Notes to My Family: December 20, 2010

Hi everyone,

I wanted to share the latest update with you.

On Thursday, D, mom & I went to my second follow-up appointment with my plastic surgeon. He removed my second drain. It was just as painful as the first time but thankfully the pain doesn't last and now I'm free of drains! After, he used a little magnetic tool to locate the port in my expander and proceeded to give me my first post-surgical expander fill using a connected needle-catheter-tube-syringe contraption. The filling of the expander didn't really hurt. It was more like stretching, followed by tightness, followed by slight pressure, followed by enough pressure that it felt like a small child (maybe Papa?) sitting on my chest and that made its way all the way to my back. By the time I asked "is there much left?" he was just about pushing the last bit of saline out of the syringe. I have my second, and possibly last, fill this coming Thursday (the day before Christmas Eve). I was told I could finally get rid of the surgical bra I've been wearing since surgery (now I've graduated to zip-up sports bras) and that I still couldn't do any exercise other than slowly and gently walking on a treadmill (I did that today & learned the true meaning of boring!). I'm starting to set up our first consultations (read: interviews) with medical oncologists. I haven't taken any drugs since I got the first drain and the dressing removed; the remaining pain really hasn't been enough to warrant it. I have been setting up the blog and will probably send out the link soon. This way, I can post updates there and don't have to bug people with long e-mails. Plus, you can just check-in whenever you are interested.

Good luck with all your Christmas preparations & end-of-year craziness! Don't get too stressed!

Love you all, 

Diane :)

Books I've Read (and enjoyed or found useful)

Dr. Susan Love's Breast Book by Susan M. Love, MD

Why I Wore Lipstick to My Mastectomy by Geralyn Lucas

Nordie's at Noon by Patti Balwanz, Kim Carlos, Jennifer Johnson & Jana Peters

Gift Ideas: Great gifts I received and appreciated that someone else being treated for (Breast) Cancer might love

• toiletries (lotions, antibacterial hand soaps & body washes)
• goody bag of cough drops, Evian facial spray, scented wipes & lip balm
• clothes (zip-up sports bras; button-front shirts)
• comfy PJs (soft flannel button-front shirt; cute slinky romper)
• warm fuzzy house socks
• house plant
• flowers (I'm not a flower person and actually loved receiving flowers because they really liven up a space when you are forced to sit in the same room, recovering for weeks on end!)
• chair cushion (the kind that has the back & arms; provided extra support on the couch)
• multi-position (L-shaped) pillows (made it possible for me to sleep in my own bed at night)
• comfort set including neck pillow, eye mask & ear plugs
• books (see my book list for specific ideas)
• movies & music (I went through A TON of movies while recovering at home; I think I reached the end of Netflix!)
• journal
• box of greeting/thank you cards
• spa gift card
• food (a lunch out; a week's supply of meals; pizza brought to my home; a box of cookies)
• Starbucks gift card
• pink ribbon water bottle for the gym
• lucky stuffed animal
• company (shopping for button-front shirts; in hospital, while waiting to go into surgery; at appointments; to support group meetings; at home while recovering; on my first few subway rides post-surgery)
• ride to the hospital
• hospital visit
• pink ribbon Christmas wreath
• anesthesiologist (we were hooked-up with an anesthesiologist through mutual friends)
• tips & insight from others who have been through it
• lots of beautiful cards and genuine offers of assistance

Useful Items (for recovering in hospital and at home)

• chair cushion (the kind that has the back & arms; provides extra support on the couch)
• organic deodorant (not required but an option if you have lymph nodes removed and want to be extra careful with that side)
• headbands & ponytail holders
• surgical camisole (with pockets to hold drain bulbs)
• button-front shirts; zip-up hoodies & zip-up sports bras (for when you can't lift your arm over your head; I wore my zip-up hoodie over my gown in the hospital)
• loose, stretchy tanks & nightgowns that you can step into (for when you can't lift your arm over your head)
• comfy stretch pants or PJ pants (i wore these under my gown in the hospital and at home while recovering)
• books (for reference or insight; see my book list)
• lotions, lip balms, Evian facial spray & cough drops (for dry skin & throat from dry rooms or from treatments)
• antibacterial hand soap & body wash
• multi-position (L-shaped) pillows (made it possible for me to sleep in my own bed at night)
• scented wipes (for "sponge-bathing" until you can shower and even between showers)
• notebook & folder or binder to keep all your notes & paperwork organized
• basket to keep everything you need near you while recovering (lip balm, prescriptions, iPod, etc.)
• professional hair blow-out (kept me from having to fuss with my curly hair)
• baby powder (used as dry shampoo to keep hair from getting greasy while straight for weeks)
• box of tissues
• box of gauze brought home from hospital
• activities to break up the usual activities (i made a couple friendship bracelets; played Scrabble with my husband & painted my toe nails)

Notes to My Family: December 8, 2010

Hi everyone,

Today I had my first follow-up doctor's appointment since returning from the hospital. One of my two drains was removed (somewhat painful but I'm definitely more comfortable without it). D said it was really long and disgusting looking. I didn't watch.

