Tag: brain tumor

What’s for supper? Vol. 483: Smooth dinner, smooth brain

Happy Friday! Happy nopioid day to me! Warning: This post has some scar pics in it, plus a lot of complaining, so don’t read if it you hate that! 

There have been some freaking UPS AND DOWNS this week, but I am completely off rotten old oxy, and yesterday they took all 41 staples and one super itchy lumbar stitch out, and just now I did the thing where I greeted the dog by pretending to kick him to death (which he likes! He thinks it’s funny!) and I suddenly realized I would not have been able to do that a couple of days ago. My sense of balance is back! 

I have never been so cared for in all my life. I remember several years ago taking a baby to the ER for croup or strep throat or something, and the nurse noticed my throat was stitched together (just had a thyroidectomy), and she was like, “. . . are you OKAY?” and I was like, “. . . SURE” because I really didn’t have a choice! That was some year. That was the year we lost our apartment and our car died and my husband’s job was laying people off and I was pregnant and the OB/GYN noticed I had what may or may not be thyroid cancer, but the biopsies were inconclusive and I couldn’t really think about any of that because I had to find a new apartment, and let me tell you, some of that process was a little demoralizing We ended up moving in with my poor old parents, and all I remember about the trip there was that we brought the very last food we owned, which was half a box of Kix, and when I drove away from our old place I had an aquarium full of fish strapped into the front seat, and when we got to our new place, there was only a little water and one fish left, and I never did find the missing ones.

ANYWAY, what I’m trying to say is life sure has changed, and I haven’t done a damn thing for the last two weeks except accept help, listen to music, nap, cry a little bit, and eat peaches. Damien has been stupendous, not only keeping up with everything, but making sure the kids are getting little treats and everything is calm and stable, and telling me repeatedly that every crazy thing I say is normal and understandable. My friend Elisa send a fun package of little crafts I’m doing to keep my hands busy, which helps a lot. My friend Sadie came over, I think my sister Rosie is coming this weekend, my kids’ teacher and principle each sent a yummy dinner, and the dad of one of Corrie’s friends stopped by with a gift card to the local pizzeria. Damien has been making excellent dinners — buffalo chicken wings, roast beef sandwiches, homemade spaghetti sauce, all kind of great stuff. Elijah’s going to come over and make homemade pizza this Sunday. 

I myself have been sticking mainly to soup, smoothies, and peaches, because my jaw and mouth muscles took quite a beating. I somehow missed the whole smoothie phenomenon when it first took civilization by storm (some of you probably don’t even remember life before smoothies!), but Damien got me a ton of Greek yogurt and frozen fruit, and so far none of it has been specifically named in a recall, so that’s been working well for me!

Very smooth indeed.

When I was still in the hospital, my poor peach tree split. Damien knows how much I love this tree and how much I’ve been looking forward to the big year B harvest, so before he even told me about it, he got some special tree wax and straps and put it back together. It did lose a lot of branches, but he did such a good job, and I think it’s gonna make it.

Look at this beauty. 

I went out yesterday afternoon and gathered up a nice little harvest.

When Clara and her boyfriend were over last week, they gathered up hundreds of fallen peaches, dumped the spoiled ones in the compost heap, and started blanching the salvageable ones. I was able to throw a bunch of peeled peaches in the blender and now I have a little stock of peach puree socked away for winter! It seemed super, super important at the time, and I’m grateful everyone humored me with this important peach work.

My garden is actually doing so well. I picked a ton of basil, coated it in olive oil, and froze that, too. I think the eggplants are beyond saving, and all my lettuce bolted, but there is tons more basil, tons of green tomatoes still marching along, and so much corn just begging to be picked. The pumpkins are still smallish but numerous, and the carrots and potatoes can be dug up any time, I guess. The grapes are also having a crazy good year, and I think maybe we will do some harvesting this weekend and make a little juice. Or just let the birds have them, I don’t know.

