Saturday, October 31, 2015

Happy Halloween!

Happy Halloween everyone!

If you live where I live, your day today is going to be cold and rainy. Not the ideal trick-or-treat weather, but I'll be toasty and warm inside since I'll make the husband take Mister Man out around the neighborhood! ;-)

But after he gets done, I think we'll curl up on the couch and watch some Halloween movies.

We have already decided to stream Monster Squad on Netflix tonight. I remember watching it with my cousin when I was maybe young middle school? So we'll watch it tonight, and while watching it with me isn't nearly as cool as watching with you cool cousin, he's just happy I'm letting him watch it!

Netflix has lots of fun Halloween choices - from The Nightmare Before Christmas (which is my oldest child's favorite) to Curious George: A Halloween Boo Fest, there's lots of ways to keep the kids entertained tonight after walking around in the cold, rain to get all that candy!

Though to be honest, after the kids go to bed, I'll probably keep on working my way through NCIS. I'm in love with Gibbs and Abby and Tony and Ziva! And the oldest is going to watch scary movies with a close friend all night.

Which sounds like a good way to end the night to me!

Happy Halloween everyone!

Friday, October 30, 2015

Holly's Story

The next story comes from Holly.
Before reading, here's what you need to know about Holly
Married 35 years
2 adult children
professional job in the legal field
Hobby: avid knitter (maybe make that rabid knitter)
And now, Holly's story
My story began in April 2014 when I had a mammogram on the way to a tasting for my daughters wedding. I was called back for an ultrasound on a second date but didn't think anything of it because I have dense breasts and often get a call back for an ultrasound. However, this time the radiologist said he thought I should have a biopsy on my left breast. I still wasn't concerned as I'd had a biopsy in the mid 1980's that came out clean and I resisted the biopsy because the biopsy was a very unpleasant procedure (I was sitting in a chair in a mammogram machine and had a large needle (no lidocaine) inserted in my breast to guide the surgeon. I passed out due to the pain and my chair rolled back with my breast still in the machine). The radiologist was insistent and I scheduled the biopsy for May. I was so convinced this would be another false alarm I told the radiologist to call me with the results. A week later I got the call at work that the biopsy was positive for breast cancer. I was absolutely paralyzed with fear, anger and depression. I called my husband and 2 friends and then proceeded to make an appointment with a surgeon and oncologist.
My surgeon is young and beautiful enough to be a model. She was wonderful and told me that I'd live to my 90's and die of something other than breast cancer, this would be a bump in the road. She recommended a partial mastectomy or lumpectomy because my tumor was small, 2cm. My consultation with the oncologist was not quite so pleasant, she explained I had HERS2+ breast cancer, it was aggressive and I should start chemotherapy ASAP. I refused as my daughters wedding was a month away and I didn't want that joyous occasion marred by the side effects of chemotherapy.
While sitting on my surgeon's exam table waiting for a lymphedema pretest I got a call from the hospital that my father had been admitted and I needed to immediately get there with his Health Care Proxy and Living Will. I rushed to the hospital with documents in hand and had to make difficult end of life decisions for him. The doctor didn't think he would last the night at that point. Less than a week later I had my first lumpectomy and the following day my father died. The next day, while still on pain medication I was planning my father's funeral. Prior to the funeral I received a telephone call from my surgeons nurse that the pathology report showed I had DCIS in the margins and I would need more surgery. After another consultation with my surgeon and an MRI that showed nothing, I had another lumpectomy and the DCIS was removed.

