Originally my sparse “bucket list” featured taking my family with me to the bottom of the Grand Canyon, where I had been but they had not. Then there was spending relaxed time in France, which we did for almost two weeks last summer; and I wanted to go to England again, too (which I did last September with my mom and Spee).
Now the list looks like this:
Finish building a Little Free Library for QIVC and neighbors. This is now 90% finished, thanks to this weekend’s focused work by my mom and her friend Paul!
Get the decorative railing at the top of the stairs finally finished (by our builder friend Glenn). Designed by me years ago, it was set aside so we could finally move in! and finish it later. It is now over five years later. 🙂
Go to Montréal on Amtrak.
Teach Jesse how to shift gears.
Go to Chipotle with Will! Never been there, and he really likes it.
Some more time in New Orleans with my mom (who lives there) and her cast of friendly characters.
See the barn swallows return to their summer haunts around our house and build their yearly nests in our eaves.
Boy, do I sound tired! Possibly more tired in my voice than the rest of me. I did notice today that my voice was really weak, so you are getting to hear what that sounds like. Not much like me, at least to my ear.
Today was almost completely taken up with “double chemo” along with a day-one-of-the-cycle appointment with the nurse practitioner who works with my oncologist. My oncologist is on vacation–and I hope he is vacating enough because he’s got to last me and not burn out! How is that for thinking long-term?
I still like to think of these chemo days as pampering and “spa” days. I can ask for pillows and warm blankets and stuff from the nurses, and I know a lot of them by now somewhat, so the infusion suite is a friendly place to spend a few hours.
Seems like the first day in each cycle of Thursday chemo (Gemzar & carboplatin) is about four hours long, start to finish. That includes blood work and an appointment with a practitioner before chemo. And intrathecal methotrexate afterward. today we left the house at 11 and returned at about five I think.
I felt like hopping into bed and invited some of my associates to watch a stupid movie with me. It was really stupid. I have a small headache and just feel kind of punky, but no nausea or queasiness – all that anti-emetic premedication really works. And in fact I am looking forward to eating some dinner.
Meanwhile, back at home, if you hold your arms just right…
Lisa and Aaron, who visited to help out (tremendously!) for the past few days, did the clay-dye job the other night in the bathroom with friend Anne while Jesse supervised from the bathroom shower.
Hmmm, I look a little tired in that last photo. Yesterday was my fullest and most energetic day in weeks. Shivani and I went to midwifery peer review, driven by Lisa and Aaron, who explored Saugerties. Nowdays I pay the next day for days like that–just in fatigue.
Plans for the rest of the day: a visit from the palliative care nurse, and before that some craniosacral therapy with my friend Meg. Then maybe a nap or Netflix before dinner.
I am still working on those voice memos for the blog. Let me know if they don’t work for you–hoping they are easy because they sure are easier for me.
Now for lots of pictures! I am really enjoying pictures these days.
The clay hair color (thanks, Arti!)
Messy.
Getting it all over.
Leaving the staples/incision alone
Jesse in the shower
Results!
Lisa and I
Plus Aaron
Me at peer review
Today after shampoo. It really doesn’t last that long.
Thanks to good drugs, I had no nausea or vomiting after my double chemo last Thursday. Go, Emend! I don’t care how expensive you are–I love you. I do seem to be more worn out than usual. Or than I expected. Since my legs felt stronger, I went for a walk beyond the mailboxes on Thursday or Friday, and I made it back! With a few rests. But this weekend I have mostly sat around and indulged in Netflix, at least when not learning new blog posting technologies such as below.
In general, though, I feel all right and I’m doing pretty well at taking care of myself except for the things that require two functioning hands. Unfortunately, this includes putting on most shirts and other important self-care tasks. My hands are damaged from chemo-induced neuropathy and we don’t know yet whether, now that I’m on a different chemo regimen or two, they will get worse or better. My feet are still pretty bad, especially the left one, which feels like a block of tingly wood that does not want to be touched. That left foot is the major cause of my unsteadiness walking.
