Quest is over

Waiting is hard, isn't it?  Welcome to my world!

And, the wait is not over.

The good news is the latest biopsy showed no cancer in the medial area.

Yay!

The bad news is it did show Lobular Carcinoma in Situ in that area.  Despite the scary name, LCIS is not cancer - it's a tumor marker.  That means there is a  slightly higher chance of developing cancer in that area, but normal treatment for this is to watch it and see what happens.  And, most often, nothing does.

The good news is I may still be able to have a lumpectomy rather than a mastectomy.

Yay!

The bad news is the word "may."  That means more discussion.  And, more waiting.

Dr. Raja is going to bring my case to a tumor board.   Apparently, a tumor board consists of oncologists,  radiation oncologists, and surgeons, all of whom have differing favorite treatments and who like to argue about difficult or intriguing cases.  (Finally, something about me is called intriguing - and it's a tumor.  Just my luck.)

I don't think I'm invited.  I bet they won't even let me take the minutes.

I hate it when people talk behind my back.  Especially when it's about my front.

____________________________________________________________

4:59 pm.  I just finished typing the above, and the phone rang.  It was Dr. Raja.  Apparently, the tumor board meeting was this morning.  (See, I told you I wouldn't be invited.  I make great coffee too!)

All of the doctors agreed that I would need a mastectomy, and not only that, as soon as possible.  All 8 doctors agreed unanimously that it can't wait, that my cancer was too aggressive.   And, Dr Raja mentioned to me that I was HER2+ and would need to start chemotherapy sooner rather than later, so he is going to try to find a plastic surgeon who will fit me in quickly.

There was an urgency in his voice I hadn't heard before.  "as soon as possible"  "we have to move quickly."  "I'll find a plastic surgeon to fit you in immediately." "Call me first thing in the morning and we'll set it up."   "Chemo as soon as possible." He's always been so soothing and comforting, assuring me I'd be fine. 

His tone had changed.  Seems strange to go from "you have plenty of time" to "it has to happen NOW" in one day.

Maybe he's tired.  He did say it was a very active meeting.

Well, I have had plenty of time to adjust, so I'm okay.  I've been expecting a fake boob and no hair and a year of chemo and infusions.  (Sometimes 15 months with herception - ouch!)

But, I really want those meeting notes.   I'd love to know what really happened in there.  Did they fight about me?  Did they think something was overlooked?  Did they call me nuts for even trying to save my cancer soup girl?

Oh, to be a fly on the wall.

Quest to Save the Breast

Dr.Raja called me today with the latest biopsy results.

Now, before I tell you what they are, let me say to those of you who come across this site because you googled "Dr. Thiru Rajagopol, Sacramento Surgeon"  - maybe because you've been been assigned to him by your insurance company and have no idea of his reputation, or maybe because you are researching surgeons because you can choose yourself  - well, look no further.  You can feel comfortable with him as your doctor.

Granted, he's not actually cut on me yet.  If, after all of this, I end up with two whole breasts and a missing leg, I'll come back and edit this post and change my recommendation.   So far (and this is a good thing), he has not lived up to the reputation of most surgeons:  he's caring, willing to hear my views and take them into account, and he treats me like a competent adult, able to make decisions.  Even though I don't have a medical degree.  (Don't tell his colleagues that, he may get in trouble.)  He calls me on the phone.  And, if he doesn't reach me at home, he doesn't just leave a message and then forget about me and go cut off a breast - he tries my cell phone.

That, my friends, is dedication.

So, what did he call me about?  I forget.  Oh yeah, my latest biopsy results!

Does she get to keep the boob or not?

I'm so tempted to make this a cliff-hanger.

Maybe I will.

MRI-Guided Core Biopsy

Recipe

Take one MRI machine
Place patient face down with boob through hole
Apply mastectomy paddles
Turn machine on. Mix well.

Pull patient out.
Inject tenderizer contrast dye
Slice breast
Use vacuum extractor to remove meat
Plate meat.
Add ice to patient.

Serve in two days.

The doctor repeatedly told me how well I was doing. She seemed sincerely impressed.

All I did was lie there.  If they'd given me a pillow, I'd have fallen asleep. 

How come in real life I don't get compliments for lying down?   Wouldn't life be fabulous if I could lie down at work for an hour and have my boss come in and tell me what a good job I'm doing?   I am a champion lyer-downer: I'd get raise after raise, and promotion after promotion.   Pretty soon, I could go on the professional resting circuit and get famous.  I could share my talent by lying on fabulous designer couches while entertaining George Clooney and Brad Pitt.

Oh well.

"At Least You Caught it Early"

I can't tell you how many people have said that to me.  It's almost the first thing people say when they find out I've joined Club Cancer.

I wonder how they know I caught it early?   Do they have special powers to see through my body back to when that first cell mutated?  "Ah ha!  April 2nd, 2009, your normal cells just started dividing abnormally.  Thank goodness you found it so quick!"

