I created this blog to share my journey and the details of my cancer story. I also knew I wasn’t going to do a personal journal, even if I told myself I would try. That has never been my strong suit. I have used this platform to do it all. It feels very self indulgent at times, but also very therapeutic. A few things have come to light recently that have made me wonder if being this raw and open, but mainly sharing the more positive side of my experience, is the right thing to do?
I have had a few people in my life reach out and tell me that my blog has helped them in dealing with a situation - some fairly similar and some not. I feel honored and humbled that my words could help others, but also a need for honesty.
I also found a support group of women (men would also be welcome) who are breast cancer survivors or currently in the swing of things like myself. The support group is a quirky mix of women, and the platform we are using, Marco Polo, is totally outside my comfort zone, but I have loved starting to get to know these women and their stories. They understand. They have been through many of the same things I have experienced. And many of them have not sugar coated it at all. It is also a tremendous resource since navigating these waters is hard. It requires so much mental fortitude and decision making. It is pretty terrifying and exhausting, and I don’t touch on that very much.
As I have said in post after post, for me positivity is key. It always has been in my life. Two things though, we are not all wired that way and that is okay! And even as a half-glass-full kinda gal, this is hard, and I am scared and in pain a lot. And that is okay. I just feel that how I find ways, now and in the future, to deal with the trauma caused by all of this is important. I think I have touched on my fears and anxiety to some degree, but unfortunately it is something I grapple with on a daily basis. Things are much better than they were those first weeks after diagnosis when I felt almost constant anxiety and panic without the help of medical aids (and with it). Most days now, I honestly feel pretty good. My anxiety stays at bay or very low, and I feel much more confident than sad. Nights however are still very difficult for me. I am writing this post at 4:30am. I haven’t written a post in the middle of the night since shortly after my first surgery, but many of the early posts were typed out on my phone while everyone slept.
My doctors have prescribed sleep aids, which I asked for and need, but that is also something that is causing me anxiety. I am worried about creating dependency. As a woman in my early 40s, sleep has already gotten more disrupted and harder to come by, but I had been fairly resolute in my position that I wanted to fight through it without medication. My diagnosis obviously changed all of that. People talk about the “Sunday scaries” and not being able to sleep well that night because you start worrying about everything that needs to be accomplished in the week ahead and maybe what you didn’t accomplish over the weekend. For many, like myself, that often turns to general worry and concern about all the issues in your life that haunt the back corners of your mind. The difference for me now is that I feel that way every night and it all definitely leveled up.
Like I said, part of why I am sharing this is so that people reading my blog see the whole truth of my experience. Being brave isn’t always just about fighting hard but also about being honest.
I had been trying to decide if I wanted to write a post all week or wait until later today. Today, Friday the 9th is Jeremy’s birthday (the fun stuff) and my post-op follow-up for my nodal surgery (the scary stuff). I should receive my pathology results. These results will dictate chemotherapy and potential radiation decisions. I guess using the word “scary” isn’t quite right. I am not scared but definitely nervous and anxious. These results will dictate what the next few months will entail. I do plan to share what I find out.
I meet with my oncologist at Stanford next Tuesday at which time we hope to solidify a plan. Only concern is that my oncotype results may not be back, and if my pathology leaves much grey area in terms of decision making, we might choose to wait for that piece of information before proceeding. I know chemo needs to start soon so every result we have to wait on feels heavy.
I have always been taught that as a patient you must be your own advocate. That it is imperative to be informed, ask questions, and fully understand the decisions that are being made and why. I just never knew how difficult that could all be. A few people have felt bad for me that I have had to navigate so many doctors and opinions. They simply do not understand. Cancer is not black and white. Cancer is very grey. As I have stated before, every doctor has at least a slightly different opinion.
If I lived in Texas still, where I was raised, I would have gone straight to MD Anderson with my diagnosis, and yes, I likely would have sought fewer opinions, but that doesn’t necessarily mean my method here isn’t the best path. I have gained so much additional knowledge and we have done so much more research due to all the doctors we have met, and that is tremendously helpful. As I have mentioned more than once, those powerful words spoken by a dear friend and advocate that you have more time to plan than execute ring true for me every day and every step of the way. Sadly, you truly only get one chance to make almost all of these decisions, so the more information gathering you can do, the better. I know this next week will be filled with more hard decisions and that is okay. I now feel confident in the doctors that are helping me make these decisions.
Onto something a bit happier and lighter. I have been trying to place every card, note, gift receipt (and more) received from friends and family in one bin at my desk. I knew I would want them all in one place for when I can find time to make sure I properly thank people and to reflect. I pulled a bunch out right before this surgery and felt so overwhelmed. So much love and support. I knew I needed a single spot to collect these documents because there were times before the first surgery, and definitely during and right after, that I wasn’t in the right headspace or on pain medication or simply couldn’t type or speak very well, and I didn’t reach out to people upon receiving something from them. I hope you all know how deeply I appreciate everything that has been done for my family and me. So much amazing food, items that have comforted me, aided in my recovery, made me smile, laugh and definitely feel loved. Financial contributions that help take some of the sting away from all the additional expenses. Errands ran, posts reviewed, shoulders to lean on and more. I have never been so grateful for social media; so many dear old friends have reached out to tell me they care and I love that so much. I am very ready for things to be more back to normal so that I can see and hug more of my friends, hopefully travel home, and, fingers crossed, maybe be able to have a friend or family with me during chemo. I am not going to hold my breath on that last one. Stanford just met on the matter two weeks ago and currently have no plans to change their “no visitors” policies, but a girl can dream.
Well it is getting close to an hour where I can get up and make some coffee. Once again, I wanted to share some of the hard stuff, but truly, as I end this post, I just feel gratitude and optimism.