Here is last week’s community Shaker Lemon Pie story out loud:
Chemo took a long time today but went fine. When we met with my oncologist beforehand, he noted that even with a brain bleed and a hospital stay–which always kinda takes it out of a person–I was definitely clinically improved compared to my last few visits (meaning he could see the difference in my mood, energy level, and strength). That was sure true–I could feel myself getting stronger and more stable in the legs even every day I was in the hospital. And being more able to take care of dressing and stuff, too, despite the lack of one functioning hand and having, still, one block-of-wood foot.
He could see that all 3 or 4 times he visited me up on D5East in the hospital too…the Stroke unit. I was the healthiest person there since I hadn’t really had a regular stroke. Surgery rounded on me daily because I’d had a brain bleed; neurosurgery rounded on me–at 6 or 7 AM–because I was scheduled for brain surgery on Tuesday; Rufus visited because he was on-call that weekend for NYOH and stopped by on his way to the office, too; my neurosurgeon visited separately from his team at a more decent hour Monday morning (7:15 AM after I’d been woken up and gotten out of bed and dressed); and the two of them gave the vexing question of my ongoing clotting-vs-bleeding anti-coagulation decision to a good, thoughtful internal medicine doctor, Dr. Tietjen. Not surprisingly, he is a DO and chief hospitalist at Albany Med.
So, chemo today. Never a dull moment in this life of mine!
We were in my regular “inmate chair,” off in a hall corner where it is very solo and secluded. No neighbor watching TV. Just can’t sit there when a prisoner comes at the same time.. When Rufus just came by to say hi, I told him I would even wear shackles to guarantee this nice quiet spot. He said darkly, “That could be arranged…”
I got the Methotrexate IT (intrathecal–via the newly installed brain port) after the usual stuff.It is quick, low-volume, and I barely felt the needle even on my sore scalp. We did it in the one small private room in the sprawling chemo suite, most likely to avoid freaking other patients out. I am not posting a picture of my head yet–there must be a limit of taste, right? Write me if you want to see it staples and all (they will be removed in 10 days or so).
Prevailing mood: deeply afraid of what could come next, except…I keep forgetting.
Came home to be greeted by these, left by my friend Shivani:
Call went well with the surgery yesterday midday and Paul has gone well cents. Haahaa
(“All went well with the surgery yesterday midday, and all has gone well since.”) Just thought you all might like to see what I have been trying to live with re dictation software so far!
We are home and some beef stroganoff awaits me for dinner downstairs…so that’s the news for now.
I am still in the hospital, but in a private room now so things are better. Last night we–five of us–had a Thai food picnic along with cranberry-orange granita made by my friend Isa, and then Jesse and I watched our TV show together while snuggling and Eric did a bit of work in the family waiting room.
I did not get to go home, but surgery is scheduled for tomorrow. Morning, we hope. Today I had vein studies (ultrasounds) to assess clot risk and another CT scan that the neurosurgeon will use like a GPS map tomorrow. Other than that, it has been walking the halls, meeting new nurses, and doing a few bits of business with Eric, who arrived around 10 AM.
Right now we are waiting for Jens, Spee, and Jesse to arrive for dinner and hanging out. This is one of Jesse’s two weekly nights at home, because they are boarding five days right now at Bard Academy. So I want to see as much of Jesse as possible even if I’m not home.
After an extra weekend spent at home instead of at Buxton–which ended up being spent largely here at the hospital or back-and-forth in the car–Will took one of our VW’s back to school with him yesterday so he can come back and visit when he needs to.
Spirits are good even though I miss my bed and my sofa and my fire. I have my people.
Just heard from my new nurse that my CT scan at 1 PM showed stable bleeding–so that is excellent news, no spread of bleeding to be seen today and no need to check my neurological all the time tonight. Woo hoo!
Still hoping to go home sometime tomorrow to await the Ommaya surgery when the neurosurgeon decides it’s time. Discharge will depend on both the Neurology and Neurosurgery services setting me free; then the Medicine service will cut me loose as well.
