Warning: For those of you wanting to laugh, be inspired, or uplifted, please exit
now. It’s not been a good day...or weekend. My phone has chimed for two days. The calls, texts, phone calls which I have avoided are
in the dozens now. I just can’t talk to
anyone, even those who have walked through my fire and have “grown from the
experience”. For some strange reason,
especially those phone calls.
Chemo starts Thursday and I’ll admit that I’m a
wreck. I’m not talking about just being
nervous. I mean night sweats (three
changes of clothes in the middle of the night), panic attacks (waking up
gasping for air), and uncontrollable shaking and crying for hours and a
time. Although I’m dreading the hair
loss, that’s just a part of it. I’m
terrified of the long term effects this will have on my body. Jeff, always trying to be the positive,
supportive one, even gasped when I quoted Dr. Susan Love, author of The Breast
Book, touted by the New York Times as the ”bible” for women with breast cancer. Vanity might not get him, but I knew the loss
of brain function would do it.
It states that “Six months after stopping chemotherapy,
61% showed a decrease in function compared to their baseline and reported
greater difficulty in maintaining their ability to work. The most common problems were paying attention,
learning, and speedily processing. At the 18 month follow-up, approximately 50%
of the women who had experienced decreases in functions showed improvement
whereas 50% remained stable.” It goes on
to say, “I doubt that most oncologists warn women who are considering
chemotherapy that they may lose a significant part of their brain
function. For someone who needs the
treatment to survive, it’s worth it, but in cases where chemotherapy offers a
miniscule survival improvement, it may not be.”
Of course, a logical person would say, “What were the
details of this study? What were the ages of the participants?” The list of
questions is endless. But, you see, some
people with cancer aren’t always logical.
You’re in the fight of your life
and you want to know your opponent. Sometimes
the rumors about your opponent are just that…rumors, or studies skewed by whoever
makes their outcome look favorable. Nevertheless,
you want to be prepared.
Although my family was warned on D-day by the radiologist
and nurse practitioner, “Don’t get on the internet and start reading people’s
stories. Breast cancer varies greatly
from patient to patient. You’ll always
find someone who has a sister/aunt/cousin/mama that has had breast cancer and
they’ll want to share all the gory details...good and bad.” Did I listen? What do YOU think? Just recently, I joined a breast cancer
survivor group on Facebook. I realize
the need for support groups, whether physical or virtual, however, I’ve never
been one to participate in a group. I understand
the importance of sharing your story, validation, “venting”, etc., but that’s
why I started by blog. However, I started
thinking that the FB support group would be a great way for me to be invisible
and just sit back and learn…what I have to look forward to.
I had done a little research on Tamoxifen, an estrogen
receptor blocker, which I’ve been told by my oncologist, that I should take for
ten years once all the other treatment is complete. Ten years is the new protocol. It used to be
five years. Here’s a link of the side
effects from the Mayo Clinic, for starters.
http://www.mayoclinic.com/health/drug-information/DR601293/DSECTION=side-effects I know the rules. I get it. They have to list ALL the possible
and adverse side effects. I tried hard not
to worry, knowing that:
1. It
would help prevent recurrence.
2. Most
people don’t experience these symptoms.
Well, from this support group, I had learned that many
women were experiencing many of these symptoms!
Granted, for all of those women who are commenting, there are surely an
army of women who don’t experience such symptoms. But like I said, some cancer patients don’t
think logically.
For those of you who don’t know (before June 28, I had
NO idea!), there are dozens of different types/combinations of breast cancer. Combine that with all the stages and it’s
pretty difficult to find someone with the EXACT same type of breast cancer as
yours. Then I saw a post from a woman
with the same details/markers/stage, etc. as mine. She endured chemo, radiation, surgery and one
year later it came back as stage IV!!!
Below it were several comments saying something to the effect of, “It
happenened to me too. Hang tough. Be strong. You got this. Blah blah.”
Oh. My. God. Some would say (and
have said), “Just take this with a grain of salt. You don’t know their
diet/lifestyles and whether or not they smoke or have continued to take
whatever medications that might have been feeding the tumor (like progesterone
and estrogen).” I immediately deleted the group from my Facebook
page. Too late. The damage was done. I read it and I couldn’t “unread” it. My weekend was very dark and nothing anyone
said consoled me, not even prayer books or hopeful and positive quotes. I just cried most of the weekend.
Meanwhile, I read cards, comments, and e-mails telling
me to “stay strong”, “be positive”, and “hang
in there”. First of all, saying “STAY
strong” implies that I was strong to begin with. I don’t know how I ever earned that title. “Be positive”. Well, I can read all the
positive quotes I want about being rich and thin. It won’t make it so. I’m
sure Tony Robbins would disagree.
To add insult to injury, Dr. A.J. called me
yesterday. He said that he had met with
all of his colleagues and they had confirmed that I do, in fact, need radiation. Apparently, the “extranodal extension” of the
lymph node is a game changer. Radiation affects
the tissue and a patient should wait a year after they finish radiation to have
reconstructive surgery. Since I planned on having my mastectomy and
reconstructive surgery simultaneously, it will obviously change my timeline of
putting this behind me. So, it’s looking
like the soonest I can have my mastectomy and reconstructive surgery will be
January 2015.
I’m not sure what exactly to expect Thursday. Chemo side effects vary greatly from person
to person. Apparently, the Neulasta shot
(to help build white blood cell count) given to me the day after is pretty
awful.
For those of you who braved reading the entire post, I
apologize. To my loved ones who will be
there, I will try my best not to bolt before my appointment.
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