Load 'em up! Cycle 8 of Xeloda begins today! I take three pills twice a day, along with vitamins and supplements. Not too bad ... I swallow them all in one swallow. I guess my throat is pretty flexible.
My medical journey has been simplified to three week cycles. Every three weeks I have blood drawn to check overall blood counts, liver and kidney functions and tumor markers. Every six weeks, I see the medical team and I have a bone-strengthening shot. Every 12 or so weeks, I have scans.
My most recent blood work shows that overall, everything is fine. My white and red cell counts remain below normal, but that pretty much has become normal for me. They've been consistent in that range for over a year now.
My low potassium levels that were of minor concern have responded to the supplements I take and are now in the normal range.
My tumor markers have dropped another 20% and are now normal.
Wait ... did you read that right?!?! Yes, you did! MY TUMOR MARKERS ARE NORMAL!!!!!!
Starting at 62.6, my CEA is now 3.6. This marker has been very reliable for me and having a normal value means that whatever cancer is in my body (It's still there), is so small that it's not able to release the protein that's measured in this blood test. I will remain on my current chemotherapy and it looks like I will live to see another day or two (or weeks or months and dare I hope? Years?).
I'm back in my Bible writing project after taking an almost two-month break. Still in Joshua, slogging through names of towns and villages. I'm also participating in a study on Galatians with some dear friends. Getting out of the Old Testament to the fulfillment of the Law via Jesus in the New Testament is good for me and helps to clear my mind. I still have a myriad of questions, but I am comfortable with them.
My first response to hearing the news of my tumor markers is pure joy. Overwhelming joy. Overwhelming gratitude. Overwhelming emotion. As one of my favorite fictional characters once said, "I feel as though someone has handed me the moon and I don't exactly know what to do with it." (Anne Shirley, "Anne of Avonlea" by LM Montgomery) I give thanks to God for his abundant grace in my life full of questions and doubts. I'm thankful he has gifted me with such good results.
I am still conflicted because yesterday, my friend, Michelle, with Stage IV breast cancer was hospitalized after passing out due to extremely low potassium levels. She also has an infection and today, it was discovered that she has a fractured hip due to cancer tumor load.
Today, my friend, Wanda, was hospitalized with pneumonia and low hemoglobin. Also with Stage IV breast cancer.
Why am I doing well and they are not? it's hard to celebrate when your friends are suffering.
I was interviewed by the San Francisco Chronicle last week and the article went live today. You can find it here: http://www.sfgate.com/health/article/Breast-cancer-awareness-month-offers-little-when-5820640.phpas I was also interviewed (by phone) this morning by a major health-based website and am being considered to participate in one of their patient panels in early December to bring more insight to the needs of the metastatic breast cancer patient. I'm hoping to learn and grow through this process on how to be an effective advocate.
There you have it ... moody me ... extreme highs and lows within hours of each other. Still trying to find my voice and role in a conflicted world. This I cling to ... God is real and he loves me. I don't understand his ways, but I cling to him because nothing else is stable enough to handle the upheaval around me.
Mary Margaret is another woman who had an early stage diagnosis in 1999. She underwent treatment, took ten years of daily hormone treatment pills and two years after those treatments ended, she had extreme back pain. It took a complete year for any doctor to think that it could be metastatic breast cancer. ONE YEAR in which the medical community did test after test after test (all normal) before they did an MRI which diagnosed the return of cancer to almost her entire skeletal body. The reason it took so long? Because they didn’t believe breast cancer could return after 12 years.
The cancer was in so many places in her body (many, many bones, lungs, liver) that her prognosis was quite poor. One of her sons moved back from New York to California to be with his failing mother. He put his life on hold … something that bothered Mary Margaret all the way to the end. Especially since she lived two years longer than anyone expected!
Mary Margaret kept busy to the extent she could. Her caring oncologist put together creative treatment plans to help extend Mary Margaret’s life. She always knew that there was no cure, but she pressed on regardless. She had several-times-a-week medical visits, but her weekly trips to the metastatic breast cancer support group we attended together were her main social outings. One of her sons jokingly dubbed us “The Loser Ladies Club” because we certainly lost the “early detection” gamble that is so preached in the pink ribbon movement.
At one point, Mary Margaret and I discussed the question, “What do you do with your days?” Here’s some of her thoughts:
“I think it is perhaps the most important question we are facing.
“One of the last things our Franca (died December 7, 2013) said at a meeting was "What's the point?" I was too upset to talk that day, but her question was generally received as 'What's the point of coming to meetings when I am so ill and have nothing to say' or 'What's the point of keeping on when my doctor says there are not any hopeful treatments left for me and my eyes are yellow' --- but I heard it as a much more philosophical issue, one we had talked about many times over the years -- 'What's the point of life at all?' 'Why are we doing this?' Franca had read and re-read a book by E. Tolle called The Power of Now (which I never got through) and found comfort in it and in trying to make each moment count for her. Birgitte, who is a mindfullness meditation facilitator, works on this outlook as well . . . . that any moment of any life is a gift. Franca mourned with each loss (motorcycle-riding, sky-diving, hiking,finally even long walks) and was struggling to find the point in all this effort . . . what is the point?
