The weeks since my last post have been extremely difficult.  I was swallowed up by a black hole and have been clawing my way out ever since.  I have experienced some of the darkest depression ever.

Each week has presented a new challenge: a new chemo to try,  a change in the mass (getting larger), horrible chemo side-effects and on and on.

I tried a very expensive drug called Avastin, that I am still awaiting final approval from my insurance company to see if they will pay for it.  I went back to a treatment of A/C – the very first drug I took in May with the horrible side-effects.  This most recent treatment made my white blood cell count plummet and I ended up in the hospital for 3-days last week due to fever and the low count.  I was pumped full of IV fluids and antibiotics.  The fear was that I had some kind of hidden infection.  Fortunately,  all the tests and cultures came out negative.  It was just the chemo side-effects.  I came home on Saturday and saw a doctor on Wednesday. My counts are slowly coming back to  normal and no more fever.  Unfortunately, I have developed a terrible mouth sore. I wasn’t able to eat any Thanksgiving dinner with the exception of slurping down some mashed potatoes.  Everything hurts; even water.  I managed to drink a protein smoothie last night.  This morning I had some yogurt.    This is tough as I need to eat protein and be physically strong for Tuesday.

My left breast is very painful.  I have plenty of drugs but I am trying to power through it without any. The most effective drug is morphine. If I take it all I want to do is sleep.  There is a lot to do before my surgery.  My dear friend Laura from California is flying up to be with me post surgery.  This will take a lot of pressure off of Erik.  He certainly needs a break.

My doctor has been in the hospital the past couple of weeks. I don’t know what is wrong. I did get an email from her but it was brief (and supportive).  This has contributed to some of my depression.  I felt a bit abandoned.  I have come so far and am facing surgery and really needed reassurances from her.  It has been hard to see other doctors who know nothing about me.  Fortunately I met my surgeon back in June and we had a good rapport.  Originally I was going to have surgery the week of 12/7 but the consensus is to just get the cancer out.  It’s not getting better, it’s not really responding to chemo and it’s very painful.   Due to the change in surgery date and the holiday, the surgeon only has time to see me at 5pm on Monday and I have surgery the next day!!!  I did speak with her briefly over the phone but I still have so many questions!

So, the past few months have been very difficult.  I have been living week to week and can no longer handle that emotionally.  I have fears about the surgery; how it will go, what they will find when they do the pathology, could I need more chemo or will I go straight to radiation?

My radiation plan is twice a day, 5 days a week for approximately 8 weeks.  I understand the main side-effects are fatigue and skin irritation.  That sounds much easier to handle than the chemo side-effects I have endured.

So, this is where I am at.  I am ready to leave these months behind. I am not feeling particularly philosophical or feel like waxing on.  It’s about moving forward.

Apologies to those people who have emailed or written and I have not communicated with.  You are always in my thoughts and I appreciate of your support.

Hugs,

Lori

Supportive Friends

Keeping me company at chemo

Dahlia Festival

Gorgeous flowers

Moonstone Resort - Oregon Garden

Romance Package: Flowers, chocolate and wine at dinner

Feeling sassy at the Oregon Garden

Erik frolicking in the flowers

Beautiful sunflower and bumble bee

Having fun on the deck at our B&B - Newport, Oregon

A gorgeous day at Newport, Oregon

Team Portland Spirit - Race for the Cure

Family & Friends - Race for the Cure

Dr. Devon & I at Race for the Cure

Beginning sketch for head painting

My silly friends

Me and my hubby

Such a wonderful gift from my awesome girlfriends

Sweet Talon

I had a new chemo regimen yesterday of Carboplatin and Taxotere.  When I see Devon next Wednesday and we review  how my body has responded to this treatment I will know more about my time line for surgery and radiation.  So, medical updates next week.   For now…pics of the amazing things in my life.    Hold tight…they will be posted tonight.

My husband and I have been “training”.  I have walked just a bit over a mile.   I realize this isn’t close to 3 miles, however, I am confident that the encouragement of my team, family and friends will push me to the finish line.

I had chemo on Wednesday and Stacy and Barbara visited and brought lots of snacks and goodies. Thank you Stacy for the peanut butter and jelly sandwich!  My white blood cells counts were low so I have had 2 days of neupogen shots.  This has made me exhausted and very achy so I haven’t walked for the last couple of days. Tomorrow I am determined to do 2 miles.

It’s 8:30pm and I can barely stay awake.  I will post after the race.  Oh, my doctor, Dr. Devon Webster, will be interviewed by the news at 7am race day. When I know what channel I will be sure to let everyone know.

The race is fast approaching on Sunday, September 20th.  It’s not too late to donate to me and my team, Positive Margin.  I am rockin’ on my goal and am on my way to being one of the top fundraisers out of 170 on my team!  Please help me crush my goal!

The very important thing is that all this money will help to support breast cancer research.  I am amazed at how many doctors are not familiar with Inflammatory Breast Cancer.

