My Letter to the Editor

This is a letter I recently sent to our local newspaper.....I am really hoping that they run it!

My family and I would be grateful if you would run this letter.

Dear Editor,

Cancer is not a color. In the month of October, everywhere you turn you see the color pink. Most often, pink does not represent the Metastatic Breast Cancer patient. For those who have not heard of Metastatic Breast Cancer (or Stage 4) before, “Metastatic” refers to the spread of cancer to different parts of the body: bones, liver, lungs or brain. Stage 4 is treatable, but no longer curable.

My mother was diagnosed with Stage 2 Breast Cancer in September of 2010. Fast forward to October 2012 and she is battling against Stage 4 Metastatic Breast Cancer. Even though our family has been fighting this disease for two years, I was unaware of what Metastatic Breast Cancer was when mom received this terrible diagnosis.

Just because you have early detection of breast cancer does NOT mean you are guaranteed a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms. About 6% to 10% of people are Stage 4 from their initial diagnosis.

There are an estimated 155,000 women and men in the United States living with metastatic disease, fighting for more treatments to extend their lives. I urge everyone to find out more about Breast Cancer and Metastatic Breast Cancer. By educating yourself, your family and friends, you will do so much to advance the mission of stopping this dreadful disease. Please visit http://mbcn.org/ to learn more about Metastatic Breast Cancer. Educate yourself to raise awareness!

Pneumonia.....

So I chatted with mom yesterday and she told me that she ended up going to Dr. Greenfield because she was worried that she had pluerisy. She had had this during the first round of her IV chemo back in November of 2010.

Here are my notes from talking to her:

She had a chest xray which showed the start of pneumonia in the upper left lobe. She is going to be on antibiotics for the next 10 days. She can go ahead and start her next chemo treatment without it affecting the antibiotics. The only things she can't take until after the antibiotics is her calcium pill.

Dr. Greenfield does not think it is a tumor in the lung. The tumor under her arm is smaller and the tumor in the middle of her chest (the open sore thingie) is smaller and has been drying up. He feels the Xeloda is working.

She will be on the chemo pill indefinitly....I guess until it stops working. She reported no side effects from the chemo.

She said that she was with Dr. G. for about 1.5 hours and that the appointment I was going to go with her to on Thursday has been cancelled. So for now I just have to take mom at her word, although it seems that she told me and my sisters all the same story this time. SHOCKER!

So far, so good on the Xeloda. Mom looks good, no hair loss. On to the next treatment which should start 10.24. I need to confirm this date with her and keep her on track!

Update on doctors

Mom began her Xeloda, which is a chemo pill, this Wednesday (10.10.12). She will take this pill once in the morning and once at night for the next 7 days. She'll have a 7 day break and then we will repeat this again. I believe that after the second cycle we will go back to Dr. Greenfield to chat. Let's hope and pray that this drug takes hold!

I wanted to back up to Monday of this week however. I was sitting at my desk at work and recieved a phone call from Flo from Dr. Bergman's office. She asked for mom, to which I told her who I was. Flo said that it was imperative that mom get to their office that day to begin chemo. I then explained to Flo that we were moving in a different direction and were changing doctors. She said fine and we hung up the phone. Roughly 2 minutes later I recieved another call from Flo. This time she said that Dr. Bergman wanted to speak to mom now and that, again, she needed to get in TODAY to start chemo IV. I told Flo that that wasn't happening and that I would email mom to call the doctor.

So I emailed mom.

And she called right away and was pissed.

I think she thought that I had called UH, but I told her that they called me trying to get in touch with her. She was not happy at all that they were being this forceful.

When I talked to mom a little later, I was a little shocked at what she had to say to me. She said that she spoke with Bergman and that he said she is doing the wrong treatment, it won't be aggressive enough and that she is just postponing IV chemo, because that is what it is going to come to. Basically she is shortening her life by going with another doctor. WHAT THE FUCK?