I should be flattered that all these people think I'm a responsible adult who got her regular mammograms, and thus naturally assumed that I found this cancer at the first possible moment.

They clearly have no idea who I really am: an unfocused, ADD-type person who will do just about anything to avoid discomfort, if she can even remember why she was supposed to be uncomfortable in the first place.

The fact is, it had been years since my last mammogram. In an earlier post, I explained my rationale for the delay, which still still seems quite reasonable to me.  I also did not realize just how long it had actually been  - I mean, I remember the last one like it was yesterday so in my unfocused mind, it had been pretty recent.   Of course, I'd do things differently now,  given the power to see into the future. Although, even with those powers, I'd probably get distracted by something else and forget to go.

Oh look!  A bird!

The point is, that sucker could have been dividing for many years.  Most breast cancers have been growing for two to five years before they are found.  In breast cancer years - based on size -  mine's a teenager ready for keys to the car, and not an infant cuddled under the blankets.

"At least you caught it early."  I'm not quite sure how to respond to that comment.  

I don't think I caught it early.  But, I am hoping I caught it early enough.

Fatigue

I have always needed a lot of sleep.  Even as an adult, I do better on nine hours a night.  I'm like a 10 year old that way.

Not only do I need a lot of sleep, I need to sleep at the right time.  I'm a picky sleeper.  Morning sleeping is the best - mornings awake are not for me.  I hate everything about early mornings - the way the light looks, the voices of people, my cat who wants to be on my lap, my family.  (DON'T TALK TO ME! GET OFF MY LAP!!!)   The only thing I can stand is coffee, without which I would not get up. Period.

On weekends and summers, I stay up until 1:00 to 2:00 a.m. (watching Sex and the City, damn I love that show - hey!  Didn't Samantha have breast cancer?  I'll have to check into those episodes, I'm sure she looked fabulous).  The next day, I sleep until 11:00.

When I took my job as school secretary, knowing I was going to have to be at work at the stomach-wrenching hour of 7:00 a.m. and leave the house at the god-awful hour of 6:30 and get up at the horrifying hour of 5:00 a.m. (which honestly should be illegal) I tried to change my body clock.  I bought a 10k lumen light and sat in front of it for 30 minutes a day;  I took melatonin, used one of those wake up watches, etc.

It didn't work. I was still in a fog in the mornings.  So, my habit was to come home from work and take a 30 minute nap.  That's all I needed, and then I felt fine.  I'd lie on the couch and doze off, then get up, make dinner, clean house, help the kid with homework, etc.  I ran errands, went to the store, did laundry and picked out clothes for the next day, and generally did everything necessary to function in life.  I didn't even need a nap every day, just once in a while - a little refresher.

Things have changed.  Now, all I want to do is sleep.  I do get up and go to work because I have to.  But,  I am exhausted all day.   I look at the space under my desk longingly, knowing it would make a fine place to slumber.  Friday, I even went over to the area that used to be the nurses office (there are no school nurses anymore) and lied down on the old cot, just for five minutes.  Kids came and went, phones rang, teachers joked - and none of it mattered.  I was going to fall asleep. Hard.  Realizing I might fall sleep for, oh, the rest of my work day and beyond, I wearily got up again and went back to my desk.

Every day now I come home from work and sleep - for hours.  In bed.  I'm asleep by 4:00 and usually sleep until 6:00 to 6:30 and I only wake up because my husband wakes me when he gets home.  Then I go back to bed at 10:30.  10:30!  Like an infant!  Weekends are no different.  I get up at 11:00 and need a nap by 3:00, and when I say nap I mean I need to sleep four more hours.  I am posting to this blog and I check the breast cancer forums but even that is all I can do. I'm not doing much else online or anywhere else.

People were thinking my near hibernation is an emotional reaction, but if you have read this blog from the beginning, you know I'm not really having that kind of emotional reaction.  I'm an "it is what is is" kind of person and kind of dumb about worrying about the future.  (People who have lots of thoughts about their future don't usually end up as bartenders/secretaries).   So, I'm pretty sanguine about this. If I end up stage four, that may change, but right now I feel like I'm curable and it'll all be okay.  Unpleasant, but okay.

I always felt that my extreme tiredness was due to my body fighting off cancer.

A couple of people on the breast cancer forums reported the same thing,  but most who complain of tiredness are in treatment already.  Most find a lump, get diagnosed and start treatment within a few weeks - and most have a smaller, less aggressive form of cancer. But, since my family has been understanding (my husband has taken over the cooking and my A student doesn't really need my  help with homework) I didn't feel the reasons for my debilitation were important enough to explore. 

Actually, I'm too tired to think about it.

But, last night the feeling that this is part of the illness and not stress was confirmed by a movie we watched:  Living Proof.

Living Proof, in case you missed this stunningly well-acted and filmed movie (I joke) is about the path of Herceptin's approval though the FDA.  It's a made for lifetime movie starring Harry Connick Jr, which should tell you all you need to know about it.  The script was so bad I was reciting lines before the actors said them - and I'd never seen this movie before.

