Sunday, July 31, 2011

A New Normal

I have foobs.  That's fake boobs.  It's slowly becoming my new normal...but it hits me all over again at least once a day--my breasts are gone, and one nipple will soon be gone too.  I think it will be a lot better once the reconstruction is done, though...then at least my foobs will be made of my own flesh, instead of these heavy, hard, uncomfortable expanders. 

I also have brand new eyebrows and eyelashes!  And I'm shaving my pits and legs again...yay.  My head is sporting a crop of fuzz...not really a head of hair yet, but I have stopped wearing hats and scarves in public.  It's just too hot, plus I'm really tired of wearing them.  I donated a bunch of cancer hats to the Cancer Resource Center at the hospital...they have a 'hat room' for people who need them.  And I'm going to send back the wigs and scarves that my Aunt Mary loaned me.  It feels good to be purging my house of these things.

I start taking tamoxifen tomorrow.  One pill a day for 5 to 10 years.  It is supposed to increase the hot flashes...it's actually a good sign if it does, because it means it's working.  There are also some other possible minor side effects, and a slight increased risk of uterine cancer.  That worries me, but I'm going to concentrate on the benefits--it's going to help keep cancer cells from growing back!--and try not to worry about it.

This week I saw a physical therapist, who taught me all about lymphedema and strategies to try to prevent it...and gave me exercises to strengthen and stretch my shoulders and arms, to get my range of motion back.  So now it's up to me to actually DO the exercises, plus try to do some kind of regular exercise like walking...things I am not used to making time for. 

This week I also had a counseling session, and went to the support group...both were extremely helpful to me in dealing with a lot of my emotional stuff.  I also started driving again, although I haven't yet been up to going out alone with Griffin.  I still feel like I need help with him, carrying him and getting him in and out of his car seat etc.  He is a heavy and active toddler!  Going out with just the girls is fine, though...one of my first times driving was to take them for their school physicals.

I want to say a HUGE thank you to Heather and Casey, who are planning a fund-raising century bike ride which will raise money for us...a lot of their friends and family have already donated to us via the ride, and we are so very very grateful to them...as well as to other generous people who have also contributed money to us recently.  It is impossible to express how overwhelmed and thankful we are.  Some of the ways we are using this money: paying some of the smaller medical bills; prescriptions and supplements for me; splurging on organic veggies for my morning anti-cancer juice; buying new ultra-soft stretchy bras and camis to wear post-mastectomy; taking the kids to the doctor. Thank you thank you thank you!

It's hard to believe it will be August tomorrow...summer will be ending soon, radiation treatments will be beginning soon.  I'll keep you updated on how that goes.
Love you all,
Liz

Friday, July 15, 2011

Nipple Confusion

This week has been confusing and emotional for me.  After getting the 'all-clear' last week from my surgeon that keeping both nipples was safe, I got a call this week from the senior member of the surgical team at the Center for Breast Health; she told me that my pathology report had come across her desk, that a 2mm margin is not enough, and that she is very nervous about me keeping the right nipple.  My radiation oncologist agrees that it is a gray area, it would be very controversial to keep it, and he would not advise it, although it is ultimately my decision.  Unfortunately my surgeon is out of town for a month, so I can't discuss it with her and find out how she came up with the 2mm number.  Now that I'm doing more research on it, everything I read says I was not a good candidate for nipple-sparing surgery.  Luckily, I don't have to do anything right away...if I decide not to save it, I can get it removed later during my reconstruction surgery...so I have some months to figure it out. 

My appointment with Dr. Denduluri, my oncologist, was also emotional.  When I walked into her office, I was reminded of the first time I went in there to meet her after I was just diagnosed...and I started crying before we even began our appointment.  But she was very encouraging and positive.  I was worried that my pathology report was especially full of CAPITAL LETTERS (they put anything that was found to be cancerous in caps)...but she said it wasn't as bad as it seemed.  I do know now what stage my cancer was; stage IIIa.  She gave me my prescription for Tamoxifen, which I will start taking on August 1st...this is the hormone therapy drug which will keep estrogen from feeding any future cancer cells that might decide to appear.  I will take it for at least five years.  It is supposed to cause even more hot flashes--as if I wasn't having enough already.  I also got a prescription for physical therapy, which I am looking forward to taking advantage of; hopefully it will help me avoid getting lymphedema.

Meanwhile, I am recovering well from the surgery.  I took myself off the Percoset today.  I don't really need it anymore, and Tylenol is working fine.  The pain has lessened quite a bit, and I'm mostly feeling a lot of discomfort rather than pain.  It's a very weird feeling of being raw UNDER my skin, as well as a lot of pressure from the implants which feel like rocks.  My right arm still has a lot of numbness, and my armpit is completely numb...I hope that will gradually improve.  My strength is going to take a while to come back, I'm afraid.

