A New Year Without a Fresh Start

It’s been a while since I’ve written a blog – last October to be exact. I didn’t intend to go radio silent, but I’ll be honest and admit it’s been a dark few months, literally (it’s winter – short days) and figuratively (the emotional and physical challenges of living with Cancer do take their toll).

I greatly appreciate all my close family and friends that have reached out to me to offer their support. I’ve shared pieces of this story to all that I’ve spoken with, but I felt like it was time for me to provide a more comprehensive update for all. Two of the initial intentions of my blog were to update personal friends and family of my health changes and to further others understanding of Breast Cancer through education and telling of my personal story. To meet these objectives, here I go. I recommend you make yourself comfortable, as this blog is going to be a long one!

You last heard from me in October which is Breast Cancer Awareness month. I was invited to speak at a few different events during the month culminating in the ribbon cutting for the Making Strides Against Breast Cancer walk in Sacramento organized by the American Cancer Society. I was able to share my story to over 20,000 participants with my closest friends and family on stage to support me. It was truly a wonderful experience that makes me feel blessed and supported to be able to get my story out and work to change perceptions of this disease. It does in fact happen to the young more than you’d imagine and it’s not nearly as curable as most believe.

Breast Cancer Awareness month seems like it should be a positive experience for someone permanently living with the disease – American society is focused on talking about Breast Cancer! Yay! In actuality, it becomes an emotionally draining month for several reasons. Without spending too much time on this topic (I’ll save that for another blog), I know more than almost anyone about the realities of Breast Cancer. I’ve been through the harshest version of early stage Breast Cancer treatment in 2014 and have continuously been in some form of treatment since then which is almost four years at this point. This includes more surgeries, radiation, chemotherapy, blood draws, scans, and other procedures than I care to recap. My experience with Breast Cancer is not pink, pretty, or feminine as you might believe from the messaging presented during Breast Cancer Awareness month. I completely believe there are good intentions (beyond the companies that use Breast Cancer awareness as a marketing technique and don’t donate any money to the cause) so I try not to be offended, but there is an inauthenticity of Breast Cancer Awareness month as compared to my own experience with Breast Cancer that is difficult and frustrating to watch as my own life slowly but surely falls apart from the disease due to no fault of my own.

After October, we moved into the holidays. I knew I was likely taking my last treatment option that was not a chemotherapy drug (see my health updates that start below) and was unsure how long it may work for as well as coping with personal life disappointments. These alone are incredibly stress inducing added to the reflection common of the holiday and new year period, and by then I had worked myself into a bit of a funk. By January, I recognized I was ready for a change and began reaching out to my family for additional support something this *independent lady* is not particularly good at. We have some exciting things we’re working on in the background, but I’ll wait to share when they become closer to a reality. In the interim, my mom and sister have begun spending more time at my house and we’re generally pulling together as a family as I get further down this Cancer road. For them, I am eternally grateful.

I have continued to work and receive complimentary feedback, which has been a welcome reprieve from the health and personal issues. While I speak very little of my career on this blog or Facebook, it is my most proud accomplishment and still what I spend most of my waking hours committed to. As an IT consultant for public sector clients, my work is project-based and changes over time. Most recently, I have been leading an effort to elicit IT system requirements for a custom system named WellSTAR for the California Department of Conservation that will help with their oversight activities of the the oil and gas industry. Cancer has caused me to shift my career from the long hours and fast progression of build-mode to a more sustainable maintain-mode, but I enjoy what I do, am very good at it, and intend to continue for as long as possible.

The last few months have been rough and the road ahead of me is unfortunately only going to get harder, in a physical and emotional sense. My new year came without a fresh start due to the Breast Cancer in my life that I have no ability to remove. This is difficult to process, but I am committed to maintaining my composure and love of life. I cannot control the Cancer, but I can control my reaction to it which is where I will continue to find my strength.

Now on to the strictly health updates which I’m also going to litter with unrelated fun pictures from the last few months to be clear my life isn’t all bad news…

Health Context/Recap: I have Stage IV (also known as Metastatic) Breast Cancer, confirmed as such in September 2016. This is the most advanced form of the disease and means the Cancer has spread beyond the breast region, in my case extensively throughout my bones. There are treatments, but no cure, meaning my diagnosis is considered terminal although I have no immediate expectation of death. See these blogs if you’d like the full background story or my basic explanation of cancer and treatments.

