Thursday, November 26, 2009

Happy Thanksgiving

To all my American readers, family and friends - I wish you a very happy Thanksgiving. There is so much to be grateful for this year - friends and family who have stepped up to the plate (no Thanksgiving pun intended), including many who surprised me with their caring. Coworkers who put up with my distraction and absences and family who have taken on the bulk of the work that I used to do. I'm grateful for the new friends I've made through this cancer experience. And, I'm very thankful for medical researchers who created the targeted drug, herceptin, that will allow me to have many more Thanksgivings.

Eat lots of turkey and pie, and enjoy your family and your day. I leave you with one of my favorite Thanksgiving memories:

A good rickroll never gets old.

Tuesday, November 24, 2009


I am always impressed with how efficient the government is. Especially the California government. And, most especially the Sacramento County government. Everything runs so smoothly here, you would not believe it. It's all a Swiss clock and the trains run on time too.

Okay, we don't really have trains. And, there are lots of potholes in the streets and the traffic lights don't synch and the cops won't come unless somebody pulls a gun on you and even then it takes an hour. But, you know what I mean.

Naturally, when I found out that the government was going to dole out the H1N1 vaccination instead of doctors, I was thrilled. After all, what do physicians know about who should get the swine flu shot? Why should they make that health care decision, when the government is perfectly capable of deciding for them?

And really, why would I even want to get it from my oncologist in his office when I can get it at a homeless shelter surrounded by thousands of citizens and injected by county health workers?

This vaccine is in short-supply. So, it would seem that each city is given an allotment and are left to individually decide how to handle the distribution.

Some of the more inefficient cities distributed it to medical personnel and hospitals. Some gave it to Walgreens Pharmacies. Some gave it to large employers and universities, some distributed it in schools and some did a combination of things.

Sacramento decided that they were going to open clinics in various homeless shelters, community centers, and churches throughout the city every other day or so. Only those people designated "high risk" were to get the shot for the first few clinics.

High risk means pregnant women, healthcare/EMS workers, people caring for babies under 6 months, and adults 24-64 with specific medical conditions (including those who will undergo chemotherapy)

But as our local newspaper wisely reported - it's all on the honor system. Nobody actually has to have any kind of proof they are in the high risk category - nobody will check. All you have to do is say you have a condition and bam! Needle in the arm.

Thank God the newspaper published that tidbit, just in case somebody didn't think of it on their own.

Along with that helpful advice, the paper published the dates and times of the clinics. I start chemo December 2nd and am supposed to get my shot two weeks before. There was a clinic near me, Saturday the 21st, which was the last one available to high risk people (or those willing to lie). It was 11 days from my chemo date so I was cutting it close but it was the only one I could get to in between doctors appointments. I marked my calendar, dreading it, because reports were that over 5000 plus people were showing up, but I work in a school, if I want to go back I have to brave the crowds.

So, I'm hanging around the house last Thursday listening to the radio, and suddenly my ears swiveled towards the radio like a cat's. The weekend flu clinics were being canceled due to rain, a decision made by our public health officer Glennah Trochet. The exact quote - and you can't make this up - is that the county health department was worried somebody might slip on the sidewalk.

I kid you not.

I checked the forecast, figuring we were in for a huge early-season storm.

The forecast? 54 and 20% chance of showers.

Honestly, I'm so impressed. The government is so concerned about our health that they aren't going to allow cancer patients to get the shot in time for chemo - because we might slip on the sidewalk.

Is that efficient, or what? Thank GOD they didn't dole it out to oncologists or other doctors - why, we foolish people might have gone out in the rain to get the shot!

It's too bad private business aren't as concerned about our health. After all, the Sacramento Kings play on rainy nights, the B Street Theater insists the show must go on in spite of any rain, concerts continue on days of precipitation - even those limp-wristed San Franciscans don't cancel outdoor 49er games on rainy days.

I think we should all boycott these businesses because they clearly don't care about us.

So now, I'm left with a dilemma. I can go to the next one in my area, but risk getting it only 8 days before chemo - or chance not getting the shot at all.

If I wasn't a school employee, I'd have skipped it. But at some point I'm going back to work, and it'll probably be at the height of the flu season and teachers don't seem to go home sick - they just come in my office and cough on me. So, I picked November 24, although it's listed as open to anybody, and I knew the lines would be huge.

Today is the 24th and I got back not long ago. And, because I work for the government myself, and feel kinda tired now, I'll relate my vaccination experience later, when I feel like it.

How is that for efficient?

By the way, we got a whole 1/10th of an inch of rain the weekend they canceled the clinic, so it was clearly the right decision. My husband and I bucked the danger and went out to brunch. We are super-adventurous types. Amazingly, neither of us slipped.

Or even got our hair wet.


Monday, November 23, 2009

Life without cleavage

Did you know that if you drop popcorn down your blouse after mastectomy, there is nothing there to stop its descent, and you have to reach down to your belly button to dig it out?

Maybe I should skip the movies for a while.


