There are so many things floating through
my mind. It is hard to latch onto any of them.
I guess there will be a few blog entries by the
time I catch up and am done.
The last time I went for treatment, I found
myself sharing more of myself. When I first
was diagnosed, I wasn't sure I wanted people
to know who I am.
I am finding myself sharing more and more, though.
Why shouldn't I? Especially if I have something that
could be helpful or interesting in some way.
For years now I have had a 3-minute relieve stress
recording that people can listen to at 212-560-7582.
It is a voicemail number, but I don't use it that way.
I wanted to make it convenient for people to be able
to access the recording. I have had it so long, long
before ipods, and other devices, made MP3 listening
so easy and accessible.
So many times I think about taking it down. I pay
for that number, and when times get tight I think
about it. But I also keep giving the number out.
Once I got a message from a teacher in NYC.
She thanked me for the recording that she apparently
listens to while in the bathroom at school quite
frequently. It made me feel good to know that
someone is calling. There is no way for me to
know how many people do.
One day when I can revisit this in a more practical
way, perhaps I will take it down. Until then, though,
people might as well use it and have access to it.
You're invited to be one of them. Just please be
smart and only listen to it when you can give it
your full attention, which obviously means never
listen while driving.
If you like the recording, you can get it as an
MP3. You can also get a 6-minute and 12-minute
version at JoLoPe.com. Please let me know if
you have any issues getting it, and I will get you
what you need. With everything that is going on,
my sites are in desperate need of updates.
**
The last time I went for treatment, I took a drawing
pad with me, and many people who were looking
over my shoulder told me how wonderful what I
was doing was. I wound up sharing about the
free wallpapers of Cedonaah, which were also
well received and praised. Ego stroking can be
a good thing, but more importantly, I loved that
I might be of some help, somehow.
I just wish I had a better business mind. As much
as I love making things available for free, I do
need to pay bills, and I can't seem to figure out
how to make that happen...not yet, any way.
And especially now it would be so incredibly
helpful. Having said that, if you find value in
these things, and would like to contribute to me
in some way, you could send me something via
Paypal using ThankYouATJoLoPe.com, or send
it via GoFundMe.
There is no obligation to do so, however there is
an appreciation if you are willing and able to help
me in some way. I have tried not to be stressed
about my situation, but it does run in the background
because sooner or later (at the rate I am going) I
am going to run out of money, and I will be in
serious trouble.
**
The last trip also had me begin a new chemo.
There is a chance my cycle will change, and the
length of each treatment has been shortened by
30 minutes. Those are potentially 2 good things.
The not so good things are that this new chemo
seems to be giving me more side effects than the
other one did. The other one wasn't great, but
this new one has already swelled up my hands,
and may have given me my first dose of neuropathy.
Neuropathy is something that is one of the scarier
side effects. As side effects go, though, the medical
profession seems to think it is in the "lesser" category
of things to worry about.
Neuropathy affects one's nerves. I have been taking
L-Glutamine in an attempt to keep it at bay. I never
felt it with carboplatin, but I seemed to have had an
effect almost immediately with this new treatment.
I woke up at 4 in the morning, and my legs felt
very heavy. Apparently that is one sign that it
could be neuropathy. Another sign is a difficulty
with balance/walking. (Check.)
I called the center that I deal with, and they pretty
much confirmed that that is what they think it is.
However at 4 in the morning I could not speak
with the people that are in charge of my treatment.
I need to wait. I also definitely want to talk to them.
If there is a chance that this could get worse, I could
be in trouble. If I can't walk, I certainly can't drive,
and if I can't walk or drive, I won't be able to go
for treatment.
I don't have anyone that I can depend on, and if
I can't get around, it is going to mean troubles even
in making meals and doing things around the house.
Chemo is not going to end til November/December,
and that is still a long time to manage, if I am in
some way incapacitated.
So we definitely need to talk. The person I spoke
to said they may want to change things somehow
if I have too many side effects. I don't know how
that is defined, but I guess I will find out. She also
told me that when treatment ends, apparently so
does the neuropathy. That is a relief, as some
neuropathies leave permanent damage in their
wake. But still...I need to do my best not to have
to deal with it at all. I will also be speaking with
the Naturopath to see what she has to say about
both of my new symptoms, although Benedryl
seems to have helped my hands.
There are medications you can take for the
neuropathy, but I want to do my best to stay away
from them. Even the nurse said it was a good idea,
if possible, as medications often create other issues.
That kind of reminded me of a quote that I once
saw from a doctor (I don't remember who, though)
that was something to the effect that when we
take medicine we often have to heal twice: once
from whatever ailed us, and then from the
medication taken. It is a rabbit hole I so want to
stay out of.
There are other things wandering around my mind,
but I think they will have to wait. As per what is
becoming all too usual, I am tired. I like to try to
pretend that everything is as "normal," and I push
myself sometimes as a result. I even took the steps
at the train station instead of the elevator. It wasn't
the best idea. I was OK, but it was difficult to do.
I don't think I will be doing that again any time soon.
:(
And then earlier today I had a twilight zone moment
with the friend I live with. I was so in a different
reality, even though there was every reason to know
better than what I believed to be true in that moment.
I read something by someone (who I now wonder
if she ever had chemo herself) that suggested that
chemo brain might really just be stress. In my case
I would have to say that there is no f*cking way
that is true. (I was going to say bleeping way, but
decided to be true to what I really thought and felt.
Sorry if I offended anyone, but I really want to
communicate as honestly as possible, and bleeping
just doesn't do it).
I guess that is all for now.
Til next time.
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