As 1 year post-diagnosis turns into 1 year and 3 months post-diagnosis, I
still can't get over how many anniversaries (or as some call them cancersaries
or cancerversaries) I have. Every time a surgery date or 'first' goes by (first
expander injection, first PICC line, first treatment, etc.) I reflect on what I
was doing on the same day in 2011. The same can be said for this blog. I started
writing a year ago today and posted by first blog a year ago tomorrow.
The amazing thing about tomorrow is that it's my aunt's birthday. My aunt
died of pancreatic cancer when I was 15 years old; it was safe to say that she
was the closest person to me who had ever had cancer and then who had ever died
of cancer. When I was told that I had cancer, I thought of her within 2 minutes
of the words leaving my doctor's mouth. I finally felt like I understood a
fraction of what she felt when she was told the news. As the year progressed, I
started realizing that I could have never understood what she went through until
I went through it myself. I kind of treat this blog like a tribute to her in a
way.
Tomorrow is also very important because it is the Relay for Life in my home
town. Last year, a friend of mine contacted me and said 'I just entered Team
Katie into the Relay for Life' and in about 2 months, they raised over $10000. I
didn't join the team because I had just had my first treatment and I wasn't sure
how I was going to feel. This year, I am on the team and as of last night, we
hit our $10000 goal again this year. I can't tell you how touched I am to be
surrounded by so many incredible people. So all things considered, tomorrow is a
very special day.
Now, I never considered myself a writer and I totally underestimated how
cathartic and how therapeutic writing is. When I was asked if I would consider
writing about my 'journey' through treatment, I thought 'Yeah, I can do this -
I'm an open person and people might be able to relate to me.' Never did I think
I would get so much out of it. I think because I know other people will be
reading what I write, I know that it needs to make sense. I know that I need to
paint a clear picture of how I'm feeling so that others can understand the
thoughts that I'm trying to convey. And because of that, I think I work through
some of my feelings that I didn't even know I had. Because I have to sort out my
feelings to then put them into words almost allows me to acknowledge my
emotions in a clearer fashion and then from there I can deal with them and move
past them. Does any of this make sense?
My point is, I had never considered writing before I was asked to do it. I
totally underestimated what it could do for me, the connections that I would
make, the validation from others that it has provided me and the feelings and
emotions that it has allowed me to process in a whole new light. If you get the
chance to start a blog or even write in a personal journal, I so encourage you
to do it.
Sometimes, when I write, it's to convey emotions that I am feeling and
sometimes it's to retell a story of a great doctor that I've had or frustrations
with insurance companies, etc. Today, I want to share some information about
three totally different topics that have to do with (breast) cancer that I don't
think a lot of people know about.
First, although this may seem minor to some of you, I find it very
disheartening. Keith and I are going to a wedding next weekend and I found a
dress that requires a strapless bra - well it could be pulled off with a normal
bra but strapless would be better. I went to a mastectomy bra boutique the other
day and asked about a strapless bra and she told me that there is really only
one 'good' one on the market and it fits awfully and in order to fit into a 36,
you need to be a 30. That's it??? That's my only option? So guess what, I'm
wearing a bra with straps. I think sometimes we forget how limiting it can be
when we have special needs (like requiring different bras because we only have
1-1.5 breasts). I think of my other girlfriends who get to go to any bra shop in
the mall and buy the 2 bras for $50 when I have to go to a specialty store, have
limited options, have no strapless bra options and pay $90 for one bra.
Secondly, recently, I read a study that said chemo brain can last up to 20
years post chemo treatment for breast cancer. PERFECT!!! So, chemo brain is
something you experience during and post treatment that affects your thought
process. The way I like to describe it is - you know how one neuron in your
brain fires a thought through the synapse to another neuron (I'm basing this on
first year psychology about 9 years ago so I may have this a little off)? Well,
in the case of chemo brain, it's like the sending neuron fires but the thought
never lands at the receiving neuron and it gets lost in your brain somewhere. I
have literally stopped mid-sentence because I have TOTALLY forgotten what I was
talking about. I know we all do this, but I mean, I go totally blank, nothing is
firing up there while I'm experiencing chemo brain. The other day as work, I
needed to write a cheque to someone named Britney (and her last name started
with M), I wrote it to Brittany Murphy (the actor) just because my brain doesn't
work anymore.
Your memory is also affected by chemo brain as well. I went to order my
prescriptions the other day and they told me I was too early by a couple of
weeks. Too early? I'm going to run out of them soon. Well, I guess I had called
them in, picked them up and put them in my pill box already. Don't remember
that!! And to think this could last another 20 years!!!
Finally, I want to discuss fertility. Keith and I went and saw a fertility
doctor prior to starting chemo and learned about our options. We found out the
cost was going to be thousands of dollars but because I was a cancer patient, we
would only have to pay about 20% of the total cost. That was relieving but we
still decided to avoid more hormones, more injections, and more procedures and
take our chances. I then found out that if you decide to try fertility
treatments AFTER chemo, there are no programs set up to help pay for these
costly procedures because you are post-chemo. Huh?? So because I wanted to get
the cancer out of me sooner, and not postpone treatment, I can't get any
financial aid? I realize that there are steps being taken to change this but it
just doesn't seem right. Doesn't it almost encourage you to go through fertility
treatments before chemo (even if you are pumping hormones into your body while
there still could be hormone receptive cancer cells AND at the same time, you
would be pushing off treatment)? The ironic thing is, I was never told that if I
didn't do fertility treatments prior to chemo, nothing would be covered
post-chemo. I'm still glad we made the decision that we did but like so many
other issues in breast cancer, it would be nice to know the facts before it's
too late.
Like everything else, how do you ask the right questions when you don't know
what questions to ask?
Katie,
ReplyDeleteBecause of my own awful chemobrain, I'm going to start at the end. That sentence captures SO MUCH. Asking the right questions is of utmost importance but we only learn what's important after we've already had treatment.
I hate that you are dealing with things from one end of the spectrum to the other and everything in between, too. The bra thing seems petty as compared to the baby issues but the thing is, they all hurt. It's degrees of hurt.
I'm sorry about your aunt..... and I am surely glad you decided to blog. Your posts are so honest and always so beautifully written.
Hugs to you, Katie...
xoxox
Thanks AnneMarie, I can always count on your for those virutal hugs. This entry was definitely a mishmash but I just kinda had one of those weeks.
DeleteThanks for always having the right thing to say,
Katie