Saturday, November 21, 2009

First Tissue Expander Fill

I had an appointment with my plastic surgeon to get my first "fill.' This is a process that will go on for about a year - every three weeks or so, he will inject the tissue expander under my mastectomy site with saline. This will stretch the skin and muscle enough to allow for an implant.

If you are anything like me, you love to watch those surgery shows. I'm particularly fascinated with the ones where they separate conjoined twins. To make sure they have enough skin to cover the areas of separation after the surgery, they use the same type of tissue expander I have.

I'll never forget some sweet little babies joined at the head who had one of these things - at the end of their expansion it looked they had three heads.

That's what my breastical area will end up looking like - a big baby head. They have to over-expand it to try and get a sagging match on the other side. For a time, I'll have a baby head on the right and a small, saggy real breast on the left. Getting dressed is going to be fun.

Anyway, the procedure went smoothly. He took out a device, I think it's a magnet of some sort, to find the area in the tissue expander to insert the needle. I was concerned because no numbing agent is used and there are random spots on my skin where I have sensation - fortunately, the opening is not under one of those spots.

He asked me if I wanted to be conservative or go for broke - I said broke. The needle went in and they started pumping in the saline.

It was like a mission control countdown. The nurse was urgently calling out, "10 cc's." "20 cc's." "30 cc's" The doctor put my hand on my skin so I could feel it rise with each cc. I could feel the muscle and skin get tighter and tighter and about 80ccs I could feel tension in my arm, so that is where we stopped.

The nurse told me that night I would feel like I had done 200 push-ups.

I can't relate.

The doctor stated that sometimes people go up to 200 cc's their first fill. I guess that means I didn't do very well. I'm a TE expansion failure. However, asking around on the breast cancer forums, nobody has gotten that much so maybe his regular clientele are the type of women who can relate to what it feels like to do 200 push-ups.

I'm the kind who can relate to the after-effects of a big shopping trip and carrying an armload of clothing. Ouch!

I experienced almost no pain that night - slight soreness and my usual muscle weakness. Next time, I'll ignore the arm stretching and try for 100 cc's.

Now, please excuse me. I'm off to get one of my son's super strong magnets to see if I can find this injection area myself and stick a magnet to me.

Ann, the walking refrigerator.


Friday, November 20, 2009

Quick note

Now that Christmas shopping season is right around the corner, I wanted to point something out to you.

Look over to the right -------------------------->

See that Amazon box right there? If you are going to buy anything from Amazon this holiday season - or anytime actually - and you use that search to find your item, I get 4% of the proceeds. It helps me, and doesn't hurt you. I can see what items are purchased but cannot see who bought them. So, if you have an embarrassing love for Pork Feet, your secret is safe with me.

Better yet, buy a kindle. You'll love it, I promise.


Wednesday, November 18, 2009

Get your mammograms, and feel yourself up

Originally, I set up this blog as a way to keep my family and friends in the loop about my treatment. I dislike talking on the phone and the thought of making and answering numerous phone calls giving the same details repeatedly seemed like one of the more unpleasant side effects of cancer. A blog is a clean and simple way for people to get the information they want - without bugging me or interrupting my nap.

Guess I'm not a people person.

It appears that more than my personal acquaintances have found this blog. It's gratifying to know that I have regular readers who like my writing and/or are interested in hearing about my experience with cancer. More than just letting family and friends know I'm alive, I hope it helps other women who are coming to terms with their diagnosis to know that you can get through it with your self intact.

Well, mostly intact anyway.

Although I have strong opinions about certain subjects, I never intended this blog to get political, and since I don't intend to live in Cancer World forever, you won't see me going on pink walks or urging people to raise money for breast cancer. (My favorite charity is still the Make-a-Wish Foundation.) I'm certainly not going to make the rest of my life about this disease. When I'm done with treatment, this blog will be done too.

Unless somebody pays me. Then all bets are off.

So, I was thinking I would ignore the news about the government recommendation that women not get mammograms until age 50, and oh, by the way, self-exams do no good.

But, then I realized I did have something to say about this.

Dear Government Advisory Board: What the FUCK are you thinking?

Excuse my French. Or, perhaps that's what they are thinking? They are urging women to surrender, like the French.

I am 51. I found my lump one month after turning 51. Guesstimates are this cancer has been growing in me for 8 years or so. Had I gotten my mammograms, as my insurance company kept nagging me to do, it's possible I would have found this in my 40s. It's possible I wouldn't have needed mastectomy or chemotherapy either. I might have gotten away with a lumpectomy, a month of radiation, and then gone about my life, boobs intact, and never having had the experience of shopping for a wig.

I have 7 years of treatment ahead of me. At what I can only guess is considerable cost to my insurance company.

My choice not to get mammograms was my own. I made my bed, and I'm lying in it, and not very comfortably after tissue expander placement, I might add. I had my reasons, and I don't regret it. However, not having mammograms was MY CHOICE. If that choice is taken away from millions of women and they cannot get mammograms, many will find their cancers at a later date, causing a situation such as I'm experiencing. Or worse. Much worse. Many will already have metastatic disease, and will die.

