Treatment week rolled around once again, starting with a visit to Dr. Kays for another expansion. I opted for another double-fill, assured by Dr. Kays that he'd stop if it started to hurt. About 3/4 through the second syringe, I'd had enough and told him so. He didn't stop, instead assuring me that he was almost done anyway. To me, that violates the trust. Then he starts telling us about the "Breast" conference he recently attended...
If you've been reading earlier posts in this blog, you know that my family and I have agonized over a certain decision in my care plan: whether to have radiation before or after the 2nd stage of my breast reconstruction. Dr. Kays has been adamantly advocating for reconstruction before radiation since we've known that radiation would be part of my treatment plan. I've spent a lot of time and mental energy on the choice, and just 3 weeks ago came to the decision that I would move forward with reconstruction before radiation. I was even a little excited to share the news with Dr. Kays at my appointment. And then came the Flip Flop.
Dr. Kays was excited to share the hot topic from the conference, a procedure called Fat Grafting. Not entirely new to the breast reconstruction scene, the procedure uses fat, obtained through liposuction of the stomach, buttocks and thighs, to fill in and fill out the reconstructed breast. Most of the research I've found (breastcancer.org, Johns Hopkins and NIH) refers to fat grafting to reconstruct the breast instead of implants, flaps, and other techniques, or for it to fix less-than-smooth results. Surgeons at the conference were focusing on their experience using Fat Grafting as a supplement to implants, which is why Dr. Kays bothered to share this information with us. The problem is that radiating a fat graft renders it useless. The radiation will destroy the transferred cells. If I'm to benefit from the latest and greatest in breast reconstruction, I'll have to wait 5-6 months after radiation to have the 2nd stage of my breast reconstruction. That puts the reconstruction surgery on the calendar in early December 2014. The longer wait allows the skin in the radiated area to heal, hopefully resulting in smaller chances for infection and failure of the reconstruction, which, if you recall, is the primary reason we were advised to get reconstruction before radiation in the first place. And these expanders hurt! I'm not thrilled at the idea of having them in for nearly a year! So now, I'm back to square one with that decision: radiation or reconstruction first? Fat Grafting or not? I want the safest, best results. I'm excited about the latest and greatest. I'm all for removing fat from my stomach, thighs and butt (ok, maybe not all for it, there are added risks when liposuction is added to the process). But is it worth the risk? Should I reconsider? I left the appointment feeling very irritated. Not only did my doctor not stop after I expressed discomfort, he's also completely changed his mind about the course of treatment I should take, because of what he learned at one conference and, as we discussed it, he seemed just as determined to see me go for the Fat Grafting option as he'd been for the reconstruction before radiation option earlier on.
The upper respiratory infection that I had after the 2nd chemo infusion was mostly resolved by Wednesday morning, in time for my 3rd infusion. My blood work was right in line with expectations. 3rd infusion went on without a hitch. I managed to bleed through my port afterward, soaking the dressing and getting blood on my shirt, but that was my own snafu. I leaned over and picked up a heavy bag immediately after I was disconnected. Apparently that wasn't smart idea. The side effects started almost immediately and have been worse this time. I was tired right away. In fact, I came home and went right to bed, getting up for about 15 minutes to eat dinner, but not staying through the meal. I went into town Thursday to get my shot, met a friend for coffee (which always lifts my spirits) and stopped by the bank. I was utterly exhausted by the time I got home. I crawled into bed and pretty much stayed there for the next 7 days. I slept so much that most of last week is a blur. I certainly got my $8 worth of Netflix this month! Pains in my joints, particularly my hips, knees and feet were a constant for a few of those days, and I'm still tired and dealing with the joint pains as I write this blog entry (day 10). At least twice, the pain caught me off guard while walking and knocked me to the ground (literally). That nasty cough came back on day 6. Day 8, I had to have a Chest X-ray, day 9 a CT Scan. Dr. Kotz was concerned the cough was a rarer side effect that causes inflammation in the lungs, rather than an infection. All the tests came back clear and I was given a really strong antibiotic called Avelox. Speaking of rare side effects, I had a new addition to my repertoire: changes to skin. I'm being euphemistic to spare you. In the shower, I discovered that the skin in a particularly sensitive area has started to peel and thin. Normally, doctors can prescribe a cream that aids in healing and comfort, but that cream has estrogen, so it's not an option for me. I was assured that it would heal eventually. Really? Thanks. That's great, eventually.
I've been down in the dumps a lot this time. I'm struggling to cope with the loss of physical beauty, body parts, self-image, identity. Cancer and the treatment of cancer has impacted my physical relationship with the world, but also my emotional and intellectual relationships with it. I'm having trouble articulating thoughts. I'm forgetting things all the time. I'm behind on work. I can't hug tight, sleep right. Everything is slower. I hobble when I walk some days and something always hurts. I've never known extreme tired the way I've known it lately. And it's getting really hard to imagine feeling better, feeling normal again. I have no idea what normal will look like once this is over and it's frustrating to not really know when this will be over. I feel weak, wussy. My confidence is shaken, my sense of self rattled. I look around and see the beauty that is my support system and I'm reminded that my support team and my faith carries me through when I can't do it on my own.
I've read a lot of articles, testimonials, blogs, etc., that discuss the language of cancer, the idea of the warrior, the fighter, the soldier, the team. We try so hard to articulate the experience or to try to understand in a way that is familiar. We search for the right way to name our identities and to describe the experience of cancer but we are rhetorically ill-equipped. So what? Why do the words matter? Right now, I think the words matter because a person with cancer (whether living with it, dying from it, surviving, fighting, soldiering on...) wants to hold on to their identity, their normalcy, despite cancer's grasp on all they've known. I've heard it said, "Cancer is a gift." In fact, I'm pretty sure I've uttered those words myself (insert retrospective YUCK! here). But it's not. Cancer is a thief. Cancer is an alien. Cancer is certainly not a gift. If it were, I'd give it back, or throw it out. I do think that our desire to grapple with the language of cancer is evidence of a deeper need, one I explore regularly and have yet to understand. I do think cancer can be a catalyst, and in that, there is hope. I will continue to grapple with my identity and my life as I move forward with my treatment. I am blessed and inspired by the support that surrounds me. And I am moved to do something to recognize and help those that aren't as well-supported as I am.
Through this blog, I've found a voice. My goal has always been to be honest, open and informative, to help others understand. According to my blog stats, readers have visited my blog site more than 6300 times, including a small international audience. I'm humbled and inspired. And I'd like to ask all of you to reach out and help others with cancer, too. There are all sorts of ways to this, but I have some in mind I'd like to share.
On Saturday, March 8, an organization in my local area is having a fundraiser. Women of Hope NC has joined up with Old River Farms to host Hiking for Hope, a day of hiking, hay rides, music, storytelling and fun. I'll be there. Will you? I'm so inspired by this organization and all they've done to help women in my local community. I'll be there even if I don't feel well. Please check out their website at http://womenofhopenc.org/
On April 26, it's Shave for Sean time! Remember the sweet boy I mentioned who taught me all about ports and chemo, who has inspired me to stay strong? This event honors him. You may have heard about the St. Baldrick's Foundation. They are a volunteer-driven charity that funds more in childhood cancer research grants than any organization except the U.S. government. You can participate or donate here: http://www.stbaldricks.org/events/shaveforsean2
Also, Relay for Life events are gearing up all over the country. Consider participating in the relay, supporting someone who is, or donating to the American Cancer Society.