“As someone whose life has included many disabled and elderly people, I find this a very slippery-slope kind of question --- the money, suffering, time spent to keep someone sitting in a hallway for years . .. . my son's friend, Mattie, who is 34, wears diapers, crawls, and can say 'mama' -- where is his transcendent 'now'? What is the point? But, Oh, so dangerous to begin to judge the quality of worth of a life .. . or which life is worth less, and therefore worthless.
“The final instruction for many is Deut 30:19 . . . ."Therefore choose life . . . ." ( I am a King James girl forthe literary joy of it.)
“So yesterday I did a bit of laundry, my medical daily 'stuff', ironed a couple things, never stepped outdoors, took a few naps . . .. . what's the point?”
The last time I saw Mary Margaret was July 6 of this year. The cancer had moved to her skull, as well as to her brain. The medical team referred to them as extensive bony mets and Mary Margaret couldn’t stop singing the song, “Bony Marone” (Look it up on Youtube.) Her snarky sense of humor was still intact. A week later, she suffered a tibia (lower leg) fracture as her body continued to fail her. She had radiation to deal with the pain, but she stopped all other treatments. She knew her time was short.
Mary Margaret died on September 10. I still cry over her loss. I still expect to see her come into our group with her knitting bag (She was a prolific (and FAST) knitter and crochet-a-holic). She didn’t want visitors in her last days, so I said goodbye to her with a card and an orchid, delivered a week before she died. I don’t know if anyone read it to her, but it was closure for me.
I miss her so very much. The “Loser Ladies Club” isn’t the same without her. She always knew, as we in the group still know, that we’re not losers in the cosmic sense. Our lives have value and our minutes matter. We just want our minutes to stretch into hours, days, weeks, months and years.
Today is Metastatic Breast Cancer Awareness Day. It's the ONLY day in the month of October set aside to honor the women who have terminal breast cancer. These are the faces of about 1/3 of an online support group of women with advanced breast cancer (ABC). We are all daughters, some of us sisters, some of us aunts, some of us mothers, some of us wives, all of us friends. We are as young as 28 years old and as old as over 60. Many of these women had early stage diagnoses years ago. Some of the women in this photo are already on the other side of eternity. These faces (as well as anyone who has had breast cancer) are the reasons we need more research for more effective treatments.
Michelle and I were married the same year, 1997. While she was a decade younger than me, we walked many stages of life together. Our daughters were born the same year and we were both diagnosed with Stage III breast cancer within a month of each other in 2012. We both had neoadjuvant (before surgery) chemotherapy. Michelle had a mastectomy with lymph node removal, while I had a lumpectomy. We both followed our surgeries with localized radiation.
We were both declared cancer free at roughly the same time. We both started to work on rebuilding our bodies following the months of intense treatment. I started to experience pain in my neck and in January 2013, I was diagnosed with significant disease in multiple bones, including a broken vertebrae in my neck. I was now Stage IV.
Michelle joined me in that “club” just six weeks later. Her mets were in her hips and lungs. Because the disease had already spread to an organ (lungs), her treatments were very different than mine.
Her body responded differently as well. Quite frankly, it didn’t respond. The disease marched relentlessly through her body, creating mayhem and havoc. Michelle was hospitalized several times with heart problems and a plethora of other difficult health crises. I’ve not had to spend a night in a hospital due to breast cancer and the cancer in my body has responded reasonably well to treatments. While it moved into the liver in May, it is being held stable for now.
Michelle died on December 21, 2013, at age 40. I am still living a fairly normal life. Our walk along the same path took an abrupt fork in the road and a major question remains: Why?
Michelle wrote the following in her blog in August 2013. “I guess it's almost time to start preparing for pink washing, breast cancer awareness month in October. I saw they are starting kick off parties. It just always makes me so aware of the lack of support or anything for stage 4 cancer. It seems to me the perception is breast cancer is curable, early detection saves lives, etc. not always the case. It kinda feels like us stage 4 people are swept under the rug. I've tried to start a group, contacted ACS [the American Cancer Society] haven't been successful. It's sad cause we are a group that needs support. I have found an online stage 4 group and I am not alone in feeling shunned. They just want to report survivors not those of us struggling to live. I'd like to be able to say I have benefited from the ACS but I haven't. Where does all the pink money go?”
Earlier in the month, she wrote, “I continue to struggle with why me? Why do most of the people I have come across go thru treatments and then are fine, why didn't that happen for me? I don't want to sound petty but I am jealous...I know that these are all feelings I need to sort thru. That's one of the reasons I decided to write it all out. Don't get me wrong, I am so happy for them, but I am so sad for me.”
People with Stage IV breast cancer have a myriad of emotions that are seldom (if ever) addressed by the pink ribbon movement. The pink ribbon tends to focus on the lie “early detection saves lives” (It doesn’t … it simply means you start treatment earlier. Innovative and effective treatments save lives; yet, most of the money raised by the pink ribbon movement goes into “early detection, education and awareness.”)