Mammography is not perfect. I have dense breasts - the test doesn't work that well for dense breasts. After my main cancerous lump became large and I had my mammogram, it did see that lump. It saw none of the other tumors lurking around. It's possible that had I gone in my 40s, my mammogram would have shown nothing. I recognize that fact.

But the opportunity should be there. In fact, my recommendation, which would be far too sensible for any government bureaucrat to make, would be to give women with dense breasts a sonogram in addition to their mammogram - 100% of the time.

The argument that women suffer from frightening experiences with mammograms, or suffer needless biopsies that cause them extreme stress and therefore these tests should not be done is incredibly insulting. It harkens back to the Victorian age. Women are strong enough to take a little pinprick, I promise you. If we can get our breasts cut off, lose our hair, have radiation to our bodies, have poisons pumped through us for months at a time, while raising children and going to work - AND do it with the grace and humor I have seen displayed by my new cancer buddies - then they can handle a squished breast and a needle removing some tissue.

Women are not delicate little flowers that require smelling salts if somebody speaks, um, French.

So, what is the purpose of these new guidelines? A skeptic might say this is the beginning of Obamacare and government-rationed health care. Leave it to the government to try to save a little and end up costing a lot. These are the people who run FEMA and the IRS after all - they are not going to do what is best for you or the bottom line. They are going to do whatever the special-interest group that pays for their latest Hawaiian trip wants.

Been able to get your H1N1 flu shot from your doctor yet? Hmmmm??

This advisory group also based their recommendation on old technology - not the new digital mammography. How quaint and government-like. Can you say mainframe, anybody? Cobol? I thought you could. Sensible people would recommend that digital mammography would be the way to go, not that women shouldn't get any mammograms.

My understanding from a friend who lives in the UK, is these are the same guidelines that exist in Europe - where the death rate of breast cancer is much higher than here in the US.

I am sure these guidelines will not be followed - not as long as we have private insurance anyway. Insurance companies will reject them as it is far more costly to treat invasive and/or metastatic cancers than early cancers.

But, if this recommendation is ever implemented - listen up. I have a work-around. The recommendation is that if you are under 50, you should discuss the need for mammography with your physician, and then he can set up the test against the new guidelines, if he thinks you will benefit.

I recommend you woman all lie and say you have a sister or mother who has had breast cancer. That immediately puts you in a risk group, and you'll get your test.

If you need a sister/mom stand in to vouch for your honesty, I volunteer.

I have no problems lying to the government. Except on my tax return, of course. I'd never lie on that.

So ladies. Feel yourself up, early and often. Get your mammograms. And, if you have dense breasts and have been told that mammography doesn't work well for you, as I was told - then insist on a sonogram. Make a scene until you get one. Lie if you have to. I had no idea until I had a lump that breasts could be sonogrammed to find cancer, or who knows, I might not be a uniboober right now.

Now excuse me, I'm going to go practice my French.


Friday, November 13, 2009

Meet my boob

Or, in breast cancer vernacular, my "foob."

At some point after surgery, you are going to have to leave your house, even if you are lazy as hell, like me. If nothing else, you'll have lots and lots of doctor's appointments, so you'll really have no choice.

I'm pretty sure doctors don't make housecalls any longer.

Making a public appearance presents a dilemma for those of us who are rocking the uniboob look. The women who had a double mastectomy can just walk around and pretend they've always been flat-chested. Somebody is an A-, right? But, we uniboobers don't have that luxury.

So, what to do?

I didn't want to get a real prosthesis, because eventually I will have a reconstructed breast. I figured the old sock trick would work, but socks are scratchy and don't feel good against mastectomy scars. Cotton balls keep falling out. Fortunately, I was given a mastectomy camisole. Within that mastectomy camisole came some padding inside a pocket in the top. The camisole didn't provide enough support for my good side to wear regularly, so I decided just to pull the padding out and see if it'd work in a regular, unpocketed bra.

The padding, now known officially as my foob, fortuitously came with an opening in the back. You can pull the stuffing right out of it, to make it match your other side. And, as you go through the fill process, you can pull more and more stuffing out to get the best match. Not only that, but if you turn it right side up, you get a perky boob. If you turn it upside down, you get a saggier boob.

I'll leave you to guess which way I turn it.

As I mentioned in my post about post-mastectomy purchase recommendations, I bought some Spanx Bra-lleluja all-hosiery bras. No, these bra-lleluja's are not lacy little confections that peek out under your clothing, making any man who catches a glimpse lose his mind with the desire to see what else is under there.

Trust me, he'd be sorely disappointed if he did see what else is under there.

Although, I have heard of amputation fetishes, so maybe you'd get lucky enough to find that guy.

What these bras are is super comfortable on scars, on nerve-damaged skin and easy on/easy off with no reaching around the back. And, they have a large cup area, for a foob. No chance of it falling out, even without a pocket.

It's working beautifully. I have a near perfect match. The only problem is sometimes it tends to ride up to the top of the bra and I get slightly uneven results, which I'm sure only I notice. And, if you see me and notice, please don't destroy my illusions. I've found wearing patterned shirts offsets some of the discordancy when creepage occurs.

