Jun 26, 2014 - 12:54 pm
It's been a long time since I've posted here myself, but I have been visiting this forum every day and following all of your stories. Even as I've often been too emotionally exhausted or afraid to jinx my mom to post much about her own progress, I've continued to come here to learn and to quietly share in the emotions raised by the updates posted here, good news and bad. For all members new since I last posted (perhaps a year ago?), my belated and sorrowful welcome, to all who may remember my stories of my mom from last year, I am so happy to say hello to you all again. For those who have left us in the past year, my heart has broken a little more each time. There is so much emotion, and not enough words in all the languages in the world to express them all.
As I posted here earlier, my mom was diagnosed with late stage IV colon cancer in February 2013, at the age of 57. At the time I was living and going to school in the Washington DC metro area at the time of her diagnosis. I was lucky with my graduate program to be able to visit her in New York four days out of the week, while returning to my husband in DC for the three days that I had class. I've been back in New York since May of 2013, and it has been an emotional, turbulent, terrible and wonderful 13 months.
Today is my mom's 59th birthday. A year ago today, I didn't have a job yet, and I organized a "big" birthday party for her (having a large Greek family, every gathering involves at least 20 people, so in spite of my attempts to keep it low-key for my mom, it was inevitably still "big"). Two months before she had had colostomy surgery, which she was still adjusting to as she turned 58, and she was on Folfox every two weeks, she was barely eating most days, she needed her walker to get around and she spent most of her days in bed.
The transformation she's undergone in the past year is remarkable. She got sick of cleaning up clumps of her dried out, frizzy hair from her pillows and all over the floor, so late last year she went and buzzed it off completely, and she looks fantastic. After decades of battling weight issues and peaking at 270 pounds 3 years ago, she is now 160 pounds, and while the circumstances under which she has lost the weight aren't the happiest, a few months ago she yelped with delight when she put on the Levis skinny jeans that I got for her, the first pair she's ever owned in her life, and at size 12 they were even a little big. (They're even looser now.) After being on the cusp of a very bitter divorce with my father in December 2012, their relationship now is stronger than I can ever remember it being during the previous 28 years of my own life. My mother calls my father her savior, the lifeline without which she would have perished. My father keeps vigil over her every day, and when he holds her or looks at her, I see a love and tenderness in his eyes that I had literally never before seen in his eyes for my mother. My mother's true friends have been an essential source of support for her, and she says that they are dearer to her than sisters and brothers.
In late fall 2013, my mom was having a lot of dizziness and fainting problems, literally to the point that we couldn't leave her by herself (this didn't prevent her from falling down the stairs more than once). When she spoke to her oncologist about it, she did a scan and discovered a small brain tumor, and she underwent gamma knife surgery the same day. We were all terrified, me perhaps more than normal because I found out about it that night "by accident" from someone who wasn't supposed to tell me, because my mom wanted to protect me and didn't want me to worry. When she underwent another brain scan a few months ago, the scan was clean. But I still think about it and worry.
In early spring of this year, a CEA exam revealed that my mother's level had risen to 270, after having dropped to 31 last fall. Subsequent scans indicated that the tumors had resumed growth in her colon, liver and lungs. She was immediately switched from Folfox to Folfiri, with Avastin added in for good measure. The nausea she felt was so incredible that she's on a massive cocktail of anti-nauseau medications right now, some delivered with the chemo infusions, some in pill form. The oxycontin-oxycodone levels that she's on now have started to decrease in their effectiveness, as she often still has days when she's in a lot of pain in addition to the ever-present fatigue. When the doctor rechecked her CEA in early June, it had dropped to 125. My father and I were ecstatic. Her own enthusiasm was somewhat muted. I wondered if she was secretly disappointed because she is that tired of the pain, the exhaustion, the fighting, that she would rather it all be over.
My mom has promised my dad, my brother and me that she is going to fight this to the end, for as long as she can, for us.
I realize that this post is kind of jumbled up. Even as I tried to keep it short, it still doesn't follow a clear order in recounting what my mom has experienced in the past year. I've realized that perhaps more than other life challenges, there's nothing linear about cancer. It's not clear upswings and declines. There were weeks when I was wondering which day might be the last one, and then she rallied. There were months that were so happy, that she was doing so well, that she was so much happier, that I felt so fortunate to be near her to share in all of her happy moments, which I was sure would go on for years. And then her CEA level went up. Now I just tell myself to be ready for anything (even as that is impossible), whether fantastic or devastating.
Tonight we're going to have another birthday party for my mom. Last year, I told her that we would all be there to celebrate her birthday again the following year, and she just looked at me with weariness and doubt. At this point, I would be lying to you all if I could say with the same confidence that we will be celebrating her birthday again together next year too. I think I have good reason to be hopeful, but of course things might change at any moment. But I am grateful for the past year that she has had, and that I've had with her, and I think that she is too. In spite of the grief that the cancer has brought, she tells me that she has had some of her very happiest moments in this past year, and for the first time in her life she has a sense of peace and calm that ahe was never able to find before. I wanted to share that with all of you, because I've found that outside the community of cancer patients and survivors, other people just don't get it, (which upsets me sometimes, unjustified as I know that my anger is). Thank you all for listening, and for being here. You all have my very best wishes.