One of the mixed flower patches I planted has actually started growing flowers. Not a ton, but maybe there will be more next year. I think it’s mainly annuals coming up, and maybe the perennials will show up later.

The other mixed flower bed I started only has a few flowers, but it does have tomatoes and squash growing because I added plenty of compost, so that’s something! I also–

okay, I am making it sound like I’m up and about and doing projects and getting work done, and truly, I am not. I am mostly just lurking around in bed, and I do like one thing per day just to keep myself from going nuts. Sometimes that one thing is picking flowers.

Sometimes it’s just heating up soup and eating it in the most repulsive way imaginable because my lips and cheek are still leading a life of mystery and unpredictability. Yesterday was the first day I took only one nap, instead of two or three or four or six.

That being said, I did happen to notice that Marvin, the apple tree, is having an incredible year for some reason. We have never done one single thing to care for this tree, except to name it Marvin, which isn’t much; and it’s always understandably produced a medium harvest of truly terrible apples. But this year, they are tons of them, and they look NICE (relatively). No idea why. So the other day, I got to that typical stage of post craniotomy recovery where you find a free 8 ton hydraulic jack on Facebook marketplace, and you happen to know that your husband could really use one for his ancient SUV, and he’s already out driving around to pick up kids, so you set up a pick-up for the jack because you love him, and also SECRETLY, your plan is to steal his old scissor jack and use it to make a CIDER PRESS. 

Basically you just have to built a rough wooden frame with room inside for a bucket, and a little stack of wood the same diameter as the bucket, and the jack on top of that. You fill up the bucket with apples and start cranking the jack, and it compresses the apples, the juice runs out the holes in the bottom of the bucket, and you need some kind of catch basin obviously. It’s possible this is a dumb idea and I should not do it, but I have a few weeks to think about it, anyway! The kids LOVE cider, and goodness knows I have plenty of wood scraps from the treehouse

(which I don’t think Corrie has gone in even one time since I finished it, OH WELL). I also have a giant metal pot with a spigot built into the bottom, which I got on the side of the road and have been using as a rain barrel. I have no idea what it was originally for, but I think it would work great as part of a cider press. 

Anyway, I talk big, but I was smart enough to stop myself from contacting the new restaurant down the road to tell them I’m really good at making cheesecake if they want to make a deal; so probably I will be smart enough not to make a cider press. But who can say. 

The truth is, now that I am off oxy and my mind is pretty functional again, even though the worst is over, and I’m truly so so glad I don’t have cancer or any real permanent disability, I am now capable of mentally addressing it all, and I am having a wee bit of trouble processing what the hell happened to me. The time in the hospital was really rough, and even though Damien came every day, it was scary and lonely 

and the pain there and the first week back home was . . . well. It was something that made me feel slightly but probably permanently different about human experience and our relationship to God.

This next picture is a pretty good illustration of how amazing and optimistic I felt when they finally let me go home, haha:

So I am a little upset, off and on. So, I’ll build a cider press if I want! Do not argue with me about that! Not that you would! You are all very nice. 

But really, the pain is just worlds better now, and that is an unspeakable relief. It’s just a medium to bad headache now, and a lot of numbness, plus some rather entertaining sensations as the nerves in my cheek, tongue, lips, and jaw either wake up or regrow, and my whole left side from my neck up is still kind of a mess. And my ear is blocked up and loudly crackling, and they said whatever was in there was probably too deep for a normal cleaning to take care of, but oh well. I still haven’t gotten the pathology report back, but I’m really expecting it to be clean. And my eye works again! I didn’t even realize how bad it had gotten before surgery, because it went haywire gradually, but getting rid of that tumor really fixed it. 

I am going to ask someone to take me to Supercuts this weekend so they can give me an identical undercut on my other side, because why the hell not.

The hair in the spot they shaved is growing in white, as you can see here from a pic taken shortly before I got the staples out

so I might as well even that out and have some fun with it.