Maybe a little clothing tape will fix it, I haven't tried that yet.

Meet my foob:

Oh wait, something is missing.

Yes, that is a skittle. We mastectomy patients are nothing if not resourceful.

I only wish I'd had some pepperoni for the areola. Maybe we'll have pizza tonight.


Thursday, November 12, 2009

Good-bye, Fudge

My dog of 13 years passed away today.

He was the friendliest dog you'd ever want to meet. The entire neighborhood knew his smiling face. He never met a person or dog he didn't like and walks were always an opportunity to meet new friends. In fact, one day he was so excited to see some doggy friends walking with their owner outside our home, that he blew right through our screen door to get to them. The poor lady nearly had a heart attack to see this huge, 125 pound dog knocking down a door and charging at her, but when he got to her, tail wagging, tongue hanging out, and started sniffing her Pomeranians, she realized he wasn't going to eat them, but wanted to play.

We put in a security screen door after that, of course.

He was a big 'ol Chocolate Lab, named after the character "Fudge" in the Judy Blume book Tales of a Fourth Grade Nothing. Thirteen years ago I was pregnant, and my oldest son wanted to name his impending baby brother Fudge, like the naughty little brother Fudge in the book. Unsurprisingly, I vetoed that name for my child, but when Christmas morning came around and my son was presented with a wiggling brown puppy in a box, Fudge was the natural choice for his name.

Fudge was a remarkable puppy in that not once - not as a puppy and not as an elderly dog - did he ever mess in the house. We got him as a six week old pup and he came house-trained. I am guessing that will never happen again in my lifetime. He wasn't perfect - he was a Labrador after all. We still have some holes in the drywall where he'd decided to have a little snack.

His most notable trait was friendliness. Fudge never met a human he didn't love. Taking him to the vet today for the final time was no problem; the vet is full of fun people and even though he'd lost his ability to walk he was happy to be there with his friends. He licked them all good-bye.

Even in pain, at the end, his tail would thump when we'd come near.

Good-bye to our loving, comical, friendly, big ol' boy. We will always remember you.

You'll always be rolling in the grass, scratching your back, in my dreams.

Wednesday, November 11, 2009

Surgical Follow-up

Today was my follow-up appointment with Rockstar Raja.

He entered the exam room beaming, and said I looked good. I told him, "I feel good!" And, I do. He asked how my pain control was, and I said that I'd had a rough go at first but was doing fine now, except it's still hard to sleep. He nodded - the expander can cause long-term discomfort.

Then he said, "I got your pathology report," and I'd told him I'd seen it too.

He picked up the diagnosis page and fluttered it at me. "You did? Did you see this? Did you see how long this page was?" I smiled and said yes (without mentioning I'd typed it for my blog readership.) He, like Dr. Blair, was amazed that I had as much cancer as I'd had with no vascular or lymph invasion.

I'm so special.

He did warn me that the invasive lobular carcinoma was not like the invasive ductal carcinoma - it usually shows up in both breasts. Nothing had shown up in my left breast at the MRI but from now on I have to keep a very close watch on my remaining girl, and will have regular MRI's so they can see what I can't feel.

Good thing MRI's don't bother me.


I had invasive lobular carcinoma too? Somehow that fact escaped me. So I had invasive ductal carcinoma, invasive lobular carcinoma, ductal carcinoma in situ, lobular carcinoma in situ and atypical hyperplasia.

That's not cancer soup, that's cancer stew!

One of the breast cancer forums I participate on has separate sections for the various kind of breast cancer you can get. I have such freedom - I can post in almost all of them.

Dr. Raja left the room so I could undress for the wound check. I did so hastily because I like to snoop through the paperwork before the doctor comes back. As I was undressing, I looked out the window and realized that everybody in the parking lot and the apartment complex across the way could see me. I felt sad for them, because a few months ago they would have gotten a treat and now, not so much.

Anyway, I quickly opened the folder of my chart to take a peek. (I know it's mine but it still feels more fun to sneak through it). I wanted to see what else was in there that I didn't know about - a friend of mine gets all kinds of compliments on her personality in her paperwork - but it was like 100 pages, so I only got to one before he came in. It was boring too, a letter from a radiologist saying that surgical follow up was required, and thanking him for allowing them to do the test.

He came back in, and I opened my fabulous paper top, and he said my wound looks good. There is a caveat to that statement - it looks good to a surgeon. I am pretty sure it would look horrifying to anybody reading this, and I can't say I'm exactly in love with it myself.

Anyway, I have some weird folding stuff near the armpit I was concerned about - it's preventing me from using my arm properly. He said it was normal though, they take out breast tissue up there too, and my plastic surgeon can fix it.

He said that I would see him in six months, and so I said good-bye to Rockstar Raja.

Phase One of my treatment - finished.

I also had a dentist appointment for today to get my new veneers, but it was canceled. They have to do more extensive work than I thought, including numbing me up. Because my tongue is still numb from the last time, I wasn't exactly keen on that idea (I said hell no), so they are going to drug me again. Now the appointment is next week.

Only three appointments this week? Think again. My cat is sick. So, we are taking her to the vet later today.

