I
happened to go to the Undy 5000 website today, just to see what's up. And, I
saw that with the Phoenix Undy 5000, we raised over $100,000. OH - MY -
GOODNESS!!!!
You helped me, my team, and the others that participated in this race raise
over $100K for the Colon Cancer Alliance. With your assistance, the Phoenix
medical community is going to be able to provide colonoscopies free-of-charge
to people whose insurance doesn't cover the tests they so badly need. YOU did
that - not me. YOU ALL DID IT!
I am so proud to have been a small part of such a wonderful event, and I am
just bursting with joy at this news. What a wonderful way to start the
weekend....
Later:
It has now been
almost a full week since my last chemo session ended. I know that I had
unrealistic hopes about that session ending and just waking up the next day
feeling normal. I also know that I know that thinking this way is stupid.
Doesn't mean I didn't think it. Once or twice.
Suffice it to say that I don't feel normal quite yet. I would say that if you
took my pre-cancer "normal" and cut that in half, then maybe that's
where I'm heading. Not there, but working towards it. It's very frustrating.
But, also normal. I am trying to remember that a week ago, I was still hooked
up to the pump and exhausted from something as simple as eating dinner with the
family.
This week, I worked a full 40-hour week. That was exhausting, since I had to
arrange, gather, set up, oversee, and dismantle my department's holiday
potluck. For 40 people. Among other things. Whew. I am so very lucky that I
could defer child-care tasks to my Dad and Levi, and that I didn't need to do
the daycare drop-off, pick up, etc.
It was a long week, but a good one. I actually had to head home from work on
Monday b/c I was so tired. I literally was sitting at my desk, and realized
that I wasn't doing anything. I was moving things around, making an effort to
look like I was doing something productive and knowing the entire time that I
wasn't. And couldn't. I finally made a decision that I was going home. I was
terrified that if I didn't leave right then and there, I wouldn't be able to
drive. At all. Thank goodness, I made it home and headed directly to bed for a 2-hour
nap.
So, to the title of this post......neuropathy. This is a side effect that they
tell you about up front, and they try to describe to you at the chemo teach
session. You nod, listening to what they are telling you and not truly
understanding. It's like when someone says, I have a migraine, and you nod
knowingly. You might not have ever had a migraine, but your mind can form an
image or thought that makes you believe that you might have some inking of what
that kind of pain and torture is like.
This is a description of peripheral neuropathy, as posted on this website:
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131
Peripheral
neuropathy, in its most common form, causes pain and numbness in your hands and
feet. The pain typically is described as tingling or burning, while the loss of
sensation often is compared to the feeling of wearing a thin stocking or glove.
This is a great description for what I am feeling lately, which is both the
pain and numbness, at the same time. Very odd. I have this feeling in both my
feet and my hands, and it seems to be worse when I expose them to the cold (or,
cool here in AZ). For example, sitting here typing, I can't feel my fingers
hitting the keyboard, and yet, they still hurt just a little. My feet feel
swollen all the time, though they aren't, and again, they ache when I walk on
them. If I don't get up and walk around every few minutes and am seated for
long periods of time, when I do finally arise, it's absolutely agonizing,
almost dropping me to my knees a couple of times. Sometimes, the pain feels
like the "pins-and-needles" sensation that you get when your foot
falls asleep. But, it's way worse. Sucks.
The doctor has me on a supplement called Alpha Lipoic Acid (600mg once daily on
non-chemo days) to try to counter the side effects of the neuropathy. So far, I
haven't seen a noticeable difference, but it could take a while to really see a
change. Unfortunately, all of my change has been in the opposite direction I
want to go in. But, I know that things have to work through the systems in my
body, and I am hopeful that this change means positive things in the long run,
so I'll take it.
One of the side effects that I am seeing more and more of is chemo brain. This
information is from this website: http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp
Here are just a few examples of what patients
call chemo brain:
- forgetting
things that they usually have no trouble recalling-- memory lapses
- trouble
concentrating--they can't focus on the task at hand
- trouble
remembering details like names, dates, and sometimes larger events
- trouble
multi-tasking, like answering the phone while cooking, without losing
track of one of them-- less ability to do more than one thing at a time
- taking
longer to finish things --slower thinking and processing.
