Happy Spring-it’s been 6 weeks since my last blog- this is a long one, and I have another one coming soon, so if you want to catch up, get comfy!
Post-surgery I just retreated. It was pretty overwhelming, especially with my dad and mom in law needing care, and not enough hands to go around. I was glad surgery was over, and only 8 lymph nodes removed, and only 3 of them with trace amounts of cancer. It felt like the hardest part was over, and it was time to move forward, regain some of my life back…and get boobs!
Reconstruction has been both an amazing process to watch, and pretty fun, to be honest. I know that’s not the case for many women, so I’m thankful for that. Skin and nipple-sparing surgery means I left my double MX with about 150 CCs of fluid in each implant, ad I actually had some boobs…The first time I was unwrapped, 1 week post-surgery, I was too scared to look…Kev had to say “Wow, Dee it’s OK, you look like yourself, just a smaller size, open your eyes!”. That was a huge relief, on different levels. (He’s not afraid to look at me! I don’t have a huge scar! Maybe this will all turn out alright after all!)
Since then, reconstruction consisted of quick visits up to Plastics, at UCSF. I happen to have The Man, and my plastic surgeon’s a bit shy, a sweet guy with a very gentle touch, who seemed to look at my boobs more than my face. In this case, totally justified and welcomed!
Right now, I have expenders in, which can be filled with additional saline to stretch my skin and increase my bust;-). First time, a long needle was inserted right over my nipple into the bag and 30CCs added, which I didn’t feel ( I was still on good drugs 1 week after MX). Second time, about three weeks post-surgery, I got my drains removed ( a very odd moment, like a snake slithering out of my armpit) and another 100CCs added to each side- this time, I FELT it. Like a small dog asleep on my chest all the time, and I had to push the puppy with every breath. (How much do those teacup chihuahuas weigh? I bet about 200 CCs!) This feeling lasted about 10 days…so I rescheduled my next expansion appt for the following week, to give me a little breathing room, pun intended. I was feeling better at this point, my scabs and bruises over my nipples were almost healed, and I didn’t need to wear a bandage/bra anymore. I slathered Sweet Herb medicinal’s Healing salve on multiple times a day, and i know that helped with the minimal scarring…(That and my World Class Surgeons, anyway;-).
So the next expansion appt was with The Man himself- even though these appts last about 8 minutes and can clearly be taken care of by the quick-fingeed nurse instead of the busy and probably expensive Man. I asked him if he usually did expansions, and he said “Well, no, it’s been a while, but your nurse happens to be off today..I do know how to do it though, don’t worry!” OMG. I reassured him that I figured he was capable, I just didn’t want to take his valuable time… and wow. What a difference! He offered me a numbing shot (that was a first) and with his light fingers I didn’t even feel that, much less another 100 CCs. The expansion went in so slow and easy I didn’t really have the same intensity as before. ( No teacup puppies this time, more like a perched parakeet, though I still felt pressure for another two weeks).
The fourth expansion, by the nurse (and a numbing shot, by request;-), brought me to 565CCs. I think Kev was a little disappointed, since we were expecting another 100CCs…after all, a great rack was our shared Booby Prize for getting through f’ing cancer and this last year from hell. The nurse said i had hit my maximum though…and I’m OK with it.
It’s been fun, actually- I can’t lie. I’ve been able to toss my bra and go commando- and I feel so much more comfortable, and my clothes look better on me. Those bra-burning gals in the 70’s had more than politics and equality on their agenda- it’s SO much more comfortable! Finally, some good comes out of all this… I start dreaming about new bikini tops and strapless dresses… We make quality time with old friends, and deepen ties with newer ones, and we take Spring Break off and soak in some staycation fun.
Then we get UCSF’s recommendation for radiation.
One of the many good reasons I opted for a double MX was the lowered potential for RT…with a lumpectomy, it’s a guarantee. We waited 3 weeks for the UCSF tumor board to confer over my pathology results. I gave it up to my brilliant team, but I was praying HARD for different news. Even though I trust them, I wanted to make sure this wasn’t a “can’t hurt, might as well” type of recommendation…I was still pushing back until they informed me there was a 35% chance of reoccurrence without RT, and only 5% with radiation.
We get a referral for the best RT doc in Santa Cruz…since radiation therapy is EVERY. WEEKDAY. FOR. 35. DAYS. it’s not feasible to do my treatment at UCSF…though my body mapping appointment with Dr. RT sure made me want to make that happen instead. I’ve just gotten used to the way I’m treated at UCSF, and I don’t just mean medically.
