Ball of Confusion?

Let's talk a little about what to say (and what NOT to say) to someone with a life-changing diagnosis, in this case, Stage IV Metastatic Breast Cancer. I will say that this topic is SUPER subjective. I, generally, try to find a positive in everything. However, I will give it to you straight, from my unique perspective. Please note, however, that these are general suggestions. It takes a lot to offend me or get under my skin. 

That being said, the suggestions below are what I have learned since receiving my diagnosis:

• DO NOT say you are sorry (refer to my 5th blog post, titled "No Sorry Allowed!!"). I am a lucky woman who has lived a very full life. The one thing that this disease has given me is a sense of purpose. This blog is a product of that newfound purpose.
• DO NOT say you are glad it is me and not you (yes, this really happened). Although I laughed and agreed when this was said to me, it could possibly hurt someone else's feelings, if it were said to them. I am sincerely happy that it is me and not someone with a spouse and/or children. It is not uncommon for me to wish/pray that God lengthens the lives of those with a terminal diagnosis, as well as a husband/wife and/or children (particularly those that I love in this situation) and to take away from the time that I have left. I equate this to donating some of my vacation time at a job to someone who is more deserving or in need - it's only fair, in my opinion.
• DO NOT ask how much time they have. I know that I do my best not to internalize the median life span of my disease (3 years) because I believe that, ultimately, the man upstairs is the only one that knows what is in the cards for me. 
• DO NOT tell them how strong they are. Think about it, what choice did we have in this? ZERO. So how does this make me strong? I am just trying to survive, one day at a time.
• DO NOT say "let me know if you need anything". I feel like that can be such an empty statement. I am too proud to reach out and ask for help (I am working on how to get better at this "being vulnerable" thing). Take the initiative and just be present, if possible. For example, you can ask if they would like any company during chemo treatments, scan appointments, or just go and hang out with them at their house. 
• DO NOT ask for too many specifics related to the disease, especially if you are in a public place. I know that I do not mind when people ask me questions. However, although I want to educate others on my disease through everything that I am experiencing, when I am out, it is likely that I am trying to forget all of my "stuff".
• DO NOT walk on eggshells around them because you are unsure what to say. There is no handbook (that I am aware of) to help with what to say to someone in this situation. Do your best to keep it light and speak from the heart.
• DO invite them out. I know that I may say no and stay in 80-90% of the time, but there is a chance that I will say yes :)
• DO NOT take it personally if they cancel on you. There are some days that we just cannot do it. We must listen to our bodies, realizing we need to take a step back and relax, when necessary. 
• DO NOT only talk about cancer and all sad shit. We did not choose to be in this situation and cannot let it define us. I know that I am trying to use this to make me an altogether better human, and it feels great!
• DO NOT only talk about YOURSELF. No, I DO NOT want to be the center of attention, however I do not wish to sit and feel like I am being held hostage in my own home (or cornered at an event).
  