My daughter was married July 12th, I had my port put in July 17th and started chemotherapy with Taxotere, Carboplatin and Herceptin on July 18th, 2014. The side effects of the chemo were flu like symptoms and diarrhea but they paled in comparison to the bone pain from the Neulasta shot. I was grateful that the shot boosted my red blood cells enough to work but the pain was horrible for 1 1/2 days. Luckily through a cancer buddy from work and What Next I learned that Claritin taken before, during and after the day of the shot helped with the bone pain. The first time I saw my oncologist after chemo I complained about the diarrhea but hadn't kept track of the frequency so couldn't tell her how bad it was. I missed a family wedding that required a plane flight because I couldn't be that far from a bathroom. I spent the weekend of the wedding depressed and angry that I couldn't be with my family. After my second infusion I kept daily track of side effects on a calendar I found on line and was able to demonstrate how bad it was. We postponed my third chemo and discussed switching from Taxotere to Taxol. I refused the change because my research indicated Taxol has a greater likelihood of neuropathy than Taxotere. My dose of Taxotere was reduced by 20% and I was given a prescription for Lomotil.
I started losing my hair a week after my first chemo infusion and was bald by August 1st. I decided I would not be a victim to this dreaded disease and threw myself the first of 2 henna parties. I got a beautiful henna tattoo on my head and it gave me the courage to go out bare headed. The wigs itch like crazy!
I finished my last strong chemo November 11th and began the radiation part of the journey. I discussed hypo fractionated radiation with my radiologist as it was winter in New England and I didn't want to be trudging through the ice and snow in the early morning for radiation. Luckily he agreed I was a candidate and I had 16 radiation treatments and 4 boosts to the tumor area. I finished radiation on December 31st, 2014 in time to celebrate the new year.
In February my husband who had been my rock during my treatment was diagnosed with prostate cancer. He was told to lose as much weight as possible and surgery was scheduled for June 2, 2015. He was able to lose 25 pounds and the surgery was successful. Thankfully he made a rapid recovery and was almost his old self in July 2015.
 A beautiful court reporter I worked with cut her hair really short, similar to a man's butch haircut. She looked sleek and stylish and gave me the courage to ditch the wig in March 2015.
My Herceptin infusions lasted until June 29th, 2015 and I finally finished all the recommended treatments for my HERS2+ invasive ductal carcinoma. I was really glad to be DONE with treatment!
We celebrated both of us being NED (no evidence of disease) by going on a 12 day trip to Ireland in August 2015 that had been postponed from 2014 due to my treatments.
The things I found helpful during the horrible year were journaling my thoughts and feelings, keeping a breast cancer board on Pinterest, doing daily guided meditation, my wonderful family and friends who kept telling me "you can do this" over and over and some short term therapy in March 2015 when I had a scare that cancer spread to my bones. Luckily, a bone scan revealed it was arthritis and bursitis. I thank the researchers, doctors and patients in the early clinical trials for Herceptin every day. Were it not for them and their efforts it is likely I would not be here to tell my story.

Thursday, October 29, 2015

Linda's Story

Linda has offered to kindly share her story with us as well.

My name is Linda Walsh, and I'm a mother, wife, and grandmother.  I'm also a three year survivor of Breast Cancer.  I live in Crystal Lake, Illinois, which is a very good community to raise a family.  People here still help each other and when I got sick, many people helped out my family by bringing meals, giving me rides, sending cards and so much more.  My diagnosis and treatments took about 16 months of my life.  It was not an easy journey, and without my family, friends, and church members, I might not have made it through the whole way.

My diagnosis came at the worst possible time for our family.  In August of 2012, my son, age 19, had fallen from a tree and was severely injured.  Two major surgeries, 11 days in the hospital, and he had to drop out of college because of the injuries.  He had shattered his shoulder, and his elbow, and had other major injuries.  I quit the part time job I had and went into caregiver mode.  He needed help for basic needs.  It was a grueling month or so that included being driven to doctor appointments, physical therapy, and so much more. 

Then I got my yearly notice for my mammogram. Didn't think anything of it and went.  I had false positives before, so when the tech said to come back later for an ultrasound, it still didn't occur to me that anything was wrong.  They set me up for a biopsy the next week, and on our 24th wedding anniversary, I had the biopsy.  Two days later, we found out it was cancer.

I never knew there were so many kinds of breast cancer, and the stages.  I then had to have a lumpectomy, a port installed and chemo started before Christmas.  It was like having the flu for months.  They ended up taking me off the heavy drugs after four times out of a scheduled 6, because I was so weak and ended up in the hospital 3 times. 
Radiation was in the Spring. And I had never been so tired in my life.

It probably took a good year afterwards to feel human again.  The experience was pure hell, and I would not wish this on a mortal enemy.

As for Pink for October, I like the awareness that the pink ribbons get, but I do think it has been too commercialized.  All these companies claim they donate the proceeds of their products but sometimes, it's as little as 1 percent.  And pink products are everywhere, from yogurt, to water bottles to shampoo (a real slap because most of us lose our hair during chemo) and many other products. 

One organization that I dealt with during this whole battle was the American Cancer Society.  I had been involved with Relay for Life for years because a good friend's husband had passed away from lung cancer at age 42.  So that was the organization that I called.  They sent me booklets about cancer, food to eat, and all kinds of other information.  There is an 800 number that is answered 24/7 that will help you with any questions.  And they also provided me with a wig, and scarves and hats for free during the battle.  To me, this is the organization that really does a lot for patients.

I do believe that most of the breast cancer comes from the environment.  I grew up in Cicero Illinois, and three of my friends also has had breast cancer.  One of the ladies passed away from breast cancer at age 52, leaving behind a daughter, a spouse and grandchildren.

I recently became a grandmother for the first time to a baby girl named Natalie.  I'm also due for my yearly checkups in October.  And if the cancer comes back, I will fight it again, with all my heart, for that little girl.  Even though Cancer is a Bitch, and it's treatments are horrible, I would go through it all again for my family.

