Of all the things I've lost...

rhondalea · 02-06-2012, 08:56 AM

...I miss my mind the most. (Thank you, Mark Twain.)

I have moments of energy and clarity, but they usually don't coincide, so even though I might be able to think, nothing gets done anyway.

It's not entirely the cancer/chemo/radiation--my thyroid has made a big contribution since it decided to go out of whack again around the time I started radiation--but I'll blame them anyway.

Online, I have moments of posting frenzy, followed by stretches when I'm not even sure what I read five minutes ago. I started a thread here awhile ago, but I haven't gotten back to it to acknowledge all the replies. I figured I would manage it eventually, but now there's one I can never respond to because Trish has already left us, so I can't bear to call up the thread again. It grieves me that even in the last weeks of her life, she took the time to welcome me here, and I never replied.

In real life, the cats get fed, the litter gets changed and the cancer cat gets to his chemo appointments, but everything else is haphazard.

This morning, I set up the coffeemaker (brand new--it's called The Scoop, and I love it), but then I turned it on and walked away before putting a cup underneath the drip funnel.

Tomorrow is my last day of radiation, and I'm barely burnt (thank you calendula), but I start Tamoxifen in three weeks, so I'm thinking things are not going to get much better.

I find being flat to be quite convenient, I've had minimal physical side effects, my LVEF is steady, and my hair is growing back better than before. I should be joyful--and I kinda am, except for the steroid/thyroid-induced 10 pound weight gain--but if my brain doesn't start working right soon, we're going to be overrun by my "To Do" list (which would be ten reams high if I kept it on paper).

I know this post doesn't seem to have a point, but it's part apology to all of you to whom I've written posts in my head for not actually posting the words and part plea for the reassurance that eventually my brain will start to function halfway normally again.

There's more, but I can hear the cancer cat wailing for food, and since he, unlike me, has lost quite a lot of weight, I am compelled to run and feed him.

Jackie07 · 02-06-2012, 10:22 AM

Thought this thread might be related to the topic and provide some 'relief'. It will get better...

http://her2support.org/vbulletin/sho...511#post251511

chrisy · 02-06-2012, 12:58 PM

Well, I know chemo brain is no fun, but your post made me smile. Been through that, and I still occasionally pour the water through the coffee machine without putting a pot below. Sometimes I even forget the coffee. But I chalk that up to not being able to MAKE coffee because I NEED coffee to wake up!

Don't worry about the to do list getting out of control, you will forget about it anyway.

Seriously, I'm not trying to make light of what you are going through. I remember not being able to make it through a complete sentence before forgetting what I was going to say. As you can see, I don't have that problem anymore (but I do still have a twisted sense of humor, which I think is healthy)

You've been through a lot, so be gentle with yourself. Tamoxifen should not add to the chemo brain and I think you will begin to recover soon.
It will get better. Really.

tricia keegan · 02-06-2012, 01:09 PM

I used to get angry about my chemo brain but now like Chrissy, just have a warped sense of humour and laugh at myself a lot!!
Your post made me smile too so thank you for that and chemo has still left you a humourus writer!!

Hope the cat stays sane too!!!

chrisy · 02-06-2012, 01:49 PM

cats are always insane, that's part of their charm

CoolBreeze · 02-06-2012, 04:16 PM

As far as chemo brain goes, I no longer worry about it. I have no short term memory, it's never coming back and it is what it is. I have people around me who might get upset when I ask what a certain show might be 7 nights a week ("The Finder? What's that about?") but they have to suffer too.

As for the flat affect, that comes and goes. Don't assume, by the way, that tamox will affect you - it doesn't everybody!

NEDenise · 02-09-2012, 07:23 AM

Rhondalea, my dear friend...
What was I saying...oh ... well...
Hmmm...

I can TOTALLY relate to what you're experiencing! I'm embarrassed to admit this...but...my Christmas tree is still up! Every night I say, " tomorrow, that thing is comin' down!" And every day...the more pressing items on the VERY long to-do list push it out of my mind.

I wonder...how long does it have to stay up until I can claim it's actually my 2012 tree...put up a little early?

My brain fog is improving...slowly. You're a few weeks behind me on this journey...so give yourself time. I don't think my memory will ever be the wonder tool it once was...but I'd like to be able to remember, when I get to the top of the stairs, what I went upstairs for!!! And I'm so glad someone else does the coffee "thing"...I feel much less goofy about that now!

All the best!
Denise

sarah · 02-14-2012, 05:41 AM

Be patient and kind to yourself. you'll find a way to deal with things - lists or whatever. don't stress that things aren't the way they used to be just enjoy being here with your family. I hope those around you understand that you may forget things and help. I've always been a bit flakey but now.....! but I've also always made lists. and of course calendars are a must!! on line ones as well as off line ones!!!
take care
health and happiness
love sarah

rhondalea · 02-24-2012, 08:17 PM

Well, see? I've done it again.

Thank you all for the response and reassurance. In order:

Jackie, great link. Thank you. Some time back, I purchased the Kindle edition of Idelle's book, but I have been unable to read it. (I can't even manage bad fiction right now, although I used to read a couple of books a day.) Bizarrely enough, my memory is more complete than it was before chemo--my oncologist looks at me funny when I say it, but I really and truly believe cyclophosphamide had a beneficial effect on Hashimoto's--but I lack concentration and focus. I'm the poster child for ADHD. If you could see me in action, it would give you a belly ache.

