Ashley: In Her Own Words

Recently, Kathi pointed me to this blog to read Lorien’s story, about a young woman with breast cancer — a diagnosis complicated by breast feeding, a mother fighting like hell to stay around to raise the kids.

I hate this story.

In 2009, I heard it from Ashley in our oncologist’s treatment suite. She had just been diagnosed with Stage IV Inflammatory Breast Cancer at age 39, when her daughter was 6 and her son was 3. Her odds were dismal, but she lived out loud for two more years. One of her passions was educating people about this rare form of breast cancer, in hopes that no one would have to face a similar diagnosis. And thanks to the generous permission of her husband, I can help to carry on her passion, by offering here a few excerpts from her blog, Ashley: Warrior Mom.

Gratefully,
Katie

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Early April – Opening Day, April 6th actually – I wake up with really bad back pain. I figured that it was related to sleeping funny the night before, one kid had slept on one side of me and the other on the other side and I couldn’t move. We walked all over downtown that day and it was all I could do, and this was after taking Tylenol or Motrin or something which may not seem like a big deal but I never was one to take much medication. It wasn’t better within a day or so and I then attributed it to picking up my children and working in the yard etc., all the things we attribute back pain to.

Around that same time, neither my Husband nor I remember when, I noticed some changes in my right breast. It may have been a week or two before the pain in my back but it wasn’t long. I thought I had a clogged milk duct, my son had been weaning. I knew how to handle those but I couldn’t get it to clear, the hard spot was getting bigger and my breast was getting painful to the touch, not fun when a child rolls into you in the middle of the night.

Then I lost my appetite. Came down to breakfast one morning and nothing, nothing, was appealing. I started to lose weight, had lost about 5 pounds and went to do the MS walk with my friend Trish on Saturday April 25. As we were walking my right shoulder got more and more sore. I actually was in tears and stopped at the ‘medics’ at the water stop. Nothing wrong, just shoulder pain. So that week I called my doctor. I hadn’t been in awhile and they could see me Tuesday May 5th. Cool. I tell the doctor I have these three wonky things going on and that is my limit so I need to figure it out. He checks me out, says “Let’s get a mammogram, a lot of times a breast infection can cause back pain and upset your stomach”, no sense of urgency so he wasn’t worried either.

If you or someone you love is diagnosed with a breast infection, that is probably all it is, BUT if there is not improvement after one round of antibiotics, insist they look further before agreeing to more. There are women who use up valuable time with this aggressive type of bc taking antibiotics that aren’t going to help. (emphasis added)
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So it is the morning of May 7th. I’m convinced I have a nasty breast infection and am heading…for a mammogram…and call my mom on the way.

Mom: “Where are you going?”

Ashley: “I have a mammogram at Good Sam”

“Why?”

“Looks like a breast infection.”

“Do you want me to come with you?”

“No, I’m fine, no big deal.” Boy was I wrong.

Go in for the mammogram, they decide to do an ultrasound (u/s). This is not surprising when there is something weird going on. At this point, the entire right side of my right breast is kind of hard, it is tender to the touch and the nipple is retracting. Evidently the doctor on Tuesday had seen a red rash as well. ALL of these are classic signs of IBC. [...T]he radiologist actually comes in to take a look at it herself with the wand. She looks at me and says “I’m concerned about something called inflammatory breast cancer. I want to do a biopsy right now and I want you to see a surgeon this afternoon.”

ARE YOU KIDDING ME! I looked at her like she had three heads, agreed to the biopsy and am thinking, “Okay, breast cancer…that sucks…but is pretty treatable…I’ll be fine” as I am trying to stay calm while they get ready to do the biopsy. They shoot anesthetic into my breast but evidently the mass kept it from circulating as well as it could so I am crushing this nurse’s hand while they take 5 samples of the mass in my breast and one of the skin (evidently the rash had gotten larger overnight…)

She explains that ibc is aggressive and nasty but I am young. Yipee. So I remain relatively calm through all this, she hands me the info about the surgeon she has scheduled me with in about 2 hours and tells me I should know tomorrow…I call my Husband. That’s when I fall apart. I only remember two parts of the conversation. Him asking “WHO had a biopsy?” and practically shouting “I DID! They are talking about cancer!”…he lets me freak out, gives me tissues, explains that I’ll be fine, it is just a breast infection and walks me to the car again…

Meet general surgeon. Very nice, explains that if it is cancer then his next step would be to put in a port since with inflammatory they do chemo first…I leave his office still in a daze.

I called my mom at some point but I couldn’t tell you when. I don’t think I told really anyone else that evening but I can’t really remember anything about that evening except sheer terror and lots of praying and pleading with God. I spent a fair amount of time holding and hugging my kids too.

Morning of the 8th. My daughter has a Mother’s Day program at school “Muffins with Mom”, she made me the most precious book, we ate muffins and had orange juice and then all head to the gymnatorium (who thought those up?) and I managed to get through the songs and outside before I fell apart…

2:50 – phone rings…it’s cancer.

“This isn’t happening.”
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Note from Katie: May 8 was a Friday. Her journey picks up on Monday, May 11 when she met with an oncologist.

News is still – inflammatory sucks – aggressive and nasty and will start with chemo on Thursday regardless of what the scans say. She keeps the scans that are scheduled and adds a port placement and MUGA scan… I leave still scared to death but feeling a little better because I feel like we are starting to fight it.