I could write this shit!

But, the topic was interesting to me since I'm HER 2+ and I will be taknig Herceptin. And, did you know ten years ago my kind of cancer would have been a death sentence?  Herceptin changed all that.   Now I have the same chance as anybody else with cancer, so it really is a miracle drug.  Had it a good script and decent actors, it might have been a compelling story.

Back to sleep:  One of the characters in the movie had difficulty staying awake.  This was before she was diagnosed.  Her family thought she was so tired because she had two little boys to take care of.  She was HER 2+ too.  She is the first person who ever got Herceptin.  Her first cancer symptom was fatigue.

So, there is my proof.  A bad Lifetime movie confirmed it.  I'm tired because my body is fighting this cancer.  It's not stress and it's not my imagination.

There's not a lot about exhaustion before you begin treatment online, but I found this on a website, "In a tumor-induced “hypermetabolic” state, tumor cells compete for nutrients, often at the expense of the normal cells' growth. In addition to fatigue, weight loss and decreased appetite are common effects." 

I do have a fast growing, high nuclear grade, aggressive tumor so this makes sense.  And, I did lose three pounds, although my appetitie is fine.

That coconut cupcake I had for my afternoon snack was delicious.

But, if I get more tired during my treatments, as everybody suggests,  I'm going to end up in a coma.

Wake me in the spring.

Letter from my Insurance Company

Today, as I got home from work and grabbed the mail, I saw a letter from my insurance company.

"Uh oh," I thought.  "This can't be good."

I went inside, dropped my keys and let the dogs out.  All the time, I'm wondering if I'm going to be cancelled for having acne?   Would Obama have to talk about me at his next press conference?

"There is a Sacramento woman, Ann Silberman, who had breast cancer.  She was about to start her treatment, when her private insurance company dropped her over an unreported hang nail.  Left with no choice, she performed emergency surgery on herself to remove the cancer.  She was subsequently arrested for illegally disposing of medical waste, and died in prison after an unfortunate shanking incident.  That's why we need a national healthcare system.  We want to make breast cancer care as efficient as riding Amtrak, and as fiscally-effective as the Postal Service".

Quivering, I opened the letter.  And here, in part, is what it said,

"Dear Ann,

Today's economy is stressful.  Taking care of yourself may fall to the bottom of your "To Do" list. Staying healthy is still important. We want to help

That's why we are sending you this friendly reminder to see your doctor for an important preventative screening. Prevention is the best way to keep from getting sick or to find some diseases early, when they are easier to treat. It's one of the best things you can do to protect your health.

It's important for you to get screened for Breast Cancer (mammogram every two years; clinical breast exam every year.)

Our prevention tips are based on nationally recognized guidelines. For questions about preventative health benefits, call the Member Services number on the back of your ID card.

Sincerely,

Medical Director."

Hokay. I'll get right on that.

Loaded Question

Last night, Dr. Raja called.  He asked me if I'd spoken to Dr. Blair yet, (the oncologist) and I said no, he hadn't returned my call.  He said that he had called him, and surprise!  he actually got through.  Dr. Blair felt, after seeing my MRI results,  that chemo before surgery wasn't right for me.  If the other areas in question are cancerous, it won't help to shrink them down ahead of time - lumpectomy won't be possible.

Dr. Raja said he'd set me up for the MRI-guided core biopsy already - Monday at 7:00 am.  (7:00 freaking a.m?  Really?)   Whatever the results showed, it would be time to schedule surgery.  If the other suspicious areas are not cancer - lumpectomy.  If there is cancer in the other area - mastectomy.

He asked if I was fine with that.

How is that for a loaded question?  It's like asking,  "Have you stopped beating your wife?"

Am I fine with it?  Absolutely not.  I'm not "fine" with any of it.

Will I do it?

I have no choice. 

Just like I knew  I had cancer once I was turned away from the regular mammogram, now I'm thinking this is not going to turn out any way but me losing my breast.  And, that is a two to three week recovery period, possibly more due to the reconstruction. Chemo will start one month after surgery, and that is a four to six month process. 

So, I contacted our HR analyst today.  No point putting it off anymore.  I explained what's going on and asked to know what my options are.  We set up a meeting on Monday after my testing (forgetting how much I bled last time, maybe I was hasty.)

One pleasant surprise - our district gives you a 90 day extended leave - with pay - for a serious illness.  And, it can be taken intermittently, so if I have a bad week with chemo and then a good one, I can still use it. (Although, that is going to be hard on my coworkers).  That is in addition to the FMLA, which is three months off, no pay.    I also have about 25 days of sick leave and I donated to the catastrophic leave bank, so people can donate time to me if necessary.  So, I should be able to recover and go through chemo without losing much, if any, money.  And, I'm in no danger of losing my job.

That's something, anyway.