Many people who learn about my breast cancer diagnosis last year ask me how my daughter handled the news. She is 13 and she handled it much better than I expected.
When I got my diagnosis Tomas was in Nepal and had sketchy Internet access. I didn’t tell my daughter until Tomas got back and we had been to the breast surgeon and had more information. I actually didn’t want to tell her at all because her life was all kittens and rainbows and I didn’t want to darken it with my ugly cancer juju. Well I had no idea that not telling her up front would backfire. She had been really obsessed lately about heaven and hell and what exactly determined who ended up where. A kid at her school ticked off a huge list of transgressions that would supposedly send you to hell. Based on things he told her, his parents appear to be a bit fanatical because according to them it seems 90% of the population is going to hell. I told her over and over about our family’s beliefs and that God is loving and merciful. One night she was obsessing and being all neurotic about going to hell and I was already feeling stabby because I hadn’t taken my anti-anxiety medicine. I kind of snapped and said I couldn’t deal with her OCD fire and brimstone crap right now. I then told her about the cancer and not at all in the way I planned. Of course I apologized and hugged her and told her it was wrong of me to minimize her worries and that I was just under a lot of stress. Surprisingly though she was very circumspect and actually asked if I was going to die (and if I did die she probably wondered where I was headed). I told her the truth, that according to the surgeon “probably not.” I explained how I was going to have a mastectomy, chemotherapy and radiation and what that entailed and while my outcome is optimistic, there are no guarantees in life. I admitted I was terrified because the cancer could return. I told her we would pray about it and if she ever wanted to talk about it we would, and I wouldn’t keep things from her in the future. It turns out she had an idea something was wrong all along. Kids are more perceptive than we think. Since that day she has been compassionate, helpful and so supportive. She made chemo beanies for me, cooked, did laundry and of late, listens to my endless complaints about my tissue expander pain. I was wrong to keep my cancer from her because she is a part of me and it affects her too. We have always been close and this cancer battle has only strengthened that bond.
Monday I have my 16th fill at The Boob Whisperer and after that I’ll have just two left. The pain now has a burning sensation like my flesh is being peeled from my body. This reconstruction process has been the most painful experience of my life but I will come out stronger for it and hopefully with some nice perky new girls.
This picture speaks to me as a mother on so many levels.
Photo: Attempted Essays
So fill up number 15 was Monday and The Boob Whisperer said 3 more fills. Gah! So 3 more fill ups until my D cups. Okay that was pretty lame. My strength and resolve is wavering you guys, but in for a penny, in for a pound. Or in for boobs, in for D cups. The pain isn’t even diminishing now after a few days like it would after my prior fills. I have such empathy for those of you out there living with chronic pain. After the last fill on October 17, I have to wait 30 days for the implant exchange surgery. Then I will need to wait 6 months until I can get my 3D nipple tattoos.
I want to confess something. I’m all about talking about breast cancer and telling my story with jokes and sarcasm. I follow breast cancer social media sites like My BC Team and Living Beyond Breast Cancer. I like learning about other women’s experiences and knowing I’m not alone in this. But if I’m being honest, when I come across stories about Stage IV and metastasis or “mets,” I tend to look away. Like closing your eyes with your hands over your ears going “lalalalalalala.” I know I do this because there is a chance that could be me some day and even though I’ve faced many scary things throughout this journey, I haven’t had to do it with a Stage IV or mets diagnosis. I came across the story of a young woman with mets, who still had her breasts but was not having them removed because the cancer had already spread to several other places on her body. I stopped reading and tried to scrub all thoughts about that from my brain. But these women deserve my attention and support, so no more “see no evil, hear no evil” looking away for me. I will read their stories and pray for them and their families. Every person’s journey is worthy of my support and compassion. Whether you have Stage I or Stage IV, lumpectomy or mastectomy, chemo, radiation or no treatment, we shouldn’t measure experiences by degrees because for each woman the fear is real and not necessarily mitigated by a Stage number or surgical procedure.