Our new doc LISTENED to mom when she said that she doesn't want to be debilitated again. Our new doc spent OVER AN HOUR with us. Our new doc did a THOROUGH exam on my mom. How dare Bergman tell mom that she is killing herself? I;m sorry, you are the motherfucker who let my mom get to fucking stage 4. I think I have to stop writing, I feel my heart pounding in my chest because it makes me so mad that that fucker would say that to mom. Where was he a year ago? Enough of him.

At mom's today

My little family and I went over to mom's seeing as how we had an open house today. I took the kids over around 10 and then Brian and I went over around 1. When I got there, my mom picked up Colin to which my dad promptly yelled at her. Her shoulder is still hurting her and she really shouldn't be picking up the kiddos. I really feel bad for her. My mom wants to be a very active grandma.....having dad yell at her wasn't exactly awesome.

So anyways, we decided to stay for the Browns game. Mom and I chatted, but it was nothing huge. Kinda the same as it has always been. As we were sitting there, I felt like I should ask her "stuff" so that when she passes I know all about her. But we've never worked that way. Mom is kinda private and I've never really felt comfortable asking her some things.....like was I breastfed? How was her labor with me? How did she work full time with 3 kids? My mom doesn't like the focus on her, so I never really ask those "personal" questions.

Anywho, I asked her about her friends Rita and Dana. They were really tight with mom and dad for a long time. Both Rita and Dana work at Avery. Mom then went on to tell me that she and Rita barely speak anymore and that mom thinks it's because of her cancer. She said that many people treat her differently now. That really makes me both sad and confused.

Confused because my mom has never really changed since the diagnosis. Sure, during the tough treatment times she has some pretty fucked up mood swings, but at the core she is the same woman.

Sad because mom needs her friends right now. She really does. I instantly thought of Annie (my only reader :) and Susie. I would certainyl hope that those girls would be by my side through anything. I know my mom has lots of friends, but it really just breaks my heart that some of her friends can't tell that she is the exact same woman she was a couple years ago. I had just assumed that all was well.....I guess not though.

Mom was telling me about some of her other friends though which makes me happy. I just feel such a loss for mom. Hasn't she been through enough? Now some of her friends feel uncomfortable? I htink that is just shameful. I have half a mind to call Rita and Dana.....but mom would KICK MY ASS if I did!

Pinktober

I forgot to add that in my last post why I labeled it "into the pink." I never really "believed" in the pink ribbon before mom was diagnosed. I worked for United Way and always felt that your money should be given locally.

When mom was diagnosed I immediatly turned to the Komen Foundation. I needed to identify with someone, something. I quickly was turned off by all of the pink. Turned off by the smiling survivor faces when my mom was losing her hair in October. I was watching football one Sunday and it was all I could do to not cry. The freaking teams were all wearing pink to raise awareness.

So far, I have been......pleasently surprised. Maybe we are too early in the month. It hasn't been in my face. I am grateful for that. I do like to wear my pink ribbon because it makes me feel that my mom is close to me. Here's hoping to a semi-pinkless month.....

Into the pink.....October blows.

Another October is here. Another October it seems as though we are finding out a lot about mom's cancer. Why is it always that shit hits the fan in the beginning of October?

Here goes the rundown of the last two hellacious days:

Wednesday, October 3, 2012
Mom had a meeting with her oncologist from University Hospitals, Dr. Bergman. This is the onc. that has been in charge of mom since August 2010. When mom pulled up next to me and looked into my car, she looked pissed. I immediatly knew that this was not going to be fun. As we were walking into the appt, something was off. Once we got into the doctor's office I found out what was wrong.

As mom undressed, I found that she has three lesions on her chest. The lesions are bigger than a quarter and you can clearly SEE the lumps and bumps underneath. Upon furhter investigation with my sisters, no one knew about these growths....not even my dad. When Dr. Bergman took one look at the lesions, he said without a doubt that it was cancer. He then said "We are losing this battle." Word for word that is what he said.

After this he told mom that she would need another PET scan and that she had no choice but to go through another round of chemo. He explained that the cancer was winning and he wasn't sure if we could catch up. He essentially gave her a death sentence.