So my week is shaping up as…

• Monday – meet oncologist
• Tuesday- CT scan and bone scan
• Wednesday – port placement for easier admin of chemo and other drugs
• Thursday – start chemo
• Friday – MUGA scan (Heart because chemo can be tough on your heart)

So we realize the family is going to be around a lot and there is going to be a lot happening so it is time to tell my daughter. She is 6 1/2. So not fair that she should have to hear this. We sit her down on Monday night and tell her, at least the basics, Mommy has breast cancer, she’s going to take strong medicine that will make her lose her hair and will probably have surgery at some point to take off the breast that is sick. I take her to school the next day and fill in her teacher, the principal and the school counselor.

Have scans, praying the entire time. Have port placement, not too bad and while it was twilight sedation I’d bet I fell asleep given that I hadn’t really slept in days at that point. Go for chemo and to get scan results. They aren’t what we want. The bone scan shows mets to my right hip, two on my spine, one on my right shoulder and one on my skull. The CT shows mets to my right lung and my liver.

I also get scheduled for a brain scan the following Tuesday.

MUGA scan on Friday goes well – now to wait and see if it is in my brain. I go for my next chemo on Wednesday.

Brain mets terrify me.

Spend a tearful morning at church, praying that my brain is cancer free. Go for the brain scan, still praying. Go to get chemo and scan results the next day. MUGA was good, needed that mostly as a baseline. Brain scan results aren’t back quite yet. I tell my doctor that I can’t handle waiting – can she find out for me… she comes back 20 minutes later and says “Yes there is a brain, No there is no cancer in it” – the shelling has stopped as my husband phrases it.

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From Katie: Please take time to read Ashley’s entire story. Her last blog post came out less than a month before she died on August 17, 2011. It is a genuine, human account of a brave and heartbreaking journey. We are fortunate that she left us with such an authentic gift. Thank you for taking the time to read this, and to spread the word about Inflammatory Breast Cancer.

With Gratitude,
Katie
Uneasy Pink

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For further info and help with IBC, please visit the following links:
IBC Help
IBC Support Forum
IBC Research Foundation
IBC Treatment Clinic at M.D.Anderson

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Honoring Ellen

Ellen Moskowitz, Director of Metastatic Breast Cancer Network from 2006 to 2010, passed away from cancer on June 7, 2012. I had known the end was near. Ellen had been in Hospice for some months and we had spoken by phone on a number of occasions. Last week when I called, Ellen was unable to hear my voice over the phone so the nurse repeated my words, phrase by phrase, in her ear.

Knowing that this day was coming, I had sat down on a number of occasions to write a tribute this woman, who has been such a great part of my life since we first met by phone in 2008. And yet each time I tried to write, the words simply did not come. What could I possibly say that would be worthy of her tremendous accomplishments … that would express all that she has meant to me over the years … what could possibly do her justice. So each time the page remained blank.

Today as I once again sat down to write, I thought of our correspondence. Our emails were just as prolific as our phone calls and thus I went to my cache of “Ellen emails”. The first one I opened was an email exchange from some months back. Ellen had written to me concerning changes in her condition … changes which made it clear to both of us that the end was coming more rapidly than we had hoped. She wanted to say her good-bye’s, while she still could, and did so in her email to me. Perhaps the reply that I sent to her says it best and thus I share it now as my tribute to this incredible woman, whose death is such a tragic loss.

“Ellen,

I cannot even express how devastated I am over this news. You have been the ONE person who has been my greatest inspiration, my help, my resource … the ONLY person I have been able to completely depend upon. You are the ONLY person with whom I have been able to share my concerns, doubts, difficulties, frustrations and yet my undying commitment to this cause despite the exhaustion, stress on home life, elimination of non-mets social life and the other challenges that it has brought … because you were going through precisely the same thing.

I remember our first phone call … you’d seen mention of me and my small program in the news. You had Suzanne call to see who I was … then you called me as well. Oddly, I’d never heard of MBCN, but I was very new to the disease. You wanted to know how my little group just starting up was getting more press than you were. I must chuckle over that. YOU were the powerhouse in the MBC community … not us. We had only some minor local press coverage that without a Google alert would have never been seen. But you saw it.

We quickly hit it off … and agreed on everything, including the fact that a duplication of effort was a total waste of time, manpower and funds. And so we each kept our unique missions, but yet worked as a team. It has worked well … very well. But as you praise what we have become, I want you to remember that it was YOUR guidance and assistance that gave me the wisdom and the wherewithal to help METAvivor become the organization it is now. It was I who learned from YOU, not the other way around.

I will miss you far more than any mere words can express. I know I shall often scramble for one of your old emails that gave recommendations on whom I should contact or how I might proceed on an matter of importance. And your voice will surely come to me over and over again as I deliberate a move or an action.

You will live on in the hearts and the minds of so many. You made incredible progress in the field of MBC. Your dogged determination and … yes … your hounding of people and organizations …. it was YOU who made the MBC community one to be reckoned with and that legacy will live on forever.

I will be in touch … and hope we will still be able to chat for a time. Know that you are constantly in my thoughts, that you will never be forgotten … and that METAvivor will forever be indebted to you for all that you did to set us on the right course.

I cherish the fact that we are the best of friends and colleagues … not only in this life, but in whatever life may come after …

with my deepest love and affection, CJ”

~ CJ

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