Squirrel.
I've started a few blog posts but quickly abandon them as they became...well, not what I wanted to say, rather what I felt compelled to say. Sometimes, I feel like I've already "said everything" the first time around and I wonder why I continue to write. I post complicated and confusing treatise about the technicalities of how cancer changes - even with jelly bean visuals, it's less about my experience and more about how I got here...which is guess is how the journey began, so maybe it's relevant...
Well shit. Maybe I'm just lazy. Or overwhelmed by all that seems to be happening at this point in the game, so much so fast, and yet everything moves at a snail's pace.
Begin at the beginning, I suppose.
Three weeks ago was chemo round #4 of 6 - well over the hump and on my way down the other side. Two more to go, finish line in sight. It was a low-key, run-of-the-mill chemo day with a twist - post-appointment brunch at Bob Evans instead of Bennies at Chilango's.
We met with our oncologist before chemo and discussed the Past, Present and Future. I'm tolerating chemo fairly well so far; no serious infections or other problems since that first awful round. While the third round of chemo brought another (slightly milder) case of folliculitis, nothing else exciting. I did learn, however, that I have a significant case of anemia, which helps explain why I've been so tired lately, and why running and even yoga has become more difficult to endure (and remove some of the guilt I've had about decreased energy).
My MO recommends red meat (which I don't particularly care for) and spinach, nuts, eggs, cheese to increase my iron intake.
Swell. This doesn't necessarily jibe well with my current low-fat, high veggie and fruit diet so necessary in battling TN breast cancer. But I relent and promise to increase my iron intake - anything to help me feel less exhausted.
I ask about the CT rescan. If you remember, I had a CT just after diagnosis but prior to excisional biopsy, ordered as a "staging" scan, ostensibly to see the size of tumor in my breast as there was confusion between what we could feel, what the ultrasound showed, and what the core biopsy samples revealed. The CT also revealed two mildly enlarged lymph nodes - one hilar, one mediastinal, which sit in the middle of my chest behind my brestbone - as well as a lesion on my left lower lung lobe. There is a nodule in my right lung that's just hanging out and no one is concerned at all about - it's small, doesn't appear to be interesting, and apparently nodules in lungs are not uncommon. Confession time: for those who don't know me well, I am a former smoker (we all do dumb things in our youth...and maybe again when we get older...but then we wise up and stop being dumb, at least about smoking) so it's possible this is related to that...or to breathing the air...or being alive...lung nodules are not uncommon and are not a concern until and unless they become larger than 1 centimeter, or begin to change over time.
Oh, look a shiny squirrel.
We decide to do the CT scan after chemo #5, so that we can discuss the findings at our last appointment three weeks later.
No professional I've encountered has seemed the least bit concerned about what these things - called "incidentialomas" because they were found incidentally on a scan meant for something else - are, or what they represent. Not my surgeon, not my MO, not even my second opionion docs at UM. My radiologist, however, keeps sending me nastygrams in the mail insisting I follow up on these "concerns" with my doctor, which I do - except (as already stated) he doesn't seem concerned. But he also really does want a rescan - I don't have to twist his arm about this. Hmmm, Sherlock (*slowly stroking chin with one eye squinty*) - What does this mean? He tends to keep things close to the vest, so I'll have to wait this one out. In the meantime, until it's something, it's nothing, and that means I leave it at the clinic door and move out into the sunshine and warm air (which, as we all know, turns to snow a few days later....and the squirrel thinks it's time to hibernate except I keep petting it and calling it Sally, and now it can't escape...)
My MO recommends red meat (which I don't particularly care for) and spinach, nuts, eggs, cheese to increase my iron intake.
Swell. This doesn't necessarily jibe well with my current low-fat, high veggie and fruit diet so necessary in battling TN breast cancer. But I relent and promise to increase my iron intake - anything to help me feel less exhausted.
I ask about the CT rescan. If you remember, I had a CT just after diagnosis but prior to excisional biopsy, ordered as a "staging" scan, ostensibly to see the size of tumor in my breast as there was confusion between what we could feel, what the ultrasound showed, and what the core biopsy samples revealed. The CT also revealed two mildly enlarged lymph nodes - one hilar, one mediastinal, which sit in the middle of my chest behind my brestbone - as well as a lesion on my left lower lung lobe. There is a nodule in my right lung that's just hanging out and no one is concerned at all about - it's small, doesn't appear to be interesting, and apparently nodules in lungs are not uncommon. Confession time: for those who don't know me well, I am a former smoker (we all do dumb things in our youth...and maybe again when we get older...but then we wise up and stop being dumb, at least about smoking) so it's possible this is related to that...or to breathing the air...or being alive...lung nodules are not uncommon and are not a concern until and unless they become larger than 1 centimeter, or begin to change over time.
Oh, look a shiny squirrel.
We decide to do the CT scan after chemo #5, so that we can discuss the findings at our last appointment three weeks later.
