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?