This particular post has been bouncing around in my head since the day after my first treatment. On that day, I had to go in for my Neulasta shot. When I arrived at the appointment I was handed a sheet of paper and was asked to complete it. At the top of the sheet, there was a title which read "Distress Survey". I was intrigued. The nurse said everyone is asked to complete one and if your score a certain number they are required to refer you to someone. Again...intrigued. I started to look through the questions and my heart dropped. Not because of anything related to my situation, but because of my empathy gift/curse. As I read through, the reality hit that the level of devastation this disease can bring on for someone can far exceed the physical issues. The questions basically asked if, in the past week, you had experienced distress related to any of the following topics (I can't remember them all so this list is far from complete - it was a full page with two columns).
- Money
- Food
- Housing
- Rent
- Childcare
- Work
- Transportation
Immediately, I thank Heaven for my many blessings, not the least of which is my stellar support system. That not only includes my husband, both sets of parents, siblings, extended family, our daycare family, my AND Bobby's work family, and so many more. I don't have to worry about childcare, the house (when I'm busy sleeping), errands, food for the family (when I'm busy sleeping). That also means that all of those things do not fall on Bobby to handle alone. It's tough enough on him as it is, I can't imagine what it would be like if he was left to carry it all on his own. So now my thoughts go to someone who is diagnosed - maybe a single parent who works part time with no benefits, no time off, no family around. Holy cow! Just thinking about someone in that situation or anyone in between just breaks my heart. The diagnosis ALONE is life changing but what if you had to worry about all of that PLUS the astronomical expenses related to treatment, the care of your family.... Then you move on to things that make the journey easier for some women - wigs, prostheses, etc. That stuff is not cheap! Some insurance will pay for wigs, but not all. Good wigs are close to $300 each and the average life, per my consultant, is 6 months if they are worn everyday. I had no idea!! You have to wash them regularly but you can't use regular shampoo, so you have to buy special product just for the wig. That's more $$. When I had my preliminary fitting for the prosthetic inserts, the consultant told me you can get fabric forms, which are best in certain applications like swimming and they are a bit lighter, and the silicone, which are more "natural feeling". Insurance will pay for one but not both. She said I could by one set and let insurance get the others. So we proceeded to test them out and I finally asked for the price on the fabric forms (I would let insurance pay for the silicone). She said the fabric forms were $275...I thought, "A little steep but not crazy." But then she finished her sentence with "a piece". Yes friends, fabric replacement boobs are $275 EACH. Clearly, I'm not caught up in appearances, I haven't been back for my "after the swelling goes down" fitting...I walk around flat chested and don't think a thing about it. I know not every woman feels the same way but I'm flat and proud. Badge of honor type thing...who knows what the heck it is but it's not a big deal to me. That said, it saddens me that a woman with limited resources, dealing with financial and/or any of the issues listed above, might benefit by lifting her self esteem with a wig and prosthetics but, without some sort of support, the would be out of her reach. THAT BREAKS MY HEART!! There was a group in Lexington that helped women in need obtain wigs but my consultant at Grogan's said that she thought that they were no longer in existence because they usually have a benefit event every year and she hadn't heard anything from them in a while. So, I spent several days wondering how to help. I'm going to research and see what sort of programs, charities and groups exist in this area. If I don't find it, I want to build it! I'm not even sure where to start but if there's a need, someone needs to help.
So there it is - one sheet of paper with a bunch of questions on it, sent me into a tailspin. Oh, and if you're wondering, I was only able to mark one thing on the survey. I marked that I had experienced "Worry" in the past week. Why, you ask? I noted that I experienced worry while waiting the week between my scans and the results. I'd say that means my support system is, in fact, STELLAR.
Love to all,
Andee