The swelling is taking its sweet time to go down, and I’m still giving Surgeon General of Beverly Hills vibes

but I am VERY VERY HAPPY TO HAVE THOSE STAPLES GONE. They were starting to make me so angry! And yes, I’m incredibly grateful I’m not doing radiation or chemo right now. As yucky as this has been, it could have been SO so much worse. I was sorta kinda getting ready to maybe die on the surgery table, so I’m just . . . I’m working on stuff. 

In a couple of weeks, Damien and I are going to Boston so he can [pause to catch breath from surge of wifely pride] accept his award from The New England First Amendment Coalition. Gosh, I am so happy about this. They only bestow three awards per year, and last year’s winner of the Freedom of Information Award was The Boston Globe. This year, it is my husband. 

They are putting us up in a swanky hotel and it is going to be FUN. 

Okay, thank you for listening to all of that! Or skimming, or just clicking and then sighing and closing the tab! I get it! Let’s all go have some soup.

What’s for supper? Vol. 482: Not my problem

Hello! Happy Friday! Happy DEFINITELY RECOVERING NOW day to me! 

My brain tumor craniotomy was nine days ago, and it went very well. I’ll share some medical details next, for those who find such things interesting!

They removed a piece of skull, detached as much of the tumor as possible, leaving only “a nubbin” the size of a grain of rice; reattached the skull bit with some titanium discs and hardware, and stapled my head back up with 41 staples. They also put in a lumbar drain to lower spinal fluid pressure during the procedure, and that needed to be stitched up. I had needles throughout my scalp during surgery to monitor brain activity, and I had a complex rig on my arm to track my blood pressure directly from my arteries. The surgery took about four-and-a-half hours,  and I either did or did not have a seizure during it (the notes are confusing!), but I’ve been on medication to keep that from happening or happening again. I was in the ICU for three days and then moved to the regular neurology wing for another two days. I am still waiting to hear on the pathology report, but I am expecting confirmation the tumor was benign, and I may not even need radiation for what remains. 

I am so, so glad to be home. Recovery has been one step forward, two steps back. The pain level is gradually receding, and so is the amount of time it feels really bad each day; and the nerves on the left side of my face are slowly waking up. My left eye, which wasn’t acting right because of the tumor, is totally functional again. I can’t really chew yet, but luckily I have always been a big fan of soft foods, so I’m having all the gruel, beans, and smoothies I want. I am just feeling a little, little bit more like myself every day, for better or for worse! 

I haven’t been accomplishing a single thing. I’m trying to walk around the yard once or twice a day to keep away blood clots and whatnot. My friend Sadie came over when I got home, and she got us set up with a medication schedule and tracking system, and spent the night to make sure we were all okay. One of the kids’ teachers sent home some delicious quiche and salad and bread and butter. The kids have all been pitching in, and Damien took the kids back-to-school shopping and has been getting everyone to school and work on time, keeping me supplied with hot packs and cold packs and endless pillows and drinks, and just basically making sure my body and mind are completely at rest while he takes care of everything. A ton of people sent donations to help us pay for all the gas and meds and to make it possible for Damien to care for me and the kids without getting in too much of a pickle, and we REALLY appreciate that, and all the prayers and words of encouragement.

I feel so incredibly lucky to know so many generous and helpful people. At the hospital, I met a few folks (Jennifer and Paul. Please remember them in your prayers!) who just don’t have anything like this level of support. All of the nurses were nice and caring, and a few of them were really extraordinary. It’s a great hospital, and again, I feel really lucky. And happy to be home. Because even a really good hospital kind of sucks. 

There were a couple of times when the pain and fear really overwhelmed me (specifically, in the immediate post-surgery MRI, and one of my first evenings at home), and you know, at a certain point the jokes and lessons and well-expressed thoughts run out, and you’re just up against the wall with suffering, and the only thing to hang onto is the hope Jesus is there somewhere. Some of you guys end up in this spot a lot, and I am just in awe of you. 