Metastatic breast cancer patients are told to have hope. The pink ribbon touts hope for all. However, hope isn’t what Michelle needed. Michelle had an unusual type primary tumor (metaplastic) and while she responded well to initial treatment, it wasn’t enough. Hope did NOTHING to treat her cancer and it’s obvious that hope didn’t help her in her Stage IV treatments. We need research and we need people to donate money that goes 100% into research.
Sheila had an early stage diagnosis in 2009. She was 45 years old and confident that once she went through treatments and got breast cancer behind her, all would be well. She went through her year of rough treatment and continued with her life, knowing that she “beat cancer.” She was passionate about Habitat for Humanity and just as equally passionate about being fit and being physically active. She played soccer every chance she got.
I’ll never forget the first time I met Sheila. She came to the metastatic breast cancer support group I attend and she was absolutely terrified. Four years and eight months after her last chemo, she was diagnosed with recurrent breast cancer in her bones. She was not only terrified, but also furious. She thought that once she reached that five year point of being cancer free, that she wouldn’t have to worry about cancer again. She was livid that it recurred four months before that “magic deadline.” She fretted that she did something wrong to make her cancer come back. Over the course of time, however, she came to understand that there’s nothing magical about five years. That several women in our group had recurrences 12 – 15 years after their early stage diagnoses.
She came to understand that there is no cure. There’s merely “luck of the draw.” She made peace with herself and the life she lived between the presence of cancer, but she remained angry at how little she knew.
Sheila’s primary cancer was hormone positive, but as it moved around her body and settled into her bones, it changed into what’s known as triple negative breast cancer. Not only had it become triple negative, it became very aggressive.
Bone metastases are generally known as the “easiest” to treat. The cancer isn’t in a vital organ, thus, the main danger is that of bones breaking and bone marrow/platelet production. There are women who have lived extensive amounts of time with bone mets and Sheila hoped to be one of them.
In her fear, Sheila stopped coming to our group for a while because there were two women who weren’t doing well and their conditions scared her even more. She didn’t want to be like them. She wanted to get better.
Unfortunately, the nature of her recurrent disease caused the cancer to march relentlessly forward. It moved behind her eye and into her brain. She had full brain radiation that absolutely exhausted her. Her bone mets spread even further, causing her incredible pain. I reached out to Sheila because I didn’t want her to be alone. Several of us in our mets group (all of us terminal patients ourselves) took turns picking her up to come to the group as she could no longer drive due to the side effects of the radiation behind her eye.
The cancer continued on its path, with all treatments failing. Sheila’s birthday was the same day as Bastille Day (France’s National Day) and she always wanted to go to Paris for the event. This year, she made it happen – for her 50th birthday! I loaned her my lightweight travel wheelchair to help make the trip easier and she and her husband took off.
She returned from France just before I left on a 16-day trip of my own. We talked on the phone and she told me she had a great time, but that it was tiring and painful. She left the wheelchair on her porch for me to pick up before I left and we made plans to get together after I got back.
That didn’t happen. I got busy with getting the kids into school and with moving my in-laws next door to us. I missed going to the support group for several weeks. Imagine my shock, regret, dismay and grief when I was informed that Sheila died on Saturday, September 20.
Early detection didn’t save Sheila’s life. It gave her a false promise that couldn’t be lived up to. It infuriated her and she died knowing that the lie continues.
Early detection doesn’t save lives. Effective and innovative treatments do. Sadly, we have no control over how our bodies respond to those treatments. Frankly speaking, doctors may have a general idea as to who may respond well, but they don’t know for sure. Only 5 – 10% of all breast cancer patients are diagnosed as Stage IV from the beginning. The rest are considered “early stage diagnoses.” Up to 30% of all early stage diagnoses become metastatic and metastatic disease is the only type of breast cancer that KILLS. No one has ever died of breast cancer in the breast. They die when it moves elsewhere in the body. Unfortunately, most of the general population doesn’t know this, in spite of the millions spent on “awareness” and the lie continues.
Don’t get me wrong … having an early detection means you start treatment earlier. However, having an earlier detection does not mean you will never have cancer again. THAT is the lie that is represented in the statement, “Early detection saves lives.” Detection does absolutely NOTHING. Treatments are what makes the difference. Research is what makes the difference. Research to determine what treatments are likely to stop this disease BEFORE it spreads is what’s needed. A big pink party isn’t going to achieve that.
I consider Ann Silberman to be a friend. We met via the internet, have communicated via snail mail and have gotten together for coffee. I'd like to see her more, but our two schedules are full. We continue to encourage each other as we both have metastatic Stage IV breast cancer and we continue to learn from each other.
Ann's reach is far wider than mine. She has a huge following on her blog and this site would not be complete without a link to it. Ann has worked tirelessly on shaming the pink ribbon advantage takers and she has been successful in shutting down campaigns that sexualize and trivialize the disease. If you haven't gone to her blog before now, please take the time to do so. http://www.butdoctorihatepink.com/
_I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease. I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.