To donate, copy and paste the address below which will take you directly to my personal page.

http://rfcp.convio.net/site/TR/Race/General?px=1830745&pg=personal&fr_id=1110

If you have any trouble with this, then please go to:

http://www.komenoregon.org/

click on “make a race donation”

click on “search for participant”

Type in Lori Miller

When you see the search  results at the bottom, click on my name and you will be connected to my personal page.

I would like to give a very special Thanks and Shout Out to my coworkers and their team, the Portland Spirit Dingheys.  They have made some very generous donations of money and time to support me in this event.  You are all so awesome.

And, to all of you out there who are supporting me.  I am overwhelmed by your kindness

Much Love,

Lori

It has been stressful waiting for the results.  I had my genetic counseling and blood tests this week as well.  It will take 3 weeks for the results at which time I will have to make some tough decisions regarding my surgery. Below is a link to the National Cancer Institute explaining what these genes are and how their presence impacts a person’s risk of developing cancer.

http://www.nci.nih.gov/cancertopics/factsheet/Risk/BRCA

I met with the plastic surgeon and I have many different options available which makes it more difficult!  Again, the results of this test will help make some of those decisions clearer.

This news couldn’t have come at a better time.  I had a very rough weekend. My white blood cell count was low again so I had to give myself 4-days of Neupogen shots.  These shots cause intense bone pain.  It was also a tough weekend for me mentally.  Sometimes I feel like I am stuck in a box, a cancer box.  It is so hard to clear one’s mind and not think about it.  With all the tests and decisions pending and weighing on my mind, it is omnipresent.    Using the metaphor of a battle is accurate.  My mind is always battling the thought of cancer.  My husband and I sat down last night to chat and he said he would talk but not about cancer.  We have a nice mini-vacation coming up. We are escaping for 4-days (it’s a surprise so I don’t know where we are going.  It will be local).  I am going to try my hardest to not talk about my illness.  I am chemo free this week so I should be feeling really good by the weekend and next week.

I have become close to one of my fellow patients. She was diagnosed earlier and has 3 chemos left and then is scheduled for surgery on October 2nd.  She has her imaging coming up.  I pray that her results are as positive as mine were.  She is a very dear person so if I am not thinking about myself then I am worrying about her!  Again, the battle continues.

Here’s to positive, cancer free outcomes!

I found the workshop to be a fun time for Lyn and I to just play around and be silly.  There were some wigs as well and my friend Stacy took pics and was quite helpful with makeup tips. We had a wonderful lunch together afterward.

The most valuable lessons I learned was how to make by brows more prominent. I miss my nice, dark, thick, italian eye brows!  The techniques to mask the dark and  puffy circles under my eyes were great.  My husband was taking a few pics of me the other day and kept retaking because he would look at the pic and say, “that just doesn’t look like you”!  Well, yes and no.  No, it doesn’t look like the healthy Lori of a year ago.  Yes, this is what Lori with breast cancer and the effects of chemo looks like.

Those of us who have breast cancer are facing some very tough realities and decisions. We will undergo genetic testing to determine if we carry the BRAC1 and/or BRACA 2 Genes.  If a woman tests positive for these genes then her risk of developing breast and ovarian cancer increases significantly.   The best course of action for survivabilty it to have a bilateral mastectomy and a hysterectomy.  In one fell swoop a woman will have all things that make her female removed!

As I anticipate this test which I will have in 2 weeks and the decisions that I will be faced with, that silly day of  fun that the Look Good Feel Better organization provided was just what I needed.

I will be reimaged next week to “see” if there is anything going on.  I will have a mammogram, CT scan and utlrasound.  Send your good thoughts my way for a positive outcome as well as to ease the anxiety I will feel leading up to Thursday.

Last week I completed my third Taxol/Carboplatin treatment.  These have turned out to be rougher than I expected.  My white blood cell count was low so I was prescribed Neupogen and learned how to give myself  injections.  Neupogen is a man-made protein that stimulates the growth of white blood cells.  I had to do daily injections for 3 days and by day 3 I was a pro!  Unfortunately,  the main side-effect is bone pain, add that to my  chemo side-effects of muscle aches, and one has some pretty miserable days.  Day 3, post chemo, was the worst.  In addition to the aches and pain, I developed a fever that was close to 101.  I spoke with my doctor who advised me to drink fluids and take tylenol.  I was able to get the fever down which saved me a trip to the hospital.  Today I feel much better physically and emotionally.  I am trying to lock this all away in the cancer compartment in my brain and move forward.  I have had 2 good days and will have another one before it starts all over again.  If my counts are up round 4 shouldn’t be so bad.

The difference between the impossible and the possible lies in a person’s determination.
Tommy Lasorda, baseball manager

What is Triple Negative Breast Cancer. Quoted from www.tnbcfoundation.org

These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors.

Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple negative breast cancer.” On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis,9 triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.