Coming off chemo is a lot like the Monday, maybe the Tuesday or Wednesday, after a really long music festival weekend. You're not really in much physical pain anymore, but you just know deep, deep down that you've done a lot of things, said a lot of things, and DONE a lot of things you probably shouldn't have, or otherwise wouldn't have; not in your right mind of course. Which is exactly what you keep telling yourself as the flashbacks get more vivid and last longer.
It's called "the fear". Fear of what you may or may not have done; fear of what you may or may not have said; and most of all, fear of going forward without all the details or facts.
How do you go back to work on Wednesday and chat with the chick from engineering, or as you dubbed her on Friday night in the base tent... Holly Golightly, since the last you saw her was go...ing... behind the big bloke down the back... sure it's all rain and muck anyway... no one will notice.
What you don't want to think about is the fact that her name for you could be... would probably be... far worse. If you could only remember of course! Oh the sweet and painful haze.
Well, just like Coachella, Burning Man, Oxygen, or Electric Picnic, you know you HAVE to do it... so too, you have to deal with the fear of what you have done and what you have still yet to do.
It astonishes me to think it possible to debase myself further than I have at a music festival. Sadly, chemo puts any previous attempts at debauchery and dehumanization to shame.
Once you get past the physical torture of headaches, body aches, nausea, vomiting, constipation, diarrhea, starvation, and glutinous indigestion you are left with the psychologically impairing fear of ... "oh God... what have I done... oh God... now what do I say... Oh God... what do I do!?!"
So, as most of you know, my 8th and hopefully my last music festival (AKA chemo treatment) was administered last Tuesday. Never should have consented to chemo on a Tuesday. "He died of a Tuesday. His stockings were torn", or so my Grandfather Tony told me. I digress...
So, what's next!?! You'd like an answer. Well, so would I. Just like I would love everyone to stop misusing serious elements of proper grammar for dramatic effect ... (-; ... it's just not going to happen.
(If you get all five of those and forgive the missing one, pat yourself on the back. You are a bonafide grammar geek and language snob).
Not to mention the hanging parenthesis... totally unacceptable. I digress...
The truth is, I am scared to death. So scared in fact, I am hiding behind linguistic puns to avoid putting words to my fear.
Most of the time I am grateful for the kinetic, frantic pace at which I have transitioned from breast-feeding goddess mother to Gia-like chemo patient.
However, as I move away from the effects of chemo, which is what I now know, on to next steps, I pause.
I pause to shudder at what I have been through and cringe to imagine that I am only one-third of the way through the "treatment" phase of this process. On deck: surgery, then radiation.
To save time, here is what the next week looks like:
Monday:
10:15am - Dr. VanderMolen (medical oncologist). Take CBC's and review. Confirm PET scan date/ time.
* Don' forget to ask him whether or not it's normal for my thumb and big toe nails to be turning black and falling off.
* Be sure to let him know that I've only had one BM followed by 7 rounds of diarrhea since last Monday.
* Show him two-week old cut on shin, which is not healing or scabbing.
2:45pm - Dr. Ramirez (OBGYN). Attempt to sit for physical exam to figure out why it feels like I've grown a new hymen when I try to have intercourse with my husband.
* Don't forget to ask about the Mojave Desert that is my vagina and what I can do about that, which doesn't involve steroids or hormones.
* While I'm at it, I might as well ask her for ideas on how to be a wife to husband when I've got the Mojave Desert between my legs, a bacterial and fungal Isla Vista in my mouth, and hands and feet as numb as the political class in this country.
That's just Monday...
Tuesday:
MRI
Ultra Sound
Mammogram
Wednesday/ Thursday:
PET Scan
Friday:
8:15am - Dr. Silverstein (Surgical Oncologist). Review pathology and updated scans. Discuss bilateral mastectomy versus oncoplastic breast conservation.
* Don't forget to ask for an excel spreadsheet-like break down of the percentage rates of local recurrence, systemic recurrence and survival rates at 1, 2, 3 and 5 year intervals for 35 year-old, white/ Hispanic, triple-negative ductal carcinoma patients with 3+3+3=9 (highly aggressive) cancer.
* And, that, ladies and gentlemen is the crux, the point, the fork in the toad, the belly of the whale if you will.
The following Monday - Dr. Savalia (plastic surgeon): 5:00pm - tell him which surgical option I've chosen, oh and ask for his opinion.
* be sure to ask him if he can remove excess skin from under arm and trapezoid area due to chemo-induced weight loss at the same time as he removes two-thirds to all of my breast tissue, lymph nodes, muscle, skin and nipples. That'd be grrrrreeeeeaaat... thanks!
So, before we can remove my post-two-baby flab, we need to get back to my fork in the road, my belly of the whale.
From my growing, but still myopic understanding of my diagnosis and treatment protocol, there is no clear cut answer to my question: which surgery is best, bilateral mastectomy or oncoplasty?
Here are the rough numbers, as I (a layperson with chemo brain) understands them. Of ALL patients with ALL forms of breast cancer, only 10-15% have "triple negative" breast cancer. Of that 10-15%... 80-85% of those women are African-American. The remaining 15-20% are Caribbean, Hispanic or White. The "White" portion of that group "tends" to be young/ pre-menopausal between the ages of 27-35.
Do you get why my head is about to explode!?! To say that I am in the rarest of the really rare, rare group might make sense... maybe!?! Now, try to find pertinent data on that sub, sub, sub group on which you can base a life or death decision on.
Don't forget to factor in my pathology, chemo progress, tumor size, carcinoma grade, staging, etc.
Then, weigh carefully the fact that the percentages are so close on local recurrence, systemic recurrence and survival rates for mastectomy versus oncoplasty that there is no margin of error. Oh, except for the fact that survival rate goes down IF... IF you make it to five years on the mastectomy. It seems that the survival rate goes down after five years with the mastectomy because they've removed a ton of lymph nodes, which is your body's waste management system. I guess it's not good enough to build Rome if you do it without a sewer.
Now, decide... mastectomy or oncoplasty? There is no statistical difference in the outcomes of the two surgeries in as deep as the data available shows. Meaning the data is not taken from my sub, sub, sub type. My decision, which can mean life or death depending on my own set of intangibles, is based on Snowden-like meta data from a group consisting of ALL breast cancers. This does not sit well.
Tell me I'm being melodramatic... I dare you!?!
Hence, the FEAR. I see the Banshee in the not too distant background. She has a cheeky grin on her face and a single finger brushing her smug lips. She's begging me, taunting me to make a decision. She wants to wail.
Here's to hoping and praying I make the decision that keeps her filthy mouth shut!
Anyone have a Chrystal ball? Surgery is scheduled for the 23rd. Don't forget to send me your lotto numbers.
Thanks,
Tiff