The plastic surgeon also removed my dressing and we got to see exactly what the Frankenboob looks like. It looks great - - aside from being the wrong size & shape, half numb and completely nippleless! (It's a work in progress, obviously.) There's no bruises or anything. It's like a weird Barbie boob sitting high up on my chest. I have to continue wearing the surgical bra and I can start spacing out the Percocet with some good old-fashioned extra-strength Advil.

While we were at the hospital they still hadn't heard back from the pathologist. A few hours after we got home we got a phone call from the breast surgeon. She had finally heard back from the pathologist and it was all good news! Just as we suspected there was extensive DCIS - - through three of four quadrants! (So still good that we got rid of the whole boob.) But NONE of it was invasive! Also, the margins were completely clear with room to spare so there doesn't appear to be any need for me to have radiation! Also, the lymph nodes were clean too.

So what now? I am still sitting on my butt, restricted to zero activity for the next week. The two weeks after that I will still be in recovery but will be able to move around a bit more. I'm still taking pain meds as needed. I see the plastic surgeon again next Thursday for either another drain removal, or my first post-surgery fill (he filled up the expander a lot while I was on the table), or both...I can't remember. After that I can probably get rid of the surgical bra and switch to zip-up sports bras and start SLOWLY working back up to my normal activity level again. As in, walking slowly around the block or very slowly on a treadmill, to start.

The reconstruction process will continue for the next few months.

I will also likely start meeting recommended medical oncologists now to pick one and start talking about mostly likely getting on Tamoxifen for the next five years.

So, that's the news for now. I'm gonna see if I can get a blog up and running so I can avoid these massive e-mail distributions.

Thank you all for everything you have been doing! The gifts, visits, food, well-wishes, coming to the hospital, etc, etc. You have all been wonderful!

Now, as the trip to the city was a bit too much excitement for one day and I'm surprised I have made it to 10PM ...I will go take some drugs & pass out!

Love, Diane :)

Notes to My Family: November 10, 2010

Hi Family,

As most, if not all, of you know by now, almost 3 weeks ago I was diagnosed with Ductal Carcinoma In Situ (DCIS), which is considered Stage 0 Breast Cancer.

This means that from what they can tell from the stereotactic core biopsy, the cancer is trapped in place in the milk ducts and is not moving or growing.

That said, they don't know exactly how often this condition becomes an invasive cancer (they think it may be up to 50%); therefore, it must be treated. It is found, diagnosed & treated in the same ways as invasive cancer.

In my case, at the end of September, the nipple of my left breast began bleeding. My gynecologist felt almost certain it would be nothing serious but just to be thorough she took my blood, prescribed my first ever mammogram (good times!...NOT) and a sonogram, and referred me to a breast surgeon. The mammogram showed extensive suspicious microcalcifications throughout the entire left breast, which prompted the referal for a biopsy...and thus kicked off this journey I have only begun on.

If you haven't already noticed: there is no lump! There is not always a lump when you are talking about the earliest stage of breast cancer. Very important! That bloody discharge was the key and probably makes me a very lucky girl.

As I said, the microcalcifications are very extensive and cover the entire breast, from top to bottom, front to back. This means there is no way to get them all out and conserve the breast. Therefore, I will be undergoing a unilateral mastectomy of the left breast, with immediate implant reconstruction.

Given my young age, lack of family history & healthy lifestyle, I was approved for genetic testing, to see if I had a mutation of the BRCA 1/2 genes. The test came back negative. This is good news for our family. That said, they believe there are breast cancer-causing gene mutations out there that have yet to be discovered.

The cancer is ER/PR+. That means that the cancer cells are sensitive to estrogen & progesterone (naturally occurring in the body), which will help them grow. The treatment for this is to prescribe Tamoxifen, a drug that blocks the hormone receptors on the cancer cells so that they can't get access to the hormones. This is given to reduce the risk of recurrence or a new cancer. Generally you take Tamoxifen for 5 years. While you are on Tamoxifen pregnancy is to be avoided. If we felt strongly that we wanted to have children sooner than 5 years from now, it may be possible to stop the drug after 3 or 4 years, given that you do benefit from each year you are on the drug; however, given my young age & all the years I have to live & possibly get a recurrence or new cancer, it's probably best to do the full five years.

Radiation may or may not be required after my surgery.

Surgery will be on December 2nd at Lenox Hill. It takes up to a week to get back the pathology from the surgery and find out the extent of the cancer. Let's hope they don't find any thing else. I am also having a sentinel node biopsy, where they biopsy just the first 2-4 lymph nodes in the armpit area. So, let's hope for clean nodes and no invasion in the breast tissue!

I wanted to make sure everyone had the basic information, at the very least to add to your records of your family medical history.

Check to see if I got any emails wrong or left anyone out. I'll try to keep everyone updated.

Love you all!,
Diane :)