Too many souls were lost in 2013

It was a tough year for women with metaplastic breast cancer. We lost a number of women in our group and countless more we never met. Here are a few of our own we want to remember:

Nancy Manguso: I never spoke to Nancy but I’ve spoken to her daughter Beth many times.  Nancy was an inspiration to Beth and to many of us as she endured difficult chemo regimens and participated in trials. Beth worries about how she will manage without the love and support of her mother. She knows her children will have slightly lesser lives without the opportunity to meet and learn from their grandmother. And for us we know that without women like Nancy there will be no scientific advancement.

Brenda Perry: Brenda had an unshakable faith. She was stage 4 long enough to endure multiple chemo regimens and even as she learned the last one didn’t work and prepared for the next, she believed everything would be ok in God’s hands. She said she rarely got down and if she did she would simply pray and in a bit she would feel much better. There was no time for pity in Brenda’s life. She left behind grandchildren, two daughters and a loving husband who posted this news upon her death:

“My wonderful and beautiful wife Brenda Perry 's battle with cancer came to an end this morning. She is in God's hands now.I will miss her for eternity.”

Janet Famous-Wettig: Janet was the mother of two grown children. Her daughter was a college athlete, playing La Cross at the University of Cincinnati. She was an inspiration to the young women on the team and looked forward to when her daughter came to town to play an area university. I always wanted to meet Janet but I had thought there was more time. She was the first woman to friend me when I joined the online support group. I continue to see photos posted to her page by her many friends who miss her dearly.

Dr. Mindy Green; Leah-Anne Marshall; Mary Chadwick: These ladies were all so young. Mindy had offered advice on lotions to use for radiation. She was an example to us all on how to handle cancer with dignity. Her facebook page still has a beautiful photo of her with her adorable little blonde curly headed daughter. Leah-Anne was still using her wedding photos on her page, that’s how newly married she was. And Mary’s last post was a photo of her little girl standing next to Santa. Each was so full of life and I’m sorry we didn’t have more time together but I’m even more sorry for the little ones they’ve left behind and the young men who have lost a lifetime of making memories with these beautiful ladies.

From Monica:

Pam Hansford Ogletree: Pam was such an open heart. I remember I was new to the board and was headed to MD Anderson. She was already there and saw Dr. Moulder in the cafeteria line. She told her that I and Ilana would be there shortly. When I saw Dr. M she was impressed with how close we all were...Pam barely knew me but treated me like a sister! I miss her.

Dr. Mindy Green: Mindy was an inspiration to me. She was so amazing and had such faith. I am still devastated that she is gone. I didn't even realize she was stage 4 until she was very sick...so I never got to tell her how inspiring she was to me.

Andrea Blake: Andrea was THE most positive person I have ever known. She didn't feel sorry for herself for one possible second. She was always a beacon of light and a treasure to know.

From Stephanie:

Andrea Blake: She was a RN with experience working neurosurgery and most recently in the ER. She's from Nova Scotia. IYears ago she also worked off shore on an oil rig as the nurse.

Mom to Jackson and Kennedy (teens). Kennedy must have just finished high school b/c she just got accepted into a four year nursing degree program. Andrea was so proud.. Very loving toward her kids and friends. Loved by many friends and was a part of a big family that meant the world to her.

As an ER nurse she was the type of person who was ready for anything and everything. She accepted and loved people. After her cancer diagnosis she refined her ability to keep negative things out of her life. She tried very hard to see the positive side of things. One of her blog pieces (the one I like the best) she listed all the terrible negative things about cancer and then discussed how she was able to find the positive in that very bad thing.  She would say "I'm working on being more Zen about that" if there was an issue that triggered impatience or hostility.

And lastly, she was a music lover. Especially the blues. I mailed her a package with about 20 CDs of blues music about a week or so before she died. I hope her kids are listening to her kind of music

Amy Leader Scott: Nicola Jiggle; Doreen Austman; Wendy Croft Salinsky; Michelle DiGiovanni Ivers: I wasn’t fortunate enough to get to know these women but their loss is still felt amongst the women in our group. We know that even though our time together was short and only superficial and from a distance, each of these women made their marks on the lives of the people who loved them.

And, the world is a lesser place without them all.

Cha, cha, changes

I watch the ripples change their size
But never leave the stream

 At first I didn't question the pathology report. It was hard to focus on much past the places where the word "carcinoma" was written. It took a few weeks, maybe even months before I started to look for additional information in the report.

I was reading and article on the P53 gene, then one on cytokeratins, then epithelial to mesenchymal transition. I quickly began to wonder where could I learn about my IHC or if there was a mutation in my P53 gene. This search brought me back to my path report where I found some of the information I was looking for. Then I checked my genetic tests, the BRCA and BROCA tests. (I still need the BART)

When I didn't find all of the information I was looking for in the pathology report and genetic tests I started asking other MpBC women about their results. Some women had detailed path reports for certain but others had reports that only said "metaplastic carcinoma" and nothing else. No subtype, no IHC, no detail at all.