I also gotta say, I do not see the appeal of oxycodone. I am glad I have it, because it makes the pain manageable, but everything else it does sucks, and I’m really looking forward to getting off it. There’s no joy in it at all; it just tucks normal human experience up on a high shelf where you can’t touch it. 

I’m supposed to get my staples and stitches out on September 3, and then I have another MRI in October. In the mean time, I have an actual metal question mark traced out on the side of my head, which just seems fair. I must say, the surgeon did a neat job doing a rather cute undercut, so my hair actually looks pretty normal. I may go to Supercuts and get the them to shave a matching pattern on the other side! Or maybe I will just have some more bean soup. 

And that’s my story! Thank you so much to everyone who has reached out. I am praying for you all!

 

 

What’s for supper? Vol. 465: Life with Abby Normal

Hello! Hello! Hello hello hello. I am so very sorry it’s been so long. I will tell you what we’ve been up to, and why I’ve been off the radar. 

The truth is, most of what has been preoccupying me are stories that are not mine to tell. So I will just ask you, in your kindness, to please pray for the beloved X family, and the beloved Y person, the Z beloved person, and the beloved kid. Multiple rolling emergencies and really painful situations.

Then right before Holy Week, we were finally able to procure a family member’s diagnosis we’ve been fighting for for two years; and then right after that,

I found out I have a freaking brain tumor.

It’s BENIGN, and growing very slowly. I may have had it for ten or even twenty years, but it has only been symptomatic since about October. I got an MRI on March 24th and saw the neurosurgeon on April 7th. It is almost certainly a trigeminal schwannoma, which is rare but almost always benign. But look at this thing!

What the heck!?!

I can try medication to control the symptoms, radiation to keep it from getting bigger, and/or surgery to remove as much as possible, depending on how tangled up in nerves it is. The catch is that radiation sometimes causes scar tissue, so if I do need subsequent surgery, it will complicate matters. 

It’s very unlikely to cause an aneurism, though, so I’ve got that going for me. To my disappointment, it is not what’s causing my migraines, which are global; whereas all my schwannoma symptoms are all markedly on the left, (so I cannot ask them to implant the spare Instant Pot valve I have, which would allow them let the steam out when I need to. And they call themselves specialists, pah.) The way it’s placed, it affects my facial nerves (so, tingling, numbness, headaches, and potentially double vision) but not really scary stuff like speech, memory, or cognition.

Although, as it turns out, knowing you have a brain tumor, but not being able to meet with the neurosurgeon to discuss the implications for a full two weeks does affect your speech, memory, and cognition, especially when you are preparing for Easter, Passover, and a birthday all in the same week.

And that’s the main reason I’ve been struggling to get writing done: Knowing something is wrong, not knowing how serious this is, and not being able to tell anyone, including the kids, because I don’t really know anything! So it’s a huge relief to actually have some information. 

To put it into perspective, the neurosurgeon made an appointment for six months to check in with me, in case I haven’t made a decision by then. So yes, I have to deal with it, but it’s not a, yanno, BRRRRAINNNN TUMORRRRR!!!! It’s just a . . . brain tumor. Which is still not IDEAL, but you know, I got the initial MRI in the evening twelve days before Easter, feeling like it was silly to make such a big deal out of some little stuff, and probably I was just imagining it anyway, and probably if I learned how to hold my neck right, my symptoms would go away.

Then the next morning I opened up the portal expecting them to say everything is fine and I must have just tweaked a nerve by chewing gum too forcefully or something.

Instead it said “tumor” and “neurosurgeon,” and I closed my eyes and some tears leaked out, and then I was like, “Okay, Jesus. I did not ASK for a tumor. So clearly this must be YOUR tumor. So I am officially handing it over to you.” And it has been a pretty light burden since then. (With some more crying, but I always cry at Easter anyway.) 

