Our Plan of Action (for now)

We are 2 years deep into living with a cancer diagnosis. Everyday is a "new beginning" in adjusting to my "new" life after cancer.

Farrah Fawcett hit me harder than I expected. Her courage moved me to remember that through awareness, we may get a step closer to universally beating this thing. Hence the blog update on my own personal journey with cancer. Warning: Too much information disclaimer for this entry! : )

I sort of have been avoiding posting about what is going on in my life cancer-post-cancer-related. Anxiety, denial. Call it what you wish, but this "new" me hates to get too comfortable in what my "Plan of Action" is since a curve ball gets thrown our way when I least expect it.

Let's get this party started:

My Foobs
I had my exchange surgery last June, 2008 around Blake's (Lyla's) first birthday. This was my third reconstructive surgery (mastectomy, capsulectomy and exchange). The exchange is when the doc's took my expanders (little balloons) out and put in my silicone implants. The protocol is to wait at least three months for the implants to settle before evaluating what is next. Typically, the exchange is the last step in reconstruction. If you know me at all, you know I am atypical ... yes, that is a compliment.

So, before the three months ran, we realized the left side (cancer side) dropped and needed to be revised aka another surgery. It literally dropped. Down. Down towards my belly button. I mean, not literally AT my belly button, but headed south for sure. Doc says one of two things happened, which we will never be able to ascertain, so don't fret ... just correct! Either the stitching into my chest wasn't sturdy enough and simply gave way (his fault) or I overextended myself with Blake or running and caused the stitching to break. Either way, it needed to be corrected. In January, 2009, I went back to Stanford and took a few weeks off of work to recovery from a left side implant replacement (new implant) and revision of the mammary fold. Reconstruction surgery number four.

Six months later and I just returned from Cancun with some girlfriends! I love my FOOBS! But, we all know how my luck is ... so I thought! My right side is hard. Literally, my implant is hard on the right only. Implant on the left is squishy, like a natural breast. However on the right it is as hard, hard, hard. The implant is contracting meaning the scar tissue from the previous surgeries is growing around the implant (sort of like a spider web). The result is that the implant is taking on a life of its own. The implant, within time, will deform. For now, I love it. I mean, I notice that the cleavage on each side is different with the right side being much more enhanced, but it is bearable. Eventually, the scar tissue will grow around the implant so much that is will squeeze the implant into the shape of a cone (rather than being round; think Madonna). Does it hurt? Not necessarily, but when I run or lift something heavy, like a box, I feel the muscle pull which hurts for a brief moment(s). It passes. My range of motion on the right side is a little limited compared to the left side. For instance, while working out, it is harder (so I avoid) to raise my right arm above my head to do tricep lifts. (This is why I have fatty arms!) : ) More importantly, will the implant pop and leak? Yes, it can and may eventually do just that. My doctor reminded me to see him if it begins to leak. Is he serious? Does this mean surgery number five?

So I thought. Rigo and I went to Stanford last week for my three month (ever so important marker in the reconstruction world) with my plastic surgeon. "How do you feel Jamie?" "I feel great." "Any problems" he asks. "Well, no real problems. I mean, I love how my foobs look, but the right is tight and feels a little strange at times" I report as I pull my calendar out to schedule the next surgery. Mentally, it is tough to prepare for these appointments knowing you like how you look (while not perfect, MUCH better than I would have ever dreamt of for having my boobs lopped off and replaced with foobs) but will have to have yet another surgery with no guarantee if the result will look as good as where I am now ... it may be just as good, may be better, or with my luck, may turn our WORSE! Yikes. My game face is on. To my surprise, doc says he agrees that my right implant is contracting, but let's wait-and-see for now. We don't have to rush into surgery. If I notice a leak, then we need to rush into surgery. If it becomes so deformed I stop wearing my bikini, we need to rush into surgery (and throw in a tummy tuck while you're at it ... that will help with the bikini). If my foob begins to hurt with such regularity that it interrupts my daily living, we need to rush into surgery. Today, no surgery. Go ahead and put that calendar away.

