Calling all TNs

A massage sound great.......

Linda - I hear the same "get off the boards" advice.  People just don't understand...

Laurajane.  I just read your post and CONGRATULATIONS and super huge ((((HUGS)))) 

LauraJane: 

Have you checked about flying this soon?  Will you need a sleeve or anything.  I only had a lumpectomy, so I'm not all that familiar with the precautions you should take, but I have read from time to time about the flying too soon situation.  Just thought I'd mention it for what it's worth, wouldn't want to see you have any problems.

cc4npg:  Whippetmom, Estepp, Lilah, Myself & Firni are all helping Fumi out!  Fumi still has the final word for full access.

LJ:  I almost forgot!  I went to JC Penneys on line and bought the silicone inserts and some foam ones that had velcro that stuck to my clothes.  Both came in handy while I was going through the expansion process and will work great for now.  If you don't mind slightly used  (I only wore these a few times), I could send you the silicone ones (the others I threw out).  They are a B/C in size, but very inexpensive to buy.  Must sleep now!

Happy Halloween (courtesy of Gary Larson):

Hi!

Kids are scared to come up our long dark driveway.   I've always wanted to play a recording of a dog growling at the bottom of our driveway.   Little too scary.   I miss going out with my son and daughter on Halloween.   Enjoy the holidays.

Happy Halloween!!!!!

Swiftbird & Lynne:  I had to get bifocal contact lenses recently.  I guess chemo changed my eyes and made them worse.  Hope it doesn't progress.  I can't wear glasses--makes me dizzy.

HeidiToo:  You changed your name?  and your location I see!

I am here as well.

