The email invite to the new protected part of the blog with the password has gone out, which will contain my health updates. If you didn’t get the invite, we missed you. Please comment here, or email me, and we’ll send it. I’m happy to have you walk with me. I just don’t want the nut cases.
Some of you prefer to email me privately, and that’s fine. I’ll respond as I can. I have some degree of aphasia, which makes individual conversations hard for the moment. Some of you have asked to call. Honestly, that’s not possible right now. Hope it will improve.
Sara and friend Louise and I went out to breakfast today. Lowfat yogurt and blueberries and black coffee are out. Thin Swedish pancakes, bacon, and buckets of strong coffee are in. 🙂
There is always a glimmer of great at the edges of life’s hard moments.
Good Scotch too. 🙂
Last week on the way to the hairdresser I was on track for a 100,000 step week. Today, inside, I have 527 steps at 9:30am. Bolix. I will have more by end of day, but I am not happy at my progress. You get old lady saggy looking legs awfully fast. 🙂
Here’s where we are so far. I had a biopsy, which we think revealed a tumor. It will take a week or so for the pathology to come back, tumor board to convene, decide on next steps, and meet with us to move forward. Right now there are six or seven teams involved: Neurology, Neuro Oncology, Infectious Disease [Panama TB exposure 50 years ago], Pulmonology [uncles’ farms in Iowa 50 years ago with bare feet in hay that might have funguses], Hematology [IgA] — you get the idea. Each team comes with an Attending [50-ish], a fellow [close to 40?], then in descending order a resident, intern, and medical student. The UW is a good teaching hospital and the docs are whip smart, many of them young women. The nurses are uneven — probably all baseline competent, but some stars and some merely well intentioned. Because of the very remote chance of latent TB I was in an isolation room with negative air pressure and everyone on staff who came in had to wear protective gear. Due to HIPPA rules the people who had access to my charts had extra work gearing up but were unworried. The food people and cleaning staff and people who drew blood were terrified. I could have had a 50 year old positive TYNE test or current Ebola or Aids. When I went down for CAT scan everyone looked at me, masked, as if I was Typhoid Mary.
In a week or so, one of these teams will be primary and we will have a plan.
My focus writing about this will be my experience of being in a very new and unknown place. Some will be medical details, but most what I think and feel. Starting this weekend we will password-protect posts related to this journey. We’ll be sending an email with the password information to friends and family. We will include a post here on how to request the password for any blog followers who we might accidentally miss. The protected password for kids is the same. I still will write occasional political and random posts as I can, but I’m sort of done with Trump. I agree with Nancy Pelosi. He’s not worth it.
The Dems races interests me, though. I have three male friends whose political instincts I trust, and we’re back and forth on Biden. I think he will fade. They think he will win the nomination and defeat Trump and Mitch McConnell will walk from the dark side into the light.
When pigs fly, I say.
So, three possible posts on any given day: #1 kid pics, restricted to those who already have that password. #2 General, open posts like this. And, #3, my health — password coming.
I am out of the hospital and home with Sara and Ben — which feels wonderful. We are all shellshocked. One week ago I was walking briskly to haircut and color at my usual salon, about three miles. An hour in I was unable to speak and was rushed to the hospital — glad the color was finished and 3/4 of cut. Tell me if you’ve ever seen me grey. 🙂
Yesterday I had a brain biopsy. It’s time to tell you the news was challenging. This weekend we are going to set up a password for those of you who want to follow along with this journey. If you follow my blog, I think we can include you easily — but, in any case, I’ll post a blog on how to sign up and if you don’t get specific invite please contact us. You are part of my life now. I want to be in touch with you as long as I can. I just don’t want to hear from scammers, miracle cures, and general all around nut cases.
I’m sitting in a comfortable chair, ‘and along with my many meds have permission to have a small Scotch — a very good one — while I watch The Marvelous Mrs. Maisel. Sara and Ben are cooking a nice dinner. Many of you took my idea of watching the sky. I like that and feel connected.
All for now. It’s been a long day. More tomorrow. Your love and concern means more to me than you can imagine.
It’s early morning in Seattle on Monday, and Sara is here. Matt coming mid-morning. Thank heaven they can keep up with work, sort of, from the hospital. I’m on the rotation for brain biopsy later this afternoon. Yesterday was complicated. Someone had reinstated my 81mg aspirin, which would have created problems if I’d needed a transfusion during the procedure. Under ordinary circumstances I could have been given proactive platelets, but that brought my longtime IgA deficiency into play. This is already more than you want to know — suffice to say I had to wait 12 hours without aspirin to clear the potential transfusion safety issue. Now we are there.
