I know things have gotten a little difficult to follow, so I’ll recap the last year or so. I’ll do some posts that have more details for each of the milestones later.
May 2018: Lumpectomy Surgery
July 2018: Pre-radiation scans show new growth in the lymph nodes in my chest that is confirmed by biopsy. Started new chemo (cisplatin) and completed 7-1/2 weeks of radiation.
August 2018: Radiation across over 1/2 of my chest. I burn a little.
Sept 2018: Radiation follow-up & MRI confirms 2 lesions (tumors) in my brain.
Oct 2018: Craniotomy to remove the larger of the 2 lesions, which is in the parietal lobe of my brain.
Nov 2018: Radiation on the 2nd lesion in my brain, which is in the occipital lobe.
Dec 2018: Tumor bed from the larger of the brain lesions is shrinking. That will be radiated later. The radiated tumor is shrinking. New problem – there is an abscess in my brain. I am admitted to the hospital where the neurosurgeon drills a burr hole to partially drain the abscess and get a sample of the fluid to determine which antibiotic will be best to treat it. I get sent home with IV antibiotics.
Jan 2019: My body doesn’t like the antibiotic, so we changed to a new one. I had a couple of things going on that took me to the ER. Another new tumor was discovered in my cerebellum. I was admitted again with left side weakness and tingling. I spent a week in the hospital unable to stand or walk un-aided.I was discharged to an acute rehab unit where I started out with a walker, graduated to a cane and got sent home before I was really ready. Had more brain radiation – this time on the tumor bed where the larger one was removed, some area in the occipital lobe, I think, and to the one in my cerebellum.
Feb 2019: Snowmageddon hit Seattle. I had home health nurses and therapists at the house nearly daily for 2 months. I was walking un-aided at the end. My vision starts getting really wonky. I am in the optometrist’s office at least once/week to get refracted and get new contacts. My prescription went down by half and then creeped back up again.
March 2019: More fun with vision issues. I can’t drive because I can’t guarantee I can see for a day, so I’m working exclusively from home. At the end of the month I started some outpatient physical therapy.
April 2019: Continuing vision issues. The abscess is finally decreased enough to call it gone. I am taken off the IV antibiotics that I’ve been on for 3 months. The tumor in my cerebellum is resolved. The others are stable if not shrinking. I met with a neurologist to see about getting off the preventative anti-seizure meds I’ve been on since the surgery. New scans show more concerning activity in the lymph nodes in my chest. We switch chemos again.
May 2019: I am one=year post-lumpectomy. I met with an oncologist at the Seattle Cancer Care Alliance to discuss possible drug trials. There are two trials opening in June that I qualify for. They are waiting for State approval. I am now on two oral chemos. Vision is more stable.
June 2019: Continuing on oral chemos and outpatient physical therapy. I’m still working FT from home. Now that I’m off of most of the other drugs, I’m getting more of my energy back. I’m able to start getting some of my clutter cleaned up again. The oral chemos have a side effect called hand and foot syndrome. This can cause my skin to blister and slough off. I’m using a cream with urea in it (Gold Bond Nighttime) on both my feet and hands twice a day. I wear light socks and manicure gloves to bed. Next scans are in July. If this chemo combo is working, we’ll need to decide whether to continue with this treatment or enroll me in one of the trials. Vision seems relatively stable. I had one episode of double vision for about 2 minutes that freaked me out. I’m due for a full eye exam anyway, so I’ll be getting that checked out and probably yet another pair of contacts.
More detailed posts to come…