Oh, and even though I am on yearly check ups now, I still get a bit paranoid and upset and lose sleep over the upcoming doctor appointments and mammograms.
On a bonus note: Linda is also a knitter and crocheter (there seems to be quite a few of us out there!) And when she sent me her story, she told me it was okay to not use it, but it helped her a lot just to put it into words. I'm so glad it did and glad I can share it here!

Wednesday, October 28, 2015

Chris's Story

Our next story is from Chris.

My story is simple.  I was diagnosed with DCIS in the right breast.  When I saw the surgeon he said I could do a lumpectomy because it was localized; however, he was concerned about a spot the radiaologist missed at the 5:30 position and the other two spots were at 2:00.  Our radiaologists leave something to be desired in this town I live in.  They have a reputation of being lax and not following through and rushing through the mammograms.  I was sent for an ultra sound and the technician could not find the cancer and had an attitude of "your wasting my time" which did not help my morale.  My surgeon ordered an MRI on both breasts because of the spot that was missed.  The MRI picked up a whole bunch of spots in my left breast.  I had dense breasts and was never told.  So I went two years without getting a mammogram.  Next time I saw the surgeon he told me they wanted to do and MRI biopsy on the left breast.  I told him to forget it just take them both.  I didn't want to end up with another type of cancer that was going to require radiation and chemo.  Because the cancer was localized I didn't have to go through that treatment.  However; the surgeon who did the reconstruction was not available for my reconstruction after the mastectomy so I ended up getting three more operations to get the reconstruction done.  The first one was a DIEP used with fat from my stomach.  It didn't take.  I was losing weight so consequently I lost volume so I opted for implants.  Had that surgery then had to go back because he left me lopsided in the stomach and the belly button disappeared.  So that had to be fixed.  I had the nipple reconstruction on June 1st this year and am waiting to hear if the insurance company is going to cover the cost of the nipple tattooing.  It took me two years to decided whether or not I wanted nipples made so when he contacted my insurance company they refused to pay on the grounds it was cosmetic.  He was on the phone with the Group Health doctor for some time and they finally approved the nipple reconstruction.

It has been a nightmare for me and I am still suffering the shock of it all.  Right now I do not feel like the reconstructed breasts are part of my body.  I feel detached from them.  Maybe after the tattooing is done I might feel better about myself.  Anyway, that is my story.


Chris has e-mailed me an update that she did get her tattoo done. She's still getting used to it though! 

Tuesday, October 27, 2015

Carol's Story

Today's post is from Carol. Carol says "I'm a painter and digital printmaker, a native Brooklynite who will live in Brooklyn until death do us part.  I live with my boyfriend.  I'm a firm liberal; love cats, good TV, social media, books, food, and lots more.  I'm glad to be alive."

Here is what she has to say about breast cancer:

I was diagnosed sixteen years ago with stage 1 breast cancer (I was fifty-one at the time).  I'm a Brooklynite and was able to get treatment at MSKCC.  I had a lumpectomy and sentinel node biopsy (outpatient).  My tumor turned out to be triple positive.

Because my cancer was HER2-positive, I had four rounds of A/C, but I didn't need Taxol.  At that time, Herceptin was being given to only metastatic b.c. patients.  I had radiation as well.

Five years of Tamoxifen followed by five years of Femara.

Having cancer and then undergoing treatment was, of course, life-altering (at least at that time).  I was able to work (part-time, as I had been doing all along), do my artwork (I'm a painter and, now, a Photoshop printmaker), and socialize.  I want to never again have to go through that (obviously), but I always am expecting that, someday, I may develop another cancer.

I credit the amazing medical team at Memorial Sloan-Kettering Cancer Center for saving my life, and many, many other lives.

{Brandie}, I wish you the best.



Monday, October 26, 2015

A bit late, but ...

Once again this year, I asked for people's breast cancer stories, and a few people chose to share with me!

Starting tonight, I'll be sharing their stories and I'll keep sharing until the end of October - which is at the end of the week! And don't mind me while I say, thank goodness this month will be almost over! =)

Wednesday, October 21, 2015

Surviving and not surviving

For the last few years, October has been a hard month for me.

This year, it is particularly so.

My goodness, I chastise myself, why can't I be like the women on tv: happy, sparkly, pink, shiny, proclaiming with fervor that early detection saved my life and cancer was a gift and it changed me for the better. Why can't I be a better survivor?

The picture of breast cancer as this happy thing to be celebrated with pink parties and show your bra day and don't wear a bra day and show off your cleavage and buy pink scissors and eggs with pink ribbons and yogurt with pink lids and hey, while you're at it, you can even watch porn for the cure!