Last week's doctor visit allowed me to mentally take some ownership with my foobs. I have been quite hesitant to "own" my foobs because with this "new" me realizes my entire world can be turned upside down with any doctor's appointment. Not this one. I was given permission to embrace 'em foobies!

At this appointment, we had a consultation on nipple reconstruction. Since October, 2007, I have not had nipples. Today, my life feels complete. Rigo and I are not certain I need to undergo nipple reconstruction. After all, I have no feeling in my foobs anyhow. The nipple procedure is not fool proof. In fact, every set of nipples fails (invert). It is just a matter of time. For some women, the nipples fail within 2-5 years. Others, it could be months or weeks. Do I really want to go down this road? A fellow BC sister I know from "The Room" showed me her new nips this week. Her insights resonated with me. She said she doesn't regret the nips at all and feels even more complete with each glance in the mirror. Her nip looked great. So, while not certain where I stand, I am leaning towards doing the procedure. I mean, I've come this far on the journey, why not take that final stretch of reconstruction head on.

The nip recon procedure will be at Stanford Medical Center as an out-patient procedure. I will be put to sleep and it takes about an hour, but I get to go home that night (a first in the many surgeries). I can and would do it now, but I can't go swimming for four weeks following the surgery. Since it is suppose to be 108 degrees in Fresno tomorrow, I will put the nips off until November. After all, it's been almost two years without nips ... nips, swimming, nips, swimming ... SWIMMING! : )

Conclusion: My foobs rock!

Fringe Benefit of BRCA 1
So, on the other front of life after breast cancer is what to do about my high risk of ovarian cancer. I lost my favorite aunt, Tia Josie, to ovarian cancer at the tender age of 46 years young. My doctors all agree that since I am triple negative (estrogen negative), it is safe for me to try to get pregnant and have more children. In September, Rigo and I went to Stanford Reproductive Clinic and learned that my ovaries have been pretty damaged from chemotherapy. I would have a very difficult time trying to get pregnant. We are not trying to get pregnant. However, I have strict orders from my doctor that I cannot be on birth control post-breast cancer. Point being, I am not prepared to go down that road. Rigo as well. We talked and talked and talked this matter over for many months, if not for the last two years. Our "plan" was to have two children. We still want two children. I loved being pregnant. But I hated having cancer. I know it is "safe" to get pregnant, but "what if?" I am so very blessed to have the miracle of life in little Blaker. I am confident I do not want to push my luck and ever wonder if I did all I could in my control to keep the beast away. Even if we were okay with trying to get pregnant, I do not think I can mentally and emotionally handle the challenges of "trying" to get pregnant month in and month out. After all, an expert told me my chances are slim. And quite frankly, I have days I can barely handle adjusting to the "new" me after cancer.

With all this said, Rigo and I are confident in our decision for me to have a total hysterectomy and slapigino oophorectomy August 14th. I will have my uterus, fallopian tubes, cervix and ovaries removed which will push me into FULL blown menopause before I hit 30 (yikes). The procedure will not be determined until operation day. Essentially, I will either have it laproscopically or surgically depending on the condition of my uterus. Ideally, I will do it laproscopically where I will still be put to sleep at the hospital but it will not require any overnight stay and my recovery is two weeks. On the other hand, if I have a lot of scar tissue in my uterus, I will have to have a surgery which will require a 3-night hospital stay and SIX week recovery.

Conclusion: I feel good about our decision to move forward. We look forward to adopting a child to join our family in a few years. I hate not knowing what my recovery time will be, but I am so very grateful I have this opportunity to take a little control over the beast.

The Beast
So far, no news is good news. In case you are wondering, I have follow-up appointments with my oncologist every twelve weeks. My blood is tested for tumor markers (protein levels in my blood which may reflect tumor activity) and I have a clinical exam. As of today, my tumor markers are fine. The blood test is not very effective in detecting recurrences, but it is the best we have at this point. Every six months I get a chest x-ray (not so very high-tech) to detect if cancer has spread to my lungs, which for breast cancer, this is one of the first places it may spread. As of today, my lungs look great.

Conclusion: As of today, I have no evidence of disease.

As of today, life is good.