I saw my oncologist last week. She gave me the results of my latest CT scan, and I asked her how long I can expect to live. She gave some context before saying “Five years would be extraordinary.” So there’s that. I wish I could really articulate my feelings about it, but I’m kind of numb. Numb and sad and internal.
Honestly, it wasn’t exactly a surprise to hear. I mean, I know the statistics. The first oncologist we went to said that statistically, I could expect to live up to a year without treatment; 18 to 24 months with treatment. So compared to that, five years is quite extraordinary. But it’s hard to compare me to the statistics since I’m not actually in the primary demographic that gets this type of cancer.
I’ve been reading a couple of memoirs by people with cancer. Right now I’m reading Audre Lorde’s Cancer Journals. She talks about how strong her urge was to live and to continue her work. It makes me feel like there’s something wrong with me that makes it so I can’t relate. In the other memoir I read recently, the author writes about making the most out of each day. I’m working on getting there. I’m not there yet.
Some updates:
Overall, the results of my latest CT scan were good — continued reduction in size of many of the tumors, and continued calcification of tumors throughout my liver.
They’re now putting me on what they call a “chemo holiday,” which is a maintenance regimen. Instead of going in every 2 weeks for an infusion that spans 3 days, I’ll go in every 3 weeks for a 30-minute infusion of a drug called Herceptin. The goal is to keep the cancer cells dormant for as long as possible. How long that might be is anyone’s guess, but it will probably be counted in months, not years.
I’ll get a CT scan every 3 months now, and once we see more tumor growth it’ll be time to make some decisions about going back on chemo.
Also in 3 months they’ll do an echocardiogram to check my heart function (Herceptin can have an effect on this, but so far I’m doing well). They’ll also do another upper endoscopy, which is the test that originally found the cancer to begin with. They’ll check out the primary tumor site, which they can’t view on a CT scan since it’s at the juncture of the esophagus and the stomach. Then it’ll be time to make some decisions about radiation at the primary tumor site.
Now is when I say that I absolutely hated chemo and have no desire to get radiation. So I’m really not looking forward to making these decisions when the time comes. But I’m grateful to have them. Not everybody responds as well to chemo as I did.
For now, I’m thinking about how long and how short five years is. I’m thinking about how hard the last eight months have been and whether that’s what I should expect for my future. I’m thinking about what decisions I’ll make about chemo and radiation with all of this in mind. And I’m wondering how to traverse the bridge from melancholy and aimlessness to making the most of my days.
❤
My Beauty!
You know, no one can tell you how to feel, do or should do, whatever you do or feel is right for you. No wrong or right way, they also can’t predict your life, only God knows, He has a will and it will be done. Just as you say how well you responded to treatment compared to others. You are UNIQUE, always have been and is what you have ahead of you. Go with “your” flow, some days are better than others, do the best you can, while you’re doing that, I’m always lifting you up in prayer! Love you Baby Girl!!
Love you!
Thank you, Alana, for pouring out your truth. I’m praying for you, your healing, your peace of mind and Spirit, and for your clarity about how you want to move forward.
Thank you so much, Bill.
Thank you so much for sharing Alana. Sending you lots of love, strength and hugs <3
Thank YOU!
Hi Alana,
Thank you for sharing where you are at. Thank you for allowing those close to you and complete strangers witness your battle. I am sending you so much light. Your sentence about bridges reminded me of my favorite quote: “Voyager, there are no bridges, one builds them as one walks.”- Gloria Anzaldua
What a perfect quote! Thank you for your kind words.
You are one of the bravest, most strongest women I know, and that was at 16! I admire you.
Thank you so much, Cristine!
I’m really grateful for your posts. My father is in a cancer journey as well. He is very private. When he does speak about his experience, it’s mostly in clinical terms. As a doctor and researcher, that’s his shield. We talk about clinical trials and tumor growth rates and the pathways of metastasis. That talk has its own beauty, but it’s only his pauses that give me an inkling of his internal experience. Your posts, this one especially, help me understand him more deeply. Thank you.
Thank you for this, Marian. And thank you so much for your support. I am humbled.
Hi Alana Wonder Woman. Thank you for sharing what’s going on via your blog. I’m sending love and powerful healing thoughts to you. I’m so sorry and sad for you.
xo
Thank you for sharing your truth and your journey. We’re standing with you. Through chemo and remission and everything in between. God bless.
Thank you.
Sending so much love. We haven’t met in person, but you and Mac are in my heart and prayers. (FB is such a strange combination of intimacy and anonymity.) Your spirit shines through your posts. If there is any way i can be of support please let me know… I haven’t dealt with cancer, but i have inhabited the edge between living and leaving (due to illness) more than once. <3 /|\
Thank you! (and yes, FB is so strange for just that reason!)
Thank you for sharing. Beautifully written
Thanks so much.
Oh my dearest Alana, I am holding you in my heart, every day I send you my love. Xoxo
xoxoxo
Thanks for sharing your experience and thoughts. I am sending you warm thoughts and hugs. Stay strong and beautiful!!
Thanks!
Numb and sad and internal. Those three words say so much. Your writing is a gift to many, Alana Devich.
Thank you, Emily.
Alana,
I so appreciate your raw, honest and deep sharing of your journey with cancer. I hope it is ok with you to share some referrals from a client whose husband also has metastatic cancer. He is living…seven years later and is an amazing fighter….like you. He has been doing conventional treatment and has also worked with Michael Broffman https://pinestreetclinic.com/pages/clinical-services. There is also a doctor who is highly recommended at UCSF who finds clinical trials for people…and his name is Michael Renneker
https://www.commonweal.org/no-stone-unturned-seeking-optimal-cancer-care/
Dr. Renneker used to be an oncologist at UCSF and then Cal Pacific before starting his research and patient advocacy practice. He founded it because he realized that there is far too much information about fighting cancer, and innovative treatments both in western medicine and in integrative treatments, for any doctor to stay on top of while practicing medicine full time. So Dr. Renneker stopped practicing as a doctor and dedicated himself to keeping abreast of treatment from all around the world for fighting cancer. He consults with patients, particularly those with serious or advanced cases of cancer, and helps them develop attack plans, find second opinions, and identify new treatments.
Sending love.
Karen
Thanks for the info, and the kind words, Karen.
Thanks Alana! You are strong and brave! You are always in my prayers!!
Thanks, Steve!
Thank you for sharing where you are and some of the deep contradictions on this journey.
Sending love & light.
I’m thinking of you and your words here often. Sending so much love to you and M and the whole community.
thank you!