No professional I've encountered has seemed the least bit concerned about what these things - called "incidentialomas" because they were found incidentally on a scan meant for something else - are, or what they represent. Not my surgeon, not my MO, not even my second opionion docs at UM. My radiologist, however, keeps sending me nastygrams in the mail insisting I follow up on these "concerns" with my doctor, which I do - except (as already stated) he doesn't seem concerned. But he also really does want a rescan - I don't have to twist his arm about this. Hmmm, Sherlock (*slowly stroking chin with one eye squinty*) - What does this mean? He tends to keep things close to the vest, so I'll have to wait this one out. In the meantime, until it's something, it's nothing, and that means I leave it at the clinic door and move out into the sunshine and warm air (which, as we all know, turns to snow a few days later....and the squirrel thinks it's time to hibernate except I keep petting it and calling it Sally, and now it can't escape...)
A day after chemo #4, I catch a new-to-me curveball: unrelenting nausea (even warm Vernor's wasn't touching this). The presecription meds can (and for me, DO) cause wooziness; taking it makes daily functioning a bit of a challenge, and that includes the commute to work, enduring countless meetings, staring at spreadsheets for hours on end, and driving my happy ass back home. It's at moments like this that vomiting and diarrhea actually sound preferable in some perverse way. Alas, those never materialize, but by Friday the nausea is gone. Just in time for the highly anticipated Day In Bed, which bone and joint pain and an excruciating headache, thanks in large part to the Neulasta. The next couple of days are rough, as excepected, but by Monday I start to feel more normal (as normal as a girl who keeps a glittered squirrel by her side).
On Monday I meet with the genetics counselor at UM. Her role is to record my family history of birth, death, illness and disease, and complete a complicated genogram. From there we determine whether there is reason to continue forward with blood work to test for breast cancer-related genetic testing, including BRCA1 and 2 tests.
Except, as I point out to her and her lovely student assitant - I've already had the bloodwork completed, and the report returned a few weeks ago.
She is genuinely surprised by this turn of events. A quick scan of my file reveals no report. I explain it was completed at UM by their path department; she goes to look for the report, leaving me with the student who is uncomfortable and wants to ask questions but instead we spend a few moments in silence. The counselor returns and says she cannot locate the report. Instead we spend a few moments discussing other genetic variations I had not already been tested for, and after reviewing my familial history she mentions something that stands out to her: my grandparents are of Russian, Polish, and English decent, having emigrated to the U.S. in the early 20th century. She explains that the CHEK2 mutation is often found in those of Russian/Polish/Northern European descent. We discuss, I ask questions, and in the end I decide to send another blood sample off to Ambry to determine if there are other variations we need to be concerned about. It doesn't make a difference to me, but I'd like to know for my childrens - and for their children's sake.
On Friday we meet with our intended plastic surgeon, Dr. M with UM. He is gentle and kind and incredibly both personable and professional. He knows I am interested in doing a unilateral mastectomy (Lucy, you got to GO girl!), and that I don't want implants. His specialty is DIEP flap, which harvests tissue and fat from the belly and places it in the empty breast cavity. There are pros and cons with this - as with any surgery. The pros are a natural-feeling breast that will have warmth, be soft, and look very similar to my other breast (eventually). It will gain and lose weight as I do. It won't look round or unnatural, as many implants often do. The risk of infection and rejection is far less than for implants as there is no foregin body involved. And, yes, the bonus of this surgery is a tummy tuck of sorts (although having cancer isn't nearly a good enough reason to get a flat stomach, so I'm on the fence about whether this is a pro or a con).
Then again, on the con side is the length of surgery - 8-10 hours and two surgeons. A 5-day hospitalization, with a two-week at-home recovery during which I can do very little. I'll have three drains to wear for those couple of weeks, too - two in my belly area, another in my breast. No showering while the drains are in (*insert sad, icky face here*) Because of the extensive abdominal surgery and arm limitations, getting in and out of bed is a challenge so it's been recommended we get a recliner for me to sleep in. Dr. M. shares that it will be very important that I don't stand up straight for at least a couple of weeks post-surgery, as the hip-to-hip abdominal incision needs time to heal. He also explains I could be back to 80% by 6 weeks and return to work at that time, or I could wait a couple more weeks "just to be sure".
So - eight weeks recovery.
But wait - there's more. As in, this is not a "one and done" surgery. Three months after the first, I return to Dr. M (who, besides being incredibly kind and personable, also looks incredibly like Taye Diggs, which makes listening intently to all he has to say both easier and a bit of a distracting challenge at times...Sally, get out of here!!) The second surgery is an outpatient revision surgery to clean up any scars that need work. In my case that second surgery would also likely include a breast lift on Ethel, for symmetry's sake.
As I stand there with my top open for Dr. M to review the girls, he looks from left, to right, to left, and back to right again. He gently grabs my belly flab (thank you Ben and Jerry!!) and says, "which one are we trying to match?" I already know what he means. My left breast - with all the tissue removed from biopsies and lumpectomies, enduring 6 weeks of radiation - is actually larger and more firm than the right, which has developed a sad little sag and a slight downward tilt to her nipple (I'm 52 and have nursed children - it was bound to happen). Dr. M has enough tissue to create one breast, but not two. He offers there are other options to create a second breast, should I desire that - using tissue from my inner thighs or my upper buttocks.