I hope she doesn't have cancer.


Monday, November 9, 2009

Oncology Appointment

The technical term for what was contained in my pathology report, according to my oncologist, is:

"Your breast was a mess."

I guess I'll need to get my medical dictionary out for that one.

He said he'd never seen anybody with my pathology who didn't have lymph node or vascular invasion before, and that I'd gotten very, very lucky. "Somebody is looking out for you, that's for sure."

No dictionary needed for that one. I really should go play the lottery.

My chemo regimen is going to be grueling. It's TCH: Taxotere, Carboplatin and Herceptin. I'll have six rounds, every three weeks, of Taxotere and Carboplatin. Every week for an entire year, I go in for Herceptin. Then, I'm semi-free; I'll take Tamoxifen every day for five years. That though, is a pill I can take at home.

Wow. I'll be treating this cancer for seven years.

Dr. Blair gave me the choice of starting before Thanksgiving or after. I chose after - my stepdaughter is coming to cook for us, and I don't want to be in bed - I want to eat turkey with my family. So, my first chemo infusion is December 2nd, first herceptin is December 9th, 2nd herceptin is December 16, and the 2nd chemo is December 23rd.

(Note to self: start shopping now and forget the after thanksgiving deals.)

(Note to family: it may be a meager gift year. Consider my continued breathing as your main gift.)

I'll lose my hair about ten days after my first infusion, so warm hats for Christmas is a gift idea I never would have suggested before. :)

During chemo, I'll be taking a steroid to prevent fluid retention, and compazine and ativan for nausea, and possibly neulasta to get my white count up. Any other side effects that pop up will be dealt with at the time.

My main concern, which I brought up but wasn't really addressed to my satisfaction, is what happens if I get migraines because of these medications? If it happens in the infusion room, they'll give me demerol. But, if it's something that happens after, I got the distinct impression that I'm on my own.

I don't think I can possibly get across to these medical professionals how much these migraines have affected my life. The only ones who understand it are neurologists.

Maybe I can get a neurologist to treat me for the side effects of chemotherapy?

I can live with nerve pain. I can life with fatigue. I can live with bone pain. I can live with nausea, diarrhea, bloating. I can live with hair loss. What I can't live with is migraines -- not a year's worth.

How to describe it to somebody who hasn't had one? It'd be like giving birth every day of your life. And, not an easy childbirth either. For you men, it'd be like having somebody kick you in the balls every hour - forever.

Let's just hope that I'm not one of the people who get week-long headaches from herceptin. Maybe I shouldn't get ahead of myself. Maybe my cancer luck will hold.

Because of my focus on migraines, I completely forgot to ask Dr. Blair about getting a port. I think having a port surgically implanted is pretty standard for people who have to have a year of infusions. I'd rather not - it's ugly and leaves a scar that you can't hide, but I have small veins and since mastectomy they can only use one arm for sticks. An IV in one small-veined arm every week for a year might be a challenge.

I guess this will ruin my chances of ever being an IV drug user too.

Darn. Cancer takes away so much.


Sunday, November 8, 2009

Surgical Pathology Report

I've posted my other path reports, so I'll post this one too; what the heck. If you are a future employer, and don't hire me because of this, I'm suing you and you are a bad, bad person, and wrong too - because I will live a long time and I'm under my husband's insurance so I won't be costing you any money, and my real name isn't Ann Silberman anyway.

So there.

Okay, it's five pages so I'm not going to type it all. I'll skip the part where they described my poor separated breast, sitting in a metal bowl, nipple looking up at them for the final time, proudly. I felt a little sad thinking about my breast there in that bowl all alone and missing me, but the medical stuff got me so interested I forgot about it quickly.

Besides, it didn't take them long to chop it up. Murderers.

Here is the "Diagnosis" Section on page 4. If you don't like medical terminology - skip this post. It will give me a nice typing workout though. My comments are in bold, although since they are in English, I'm guessing you figured that out.

Invasive Ductal Carcinoma, 3.4 cm, Grade 3 (3+2+3), comprising main tumor at inferior aspect of breast (approximately 6:00), with focal histological changes consistent with prior biopsy. This is larger than they thought - sonograms are not accurate. The arithmetic problem above is how abnormal the cells were. Mine were just about as abnormal as it gets, which means they grow faster.

Multifocal invasive ductal Carcinoma, including two additional separate foci of Grade 3 invasive ductal carcinoma, including 0.2 cm focus at 4:00 biopsy site and including 0.1 cm focus at gritty area of lower inner quadrant between main tumor and 4:00 biopsy site, each associated with intraductal carcinoma. There is more than one invasive tumor. The big one had babies!

No Blood Vessel or lymphatic vessel invasion identified. Yay! It appears to have stayed in the breast. My cancer is a homebody, like me.