My second pathology report was from a needle biopsy. It said in part, "... consistent with metaplastic carcinoma with areas of spindle cell carcinoma and squamous cell carcinoma, acantolythic viariant."

 I was anxious to read the final path report from the subsequent MX. I wanted confirmation on the "acantolythic viariant" I was curious about that aspect of the tumor. Remarkably, the report for the mastectomy merely stated "metaplastic carcinoma" with no other detail. I was so frustrated I could have spit.

It may be different for ductal/lobular carcinoma but with metaplastic carcinoma there is more to know. Is it spindle cell, matrix producing or maybe squamous? Or is it some spindle and some matrix? Is there an element of IDC? How much? What's the percentage of IDC and does the treatment change based it?

On one hand I understand that knowing all of the details isn't really going to help any of us today. We will be offered the basic triple negative treatments because that is the standard of care. (Whether it is effective or not, they don't have another option.) But at the dawn of the era of personalized medicine the pathology of each tumor should be the foundation on which we build. The details MATTER. That information needs to be in each report.

Today, there doesn't seem to be any consistency to reporting the details of a tumors make-up in the pathology report. This has to end. Every tumor must be analyzed for it's immunoreactivity and cell type, not just it's size and shape. The answer to our questions and the solutions to our problems lie in knowing these details. Let's make it our mission to change the way things are done and create a system where this information is identified and cataloged for every tumor so our researchers can  discover the individual treatments we each require to kill the cancer we have, not the cancer that is "kind of like ours." Who is with me?

Here is a link to a recent article on the need for a new system for biobanking metastatic tumors.

 Changes- David Bowe

I can see clearly now the rain has gone

I was sitting in the exam room at the oncologist's office. My husband had his arm around me as we waited for the doctor to come in. I had a box of Kleenex on my lap because I knew I wasn't going to make it through the appointment without crying. Why should this day be any different? I had, after all, been crying daily for the past 10 or 12 days. Emotionally, I was at the end of my rope. I knew I couldn't do this any longer.

Physically, I wasn't in any better shape. My skin was ash gray. I had two black eyes. I could barely walk from the car to the door of the doctors office. I was bald (naturally). I looked like an actual cancer patient, something I had managed to avoid for most of the other 14 chemo treatments I had taken in the past year.

About a week earlier while lying on the couch I had announced to my husband, "I'm not doing any more chemo." I told him I couldn't take any more. "I'm going to tell the doctor when I see him, that this will have to be enough because I just can't do any more. I'm done."

My husband, who was sympathetic to my cause and who had not wanted me to have to do chemo in the first place had told me he was O.K. with that decision. Each time I started crying over the next week, he would put his arm around me and say, "It's O.K. it's over. You can tell the doctor when you see him."

So, there we sat in the exam room. I was bracing myself for a small fight. I figured he would try to convince me to take the last two treatments. I was close to being done anyway.

The doctor walked in and said hello. He sat down across from me looking at the results of the blood test. He looked up and said, "You're blood counts are not good. Are you bleeding?"

"Bleeding? Like I cut myself bleeding?" I asked.

"Yes," he said. "Like that."

"No, I'm not bleeding that I am aware of." I responded.

"Well, we need to get you into the hospital for a transfusion. You're hemoglobin is at 5. You won't be able to get your next treatment tomorrow."

I start to cry, "I don't want to do anymore." I say. "I can't, I'm exhausted."

The doctor looks at me and looks down at the blood report. "Well, three is the magic number." He says. "I think three cycles (1 cycle equals 2 treatments) will have to do. We've been pushing you because you are young and healthy but I think you've done as much as you can."

I'm still crying but relieved. I'm so tired. I can barely move or think clearly but I know he is not trying to convince me to continue with the treatments. I've been so worried that not doing the chemo would put me at a higher risk but the doctor is saying he is comfortable with stopping at three.

It's three weeks, one hospital stay and four pints of blood later and I'm finally feeling better. The nausea still comes on a little and I'm not as strong as I was before this latest round of chemo but I'm exercising and getting better every day. The downpour has slowed down to a drizzle and the storm is finally moving out. I'm a long way from the rainbow's end but at least I can see it from here.

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright, bright
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been praying for
It’s gonna be a bright, bright
Sun-Shiny day.

 P.S. I hope I can start using this blog for it's intended purpose. Soon, I want to be involved in the conversation about breast cancer and research. I'm very much looking forward to being part of the solution.

I can see clearly now the rain has gone