Something else has been on my mind. I’ve noticed that when some people ask me how my treatment is going, or if I’m “done” with treatment, when I start talking about my expanders and my lat flap surgery, some people lose eye contact and say “oh but you’re done with your treatment, though, right?” I guess for them, it’s okay to talk about your knee or torn meniscus surgery but boob surgery is taboo. Guess what people? They’re JUST boobs. It shouldn’t be so uncomfortable to talk about them. But I guess we can’t even look at breastfeeding moms’ boobs so why should we be able to discuss reconstruction of boobs? (And I’m not advocating naked breasts all hanging out with a suckling babe attached posted on Instagram, but if a woman is discreetly feeding her child, then you offended dipshits need to get over it.) But I digress. Yes chemo and radiation are over but I am still going through the exhausting and painful process of reconstruction. Shit can still go wrong. Know this – if you ask me how my “treatment” is going, or how I’m feeling I will probably tell you and it likely won’t be a brief “fine thanks.” It will be the unvarnished truth.
Monday was fill up 14 at The Boob Whisperer so I am definitely in the home stretch you guys, which is good because Jeez Louise this is SO painful. I’m supposed to bring a bra next week so he can see how things fit #Dcup
Now I’m going to get up on my soap box because this ACA health insurance situation has gone totally fubar on me and others like me. According to my insurance broker, there may be only be two companies next year offering individual health plans in OR out of the marketplace in Maricopa County (the largest county in AZ and the fourth most populous county in the U.S. and also where I happen to live), and those two companies will have very limited networks, and 60% premium increases. They also may ultimately decline to offer anything. This means people like me who do not have insurance at work will not be covered. I NEED insurance. I am still going to need to see my oncologist and plastic surgeon. I’m going to need imaging tests for the foreseeable future. I had cancer last year for fuck’s sakes. This goes beyond politics. I am a real person who works hard, pays taxes and who may be without coverage next year because I may have NO access to health insurance. My experience is real, not political spin. There are many people like me who have gotten individual coverage after the ACA law went into effect and could be screwed, like my friend who’s a single stay at home grandma, people who are self employed, people who are retired but not yet eligible for Medicare, part time workers and independent contractors. We could be up the proverbial creek with the proverbial paddle up the ass. Yes I could work full time and get coverage but I like working part time and I should be able to buy my own health insurance like I have been doing for the last four years. Especially with my recent cancer journey, I’ve found working part time brings me less stress and more time with my family. Can I please get more news coverage of this shitstorm and how it can be fixed before I see any more crybaby anthem protesting athletes or Target shoppers with their knickers in a wad about who can or can’t use the ladies’ room?
I was worried about my doctors being in network next year, now I’m worried about even having a network. Just what a cancer survivor needs-more stress about her healthcare. This legislation was supposed to bring more people into the insurance system, not kick existing people out. Who do I see about that?
A week and a half ago I found a pea sized lump just under one of my scars on my left foob. Finally I was able to have an ultrasound done and its just an oil cyst/fat necrosis. I know, EW. But for the last 10 days I’ve been having all manner of horror-show deja vu and panic attacks. And I think the radiologist today was even the same one who did that fateful ultrasound last April. Today I actually managed to stave off my freak out until I was actually lying on the table and she put the probe on me. Then all hell broke loose in my brain. After a few minutes she said it was an oil cyst. But let me tell you, in the span of those few minutes prior, I had the following thoughts:
1. My eyeball is sore when I move it, oh my God is the cancer back and in my brain?
2. Can they even biopsy this thing with my tissue expanders in?
3. If it’s cancer does that mean removal of my expanders? Am I done with boobs altogether, and will it even matter?
4. Will I have to have another PET scan? Those are totally claustrophobic.
5. I’ve been having bowel issues and I haven’t had my colonoscopy yet-is it in my colon?
6. Would I have to do chemo again? I still have my hats.
7. How can I (and my family) go through this again?
8. If I die Tomas better plan an awesome funeral.
9. If I’m going to die I need to start making recorded video messages for Lili to view as she gets older, but can I even do that without blubbering?
10. Wow I’m 37 lbs. lighter than I was last year according to their records.
11. Wow I still weigh a lot.
12. Wow I better pick out a photo I approve of for him to blow up (and get airbrushed) and display at my funeral.
13. Wow this is getting way too ghoulish.
Yes I am being a drama queen but that’s how my mind works, one thought leads to another which leads to another, etc. Sometimes I wish my brain worked like that episode of SpongeBob where you could see inside his head and it was all rainbows, his pet snail Gary and crabby patties.
The only way to cope with this stuff is to take a deep breath and realize that whatever happens I will handle it and I will get through it.
P.S. No fill up at The Boob Whisperer this week due to the holiday which may be a good thing because they are still SORE. My right coconut sticks out on the side and is totally bruising my right arm.