That said, this is a Level One Trauma center. When I first has my episode, the ambulance people assumed a stroke and quite properly brought me here. Now, the assumption is different and my symptoms are brought under control with meds — rather ponderous ones, I might add. That means I’m not a Level One Trauma patient and can bumped by an emergency that comes in by helicopter, usually. If that happens today, I’ll be moved to the affiliated UW hospital and treated there. In some cities, the trauma hospital and the rest of the services are in one building, like Strong in Rochester NY. Here, they are two.
I’m getting a ton of support and concern from all of you, which is just a great feeling and I’m very touched. Many of you have asked when you can call or visit. Honestly, I can’t do that. My writing is better — in the first days, I was dictating to the kids. Now, I can write my own updates. But it’s laborious. I keep hitting wrong letters, or double typing words and have to go back. It’s more like typing/retyping and is exhausting. Also, at random times my ability to speak clearly wigs out, usually for under a minute then comes back. But I don”t want to scare you to death. I’m a little used to it. It’s amazing what you can get used to. Given at that, I’m conserving my energy for immediate family.
I’m curious and taking note about what is unaffected: my online Jigzone Puzzles, which Tia Phyllis put me on to, and Mrs. Maisel, which I’m watching on Netflix on my phone.
Not how I planned my gorgeous Seattle summer.
I like a lot that many of you are looking at the sky with me, which is what we can share, and telling me what you see. There’s always a way to stay connected.
The admonition to “get a good night’s sleep” didn’t work well. It’s 5:30am. They should come in about an hour. Sara and Matt will be here all day.
I’m thinking about what I can live with. They will shave a big patch on one side of my hair. If it were winter I could wear a wool watch cap and no one would notice. A ball cap will help some. I don’t care much if people stare. The hair will grow back.
I’ll be naked briefly while they change me from hospital gown and Sara’s classy Cathay Pacific first class air pajamas to what you wear in OR. That’s OK too. I have an older woman’s body. I’m used to it.
They’ll cut a hole about a dime size in my skull. That’s a bit edgier. I can’t help think of Rosemary Kennedy. Joe Kennedy authorized two surgeons to muck around in her frontal lobes and destroy her cognitive function. None suffered any professional consequences – bastards. Nor did Rose Kennedy suffer publicly for failing to protect her daughter. She still went to Paris twice a year to buy the latest fashion. My surgeons aren’t going to do that. They will use computer technology and a thin needle to take tissue samples. A friend here welcomed me to the Hole in the Head Club. Who knew people had this done enough to be a group.
They’ll cover the hole with a titanium plate and sew up the skin. I’ll wake up, and we’ll see what we have. The mass is near my speech center. I’ll mind if my words are lost.
I don’t waste much energy wishing this things that have to happen shouldn’t happen. We have a plan. We have to know what the mass is. This hospital has great neuro surgeons. I say let’s roll and see what we have by end of day in terms of function. Actual diagnosis will take a few days – no shooting from the cuff today on initial impressions.
Maybe if I can eat, the kids will go out and get me Ben & Jerry’s Cookie Dough for supper.
My seven year old grandson told his Daddy he hoped what was wrong with my brain is ADHD, because he could help me and teach me what to do. He told YaYa that ADHD isn’t so bad. You get in get a little trouble at school but the rest is OK.
Honestly, I am incredibly blessed with the people, young and old, who love me.
Probably no update on Monday, biopsy day.
Hope for Tuesday.
Hang in there with me.
Dear friend and massage therapist Nicki tells me to be gentle and accepting with my body. Today I can stand and walk across my room, speak mostly clearly, eat, lift both hands, smile, and write a short post.
I am accepting.
My son and daughter are by my side, and their spouses are caring for kids and running around with everyone’s needs. My sister Wendy came from New Jersey to help.Older sister Linda will come later in the week.
Early in the week I will have a brain biopsy and we will get a diagnosis. Your love and support, prayers, hope for a miracle, give us strength.
Stay with me. If I lose words, you will remember my language, my humor, my occasional sarcasm. 🙂 That matters.
Today is a gorgeous day in Seattle. I am grateful. I can see the sky from my bed.
Look at the sky with me.