

Today is the first day since the fourth treatment (last Monday) that I haven't wanted to off myself.  It's also the first day that I have felt like moving my fingers or any other body part so I thought I could get a blog post off now that the kids are in bed and now that I am in my nightgown smoking some weed.  I hope you are, too.

By the way, did you guys see this article in the Washington Post today?

http://www.washingtonpost.com/national/health-science/for-patients-like-me-marijuana-is-a-necessity/2013/07/08/a87bfc5e-daa8-11e2-9df4-895344c13c30_story.html

My mom sent it to me this morning and I was confused and angry for a hot second because I thought she had gone and published my diary in the newspaper.

Anyway, the past three or four days over here have been low, low, low, how low can you go.  Eating continues to be a nightmare.  Maybe a banana.  Maybe.  A cookie?  Ok, yes.  Dinners are a bowl of cereal and an Ativan.  It's a good thing I gained five pounds a couple of weeks ago.  Willa has now seen me so often sitting at a table with my head in my hands that tonight she asked me, innocently and earnestly "Why do you always do your head like that?"  

I woke up this morning and had to get ready relatively quickly to be on time for my 9:30am doctors appointment so I could wait 45 minutes in the waiting room.  First of all, doing anything quickly at this stage is not an easy task especially when it involves eating and then riding in a cab.  But also, an extra 45 minutes in the Cancer Center is enough to give you cancer as far as I'm concerned.  That's quite a lot of time to get all worked up thinking about dying and feeling sorry for yourself.  Then tears start to fall and I have to fight them back because technically my doctor COULD walk in at any minute even though she doesn't.  But when she does she could see me crying and fetch the social worker from the 10th floor again so I'd better hurry up and wipe these tears away and pretend I have seasonal allergies.  

Michael rubs my back to calm me down and after I think about how much I love him and how grateful I am to have him by my side I think about how much I would love a massage and how I should schedule one for every damn day for the rest of my life.  But then I wonder if they make massage tables with holes for breasts to go into because I still have a brick rock tissue expander in my left boob that would most certainly have to go somewhere were I to lie down on my stomach and have someone karate chop this tension out of my shoulders.

I made it home somehow and collapsed on the couch and Dad said I have to eat and I moaned and thought about what I could eat if I could eat anything.  And what I really wanted was a Duncan Hines cake that we used to make when we were little right out of the box when we thought that meant we were baking.  And on top, I would want that frosting that comes in the round little canister box that can also sit on a grocery shelf for 12 years and not go bad.  Given that I am the unlucky one in seven women who gets breast cancer for no apparent reason that anyone is able to share with me, those two food products are probably some of the very last items on a list of things that I should ever eat.  So I think again and scan my brain for a craving and I land on, none other than, a Green Dragon roll from Sushi West with extra ginger on the side.  What?  I order up.  Dad thinks I'm insane.

I buy $40 worth of Green Dragon rolls, extra ginger, seaweed salad, and miso soup.  When it arrives I set it out and I'm pretty confident that I still want to eat it, but I'll admit, I'm a little nervous about this craving.  This could go horribly, horribly wrong.  I eat.  I don't throw up so I eat some more.  Then I take a nap and set the alarm so I don't miss my therapy appointment and somewhere in the middle of therapy I realize I might, might, might be over the hump.