Associated intraductal carcinoma, Grade 2-3 solid, comedo carcinoma, and focal cribriform types with extension into lobules, comprising 30% of main tumor. That stuff was tunneling through my breasts like gophers

Separate biopsy site, lower inner quadrent (approximately 4:00, showing grade 2-3 intraductal carcinoma, solid, cribriform, and comodo carcinoma types with extension into lobules, 1.6 cm, and associated biopsy cavity Remember when I said I had cancer soup? These are the ingredients

Second separate biopsy site, showing lobular carcinoma in situ (approximately 3:00), with associated biopsy cavity More ingredients

Additional larger zone of grade 2-3 intraductal carcinoma, 4.5 cm, including solid and comedo carcinoma patterns, grossly indentified as gritty zone in lower inner quadrent connected to main tumor mass Oops, a big chuck of meat in the soup

No invasive carcinoma is noted at soft tissue margins (within 3mm of closet, anterior margin) Excellent, that means no radiation

No intraductal carcinoma indentified at margins, although intraductal carcinoma is noted very close to deep margin (within 0.5 cm, and somewhat close to anterior soft tissue margin (within 1 mm) Oh damn, that probably means radiation

Random section from lower inner quadrent shows 0.4 cm focus of solid grade 2 intraductal carcinoma and 1.3 cm focus of lobular carcinoma in situ. Damn, this cancer sprouted like mushrooms in my breast

Nipple shows atypical ductal hyperplasia of subareolar ducts Bad cells even in the nipple?

Benign overlying skin. All that tanning paid off

Tumor Staging: T2, pNO(-1), MX
Main tumor under 5 cms, no node involvement, can't tell if there is metastatic involvement

That likely means I'm Stage II. I'll probably be alive in five years.

Sorry to those who are disappointed by that. (Not really)


Saturday, November 7, 2009

What to buy for the Mastectomy Patient

As much as I hate to be practical - and oh, I really, really do - I thought I'd do a sarcasm-free blog post. People are always asking what to give their loved one who is having a mastectomy.

So, I have listed the items I found invaluable. (This will come in handy if you are looking for yourself, too.)

In the interests of full disclosure - if you click the links in this page and buy any of these items I recommended, I get 4% in referral fees.

Hey, don't fault me, I have cancer, and I'm not working.
  • Neck donut pillow. Whether she'll have expanders or not, she'll have to sleep sitting up for a bit. No matter how well she props herself up, that neck just seems to get strained, and this donut pillow will help. When she doesn't need it for her neck anymore, (I'm 17 days post-surgery and I still do) she can use it to prop her arm, especially if she'd had a sentinal node biopsy or axillary dissection. One day I wrapped it around my side so my arm wouldn't rest against the axillary incisions.
  • General pillows, and lots of them, including a wedge one for stomach sleepers. (She can't really sleep on her stomach - give that one up -  but eventually she'll want to support yourself in way that is not on her back - a wedge can help.)  The first few days, she can barely move.  She'll need pillows for under her knees, for her back, small ones for her armpit and back - oh, just pillows, pillows everywhere! Any place she needs to be, she'll need pillows.  You can't have too many.

  • Here is a resource for breast cancer patients to get a free heart shaped pillow:  They do good work. 
  • iPhone/iTouch (or MP3 player)  Okay, I realize an iPhone isn't a "run to the store and grab it" item.  But, it was essential for me. In the hospital I put in my headphones listened to my "Ambiance" app - I chose the Pacific Ocean, which drowned out the hospital noises, (including my roommates 24/7 Home Shopping addiction) and soothed me enough so I could sleep.   I had rented a movie through iTunes to watch.  I could email and facebook and surf the net without lifting anything heavy.  Oh, and it's a phone, so I could call people.  With the kindle app, I could read a book.   If you are bringing it to the hospital, buy an extra charger as the cable won't be long enough to reach your bed.
  • If you don't have or want an iPhone, you can buy an inexpensive MP3 player.  Listening to music or downloadable audiobooks can also be very relaxing.  I also have a Sansa player and it would work fine for those purposes.
  • Lip Balm.  I'm not sure why - hospital air, medication or just not enough drinking  - but lips get dry
  • Men's Wife Beater shirts.   You can step into them, they go over your bandages easily, and they are really handy for pinning drains to. And, who cares if you make holes?   I lived in mine for a week.
  • Kindle.  Okay, this is another item you won't just grab and go.  But, if your mastectomy candidate has been thinking about getting one, now is the best time.  After surgery, and especially after reconstruction,, she can't do much but read or watch TV.  We all know how I feel about daytime TV, so I won't be recommending it.  With a kindle, you can read a book, download the next one in seconds, right from your pillow-laden bed.   I love mine.  I read three books the first two days. Took my mind off my discomfort and I never had to move.  And, if she will be having chemo - that's going to be a lot of time in infusion rooms, and in bed.  If she's having herceptin, that is a year of treatment.  It will get some use.
  • If a kindle isn't in the budget, a book might be welcome.  Keep it light, and no breast cancer books!   If she's a reader, she's read plenty about cancer.  Recovering from surgery is the time to take your mind off it for a bit.  I read Kathryn Stockett's, "The Help" and thought it was great.
  • Food  She won't be able to lift anything for a while.  Months, if she had expanders placed.  So, casseroles (in aluminum containers) will come in very handy.  Glass is heavy, as I discovered. Who  knew?  Food is one of the things I appreciated most.  My husband is a great guy, but lord, that man can't cook and you can only eat so much hamburger helper before you wish the cancer had actually killed you.  Thank goodness for my coworkers who brought me real food.
  • Thank you cards.  People will send flowers and little gifts. It's nice to have some cards right there so she can address them and mail them quickly.  I have some lovely ones.  Haven't mailed any yet though.  Maybe you should also offer to write them and mail them, if you have a well-intentioned but mail-phobic friend like me.
  • Easy-on clothing.  After surgery there is more swelling than you might think.  Even my stomach was swollen and I'm not sure I want to know what they did to me to cause that.  You can't put jeans on, and you can't button them if you did.  PJs are great at home but you will have lots of doctors appointments and have to get dressed for them.   While pajamas are now common in the grocery store, I've yet to see anybody wearing them to the plastic surgeon's office.  I went to Nordstrom Rack and bought myself some Juicy Couture sweats.  I'd always wanted some, and I figured, now is the time. They are soft, comfortable and don't shrink in the wash.   Button/zip up shirts are the kind  you'll need - baggy enough to hide drains (and lack of breasts).
  • Spanx Bra-llelujah All Hosiery Bra.  After the drains are out, after the bandages are off, before any reconstruction begins she'll need a soft bra, especially if she had a single mastectomy like me.  I found that Spanx Bra-lleluja is exactly what the doctor ordered.  I get support for my remaining side, I can pad the empty side, there are no closures so no reaching around - it's stretchy so you can step into it. It's not binding anywhere so it won't cause any discomfort on broken nerve endings.  They also have enough flexibility so they can be worn during size changes during reconstruction.  They should market these things to mastectomy patients, you hear me Sarah?

