Day 95 – Lobster hat

Day 95 – Scan results with a lobster ‪#‎hatONit‬ from Avery and Lisa. My parents (Peter), Austin, Avery and I all went to the appointment this morning. The scan showed a mixed picture: my breast lesion is stable, my liver lesion is stable or better, but my bone lesions show more activity and I have two tiny new lesions on my ribs. Cancer is often heterogenous, so my bone lesions have stopped responding to the cisplatin chemotherapy I’m receiving though the liver and breast lesions are still responding.

This isn’t the news I wanted, but for bad news, it’s not the worst. Last December when my scan showed progression, my liver, my vital organ with cancerous lesions, was in the danger zone. I needed to be treated as soon as possible (delayed both by the holidays and blood counts) to stop the spread of cancer in my liver.

So I’m disappointed, but also relieved that the anxiety is over, that the news isn’t worse, that I’m in great health (other than the cancer) and will be able to finish my dissertation. I am also looking forward to a several weeks off of treatment so that I can get my energy back up and get past this constant low level nausea that’s limiting my diet (and my celebratory drinking).

After the appointment, we bought a lot of cookies and then ate lobster sandwiches at Alive and Kicking Lobsters. It was the perfect meal to follow semi-bad news. Then I went and distracted myself with work, while everyone else continued to unpack. I feel so surrounded by love and support right now. I reserve the right to panic in the future, but right now I’m doing well.

My next treatment will most likely be a clinical trial at either MGH or Dana Farber, which are clinical trial powerhouses. I am so fortunate to live in the best place in the world to have cancer. I checked in about clinical trials at MGH in April and so know the lay of the land which is reassuring. Most of the trials we were talking about then in the theoretical sense were of drugs I could take in pill form, approved drugs in new combinations or drugs approved in other cancers. I’lll write more about clinical trials later.

Moving to MGH or Dana Farber will require leaving my beloved Boston Medical Center, though I’ll still consult with Dr. Ko (see her and my amazing nurse Nancy in the first photo). One reason I started this fundraiser when I did was because I knew whenever my disease progressed I would be headed to clinical trial away from BMC. And since my diagnosis I wanted to give back to BMC, to support its work supporting the many in our community on the margins, as Boston’s historic safety net hospital. BMC is committed to improving the lives of patients struggling with with housing insecurity, disadvantaged socioeconomic status, or refugee status. For many of BMC’s patients, non-biological factors primarily account for their illnesses. Private donations can allow for alternative interventions and advocacy efforts that are less classic medical “treatment” but profoundly impact health, and are not currently reimbursed by insurance companies. For example, BMC is the first hospital to offer a food pantry, which providers can write prescriptions for. Thank you all so much for joining me in supporting BMC.

Up to $18,201, with $435 so far to be matched, out of $1117 total possible match. Donate by Saturday to get your donation matched by the generous anonymous donor!
Donate here:
https://www.crowdrise.com/hatonit

PS – On my way home from work, I was waved into a small sale put on by The Possible Project, http://possibleproject.org/, which is an entrepreneurship center for teens near MIT. My spirits were lifted so high seeing the work they do teaching teens business skills and all teen’s business ventures. I didn’t have any cash on me, otherwise I would have come home with lavender scented muscle lotion, natural deodorant, a Pangea tshirt celebrating all the world’s peoples, and several more items. Their ventures aren’t on the web yet, so I can’t link to them, but Boston-area-folk, they are looking for donations of old electronics and other items the teens can sell on eBay. If you have any to donate, let me know and I can get you more details.

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