We are now smack dab in the middle of the Winter Holidays. We joined my parents at my sister’s for Thanksgiving in Manchester-by-the-Sea, which is just north of Boston on the Cape Anne peninsula. It snowed twice while we were there. We had a coffee and dessert gathering after the Thanksgiving meal that included my cousin Karen, her family and her mom/ my Aunt Sue. We ended the visit with lobster on Friday from Gloucester. Susie and I picked it up during a day ride touring from Salem to Gloucester, very picturesque with the fresh snow.
We’re still balancing Susie’s recovery. The short story is she returned from her 2 month check-up. Her MRI scans did not show growth. The two spots we are monitoring have changed a bit, one is enhanced more while the other less so. The one that has enhanced more is where the doctors think she had an infarct/ mini-stroke. The other is behaving like radiation effect. Nevertheless, she’s been instructed to enjoy the holidays and follow-up with MD Anderson in February.
We did talk with Dr. Groves about her visit to MD Anderson in October, specifically related to Foundation One genomic testing. He agreed this is a good next step, especially considering Susie cannot use chemotherapy. He did mention there is a new drug, AG-120, that targets IDH1 tumors that is just now moving from the laboratory bench to a Phase 1 Clinical Trial. Texas Oncology will be participating in the study. We hope that we do not need to consider looking at such new treatments anytime soon, but it is good to see new pathways based on genetic testing/ mutations.
We also discussed Susie’s November ear surgery. In short, her middle ear is now cleared up, but her inner ear is where the hearing loss is. The feedback is using a hearing aid would be more of a nuisance than benefit. So, she’s going to try moving forward without such a device and she is not interested in having more surgery, i.e. a cochlear implant. We’re just waiting on custom ear plugs, so she can get back in the pool.
Susie ended the cancer appointment with visiting all the staff, nurses and doctors that have supported and loved her over this last year. She gave everyone a Christmas Card with a little thank you that can be used at Callahan’s General Store. Besides receiving and giving hugs and smiles with everyone, Susie even got a joke from Dr. Helmer.
Tonight is the first night of Hanukkah, and before you know it the Winter Solstice, Christmas and New Years will be upon us and behind us. Gabriel arrived today, after his flight yesterday through SFO was cancelled. Somehow, we got things together to light candles and make latkes. Though I think Gabriel wants to take over as cook. It will be a busy two weeks, with family coming in around New Years for our niece’s wedding. We’re very excited, but hoping for some rest before the holiday tornado gets into full form.
In the meantime, we will dream on what matters (i.e. A Healthier New Year). Love and hugs to all of you and hoping the world can inch closer towards peace and joy.
Considering Susie’s severe reaction to chemotherapy, it makes sense to investigate if future proposed treatments are likely to result in an adverse drug reaction. There is a company Coriell Life Sciences that is doing such testing with genetic sequencing, see:
Personalized Medicine Via The Cloud
Whole Genome Health Environment