From Survivor to Metastatic Survivor

I forgot what chemotherapy does to the body other than killing cancer cells.The memories, along with the side effects, have returned. The changes to my digestive system and my thinning hair have spoken loudly that "the cancer's back."
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We've made it through another Pinktober (is that a word yet?). I don't know why, but it felt a little less pink to me this year. Maybe I didn't pay as much attention. Maybe it felt different because I'm now a little closer to being terminal, metaphorically speaking.

I don't know if there is a term for being a metastatic breast cancer survivor -- or am I simply still a survivor? Either way, I have made it through my first metastatic survival year still left with the hope for a cure, although the hope has now diminished just a little.

The transition from survivor to metastatic survivor was not an easy one for me. The longer I remain just a "survivor" (I know that sounds really strange), the more hope I have. Once you become metastatic, you know (as of today), there is no cure. I'm told I could live for years, but again the hope loses its enormity and the fear and depression are able to find it's way into the soul a little easier.

For me, it began last October with the diagnosis of bone metastases of the pelvis, which took away my hopes of running a full Disney Marathon. Radiation got rid of that... or so I thought. We started monitoring my tumor markers (the number taken through blood work that indicate the possibility of cancer) after the radiation. I thought I was in the clear and was put on hormone therapy. A few months later, my numbers began to rise along with the pain. Unfortunately, the radiation didn't get all of the cancer and none of the hormone therapy drugs we tried (and we tried them all) worked.

A few months ago, my oncologist and I decided it was time for low dose weekly (3 on-1 off) chemotherapy as my survival instincts kicked in and my numbers rose again. I forgot what chemotherapy does to the body other than killing cancer cells. The memories, along with the side effects, have returned. The changes to my digestive system and my thinning hair have spoken loudly that "the cancer's back."

The first time I lost my hair was easy for me on an emotional level. My hair was short anyway and I knew it was temporary, so I had a party and had my head shaved even before I began chemotherapy. I have not lost all of my hair yet, but it has thinned out considerably. The difference this time is the unknown. My hair is also much longer. I can still cover up most of the thin spots, but I don't know if I'm going to lose it all because I don't know how long I'll be in treatment. I don't know if I should I buzz my hair or not. It's also much harder this time to look at myself in the mirror and watch my eyelashes and eyebrows slowly disappear.

Since I started chemotherapy, I've had nine treatments of Taxol and my tumor markers have been cut in half. They actually aren't that far from a normal level. We also don't have a long-term plan, because we don't know what's going to happen (other than hormone therapy is no longer an option). My oncologist told me he thinks I will be treated as though I have a long-term disease. What does that mean? Will I be on chemo six months and off chemo six months? If that's the case, I'll have to look in the mirror and watch my face transform every six months because once the treatment stops, the hair grows back.

If you look at my numbers, I'm doing great. If you look at my face, I'm not doing so well. I usually remain positive, but it's just harder this time.

Perhaps I'm no longer in the denial stage. I was in denial for eight years. Perhaps I'm now in the depression/anger stage of the grieving process. Perhaps I'm in the roller coaster stage. I know... there is no such thing.

On the bright side, there are a lot of really great things that are going on in my life.

Last year, I was using a walker because I had a fractured pelvis. This year, I'm planning to run/walk the Disney Half Marathon in January. My bones have healed and I'm determined. If you have ever participated in a run Disney event, you will understand the desire I have to yet do it again. I have run three of their half marathons since my first diagnosis in 2006.

The metastasis has only been to the pelvic bone, which is another positive. Other than my hair and digestive track, I'm feeling really strong.

Last year I spent a lot of time on the couch. This year, I work part-time at my happy place three days a week.

And, after eight years, I'm still here and chemo is working again. Who knows? I may still one day run those 26.2 miles.

So, I'm now going to stop complaining, put my big girl panties on, deal with my hair, train for my ½ marathon and look forward to next year's Pinktober as I force myself to lean towards the light.

I hope next year to see more pink; unless they find "the cure" in which case I hope I see no pink.

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