It's all so upbeat and happy.

And it's driving me to the breaking point.

Because that is not my reality. That is not helping me. And in talking to other "survivors," it's not helping them either.

At least, I think to myself, I'm not alone. I'm not the only person who is struggling to deal with this.

Except, nagging at the back of my head, is the knowledge that there are also people in the same boat as me who are enjoying all of this, who hang bras on their front porch and attend the pink parties and wear with pride shirts that say "survivor." And around us people talk about them in such uplifting ways: She's a fighter! they say She's so strong, no way cancer would take her from us! they compliment her. Look at how positive she is about this, her great spirit got her through! 

And somehow in the middle of all of this, I just want to crawl into my bed, curl up into a ball, and cry.

I want to cry because I do not feel strong.
I want to cry because I do not feel positive.
I want to cry because I do not feel cancer is behind me.
I want to cry because of my migraines - that started from treatment.
I want to cry because of the bone and joint pain - from treatment.
I want to cry because I have to take yet another nap because I never did get energy back.
I want to cry because I wonder if my kids will remember me when I was energetic and healthy.
I want to cry because of all the friends I've lost.
I want to cry because a friend just told me her cancer came back and is stage iv.
I want to cry because another friend was just newly diagnosed.
I want to cry because someone else messaged me to ask how she could best help her friend who is newly diagnosed.
I want to cry because I'm grateful that I'm still alive.
I want to cry because October, the Pinktober version, doesn't feel like it's for me.
I want to cry because I think I must be doing it wrong.
I want to cry because another woman has died from breast cancer.
I want to cry because I wonder if maybe someone didn't make a mistake by allowing me to get through treatment successfully when women who were smarter, wiser, and were making a greater difference in this world did not.

And there my friends, is the crux of the problem.

A month that is supposed to be so good, happy, and uplifting, and it just leaves me feeling terrible and not good enough. A month in which I am supposed to be held up as a good example - after all, I had breast cancer but I was "strong enough" to beat it, leaves me feeling weak and unworthy.

Do not be mistaken: women who have died from breast cancer were not not-fighters. They were not not-strong. They were not not-positive. They were not any less deserving than I to go through treatment and come out on the other side.

And yet, they didn't.

They were strong, intelligent women. Women who were loved and valued and making a difference in this world.

And all the pink parties in the world didn't save them. All the bras as decorations didn't save them. Buying pink things didn't save them. Football players wearing pink socks didn't save them. 

And it breaks my heart.

Because I'm still here.
And they are not.

October is a hard month for me. I can hardly leave the house and not be inundated with pink stuff and breast cancer awareness. For that matter, I can hardly be in the house and not be inundated. It's on tv. It's on products we've bought (not for that reason, but it's there). It's in the ads we get in the mail and the newspaper. It is everywhere.

I haven't found my place among it all yet. I haven't figured out what my role in all of this is yet. Most days, I am overwhelmed with just getting through the day.

Please don't misunderstand what I'm saying here - I know that people mean well. They want to be supportive. I appreciate that. When a friend says her son wears pink socks to his football game in honor of his grandmother, it touches me. When another friend shares the story about how a whole neighborhood came together to paint pink pumpkins to honor a neighbor about to start treatment, I think that's awesome. When someone else dyes a stripe of her hair pink to honor her mother, I wonder if I should get a pink stripe too!

That is touching and means something to that person and those they are supporting or who's memory they are honoring. But pink eggs? And yogurt? And scissors? And pink socks on pro football players? And all the races for the cure in which almost no money goes to a cure? Misleading facts on billboards and ads? Women showing off healthy breasts to honor the disease that took mine from me? Interviews with women who no longer have breast cancer that paints them as winning the battle because they are strong (implying that those who "lost" the battle must not be)? Companies that hike the price of something up 50% because it pink and brag about donating as little as 1% back to breast cancer organizations?

All of that? All of that weighs on me and makes me so angry. It piles on top of everything else I am feeling this month. All the sadness. All the pain. All the worrying that I'm doing it "wrong." The gratefulness to still be here. The wondering of why me - why did I get cancer? Why do I still get to be here? The thankfulness of a loving family. The support of friends. The knowledge that 110 women will die today from breast cancer.

This is October from where I am standing. This is what I see when I step up on my soapbox to talk about breast cancer and awareness and education. This view that encompasses so many feelings and emotions and fears and worries and happiness and love. It's all there. But the darker side feels amplified this month. Like, to counteract the image of the smiling, happy, bald woman (which I am not) I must balance it with the realities that I face.

I survived breast cancer.
But I do not feel like a survivor.
And when this month is focused on survivors, it makes me feel like a fraud.