So now I just have to figure out what to do. Right now, for various reasons, I’m leaning toward surgery, preferably at the end of the summer. I would be in the hospital for 2-3 days, and recovery would be 4-5 weeks. Prolly gonna keep most of my hair and get an interesting scar behind my ear, and my skin will not enjoy the radiation I guess. The surgeon did say I might struggle with chewing and talking for a bit, and I did say BUT THOSE ARE MY TWO FAVORITE THINGS TO DO. 

Any. Freaking. Way. Life goes on, and Damien has been an absolute rock. He has been really sick with a horrible sinus infection for most of Lent, but in callous disregard for his illness, the cars have both been breaking repeatedly, sometimes simultaneously, and also Sophia’s car, too; and also the water heater, the bathroom sink, a drain pipe in the basement, and half a dozen other things I’m forgetting about, have been breaking. Yesterday we drove home from the dentist, got out, and the door fell off. 

Which I have never seen before! But he has just been going ahead and watching tutorials and ordering parts and fixing everything, one by one by one by one, and even saying things like, “It’s okay if  you want to get rid of this loveseat you just asked me to pick up from Facebook Marketplace, and find another one, and I will pick that one up, too.”

We didn’t get a nuclear war, so that was good. The first round of eggs we put in the incubator didn’t hatch, so we just started a second batch. None of the peach pits I planted have sprouted, but my rhubarb is suddenly thriving, the crocuses are coming in thick and gorgeous this year, and even though the snow plows threw tons of gravel up over my garden, the daffodils are just ignoring it and poking through anyway. Jesus is risen, the sun comes up every stinking day, and life is good. Gonna build Corrie’s tree house this spring if it kills me. 

NOW, who wants to see the strawberry Tom Servo cake with cream cheese frosting I made for Irene’s birthday?

Poor guy is leaning pretty badly, but I was proud of him anyway. I was also pretty pleased with the earrings I made her, and it turns out carving wood and twisting up little bits of metal are a really good way to occupy your mind, so you don’t go crackerdog.

I guess I will just do a quick round-up of foods, starting with Passover. All my Passover recipes are here. 

We had cinnamon garlic roast chicken: 

chopped liver, gefilte fish, and spinach pie bites:

roast lamb:

Chicken again, and charoset:

Of course we had chicken soup with matzoh balls, but I forgot to take pictures. This year, I decided to try using seltzer in the matzoh balls, which is supposed to make them light and fluffy. It worked a little too well, and about half of them fell apart! I’ll probably go back to the can recipe next year, and just take my chances. 

Yes, I was worried there wasn’t enough dessert: 

I did the same thing I did last year with the sponge cake, and squeezed fresh lemon and orange juice, then forgot to add them. So I made a syrup with half the juice, poked a bunch of holes and let it soak in; and then I made a glaze with the rest and poured it over the top. Pretty nice. 

Several of the big kids were able to come over, the other kids brought a guest, and we had a lovely seder, even though we never did find the beautiful illustrated haggadahs. Here is Corrie reading the four questions: 

Then we went to the Easter Vigil, which was three hours long and very beautiful and threeeeee hours long. Got home, set out the kids’ baskets, and went to sleep. I spent most of Easter Sunday in bed and I didn’t even feel bad about it. 

We kind of muddled through the rest of the week with leftovers, Aldi pizza, and bagel sandwiches. Then Wednesday I chopped up and heated up the leftover lamb and leftover chicken from Passover,

and I made some pita and we had extremely delicious gyros. Some of the pita turned out a little . . .unpuffy . . but it was still an excellent meal, which we ate with the pita still hot from the pan. I had mine with lamb, red onion, yogurt sauce, feta, tomatoes, and hot sauce. 

Scrumptious.

Then yesterday morning, I quick pickled some carrots and got some pork marinating with onion, garlic, sugar, pepper, and fish sauce, and roasted that up right before supper 

and we had banh mi on toasted baguettes, and some of us added chopped liver. Banh mi is already the queen of all sandwiches, and the chopped liver puts it right over the top. 

Insanely delicious. 

Not sure what we are having today, but it is MEATSTER, so I may spring for some hamburgers or something. 

And that’s-a my story!