Other suggestions:  Medication bottles need to be the non child-proof variety.  I still can't open bottles almost 3 weeks out.   You don't want to hand your young child your vicodin bottle and say, "Can you open this for Mommy?" so make sure you get easy-open ones.   All those pillows I talked about?  You'll need one in the car for the ride home.  Ouch! 

I hope this helps.  A nice gift for somebody you are not close enough to buy a bra for, or if you aren't rich enough to buy a kindle for would be a little gift basket of snacks, a book, some lip balm, some wet wipes, (many doctors do not let you shower with drains in) and some dry shampoo, in case she can't wash her hair.  Bring a chick flick DVD, a casserole and watch a movie with your friend.

Of course, the best gift you can give - is you.

Now, start shopping!


Friday, November 6, 2009

Books Recommended for me

I was browsing kindle on my iPhone, looking at the books that Amazon is recommending for me:

I hope Number 10 isn't an omen.


Thursday, November 5, 2009

Square One

Maybe it was lifting the gallon jug of milk that I poured on my cereal.  Maybe it was lifting the hind end of my poor old dog up.  He can't stand without help anymore.   Maybe it was the casserole dish I took out of the oven last night.

Maybe it was just because.

But, I'm back to square one in my pain control.  I can barely move today.  I feel almost as bad as when I got home from the hospital. 

Maybe a horse kicked me in the chest?  Could that have happened without my noticing?

I learned my lesson.  When they say don't lift anything heavier than a pound, they aren't kidding. 

I'm back to being debilitated.  My dog is back to being the same place all day.  No more cereal and my husband can get the casseroles out.   I'm not testing any limits from now on - it's way too painful.

There is good news.  I saw my plastic surgeon today and the seroma is gone.  I can take my bandages off, finally.  I will get my first "fill" (when he injects the tissue expander with saline) tentatively November 19th.  Then I'll have a budding breast again.

I hear that's uncomfortable too but I'll think about that later.  I need to get through tonight.

Losing weight

Come on.  You know you've always wondered.

I have.

How much does each individual body part weigh?  Let's say you have your leg amputated in a horrible car accident.    Your poor leg, lying somewhere else without you - what's your first thought?  How much it weighs, right?

I can't be the only one.

So, you can imagine how eager I was to get my surgical pathology report.  Not to find out my cancer stage.  Hell, I'm not worried about that.  I want to know what my boob weighed.

A little morbid?  Maybe, but I know I'm not the only one.

Well, am I disappointed!  My path report came back, and my right breast was 386 grams.  Or, roughly, 13 ounces.

I was a C cup, people!  A full C!  Are you kidding me?

Not even a pound.  Huh.

Let this be a lesson to you - mastectomy is not an effective weight loss method.


Wednesday, November 4, 2009

When life laughs.

I never liked going to the doctor.  It takes too much time out from my day.   Sitting in waiting rooms, thumbing through old magazines - boring.  I don't like dudes in white coats listening to my heart, I don't like them asking me personal questions, and I don't like peeing in a cup.   I see my GP yearly because I have intractable migraines and if I don't, I don't get my necessary medication.

Yes, I have to be blackmailed to to go the doctor.

The rest of my medical care, as you know by now, I neglected.  If it didn't hurt, I didn't care.