• DO NOT tell them about your brother's sister's husband's cousin who BEAT their disease. Just don't. Don't you think we researched "cures" and "alternative treatments". Speaking solely for myself - I want to LIVE!
• DO NOT tell them to fight. What the fuck do you think we are doing?
• DO NOT tell them they are a hero. I will speak solely for myself on this one - What makes me a hero? Being sick? That is not good enough, in my opinion. Yes, a hero is someone who demonstrates strength in the face of adversity. But, the truth of it is - I am just treading water, trying to survive. How does having terminal breast cancer (or any diagnosis) and getting treatment, make me a hero? I don't think I will ever understand that one, although it is an honor when someone says it.
• DO YOUR BEST not to blatantly stare at visible wounds, scars, reconstructed boobs, etc. I know I feel like shit when people stare. Honestly, if you are that curious and cannot stop staring at my chest, I will show you. I mean, they are my own design (several surgeries and I am finally happy...thank you Dr. Kanchwala - https://www.pennmedicine.org/providers/profile/suhail-kanchwala). Plus I have beautiful 3D areola tattoos (thank you Mandy Sauler - https://www.pennmedicine.org/cosmetic-services/meet-the-team/meet-the-aestheticians/mandy-sauler). Oh, and they GLOW IN THE DARK. Have you ever heard of that before? I embrace my uniqueness in this area.
• DO NOT assume they are feeling well, based on their overall appearance. The two do not mutually go hand-in-hand. I know that I could look like you but feel like a sack of dog shit OR feel amazing and look like balls. 
• DO NOT EVER compare a mastectomy to a breast augmentation. This happened to me in my consult for my mastectomy. I was alone at that appointment and the nurse was going over my pre and post op instructions. In describing my anticipated pain, she compared my mastectomy to my previous breast augmentation. I responded to her ignorance with class and dignity. I asked again because I needed to know what I would need pre and post op, so that I could be prepared. She, again, referred to my mastectomy as "very similar to my previous breast augmentation" - WRONG!!!
• It took me a little to digest what she had said. I reached out to a few friends (who are nurses) to see how I should deal with my feelings in response to the comparison. My girlfriend, Jessica Gallen - https://crossplasticsurgery.com/our-team/jessica-gallen/ and on IG @jessgallen_rn) and I came up with a list of items that she and some others had purchased for me prior to my mastectomy. I tweaked the list and brought it to my next appointment with Dr. Sataloff. After discussing it with her Office Manager, Marissa, I decided to give it to Doc. I explained what had happened with the nurse, simply because I did not want anyone else to have to deal with the feelings that came along with such a statement. Dr, Sataloff was grateful for the list; they didn't have anything like it (for their patients), so it became a learning experience for everyone. *In hindsight, I do not believe the nurse was trying to be cold. I truly believe she was not a warm person and was trying to ease my potential fears by comparing my procedure to one I had in the past.* 
• Here is the link for blog I wrote for Penn, detailing the items that were most helpful, for me, post-mastectomy: https://www.pennmedicine.org/cancer/about/focus-on-cancer/2018/october/list-of-post-mastectomy-items-needed
• DO YOUR BEST not to cry. I know it is good to let it out but, honestly, when someone is crying because of me, it makes me super uncomfortable. I feel like I have to have to comfort them in their time of need. I NEVER want to make anyone feel sad or upset; seeing my loved ones cry because of something that I am causing, by no fault of my own, just kills me inside.
• DO bring over food (even with a limited appetite, I love having options). When you get any type of serious diagnosis, there are usually people around and food always helps. Appetites can vary during treatment or after surgery, so it is nice when different things are coming to the house. There is a possibility that he/she hasn't eaten for a while or nothing is appealing. Wouldn't it be nice if you helped them to start eating again? My friend, Vinnie, brought me a cheesesteak, cheese fries, and a fountain Cherry Pepsi EVERY DAY. He would even bring donuts in the morning. Christine, my neighbor, threatened to baby bird feed me if I did not eat (she meant it too). Kate, my other neighbor, asked me if I wanted dinner pretty regularly and continues to pick me up cookies at Aldi :) My bestie, Bob, still drops off food several times a week, randomly. For example, last week he brought over Burger King breakfast . I opened the bag and there were 3 orders of tater tots, a bacon, egg, and cheese on a croissant, a sausage, egg, and cheese on a croissant, and a fountain Cherry Coke. What hun? Do you just go up to the window and order random shit? It's hysterical! Justin, my nonsexual life-partner, does errands for me whenever he is not traveling for work. Even my Guidance Counselor from Academy Park High School, Mr. Pergolini (Perk), pops by and usually brings food. I am blessed!
• DO go spend quality time when you are available and your schedules link up. I know that my main goal is to continue to collect good people and make memories. When you receive a diagnosis such as mine, you tend to put more weight on things that matter, like quality time. My door is always open, figuratively speaking. I have a regular cast of characters that frequent the chemo couch (I am on oral chemo twice daily and Dink, my pup,is on chemo as well, hence the name).
• DO ask if they need a ride. This is always a thoughtful gesture but is not for everyone. I know that I am a loner and like to go to most of my appointments by myself. I feel like it is a waste of time to have someone sitting there when I am fine all by myself. Believe it or not, I enjoy my own company. I know that, if I needed or wanted someone to accompany me, I would just have to speak up. 

I have to realize that I am not a burden. 

• DO offer to help with any animals they may have. I am blessed to have Justin (basically Dink's Dad) and Tara & Gary (Dink's Fairy Dog Parents). I have no idea what I would have done without them through all of this.
• DO offer to hook them up with someone if they are single. I know that I would like that; I am not dead and I don't plan on dying any time soon. I have lots of living to do and would love to have someone to do fun, cool shit with (not just sex). Oh, and swiping sucks. I met 2 of my exes by swiping so, no regrets - I just wish it was more organic. 
• DO reach out. The worst thing to do is be silent. I know that for me, when someone doesn't reach out to me, I think they are not interested in being a part of my life and, honestly, that's ok. This rodeo ain't for everyone.
• DO ask me to connect with people who are in a similar situation. I know that, when I was first diagnosed, I did not want to talk to anyone with breast cancer. I did not know what stage I was at yet and I didn't want to talk to people about where they were, for the fear that I would absorb their story as my own. I wanted to keep my mind open to the possibility that I had not caught my cancer early, and that it could be terminal. In hindsight, I am so glad that I had that mindset.

I hope the information above helps just one person. Feel free to share it with a friend, if you think it can help! Like I said, these are merely MY suggestions; I can understand if there are some that do not share my opinion and THAT IS OK. However, if you can think of any others that would fit, please reach out to me (information below) so I can add your suggestion. 

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All love...KEEP LIVING YOUR DASH!

Andy xoxo