I just reviewed my benefits renewal information from my employer. (I’m late opening the package but I knew I wasn’t going to change anything on my package so there was no urgency).
Right on the first page is a notification box that refers to “The Women’s Health and Cancer Rights Act of 1998”…which goes on to say that after having a mastectomy my health plan has to cover certain post-mastectomy medical procedures.
By law a breast cancer patient may elect and must be covered for:
• Reconstruction of the breast on which the mastectomy was performed;
• Surgery and reconstruction of the other breast to produce a normal cosmetic appearance;
• Prostheses and
• Physical complications for all stages of mastectomy, including lymphedemas.
Well, right away I’m kicking myself for not opening this envelope a month ago. Would have saved some worries and some anxiety. (Laughs) Although I know (now) that my medical procedures are covered by my health insurance, my worry about my position in my office and with my company remains the same.
I was just briefly chatting on twitter with one of my pink ribbon sisters (@silknsaber) and I was complaining that I was really feeling exhausted with all the medical appointments and pills and bills. I am TIRED! My sister was right there with just the right thing to say and then she hit me with a bombshell. She has had 3 surgeries in 6 months! Yikes.
Can you imagine? She said that she just told her doctor that she’s had enough. She didn’t want to go through anything else for a little while. She said to me that she understood what I was feeling because she too just had reached a point where she did not want to be touched anymore.
Two of the procedures that she’s had done, are definitely in my future – nipple reconstruction. But I will also have a surgery on my remaining breast to make it look more like the reconstructed breast – a little lifting, a little reduction. And when I was thinking about all that she had been going through, it hit me. That’s going to be me next year.
Everyone around me is in a good celebratory mood about the ending of my chemo. My doctors, my colleagues at work, my friends… but not me. To many people, the end of my chemo is the end of the road for my breast cancer treatment. But the honest truth is I have only started on this road. This is not a sprint… it is probably the longest marathon in the world. In fact, I can’t see an end in sight. That scares and depresses me.
If it is my right as a human being and a woman with breast cancer – to do whatever it takes medically to bring myself back to “wholeness” – can someone explain to me HOW it is supposed to happen? I am grateful that the law exists that says that my breasts are important and how they look is important and that my illness should not take that important thing from me. However, the reality is that every surgery means a few things – it means money (either my own or my insurance company’s), it means time (time for the procedure and time to recuperate) and it means adjustment.
Being single with breast cancer not only sucks, it puts you in a very precarious position
As I prepare for the next stage on this journey, I think often about the sister I met online who delayed her reconstruction for 8 years. She too was single like me and I think of her because I can understand her desire to wait so long to take care of this “vanity”. I keep telling myself over and over that I am not crazy for wanting to have a second breast. I am not vain for wanting to look balanced like a normal grown woman. I am not horrible because I’m sick of wearing this “shoulder pad” (that’s what I call my lightweight prosthesis) and sick of worrying whether it’s peeking out through my clothes. I know it’s my right to be restored but I am really wondering how I (or anyone else) can be expected to be a part of any office environment if you’re out frequently taking care of medical issues? How do I balance my illness with my desire to do a good job for my employer?
I carry this guilt with me everyday that I am costing people too much – too much money, too much time, just too much something. Everyday, I look at my colleagues and I wonder what they really think about my schedule. I go to the doctor just about every week, sometimes multiple times in a week and I wonder whether or not they look at me and think I’m slacking or I’m faking. In my heart, I don’t think they feel that way about me (well maybe someone does but its not the majority) but it is difficult convincing my head that it is not true. It’s a hassle feeling this way.
I’ll be out of the office for another 6 weeks this year. I will be out of the office probably for a couple of months next year. And it’s likely that I will disproportionately be absent from work for the rest of my working years. I just want to know who gave this disease the right to take so much from me – for so long. And I really want to know how do I counteract what it is taking away from me?
My friend Sophia wrote a wonderful article for Essence magazine's website (Essence.com) (Sophia's article on Essence.com) about being there for your single sisters who have breast cancer. There are a lot of us who do not have husbands or children but who are fighting this disease with a different sort of support system. I would be crazy (I mean, nut-house crazy for real) if it were not for the prayers of my family and friends, the friends I’ve made on twitter and facebook and the opportunities to connect with other women across the country who are dealing with the same issues at the same time. But as it comes to dealing with my job and the fact that I have to have a job, that I have to have insurance and that if I drop the ball in any way, I’m going to suffer greatly – I become very overwhelmed and afraid.
I do not know how to do this. But somehow, it has to be done.
