this whole cancer business can be exhausting. exhausting to think about this parasite that’s living on my otherwise healthy body, to juggle doctors and conflicting information, to know i’m no longer fully in control of my life, to have my fingers obsessively touch the lump, and to focus on the power of positivity. but here we are with another week down and a truckload full of information and many truckloads of continued support from you. please settle in with a cup of tea for this post. it’s a long one.
the happy news i can share with you is that two oncologists both said their goal for me is a cure, we have found it fairly early, and my prognosis is good. let me type it again – my prognosis is good. we broke down at this news and are so so so thankful to be in this position. whatever you all are doing is working, so please keep it up.
the hardest thing though is that i still have to face a mastectomy, six months of weekly and then bi-weekly chemo, twelve months of hormone infusions, and five years or more of pills for this prognosis to come true. there’s still a chance of reoccurrence after all that, but we’ll know we threw the best medicine could offer at it. and i count my lucky stars that only five to ten years ago, an aggressive HER-2 positive cancer was essentially a death sentence. now the treatments can be so effective, one doctor told me that in a sick game oncologists play of which cancer would they would want, she would want mine. i’ll trade her straight up for this hog.
and with so many cancers, staying alive a few more years is huge, because the leaps and bounds in those years produce new life savers. i know my dad thinks about this every day.
i’ve had two days this week where i felt really good. i’m learning to not question why i feel really good and just go with it, because i know there are days i won’t be able to get out of bed. i also had 1 doctor-free day this week and drove to work. it never felt so good to don heels and sit in traffic on the freeway.
some other highlights of our week:
▪ we saw two oncologists with two totally different approaches, bedside manners, and recommendations for treatment order and chemo regime. i’m now leaning towards starting chemo first, and my surgeon is supportive. this will allow us to use my body as a laboratory and see how the chemo affects the cancer. a tiny number of people don’t respond to the chemo regime i’ll be on (likely the aggressive AC followed by T, then herceptin). if that’s the case, they’ll know and pull out another weapon in the arsenal. if some cancer cells escaped and are hiding out elsewhere, which could always be the case, we’ll know if the chemo is hurting them too. if i have the mastectomy first, we don’t get this chance to gather more information. there are obvious health and emotional implications to this route–going into a major surgery with a weakened immune system gives me increased chance of infection, wanting to get the cancer out asap, etc. however, the upside speaks to me. because it looks like the cancer may be in at least one lymph node, the chemo would also attack that, such that it might not have to be removed during surgery. so my chances of lymphedema (think elephant man in my arm) would go down too. if i do chemo first, i could also qualify for an unblinded clinical study where i get an extra something on top of the standard protocol. it’s a big time commitment, but the upside to the weekly monitoring, additional MRIs and needle biopsies is that i will be a very well-studied lab rat.
▪ i see the last oncologist on monday. they’ve all been good about getting me in quickly. i like to think it’s because of my sparkling personality, but it’s really the sad fact that i’m a freak and they want to get to the bottom of my weirdly aggressive cancer at a young age. the tie breaker of the three may be which fictional character i best connect with, because they all remind us of someone–beaker from the muppets (a chinese version) and cruella de vil from 101 dalmations (sans fur coat). whichever way we choose, i will be receiving the best care.
▪ we saw the genetic counselor and we will know if i’m a BRCA carrier in seven-ten days. my family history doesn’t suggest this is the case, but since i have cancer at such a young age, my chances go up to 12%.
▪ we decided to move foward with fertility preservation. yay future unborn children frozen in time! it was a very challenging decision, because we had not decided yet if we wanted children. we could always donate them to another couple. but it’s hard for me to do something without actually doing it, if that makes sense. to get through IVF treatment, i needed to fully commit to the idea of being a parent. it would be five-six years before the doctors would want me to become pregnant (so slow down grandma/grandpa calcari and campbell).
▪ mike is doing amazing at giving me shots every night and keeping the mixing all straight. dr. “shaky hands” campbell also has a good bedside manner and is open to feedback on improving his delivery (including me watching youtube clips of cats eating – .http://www.youtube.com/watch?v=eiHXASgRTcA) (you’re welcome). i’ll get my eggs harvested in the next week or so. the amazing thing is that if i’m BRCA positive, they could isolate and not use those eggs (40-60% of those harvested). the doctor might want to do another round if this is the case, but we’ll cross that bridge if we have to and have time to in consultation with the oncologists.
▪ with all these shots and blood draws, i haven’t passed out yet because of my vaso-vagal response. that is so huge. i’ve also increased my salt intake with copious amounts of ramen to bring my barely breathing BP (80/60) up to normal levels (110/80). we’re considering starting a tab at ken ken ramen around the corner. it seems to be doing the trick.
▪ ativan is my new favorite candy. maybe all you recreational drug users already knew this and i’m just late to the party. either way, it’s now part of my life. i took it for my MRI and fell asleep in the tube. this being my first of many MRIs to come, i equate it to living inside R2D2. with the volume turned way up.
▪ the plastic surgeon was a trip. of course he was pretty. i was bummed though to learn a few things. while he will do reconstruction as part of the mastectomy, i will get an expander that he will slowly inflate. after my skin has time to heal, i’ll have another outpatient procedure to insert the silicone implant. after ten years, i’ll have to get a new implant. so it’s not so simple. there is an alternative surgery that i could do, taking stomach fat and making a more natural looking breast. it’s a tough surgery to recover from though and may be more relevant after having children. after feeling pretty good about my stomach fat when the first oncologist told me i didn’t have enough to do that surgery, the plastics guy, while pulling on my stomach fat said, “yeah, i think you have enough here to do the flap.” darn. i thought those bi-annual sit-ups that i’ve been doing were really making a difference.
those are the highlights. mike has been to every appointment so far and it’s been so important to have him here for many reasons, including the note-taking. information is flying at us fast. he’s also been amused that i’m generally topless or pantless at every turn. it’s not weird at all for a husband…or the exact opposite.
much love back to you all. we are so thankful for you every day.