Saturday, October 30, 2010

Pink Pee and telling the kids you have Cancer After each chemo injection of AC you pee pink for a little while, and I was disappointed it didn't last all week, just a day.   I thought it was kind of humorous, with all the pink surrounding us.  You see I announced my cancer to family and friends in October and October is the official Breast Cancer Awareness Month.
On October 1st, Mike and I had the daunting task of telling our 13 year-old-son and our 10 year-old-daughter that I had breast cancer.  I HAD TO: no doubt I was feeling selfish at this point, the phones were ringing, I was receiving mail and boxes of information and flowers, and trying to hide them. This was making me anxious.  We have a full-disclosure rule in our house so we all feel safe talking about anything, but... I wanted to wait, I realized it could turn their childhood around forever. One major hold-up had been that my daughter had just found a lump in her breast.  Well, of course we talked about it, the beauty of becomming a young woman.  That it would take some time, so she should keep on enjoying her childhood, but I sensed she needed more with what was to come.  I called her pediatrician and left a lengthy message on her phone in hopes she would know why we were coming in.  I pulled M out of school and told her " I thought you wanted to get checked".  It was darling, The Doctor acted like she guessed what it was, where it was and gave her a talk about puberty, while M squirrelled around in the office, smiling.  Then she asked her to wait outside.  The Doc turned to me and said,  "I had breast cancer 12 years ago, how are you?"  A lovely personal conversation followed, and she said I should wait a few days, and look M straight in the eye and tell her it can't happen to children. After school M and I went bra shopping, what a perfect series of moments, watching her, so lovely and precious.  No ,she didn't need one really, but she needed that day, as did I to always remember.Friday night came around and we sat down and told the kids. We told them I wasn't going to die of this and that it was different than other types of cancers.  That the cure would look worse that the cancer, but that it would all be OK.  We had a little Q&A and decided to go to the YC for dinner.  Good choice, we ran into friends and the moment changed.  Teenagers and tweens don't like to feel like there is something weird or different about them or their families,  and after dinner the kids ran off with their own friends.  Later that night back at home I asked my son if he had told anyone and he said "Yeah!, L's mom has it too and had surgery and is doing great!"  Thank God for small favors.....The next week we caught up with that family and it was truly a profound relief.  Such power in sharing.So now when I am with the kids in Safeway shopping, I say "No, Safeway isn't trying to raise money just to cure my cancer, but that they are trying to help raise money and awareness to continue to find the cure for all breast cancer." Posted by Direct Designs Home at 4:45 PM 0 comments Email This BlogThis! Share to Twitter Share to Facebook Share to Google Buzz Thursday, October 28, 2010SLOW DOWN, It's Only Cancer I found out when a friend of mine started chemo.
I have been very lazy about mammograms, health appointments in general. So one Monday morning, 9/20/10, I decided to catch up. I updated a few existing orders, called and made appointments, hopped in the shower and found a dime-size pee under my arm (which, apparently is part of my breast). I knew it wasn't great as: 1. It was rock hard, 2. didn't move around, and 3. Didn't seem to be a lymph node location.
This of course, expedited EVERYTHING. Wednesday: OB-GYN, Thursday: Mammogram, Friday: Mammogram, Sonogram, needle-core biopsy, Mammogram.
That long bad week include: Court with my thieving Contractor, Crashing my one-year old car into a mailbox, a weekend with a nasty stomach flu, and the following Monday, in Best Buy, the phone call that I had cancer.
I felt so sorry for the PA who called me on my cell. I wanted to console her. She kept saying "are you alone, do you want to sit down, can you call me back?" Finally,"it's bad news", duh. Jeaneau, it's OK, just tell me. You have "poorly differentiated ductal cell carcinoma" I am so sorry, you need to call a surgeon right asap. Me:  It's OK, thank you, I am glad you are the one who told me....
OK, I can do this, call husband (out of town, phone off), call girl-friend who said OH NO, call girl friend who was very open about her cancer a few years back, and I walked out of the store without buying my computer.
Hiding a cancer diagnosis from two tweens is pretty difficult. First you get SO many calls, then paperwork, tons.That was making me TENSE, more on that later.
Lucky for me, I live in a community where one out of eight women get breast cancer, so I know a LOT of survivors, and Doctors, Surgeons, and nurses as well.
Got a hold of hubby who came right home, and spent the next day on the phone with his best friend Rad-Onc (and like a brother to me) talking about the disease, and with my son's friend mother who we carpool with (famous breast surgeon in SF). Kind, thoughtful, informative. Everyone kept saying SLOW DOWN.
Now, for the record, I always move fast. But this time I wasn't thinking about doing anything quickly. I was in information gathering mode, and wanted to know what I needed to do and when, where and with whom.
WEEK One of diagnosis: First, I realized I needed more information and maybe allies. I called the Cancer Care Clinic, where they have a "Nurse Navigator" who is always available. NICE, she said "come-right-in".
Husband (Mike) and I get off the phone, race over, register in a room with 15 plus women waiting in the center, and get whisked upstairs.
I mention that I could create a little notebook system for them, to write everything down in as my diagnosis was still on a Best Buy Brochure, and she smiled and handed me a 1.5 inch binder called "My Journey" filled with everything I would need to know. Wow, I thought, this is going to be a piece of cake. We covered Surgery, Radiation, and Chemotherapy, alternative treatments, life-style changes and how to "navigate" these appointments, and, I thought: doctors and medical offices, appointments, and lab work.
SLOW DOWN, she said. "Most likely this cancer has been in your body for several years and you can take your time making decisions and it is going to take time to get these tests approved by your insurance company" Ummm, I think I can handle the insurance company since I know have time on my hands. I don't want to wait weeks to see doctors. Why are they all on vacation? Is there a better season to get cancer? When you are making the most important decision in your life, selecting your medical team, shouldn't you be able to interview the Oncologist, Radiologist and Surgeon? NOT with this illness. If you want to move this month, take what you can get. Selection by default. Really:  They are trying to "Manage your expectations."
TUMOR BOARD: Mike's friend called a doc who called the collective and they presented my case to the tumor board. They concurred I should see an Oncologist first, and make an appointment with a surgeon.
Well as far as I was concerned, my son's friends mom is the top dog, so I called her cell phone. (YES I know, I am extremely lucky), she was so kind, thoughtful, helpful. "Come in to SF, now, I can help you as a surgeon, a friend, be a partner if you want, make recommendations to other surgeons if you want to stay in Marin...." Wow! I thanked her the best I could and started looking at what the protocol was going to be.
But I am missing information: One breast or two? ER+, HER +,PRO +? Size of tumor?
Nuclear growth or mitosis rate? So, I called the Navigator for the info that wasn't relayed to me on that Monday. She said: Your negative for all three. Yeah! finally, something good. Is there anything else I need to know? No, your doctor will talk with you about it.
MAKE YOUR NAVIGATOR AND ALL DOCTORS AND ALL NURSES WRITE "PATIENT REQUESTS FULL DISCLOSURE" Nowadays, everyone goes home and googles anyway and the first thing I found was she did not give me all the information. Of course, it was 5:00, and I was pissed.
Triple-Negative isn't good. The first thing you need to know is the numbers. She didn't give me the numbers because apparently many people don't want too much information. And to her defense,my numbers were mainly zero. BUT. there was one 1+ in the HER which meant I might have a 10% chance of some additional treatment.
BEST THING ABOUT THAT WEEK: Still wasn't too worried, sent email out to girlfriend posse and requested names, numbers, recommendations, etc. and they were very open and helpful and opinionated. (What I love about you girls).
REAL BEST THING ABOUT THAT WEEK: I brought my car in for repair and the only car they had available was a metallic blue Ford convertible, Mustang. And it matched my cell phone and purse! I drove around like crazy. It was our first heat wave of Indian Summer and I never did learn to put the top up. I decided to rock out and use a little music therapy as well. That gift made me feel so alive, I couldn't be dying.
WORST THING ABOUT THAT WEEK: Information overload, and it wasn't all correct. I consider myself to be "extremely bright-HA" but I could not separate out all the info. I made lists, googled, more lists. Totally confused.
SLOW DOWN, Everyone keeps