Let me back it up a second…One of my main concerns about radiation is my left breast will be the one glowing in the dark- and not only do I have heart disease on both sides of my family, the last chemo I received, A/C, is also very hard on my heart. in fact, my heart rate finally JUST came down to normal from the 130’s tempo I was keeping since January. I didn’t want anything else to compromise my heart…and if the lymph nodes in the middle of my chest are irradiated, there’s a high chance of a ‘heart incident’ within 10 years.
WITHIN 10 YEARS.
My mom never fully recovered from her open-heart surgery, and it was a horrible, scary experience for our whole family. I’m 46, and WAY too fricking young to be worried about a heart attack in my mid-50’s. Damn, I want be checking bucket-list items off in my 50’s, not kicking the bucket!
But I trust my team at UCSF, and those numbers don’t lie. Since my tumor was at the 12 o’clock position, directly over my nipple, there was a discussion about where the radiation would be needed- at the site of the lymph node removal, and the tumor site, obviously, but…do we attack the inner mammary nodes over my heart?
Well, my amazing World Class Surgeon and Oncologist thought not, but also said they trusted my SC RT doc…and it would be her show, not theirs.
Kev comes with me to the first RT prep appt… and my thorough, well-researched sweetie asked all the right questions. I had done my reading and was well prepared for the process itself, but was freaking out about the possibility of being pushed into RT that would give me further heart complications “because that’s how we do it here’. I needed my bulldog!
We left the appt feeling relieved and heard, and we both liked our RT doc very much, and trusted her, even more so after we agree I should most likely only get RT where it’s needed, and it’s probably not needed over my heart. Then I went in alone, the following week, for a ‘mapping’ appt, which I thought would be no big deal, and one I could handle without a bulldog or a honeybee. I am usually a very independent gal, and I was enjoying being self-sufficient and giving Kev a little precious time to himself…(bet you know where this is going, huh?)
So I’m lying in a cold slab of a table with my shirt off, getting tattooed. (Oh yeah, one of the other reasons I was hoping to avoid radiation... they’re just three small blue dots on my breast and sternum, but they can be seen when I’m in a tank top, and it’s just another insult to the injury of my boobs, ya know?) The techs were all very nice, of course, but I was in a vulnerable place all of a sudden, especially when I was confirming that I was NOT getting the lymph nodes over my heart irradiated, and they answered that they map the whole area, and then the Doc decides. OK, fair enough. She’s already seen enough data to make her decision, the same data UCSF shared from the PET CT, 4 fancy MRI’s and CAT scan I’ve already had during this adventure, so I figure this new ‘mapping’ (with very rudimentary equipment) won’t change our previous understanding made in her office.
Then Dr RT stops in…I ask her again, about radiating the lymph nodes over my heart…I’m nervous, dammit, and I already feel pissed about the need for RT at all, without the added risk of treatment. She just looks down at me, half naked on the table, and says, “I haven’t decided yet”.
So in the seven months I’ve been treated at UCSF, not ONE person- doctor, surgeon, nurse, desk jockey – NO-ONE has spoken to me as if I were not the one making the ultimate decisions about my care. They were just giving me all the information available, and then trusted and supported ME in my decision-making, because I am the ultimate healer, not them.
In four words, my new doc had just smashed the confidence and respect I had been building for her and for radiation treatment in Santa Cruz. All I could say was “Well, I want to be a part of making that decision, before radiation starts!” and then I had to shut up, or start crying.
So instead of coming with me, and probably fixing the situation right there, Kev gets an emotional phone call…and we start throwing around crazy ideas to manage daily radiation treatments in san Francisco instead….
About two hours later, my Santa Cruz RT doc calls me, and says, “WE only need radiation treatment on the tumor site and lymph nodes, so your breast but not over your heart.”
I’m sure she could see my shock at the appt and heard my immediate defensive self-advocacy. I know from all my years as a doula, it’s really hard to be the one advocating for yourself in the midst of what you’re going through physically and emotionally- another way labor and cancer treatment relate. Of course birthing mamas and cancer warriors can and DO advocate for themselves during the process…but it sure is a blessing when we know we have a honeybee and a bulldog to take care of us so we don’t have to do so.
Had my second day of radiation today, 7:15 am every weekday through May 18th.
So far, so good…
Thanks for hanging in there, lovely readers. There’s more to the story, and some more challenges to deal with…sigh. I’ve got a lot of emotions going, and it will take another blog post to unleash, ahh, ahem sorry, unfold those feelings into a coherent post. It’s been a long one already though so…