I have had a lot of wonderful visitors this week, who have helped with everything from laundry to dishes to taking care of Griffin and the girls.  Thank you a bunch to Beth, Sara, Lisa, Jessica C, and Jessica H; and a huge Thanks to Kim, Arlene, Sara and Jess C for the delicious meals this week!  And I don't know what I would have done without the help of Emma, Paul, Mom and Dad, and of course Nathan.  Thank you Kerstin for being there for me when I needed you.  And thanks again to Rashne for a wonderful camp for Lily!
Love you all,
Liz

Friday, July 8, 2011

Update from Liz: Pathology Report

Liz writes:

"I saw my surgeon today, and got my pathology report.  It's very long and complicated, and I'll be going over it in more detail with my oncologist soon.  But here are the major points in a nutshell:
1. I get to keep my nipples!  There was just enough (2mm) of a clean margin to make keeping the right one safe, and the left one was fine.  Very glad about that.
2. It turns out doing the bilateral mastectomy was a very good choice.  Some stuff was found in the left breast, which never showed up on the MRIs or mammograms, that is abnormal.  Not pre-cancer, but kind of like pre-pre-cancer.  It's called atypical intraductal epithelial hyperplasia.  It might never have developed into cancer, but I'm relieved that I'll never have to worry about it.
3. My surgeon removed 27 lymph nodes, and cancer was found in 6 of them.  The report says metastatic carcinoma was found in the 6 nodes.  That word (metastatic) is scaring me.  The surgeon didn't mention it, but now I am very anxious to discuss this with my oncologist.  I think it means that the cancer had moved from the breast into the lymph nodes...which I already knew...but seeing the word in the report is scary.
4. There was a lot of bad stuff in my right breast:  multiple small spots of invasive ductal carcinoma, measuring up to .6cm; the larger and smaller tumors that were showing up all this time on the scans, which the chemo reduced but were still there, the larger one which was in a lymph node measuring 2.3cm;  multiple microcalcifications;  an extensive field of  high-grade ductal carcinoma in situ (DCIS--stage 1 breast cancer).  There are a lot of other technical terms in that section of the report, which I will be asking my oncologist to interpret. 
5. All of that bad stuff is OUT of me now!  I am in shock at the extent of the cancer (I knew it was bad, but seeing it written in the report made it so frighteningly real), but am relieved beyond words that it is now out of my body. 

I am so grateful that I will be able to get radiation therapy (starting end of August), which will be kind of like a "clean-up crew" coming in after the surgery/chemo and zapping any microscopic bad cells that might possibly be lingering.  And so grateful as well that I will be able to benefit from Tamoxifen, the long-term drug that will keep estrogen and progesterone from feeding any more cancer cells in the future.  I'm reading the book The Emperor of All Maladies--a Biography of Cancer; it's a fascinating book so far, and it makes me so thankful that I'm living in this time and have such a good chance of surviving.  Just in my lifetime, chemotherapy (the way it's used today, with combinations of drugs) has been developed from an idea to reality, and even more recently Tamoxifen and other hormone therapies have been invented.  To all the scientists and doctors who developed all these ways of fighting cancer, which used to be thought of as impossible to treat let alone cure, I am forever grateful.

A big huge thank you to Kara and Alexa, who brought us two more delicious meals this week, and to all the wonderful ladies who have had the girls over for playdates: Rashne, Arlene, Adele, Stacey, Janet, and Kathy!  Go Camp Green!  Thank you Kim, for your bravery and friendship, which has inspired me to also be as brave as I can through all of this.  Thank you to Kerstin Perini, of the Cancer Resource Center at the hospital, who came to see me twice in hospital and brought the lovely pink basket of breast cancer 'swag', which has been very helpful.  (If anyone wants to donate to help provide these comfort baskets to other breast cancer patients, here is the info: www.KeepTheCandleGlowing.org).  And thank you to my husband and family...there are not enough words...

I will post again after meeting with the oncologist and plastic surgeon next week, and keep you all updated regarding radiation therapy and the pancreas issue.
Love you all,
Liz"

Thursday, July 7, 2011

Post-surgery update

Liz writes:

It's over...the surgery is done, which is a big relief.  I had such anxiety about it, so I'm just so glad it's over with.  It went well, I slept through a lot of the first night and day afterward.  Whenever I was awake the first night, I felt pretty miserable, especially when the nurse made me get out of bed to try to pee...I got really nauseous and dizzy.  But since day 2, I've been feeling a lot better than I expected.  I got home about 5pm the day after surgery.  The hardest part right now is not being able to pick up Griffin and care for him, and not being able to give the girls a big hug.  The drains aren't fun (I have two drains coming out from each side, which drain fluid so it doesn't build up and put pressure on the surgical sites)...they need to be emptied several time a day.  My pain is being managed well by a continuous pain pump, as well as oral medication.  I'm taking antibiotics, vitamin c, an immune booster, a homeopathic remedy, and probiotics...to hopefully stay healthy and avoid infection.  My right arm is numb...hopefully that will go away soon, probably the swelling is pressing on a nerve on that side.  I have a good appetite, and am just resting, eating, drinking fluids, and sleeping.  Lots of family members and friends are helping with the kids this week, I am so grateful for that.  Thanks to Sara, and to Kathy and Topher, for some really yummy meals!  And a big thanks to my wonderful husband, my brother, Emma, and Mom and Dad, for being at the hospital with me throughout my stay.  And thanks to everyone for your thoughts, prayers, phone calls, emails, and facebook messages...it all has really helped me get through this!

I see my surgeon on Friday and will get the pathology report then.  Please pray for my nipples!  That sounds really weird to say...but keeping them is very important to me...so am praying that the biopsies taken from them will come back clean.  I'll post another update after Friday's appointment.

Love you all,
Liz