Chris, with all that you're going through right now, I'm humbled to my toes that you took the time to encourage me. I am in awe of so many of the very strong individuals who post here, but your perseverance--not only on your own behalf but for the benefit of those who come here looking for help--is nothing short of remarkable. When I'm feeling battered, I think of you, and I'm almost convinced that what I see at the end of the tunnel is daylight (and not the headlight of the early morning express). I love that you're able to remain upbeat and funny even when faced with tough situations and choices.

Tricia, you're everywhere. (I read your posts at BCO and Komen, too.)

I don't know how you find the energy, but I will aspire to emulate you. (My thyroid slowed my pace quite a lot even before cancer.) Same for remembering to laugh at myself (which is something I'm normally quite good at, because I have plenty of material).

Speaking of humor, Ann, you're amazing. I read your blog and your posts elsewhere, and everything I said to Chris above is also true about you. At times, you have made me laugh out loud at your take on the terrifying and dire. It's a gift.

Oh, Denise, your reply to my last PM is still blinking at me. It's totally humiliating that I'm so far behind. (I can't help but laugh at what I slug I am, and now I've waked the cat with chortling and she's looking at me like I'm a two-headed mouse.) Have you taken your tree down yet? If not, I shall strive to reply before you do. (Just try not to take it down too soon.)

For the record, Sarah, I have about 10 calendars, and except for the calendar on the wall, they're all synced and up-to-date...except...I didn't write down the time of my next endo appointment, so because I was too embarrassed to call and ask, I called and changed the day instead. I'm pretty good with regular appointments (e.g., Herceptin), but everything else is just a panic until I get it into Outlook and synced everywhere. (Either I can't find the appointment card or I can't read my own handwriting. You would think I would put it into the calendar on my Android at the moment I make the appointment...and I do...and then I usually "cancel" instead of "save" because my fingers hit the wrong key.)

In other news, before the Cancer Cat had cancer, he had hyperthyroidism and a heart condition. Now he has diabetes. So he gets methimazole and amlodipine and an insulin injection in the morning, plus more methimazole, Prilosec (to protect his widdle puddie tummy from the chemo), Palladia (similar to Sutent) and an insulin injection in the evening. He does not complain (although he got a little offended tonight when I stuck a Keto-Diastix strip beneath his back end as he tried to have a quiet pee in the corner box), so I guess I'll just have to follow his example of grace under pressure.

I have started mixing caffeine with L-theanine again (see here: http://www.fasebj.org/cgi/content/me...bstracts/LB456), and it helps some. I also saw a lymphedema therapist today for a preliminary evaluation, and that was a real relief--I do not have lymphedema (although she says that we, the nodeless, have to be prepared for it to happen at some point), and now I have some trustworthy tips on what to do to better my odds for later rather than sooner. The best thing was having it all out on the table--neither my surgeon nor my onc wanted to address it at any point, even though I kept bringing it up. It's only because my RO didn't want to give me XClair (because he wanted to see how the calendula would work for me--and it did, perfectly) that he gave me the consolation prize of a referral to the lymphedema therapist. Sheesh. The things we must do to get a little service from the medical fraternity....

I'm off now to find the other threads to which I owe replies. With a little luck, I won't get distracted, and with just a touch more, I'll be able to reply to Denise before her Christmas tree comes down.

Thank you all so much.

Rhonda

sarah · 02-25-2012, 12:47 AM

Hi Rhonda,
Made me laugh about changing the date when you forgot the date! with my breathing problems I was so confused and anxious, I thought I'd made the appt with the cardiologist and the pneumonolgist the same morning so it would be one trip into town but when I showed up at the cardiologist he said "no it was for yesterday!" and of course I was anxious to talk to him so we talked between heart tests for other patients, more rushed than I would have liked and that's when he told me I'd had a heart attack!!! too stunned to know what to ask. so yes even with calendars, we can all mess up appts. lol I even get promps in google calendar but if you put in the wrong date......
take care,
health and happiness
love sarah

Pray · 02-26-2012, 12:32 AM

I am so glad to see I am not the only one with this problem!!!

MCS · 02-28-2012, 11:32 PM

dx in 2005 and still have chemo brain or early dementia-I'm 56!
How can I forget things that were all so permanent. and I forget things for work!
have lists for EVERYTHING

but what I miss most is optimism
xo
maria

rhondalea · 03-01-2012, 09:15 AM

Hi everyone,

Now that chemo and radiation are over, I've started taking vinpocetine again (along with some other antioxidants I gave up for the duration).

I first learned about vinpocetine as a cure for thyroid brain fog. It has also been used in Alzheimer's patients, although the evidence for that use is thin.

For me, it has been a godsend. I'm still having mild ADHD symptoms, but they're improving, and my mind is much clearer than it was.

"Better living through nutraceuticals." I'll be interested to see if it holds through tamoxifen therapy (which I started last night).

Here's a link to the vinpocetine monograph:

http://db.tt/AcqgFRkb

If you're interested in trying it, be sure to read the cautions, because although it is very helpful, there are some for whom it could be dangerous. I take 20 mg/day--I have 10 mg tablets, and I split them into 4 doses. You can also get 5 mg tablets, and 15 mg/day is a proven dose.