Category Archives: brain saga

posts about my ongoing health journey living with meningiomas, including brain surgery and now radiation.

3 Months +

Leave a reply

Hi everyone. I know it’s been a while since I’ve updated so I thought I’d get you caught up.

Tuesday this week made 14 weeks, which is definitely more than 3 months, post-surgery! This is an important milestone. I am doing well overall and managing to work my half-day schedule walking dogs. (I am sometimes still very exhausted by my 4 dog walks and 10-11K steps/day, but I am doing it.)

Eyes: My vision has definitely improved. The double vision is much better than it was even a month ago. I still notice it some days, or some times of day, but it’s not stopping me from doing anything. I think my brain has just adjusted to it being the new normal. The last time I drove at night I was very aware that I had perfectly focused vision and no problems at all, which was wild! It can be hit or miss still and there will probably still be times when I will choose not to drive when my eyes are “acting up.” Also, I still get dry eye, mostly the right one, really badly sometimes, but drops help. At the end of my days or when I’m really tired, I get the dry eye and my right eyelid can still get really droopy. But overall, I’d say there’s been improvement and I’m hopeful that will continue over time. I haven’t seen an eye doctor yet but it will be time to do so soon.

Swallowing: It’s hard to assess, but I think I’ve made some small improvement. I’ve had 5 speech therapy sessions now with the VitalStim electrode treatment. It’s still so weird, every time! But today they had me eat a Clif Bar after I was done w/my exercises, as they like for me to get in as many swallows as I can when I’m hooked up to the device. And I really noticed, with the assist of the device stimulating my throat muscles, that I could swallow more completely, get a bite down with only one good swallow. It was amazing! I’m not there yet without the device, still usually needing 2 swallows to get food down, sometimes more, but the fact that I could feel that when hooked up to the device means the therapy is working. I definitely feel like eating has gotten easier, less laborious. I have 2 more sessions scheduled next week; I’m not sure when my ST order expires. But hopefully I can get in the 8-9 sessions she originally told me it would take before I saw much improvement.

Voice: Last week I had 2 people I hadn’t spoken to in a while tell me, completely unprompted, that they thought my voice was sounding much better. Some days I do feel like it’s starting to sound much more like myself. But sometimes I still feel like I’m talking in falsetto! It’s hit or miss, and definitely dependent on the time of day and how tired I am. Today in speech therapy I did however hit some low notes on some of the vocal exercises that I haven’t been able to hit before, and I can tell my range is getting a little wider and stronger. So I do think ST has been helping. I find myself now doing my vocal exercises while walking dogs – I’m sure others on the street around me think I’m some kind of crazy person! But it definitely helps to “warm up” my vocal cords, doing the exercises.

Next week will be a busy one for me. ST on Tuesday/Thursday. Follow-up appointment with Dr. Ballay the ENT on Tuesday after ST for him to re-assess my vocal cords. And then on Wednesday, I have my 3-month follow-up MRI to check to see if my tumor is growing back. Right after the MRI, which will be at West Jeff, I’ll take it upstairs to Dr. Culicchia to look at it and for a quick 3-month check up. So I guess by the end of next week I’ll have more to report!

Other than all this, I think this week I’ve learned that I really need to be getting more rest. I don’t really take naps anymore because I’ve been so busy in the afternoons, there’s no time. And this week, with the inauguration, I’ve had a couple of late nights with not enough sleep. I have suffered at work the following day both times, barely able to make it through the 4 walks. So I am recommitting to going to bed early and trying my best to get enough rest.

OK, I think that’s all I’ve got for you tonight. (No good pics to share, so here’s me walking dogs.)

12 Weeks!

Leave a reply

This past Tuesday made 12 weeks since surgery. Not sure if we calculate the 3 month mark by how many weeks or by the day of the month – my surgery was on the 13th so maybe I have to wait until then to say 3 months? Either way, it’s close.

This was my first week of being back to my pre-surgery schedule of 4 daily dog walks. (Before the pandemic, it was more like 8-10 walks/day, but many of my clients have been working from home and/or can no longer afford to pay me to come, so since I resumed working in May post lockdown, it’s been 4-5 daily.) So, dog walking until about 12:30pm each day, then on Tues-Thurs, I went directly across the river for back to back hour-long PT/ST sessions.