The goal of treatment for me is to keep Cancer from growing while trying to maintain a decent quality of life, but the treatments are essentially only extending the inevitable. Over time Cancer morphs, gets stronger, and becomes resistant to them. The treatments themselves also have killer side effects that must be monitored closely, including suppression of the immune system. All the while, I still look completely healthy externally and work full time in my career as an IT consultant. I’m that kind of stubborn and ambitious 😊

Last October, I was transitioning treatments between a platinum-based chemotherapy drug that had killed enough existing cancer in my body to try to transition to another “maintenance” drug that would hopefully offer a higher quality of life for me while continuing to kill more cancer or at least keep it from growing. The specific medication has been approved as an Ovarian Cancer drug for a long time, but was just recently shown to help for certain Stage IV Breast Cancer patients, which I met the criteria for. The good news is the side effects were manageable – primarily loss of appetite/light-weight nausea so it bought me a few months of relative normalcy which is the name of this game. I lost a few pounds (#silverlinings) although it’s not nearly as pleasant when it’s because you literally cannot intake enough food due to Cancer treatment. I was hoping it would prove to be effective for me for months, if not years, as it was for some patients in clinical trials. Unfortunately, it failed me after only a couple months. There is a huge variability in outcomes for Stage IV Breast Cancer treatments that doctors do not fully understand the reasons for. This means treating my Cancer is a bit of an educated guessing game.

Since Cancer had started to grow in my body again, by January I was looking at more chemotherapy. I initially resumed the platinum-based chemotherapy, but have had to adjust the specific medications/dosages a couple of times since then due to resistance from my Cancer. My most recent adjustment occurred yesterday – this one will cause me to lose my hair again. Not all chemotherapy medications cause you to lose your hair. I’ve been on chemotherapy for the majority of the last year so I feel like it’s been a good run and I knew this was likely coming again at some point.

I initially lost my hair in 2014 from chemotherapy and when it grew back it was never the same which is common for Cancer patients. It was less than a quarter of the initial thickness and not nearly as strong. I think because I’ve not been pleased with my hair ever since it grew back and I’ve had time to anticipate another treatment that would cause hair loss, it’s not quite as traumatic losing it the second time around. Don’t get me wrong – I’m not looking forward to this. It makes all sorts of things complicated like working out, swimming, traveling, and carries an emotional price tag from staring at yourself bald in the mirror every day, but I’ll be ok. I’m still above ground.

I’ve already been on a lower dosage of the chemotherapy medication which is causing thinning in my hair and I expect to need to switch to wearing a wig again in the next week or two. While I am comfortable talking about my disease, I also value my normalcy so I am much more comfortable in a wig where I can go through my day to day unnoticed by strangers than I am bald or in a “still pretty obvious there’s a hair issue” wrap/hat. People who know me without a wig will notice the hairline/style is not exactly what they are used to seeing, but anyone who didn’t know me prior will likely not notice. I regularly received compliments on my “hair” the last time I wore a wig. Luckily, my sister and I went to purchase one last weekend and it should be in any day now.

For the indefinite future, I’ll be receiving weekly infusions (IV-drip) of this chemotherapy medication for three weeks in a row with one week off. Fingers crossed it stops the growth of my Cancer and I can use it for a while, as I am starting to run out of options. Since my Stage IV Breast Cancer diagnosis in September 2016, I have been through seven “lines” of treatment. A “line” of treatment is basically one combination of medications. When a certain combination stops working, you move onto your next “line” and there are a finite number of “lines” of treatment available.

There are some, but not many, women who live a decade or more with Stage IV Breast Cancer. In comparison, these women (called “exceptional responders”) usually last years on one “line” of treatment and this happens for them more than once. Doctors have no idea why this happens for some and not others. I have not been so lucky since my diagnosis which means I am quickly moving through the treatments that currently exist. My doctor and I still have a few tricks up our sleeves, but it’s getting harder to ignore how Breast Cancer is changing my life and the inevitable fall that is coming. This reality is hard for me to share because I have nothing to offer to make it more palatable. While Breast Cancer will eventually take me down, it will never ruin my spirit.

Fate whispers to the Warrior, “You cannot withstand the storm.” And the Warrior whispers back, “I am the storm.”

Given the uncertain and limited nature of my time I’m becoming a bit more selfish with it, prioritizing health, work, family, and friends. I do plan to continue to blog and spend time on advocacy work, although in moderation. My intention is to provide monthly updates, so unless I’m feeling inspired to write before then, I’ll catch you in April!