Here is my upcoming schedule:

Thursday, November 5th.  Doctor's appointment
Monday, November 9th.  Doctor's appointment
Tuesday, November 10th.  Doctor's appointment.
Wednesday, November 11th.  Dentist appointment.
Wednesday, November 11th.  Doctor's appointment

That may not even be all - depends on how my seroma does, and when they want to put the port in

Can you hear the universe laughing?

Tuesday, November 3, 2009

Compression wraps

I got up in the middle of the night last night, because the tight bandages were causing a back ache and I couldn't sleep.  I figured I'd take a photo to show y'all what it's like to have a boa constrictor wrapped around your chest.

Disappointingly, it doesn't look anywhere near as uncomfortable as it feels.

I figured I'd at least turn the photo to black and white to show my angst.

Monday, November 2, 2009

Recovery @ home

I arrived home with a built-in Halloween costume.  I was wrapped with bandages around my chest, from pits to waist, gauze peeking through above and below, a few blood drops scattered about,  the right side of my chest slightly sunken in.  (Only slightly because the left side was squished too.)   Most horrifyingly, I had aquarium airline tubing coming straight out of the middle of my armpit, with a plastic bulb attached at the end to collect bloody lymphatic drainage.  The bulb was hanging to my knees so it swayed back and forth with each lurching, painful step I took. My hair, which I had carefully washed just days ago, was thickened and electrified.

Honestly, I've never felt so fashionable or in tune with the times, what with the popularity of vampire books and supernatural TV shows and all.  I feel like the star of Pride, Prejudice and Zombies.

Guess which one I am?

I'm not going to lie, the first few days were rough.  There was no position that gave me comfort.  My pillows were necessary - I had big ones layered to lean against, smaller ones to fill in the spaces in my lower back and neck, medium-sized ones to rest my arm on.  I was pretty immobilized and every movement was uncomfortable, but I could sometimes find a few minutes relief with pain meds and the right position on the pillows. 

If you have ever had an elephant step on the right side of your chest, crushing it, you know exactly how I felt.  Even though no elephant has yet to step on me, I am positive that's what this surgery feels like.

The worst was (and sadly still is) sleeping. 

I'm a stomach sleeper.  I get into bed, get on my tummy, pull blankets up to my neck and huddle in for the night; my cat warming my lower back.   All that has changed.  I now sleep, propped on pillows, sitting up, confused cat meowing in frustration.

With the bandages and the sitting position, when reaching for pain meds,  I imagine I look just like that zombie, right before it gets out of its coffin. All I need is dangling gauze on my arms, and I'm there.

The first night was the worst as I didn't have enough pillow/head support, but was not able to move at all.  My husband sweetly snored next to me as I felt trapped but unwilling to disturb him - sharp pains in my chest with each movement and breath, making it impossible to change positions.  Fortunately, he woke up at one point, (thank goodness for men and their need for a middle of the night pee) and I was able to ask him to help me move (and give me another pain pill.)

The next night, I did better.  We made adjustments.  I moved my bedside table to a place where I could reach everything.  I had water, pain pills, my iPhone and kindle within reach of my left hand.  I had a better pillow configuration to start, and I remembered that I had one of those travel donut pillows - you know, the kind that go around your neck?  We (meaning my husband) found it, and it was so helpful as I could sleep sitting up but still get neck and head support.

(If you are going to have this surgery or have a loved one who will have it - go get one of those neck pillows.  I'm nine days out of surgery and it's still necessary.)

The cat is getting used to sleeping on my legs.  The cat doesn't whine, I still do.  A cat adjusts better than me. Meow.

As the days have gone by, I've gotten incrementally better.  From not being able to pull myself up at all, to being able to put my knee up and grab onto that with my left hand to help pull myself up, to being able to use my left arm to push myself up - I've gained more movement, muscle control, and freedom.  As they say on airplanes, "you may now move freely about the cabin" and I'm there.... but unfortunately I'm still trapped in that cabin.

I was lucky enough to have my drain pulled a week after the operation.  (Depressingly,  it was removed before Halloween, so there went the best part of my Mastectomy Girl costume.)  As it turns out,  my blood is as thick as my head - it had clogged the drain, so that's why it had to be pulled so quickly. (Pulled is a literal description, by the way.)  Because of the clogging, I developed a very mild seroma in the mastectomy area.  So, now, I have a large ABD pad, a gauze pad, a half inch thick piece of foam core and an elastic bandage under the compression bandages - all pressing on my mastectomy incision and expander wound in the hopes of preventing the seroma from worsening. 

Talking about dressing in layers. 

(If you know what a blister is, you know what a seroma is.   When a space in the body get emptied due to damage, it often fills with lymphatic fluid. It is a not-uncommon problem in mastectomies when lymph nodes have been removed, and the drains are to help prevent it.   Nature abhors a vacuum.)

Let's just say having tight compression bandages with thick foam core pressing on not only a fresh incision, but the balloon expander underneath - for ten days - is really (fucking) uncomfortable. But, the doctor would have to drain the seroma with a needle otherwise, risking infection, and he doesn't want to take a chance with the expander underneath. 

So I'm still rocking the zombie look.

And, dammit, still rocking the pain pills.