- trouble
remembering common words--can't finish a sentence because you can't find
the right words
I can honestly say that I have experienced every one of these,
sometimes all of them in the same day. Now, for those of you who know me, you
understand how so very frustrating and maddening this is. There are days that I
feel like I am fine, mentally. All is well in Michelle's brain (or, as well as
it was beforehand, which is all relative, really....but I digress...). Then,
there are other days when I feel like I have this fog in my head, and no matter
how many times you repeat something to me, or how many times I write myself a
note, or how many times I make attempts to do something...I can't. I just literally
can't.
If you are a mom - remember being pregnant? You would blame momentary memory
lapses on "pregnancy brain." You might forget something simple, like
your phone number. And, it's so easy to blame it on the pregnancy - hormones,
you might say. All your energy is going towards making the baby.
Well, take that feeling, and expand it ten-fold, and then have it happen daily.
That's kind of how I feel now. It's a frightening, infuriating experience. I
have been in the car and forgotten where I am heading. I have been in the car
and forgotten how to get somewhere I have been a million times. These have,
thankfully, been momentary lapses, and my brain soon remembers what it is that
I had forgotten.
But, there are other things that are effects of chemo brain. I have trouble
multi-tasking, which is something that I actually pride myself on. I have
always been able to do a thousand things at once, and now I can only do about
500 at one time. Not very efficient. :-) There are times when I can't remember
certain things, words, etc. Again, my brain usually recovers quickly, but I do
have days when it's everything I can do to keep my head together. Like this
past Monday.
The good news is that both of these side effects SHOULD get better over time,
as the chemo gets filtered through my body and released. But, I do consider
myself lucky. So many others have much worse side effects than me, and I really
don't have anything to complain about. I have been blessed to be able to work
through the majority of this (part-time, but still....) and to maintain my life
to some degree of normalcy. I know there are people that literally can't
function during their cancer treatment......those who can't eat, can't move,
can't do anything.
I am really so very lucky. But, sometimes, it helps to have a short pity party.
This was mine. Thanks for coming.
:-) Sense of humor has, luckily, not been affected by the chemo. Whew! Dodged a
bullet on that one, huh?!?!
Comments:
Hey
Michelle,
Sorry that things are still going so rough for you. But you're done with
chemo!!! YAY!!!
Those symptoms sound like they suck, just remember that while you're done with
GETTING chemo, you're not "off the chemo", yet. They re-injected you
every two weeks, right? Well, silly, it's only been 1 week! There's still a
week's worth of cytotoxic nastiness floating around in your body!
As hard as feeling the way you do is, it is probably worse to add the
frustration of "I'm not recovering fast enough" and probably the
subconscious panic of "OMG, I'M GOING TO FEEL LIKE THIS FOREVER!" So,
while celebrating your end of chemo (something that is worthy celebrating every
day for the rest of your life, imo), also just remind yourself that the way
you're feeling is probably normal and that it will be okay soon! Everyday that
you feel crappy is one day closer to being able to feel healthy, again!
Also, is there anything Jim and I can send you to aid in your recovery? Some of
our best tea, perhaps? Or maybe something for the soul, like Britain's
sugar-filled confectionery goodness? Let us know, kk? We love you and cannot
WAIT for you to get here. We are already plotting our ways of having ridiculous
fun. Punting will definitely be involved...
December
20, 2008 at 4:36 AM
Michelle,
My last Chemo was May 27, 2008. I had Neuropathy in my hands, occasionally in
my feet, and a sensitivity to cold that was extremely hard to deal with living
here in western PA (as you know coming from MN).
Every time I went outside my eyes teared up and then immediately closed up. My
eyes watered so much I lost my eyelashes from wiping my eyes. My oncologist
said give it time all these symptoms will pass. And they did.
My PET scan this past week was clear. I'm praying yours will be too.
January
15, 2009 at 2:03 PM