The electrode therapy on my throat is getting easier to tolerate, but so far I’m not seeing any improvement. My therapist told me it might take 8-9 sessions before I noticed it helping, so I guess I’ll just stay hopeful. The day after my first treatment, I actually thought it was maybe making my vocal cord situation worse as my voice was much softer and higher than it had been, but we’ve decided it was maybe just that the electrode therapy tired my vocal muscles out. It’s really hard to say since I’m now getting the treatment 2x/week – not sure if my voice has gone back to what it was before the treatment or not. I guess we’ll see what happens over the course of this month.

Monday will be my final PT session. I’ll have two ST appointments next week and then we might go to 3x/week after that. PT these last few weeks has mostly been doing leg strengthening via various weight machines, and really focusing hard on the weak areas of my eyesight. (Looking left and/or down is much more in focus than looking right or up.) I’m having mostly good days now, with the eyes, though Wednesday was pretty challenging for who knows what reason. It’s definitely better overall than what it had been for the first two months post-surgery, but I wouldn’t say it’s yet back to where I was before surgery. But I can function, and when I’m at home I hardly notice it being a problem. I mostly notice it when I’m driving but it’s not ever bad enough to make me not drive. So I guess that is an overall improvement, for sure.

Though I am managing to do all these things, I am really exhausted by it all. When I get home in the afternoons – especially on the PT/ST days – I’m really just done. Not good for anything except watching mindless TV and/or staring at the internet. I know I’m still recuperating, and I need rest. And I am doing that. But it’s still frustrating. Well enough to work and get through these long days of PT/ST in the afternoons, but not well enough to do much else. Sigh. But this is precisely why I’m not going to resume taking petsitting clients right now, because I feel like I’m at my limit at the moment, energy-wise, and I don’t want to overdo it. I will reassess in February after I am done with ST and have gone for follow-ups with Dr. Culicchia and Dr. Ballay.

But hey, I’ve hit 10,000 steps 3 days in a row now that I’m back to 4 dog walks a day! Woohoo! Which is a good thing since it is now Carnival season and the king cake is flowing. I’ve managed to keep those 10 pounds I lost in the hospital off all this time, so I’m glad to have the activity to hopefully counteract the amount of king cake I know I’ll be eating for the next month or so.

OK, I think that’s all I’ve got for now. Thanks for reading y’all!

selfie with electrodes on my neck

Happy New Year!

Leave a reply

I’m a little overdue for an update, so I thought I’d start my new year out doing just that.

This past Tuesday made 11 weeks post-op and I’m fast approaching my 3 month mark. Things have for the most part been going well and I continue to improve day by day. I have been walking two dog clients these past few weeks, and this next week I take the rest of my pre-surgery schedule back for a total of 4 daily dog walks. We’ll see how I manage that in addition to continuing 2x/week PT and the addition of 2x/week speech therapy. It feels like a lot but there’s no way to build back my endurance without pushing it a little, so I’m gonna try and see how it goes. My undying gratitude to Jen Sharp who has been walking all my dogs all this time since October and keeping my human clients happy until I could get back to them. It’s a huge gift to have a job/business to return to after an almost 3 month absence. I won’t likely be adding any new dogs or any pet sitting to the mix for a while until I’m certain I can handle what I’ve got, so please hit Jen up (or ask me to connect you) if you locals have petsitting or dog walking needs.

PT is winding down. I’m still scheduled through January 11th, so a few more sessions, but I’ll be “graduating” soon! This past week I advanced to using the weight machines, instead of the leg exercises w/ankle weights I’d been doing. (I still do the exercises at home every day.) I think my balance is back to normal and my legs and core are in pretty good shape. We still spend about half my sessions doing the eye exercises, which have been getting a tiny bit easier to do. My ST thinks my eyes have improved a lot in the time I’ve been seeing her, and I will say that I’ve had about a week of “good eye days” now. My vision isn’t perfect on those days, it’s just not so blurry that I notice it a lot and I don’t feel impeded by it. So that is good!