He decided to immediatly stop her hormone treatment since it wasn't working, but she did get the shot of bone strenghtener. A PET scan was scheduled for Friday. When we left, mom told me that there was nothing to worry about. That the chemo was going to knock it back.

It was an awful day.

Thursday, October 4, 2012
On the way into work I called mom to see how she was doing. She told me that she was thinking of getting a second opinion with Dr. Greenfield from the Cleveland Clinic. Halleilujah!!!! I knew what I had to do.

As soon as I got to work, I looked up Dr. G and called. I spoke to Catherine who proved to be an angel. The angel that we have been looking for for 2 years. They got mom in at 2:00 THAT DAY!

After a mess with getting the records transfered over, which ended with Dr. G. chewing out some ass at UH, my mom, Katie and I were sitting at the Cleveland Clinic in Willoughby HIlls.

Dr. G came in and asked mom to start at the beginning. He then did a super thourough exam which included him agreeing with Dr. Bergman that the lesions on her chest were indeed cancer. In his words it was "without a doubt." He also found a small lump in her right (only) breast.

He did a neuro exam which still has me freaked out. Mom is not very good with her left hand responses. I've been doing the hand motions all day.....it was really hard to see your mom struggle at something easy.With all that she has been through, seeing her not being able to use her hands and fingers as she wished shook me.

He agreed with all of the treatments that Bergman gave mom, but he offered some different treatments from this point forward. He offered two chemo PILLS that mom can take that might not make her hair fall out. He offered a clinical trial that can OVERCOME her hormone aversion. He said that if all else fails we can do IV chemo. We were astounded with a feeling of HOPE.

His directions were to get the PET scan on Friday, he would have results at 10 am and mom was to call him at noon to find out where we were going with this. We left knowing that this doctor was going to take mom and try his damndest to make her better.

Friday, October 5, 2012
Today was the day. Results came back that there is no organ involvement, but that the cancer is in two new places: the right breast and the hilum of the left lung. Not IN the lung, but kind of above it. The cancer that has been in her has spread intensly and has gotten very large. This, of course, concerns me. Mom will be starting the chemo pill next week after meeting again with Dr. G. 7 days on, 7 days off for 6 weeks. Then re-evaluate.

God please help my mom. Grandma Perkins please help my mom. Uncle Hank please help my mom. I can't lose her. My sisters can't lose her. My dad can't lose her. Our children can't lose her. Keep her around to annoy the shit out of me. I love my mom. I love my mom. I love my mom. I love my mom. Please god help my mom.

Been awhile.....

So I noticed that my last post was in June saying that mom's PET scan came back awesomely. As a matter of fact, Dr. Bergman said that her cancer was roughly 95% gone! 95%!!

Fast forward to the beginning of August. Mom felt a lump under her mastectomy site. "It's just a calcium deposit" she said. Well, in fact it was cancer. The cancer that was GONE (almost) in June was back with a fierceness. It not only came back in her spine, bones, ribs, lymphnodes, it has moved to her shoulder. What a freaking nightmare. Apparently the once a day pill she had been taking had stopped working.

Now our plan of "attack" on the cancer is a shot in the butt of estrogen each month and another shot in the arm of bone strengthening medicine. We should have another scan sometime in October.

I haven't been going to my mom's appointments with her....mainly because I haven't been thinking about it. Is that horrible of me? I feel like I am so overwhelmed/not overwhelmed at all, that I can't keep my thoughts straight. Sometimes I think that the Zoloft is suppressing my feelings and thoughts a little too much.

And as we just had the second anniversary of her diagnosis, that also means that this October will be the third October that I have to have BC shoved down my throat at every turn. I can't even watch football because they will be wearing stupid pink. I love pink and I love the movement, but a whole month is overwhelming to someone who has to deal with this everyday.

I just read a wonderful article today that I want to share:

Beyond pink

This is written by a stage IV warrior. I feel that it is so touching, sad and beautiful.

Until next time......