The last couple of weeks have been really hard on me. I had my first scan from the new clinical trial I’m on, an immunotherapy drug, and it didn’t go so well. I knew it was a likely outcome since this drug is known to take a while to work, but it still sent me into a tailspin.
Then I found out the next day that my beloved port-a-cath needed to be removed because the hole in the skin that had been ignored as just a spot of thin skin for 9 months was actually a hole where my port was exposed. I has surgery the following day to remove it, have to wait for it to heal completely, and then will have surgery to put in my third port.
When I reflect on the last 3 years of cancer treatment for metastatic cancer and 11 years of overall cancer treatment, there are some big things that stand out to me. I know I’ve posted about feeling alone and forgotten by some friends in the past, but that has made me really appreciate the people who have stuck with me. The kind of people that drop everything to go to appointments or surgeries with me, fly across the country to spend a chemo weekend with me watching bad tv, drive a few hours in rush hour traffic to take me to chemo so that I don’t have to go alone, or just remember to send me good thoughts and love through texts or phone calls. I will be forever grateful for all of you and love you fiercely.
One of these extraordinary people, Jill, has become someone I can’t imagine not having in my life. She’s wonderful and caring and even though she doesn’t always live near me, when we see each other I feel a strong sense of home. She’s always one of the first people I reach out to when I need mental support, even if it’s just through a text message, and has actually driven 2 hrs to SF to take me to a chemo appointment (twice) just so that I didn’t have to go alone.
I was texting Jill during my week long meltdown over my scans and port and she calmed me down with reason telling me that her boyfriend, Mat, wanted us to work on not freaking out over the things we can’t change. People tell me that all the time, but for some reason it seemed to help this time. Maybe it was also the ativan I took, but Jill and Mat have taught me a lot about how to enjoy life, do the things that are really important to me, and live it up, since who knows how long any of us have left in this life. (They even talked me into going skydiving with them for my 31st birthday!)
The next week my world was shaken by the news that Mat died in a bad BASE jumping accident. I’ve lost a lot of friends in my life, but something about this man who was so full of life, love, fun, and smiles broke my heart. Not even to mention how broken hearted I am for Jill. In I’ve lost a lot of friends (mainly to cancer), but this was different somehow. This makes me question my life choices and wonder if I really am living my life to the fullest.
I had a long internal debate with myself on the drive home from Santa Cruz after seeing Jill on Sunday and I couldn’t figure out why I put so much emphasis on work. Shouldn’t I be putting my friends, my family, and me ahead of some crazy deadline or need to work? Why do I feel like I don’t have a purpose when I don’t have a job? Is it just because of how expensive the city I choose to live in has become?
I thought a lot about it and came to this conclusion, I really like what I do. Yes, I think I should live it up as much as possible and savor every moment, knowing there are a finite number of them. But my work defines who I am. Since developing lymphedema 10 years ago, I have spent most of my time helping other patients and creating new programs and tools for them. And maybe that’s ok, maybe this is how I will leave my mark on the world. How I helped make it a better place.
All I know is right now, I’m sending love out in the universe for my dear friend and trying desperately to keep my own life together. I guess I’ll try and follow Mat’s advice and not freak out too much until I have real answers after my next scan.
Love and kisses,