What - no more chubb rub? No more Kardashian-like butt shelf from which I can easily serve drinks?
Sounds like an awesome idea - except I've seen the surgical photos and the thought of more extensive surgery just to have Ethel as perky and popular as Lucy seems like a lot of work. Instead, Dr. M suggest we could do a lift and fat grafting (aka liposuction) from those areas, into Ethel, to achieve more symmetry. I'm comfortable with these ideas, and know that we'll know more once we get through the first surgery. This only requires a two-week recovery period, and hopefully no drains.
The third surgery, six months later, is to create nipples using the CV flap. And the last surgical procedue would be to have the nipple tattoed back on - Dr. M. PA apparently is an incredible artist.
It's a lot to process; petting Sally seems to help calm my nerves and keeps me surprisingly focused (even if I end up covered in glitter). In discussing all of this with Ken, I realized the root of my anxiety comes not just from the fear of all of this surgery (it's a lot - like a LOT of time and energy and attention, and time off work, and recovery, and who knows what the ultimate outcome will be? And am I worth all this trouble and time and $$ and energy - why can't this just be over?!) but the reality that this dance with cancer will end far differently than my first - more complication with fewer choices.
And that's when I sort of shut down and just ignore the fact there's a big, fat, glittered squirrel in my living room that's rather needy and eating all the damned chocolate.
In the meantime, life goes on. We have a Thank You BBQ for those who helped with basement and shed demolition, that ends up as a snow-covered dumpster toss. Sally subtly suggests that if we're going to drywall the basement, we might as well tear out the ugly drop ceiling in the kitchen...and maybe add that over-oven vent we've been looking at...how about new countertops? I continue to run but am finding it becoming more difficult with passing days - breathing heavier, legs like lead, shin splints and exhaustion. Work continues to change and challenge (and with Sally at my side and chemo on my brain, I'm not certain I'm as effective as I could be, but I can usually remember my login password so I figure I'm ahead of the game).
Chemo #5 of 6 was this last Tuesday. The pentultimate treatment - I can see the finish line!! My son Michael joins me at this appointment, and blesses me with ice runs and conversation to keep me occupied during the Ice Mitts of Death portion of the show. He gets to meet my team and be a part of the planning process for the upcoming CT scan (this Friday at 6:20 am - wha?!?!?) I meet with the PA this treatment as my MO otherwise occupied. She's a kind and gentle soul and always curious to know how I'm feeling.
I mention that I'm keeping busy but tired, and having a hard time running. Can't seem to go farther than a block without simply being spent. I try to get in 2-3 miles on weekends or a nice evening, and have been walking a mile at lunch every day, plus climbing 6-8 flights of stairs twice a day at work - but it's getting harder, not easier. (*disclaimer here: It's hard not to go to Dark Places when shit like this happens in Cancerland).
"Well," she says, "your hemoglobin is dropping. Do you want to see?"
What fresh hell is this?
Those little finger pokes prior to treatment tell me that I started out with a hemoglobin count of 13.5, which is good and normal and happy. As Ken explains, hemoglobin is like the 18-wheeler of the blood highway, carrying oxygen around the body to keep you going. Lower hemoglobin means less oxygen delivery, which explains fatigue, muscle tiredness, and my challenges in running, walking, climbing stairs, etc. (I'm counting on it causing my lack of desire to clean, cook, and forgetting to put gas in the car the other day, too...)
On this day, my hemoglobin count is 9, about 75% of what it would normally be.
Apparently Taxotere likes to gobble up hemoglobin, and this is a relatively common SE. My NP explains that a transfusion would resolve this continued decrease and I would feel better almost instantly, and although they don't usually transfuse until levels drop below 9 I would be a good candidate if I should choose. She also pointed out that my level will only continue to drop after this treatment, sooooo....... As I contemplate this for a moment I look over to Mike to see him smiling, remembering when his hemoglobin dropped into the 5's ("how are you still standing up?" his doctor asked), a SE of his kidney disease. Even he mentioned how much better he felt after a transfusion. My NP tells me to let them know how I'm feeling next week, and if I'm continuing to struggle they can fit me in.
Off we go to the infusion room, setting ourselves up for the four-hour visit. My cheeks pink up from the steroids, I settle in to my barca-lounger, and we debate post-chemo brunch options. It's a typical treatment day; the nauseau starts halfway through this time, but it's manageable. Otherwise nothing exciting, really, which is always a good thing.
Later that evening, Ken and I decide to hit the Chinese restaurant where Mike works (warm soup sounds delish on the tummy, and Sally likes the little crunchy wontons on the side). Nibbling my fortune cookie, I read:
"The current year will bring you much happiness."
Seriously, dude, WTF? But instead I pause, smile at my husband (who always brings me happiness...and Ben and Jerry's...) and realize that yes, even in the middle of a second dance, and nausea and pain and "what-ifs" and anxiety and exhaustion and frustration and inconvenience and huge surgeries and big decisions that I don't want to make - I am truly finding much happiness.