I still haven’t figured out an ophthalmologist to go see. If anyone local has a good reference, lemme know. I do think I’m gonna need a new prescription but I’d rather see an actual medical doctor since my nerves are involved. My current eye doctor is just an optometrist and I frankly don’t think he got my last prescription right, so I need to see someone new.

The big news is that I started back to speech therapy. My ENT finally put the order through for the VitalStim therapy, so we did that for the first time yesterday. The attached pic is me all hooked up with electrodes all over my neck – not a sexy photo, for sure, but wanted to share what it looks like. The electrodes are attached to a little machine that controls the intensity. The electricity pulses up and down slowly, and it took a minute to figure out that sweet spot where it wasn’t so intense that it was super uncomfortable but was intense enough that it feels like it’s reaching the right muscles to affect them. IT IS THE WEIRDEST FEELING IN THE WORLD, especially on one’s neck/throat! It took some getting used to but after a few minutes, I did. And then we just had our usual session, with me doing my vocal exercises plus some new ones, intermittently sipping from a water bottle so I could swallow as many times as possible while hooked up. Can’t say that I see any difference so far but I’m told after a few sessions I should start seeing some improvement in my swallowing ability, and it might even help my vocal fold paralysis some. (Not guaranteed but could be a delightful side effect.) So crossing fingers. I have back to back PT and ST 2x/week til the 11th when PT is over, and then will go to 3x/week on the ST through January. And then at some point, they will have me do another swallow study to see if this therapy has indeed helped. (I go back to Dr. Ballay, the ENT, on the 26th of this month for a follow-up.)

What else? Oh, I have driven at night a few times now, successfully, and yesterday I got caught in a storm while driving over the CCC bridge on my way to PT/ST. But it was fine! So that is progress! Driving is still a little tricky sometimes, depending on how my eyes are doing, but I’ve pretty much adapted to using tricks and cheats to get me through safely. It’s really great feeling independent again. (I probably still won’t like driving at night anytime soon, though.)

I have a few overdue thanks to folks for food they’ve made me. Anita delivered me the most delicious homemade spanakopita the weekend before Christmas; I ate some and froze the rest and have been periodically enjoying some since. (I heated some up for breakfast this morning! So good!) My neighbor Rhonda has now twice made me Crawfish Monica, the second time being last night for my New Year’s Eve dinner! So delicious and sweet of her to do! And Audra has kept me supplied with the most amazing soups in multiple deliveries; her butternut squash (or was it acorn squash?) soup is to die for! I really am so very grateful for everyone’s kindness and generosity. Though I am certainly well enough now to feed myself, those who know me well know that cooking is not my forté and if I won the lottery my very first indulgence would be to hire a personal chef so I never had to think about what or how to feed myself again. So I am always and particularly grateful for the gift of food. (This is not me asking for any more food or monetary donations, just being grateful for those who have provided me with such.)

Speaking of which… I don’t know what to do with this Mealtrain site. When I first decided to do my updates here, it seemed logical and I was trying to cut down on having multiple sites to keep up with. We – my friends who have helped administer this site – collectively decided to pay for the premium service, though I don’t even remember anymore what that entails. But now that I no longer need meals, donations or even rides, it seems silly to keep paying for this site and using it for updates. Do y’all even still want updates somewhere other than my regular social media? Should I find another site to continue updates? Or should I just keep using this one? Not sure what to do now that my health is approaching something closer to “normal” and there’s less to report on the regular. (Which is in no way to say I won’t still be dealing with my recovery for the next many months, and well, my neurosurgeon and I haven’t even started discussing my SECOND meningioma and what to do about it. But the frequency with which I actually have enough to share that constitutes an “update” is definitely lessening.) Please let me know your thoughts.

So there ya have it. My New Year’s update. I’m glad we are done with 2020. There was a lot of awful to go around, for most everyone. But I am trying to remain focused on all the positive things that happened last year and all that I learned through the pandemic and my brain surgery journey. I remain grateful to every single one of you who is reading this, for whatever ways you helped me, cared for me, loved me through 2020. I hope you can feel the love and gratitude I am sending back out to you.

Happy New Year, everyone!