...NED

Best news I had today...

IMPRESSION: There is no mammographic evidence of malignancy.

Monday...

On Monday April 3rd, I'm scheduled for a diagnostic mammogram, on Wednesday April 5th I am scheduled for my final round of chemo and it fucking better be or I will lose my damned mind. 

I know few folks aside from myself who keep score of this stuff but for the record. 

24 rounds of chemo (including immunotherapy and targeted chemo as well as systemic)

21 rounds of radiation

7 echocardiograms

6 mammograms

2 ultrasounds of the breasts

7 months of hormone blockers (53 more to go)

1 needle biopsy

1 port insertion 

1 lumpectomy

Update! 1 port removal! 

Things I know now -

For me the antinausea drugs were not as effective as medical marijuana, same for the anti diarrheals. 

Happy Anniversary to the stump

A year ago today I had my lumpectomy. At the time I was bald as an egg and done with systemic chemo not quite having realized I had 18 treatments remaining for a grand total of 24. I knew I would be undergoing radiation therapy once I recovered from surgery. I had only had one previous procedure involving anesthesia (the installation of the porta Cath). I anticipated a great deal more pain than I experienced I think I took 2 Tylenol with codeine after surgery and 2 regular Tylenol the following day. This was not a massive procedure, less than 50 grams of cancer and margins were removed.  Surgical glue meant no need to remove sutures, and 1 week later we started throwing in the hatchet league. 

How this goes

Currently I am engaged in targeted chemo but have previously experienced chemo, immunotherapy, radiation therapy and hormone blockers.

First, chemo therapy a/k/a rat poison - you can tell this is going to be fun because they premedicate you with Benadryl, dexamethasone (steroids) , and at least one if not two anti nausea meds. I think I was getting 4 bags over about 2-2.5 hours, once the pharmacy worked their magic. Blood work is ordered prior so they can determine you're healthy enough to tolerate the treatment. Dr. Google can help you determine they most common side effects as well as the less common that keep things adventurous - for example, most folks lose their hair. My hair/scalp hurt so damned much I pulled about a quarter of it out prior to shaving my head. Too much fun.  Had 6 rounds of this fun with some diabolical side effects, lost a bunch of weight and for the first time in my life was admonished for it. The first round of the chemo meds is given more slowly than subsequent episodes in case you're having really ugly reactions or whatever clinical decisions are appropriate.  It was about a nine hour day and it was good I brought snacks.

The next step was to remove the tumor via lumpectomy, my breast remains largely intact as less than 2 ounces of boob guts were removed, though I still refer to the remainder as my stump for my own amusement. 

While recovering from the surgery we started with immunotherapy which is just one drug and no premeds, but the drug can damage my heart, so quarterly echocardiograms are on the menu. Immunotherapy I tolerated way better than the original.

Radiation, other than the disconcerting bacon smell and gymnastics required to stick the dismount. I found that Rejuvaskin Skin repair to be really helpful on the scorched surfaces and in an unexpected bonus I'm not allergic to it. So radiation Not so bad - although toward the end there was a lot more reflux and irritation to my esophagus. Bearable but not fun. 

Targeted chemo again not so bad but not necessarily a laugh riot either. 

Neuropathy is a fucker, my left hand has been numb/pins and needles for about 18 months now. My grip strength is good thanks to PT and general relentlessness.

Hormone blockers - fuckin A, I had been on since August they took fucked with my hands so I'm off until next treatment and we will try another one.

what am I afraid of

1) recurrence.

2) lymph node involvement a/k/a spread

3) Alzheimer's

4) some fucking genius making marijuana and assisted suicide illegal

5) incapacitation

6)more fucking taxotere and Cisplatin 

What a Difference a year makes

The top photo was from last year, during the part of the adventure that left me bald.

The bottom is me today in my surly, feral crone mode. 

if you smell bacon

If you smell bacon during your radiation treatments, it's you.

changes

I have found myself thinking about how breast cancer has changed my life. 

Scar tissue is denser than breast tissue so it throws off my balance while swimming.

Speaking of my breast stump horrifies the loin fruit. (Lest you be horrified, I don't have a stump I have a small scar) . I also refer to her as Peg, keeping shit as piratey as possible. 

I joke about being feral now, but seriously I am in my feral crone time and I'm a biter 

speaking of luck...

I didn't go through this alone. And I would not have gone through it, no matter how convinced I am that I need to beat the actuarial projections. Dori went with me to every single appointment, every last one. Made multiple meals on days when I couldn't eat what she had made for the family. Made multiples of meals on the days I could eat. Kept track of my meds when I got chemo brain (or antipsychotic brain cuz it's also an antiemetic).  Made certain I was as comfortable as possible and calmed me when I was too sick to deal. And did everything else that I could not.  A & S also kept us in snacks and groceries. Helping with the critters. And Dori, A & S handled the horror when the sewage backed up. 

So I am inordinately grateful for them and my great good luck in knowing them. 

Today was my 20th infusion

I did 6 rounds of heavy hitting chemo (Cisplatin, Taxotere and Herceptin) 4 rounds of immunotherapy (just Herceptin) and 10 rounds of targeted chemo (kadcyla, aka Herceptin and emantasine), there was also a portacath insertion and a lumpectomy. Oh and 21 rounds of radiation. Still have tingling in my left snack hook and have accessorized with DeQuervains  tenosynovitis in the right snack hook. My hair has returned both curly and darker. I lost 50lbs, my sense of humor for about 4 months, as well as my hair, all my hair, no hair in winter is a cold cold situation.  I am currently looking at 4 more treatments, 5 years of hormone blockers.  On the bright side of things, the lump was too small for the clinical trial for small tumors, 7 days after my lumpectomy we joined a hatchet throwing league and I was able to kayak the week before surgery (and a month after so score) . Additionally I know consider myself mainly feral, which really isn't that big a lift from my formerly polite but not friendly.  I refer to my left one alternately as Peg, Stump and Lucky. Mostly lucky because it was caught on a screening mammogram before it was palpable. My tumor is triple hormone positive which is really good news now but 15 years ago not so much. Mainly because the immunotherapy medications are complete game changers.  

Hair

this fucking thing is

Not even the size of a MacDonalds french fry, it's about a third of the size of a MacDonalds french fry. 

... well yep

Side effects, I've had a few, more than a few

Lost the hair, aside from about 4.5 eyelash hairs and about 3 eyebrows per side.

Diarrhea, oh my sweet Jesus, diarrhea like you can't even believe. And couldn't control it with Imodium and lomotil. Completely counter-intuitively, Metamucil helped along with probiotics. 

Nausea because, is it even chemo without nausea? And famotidine worked better for me than compazine etc.

Thrush - good times, she said facetiously.

Neuropathy - check, mainly on the same side as the tumor.

Blood sugar roller coaster due to the steroids and subsequent glimiperide. 

Visitors from the planet Hemorrhoid.

Rashes- I don't need no stinkin' rashes.

Fingers splitting at the cuticles. Mouth splits at the corners. 

Fatigue.

Weight loss- have diarrhea and nausea 10 days out of every 3 weeks for 5 months, you'll have that.

Not saying it caused any AFib, not saying it didn't.

Gas- but can't trust it cuz with that kind of diarrhea a shart is just a whisper away.

The tumor is named Pia because it's a complete and utter pain in my ass. 

well...fuck

Wanna make God laugh, tell him your plans. When I retired August 1, 2021, I had a ton of plans, and when I got the biopsy results on October 8th, the plans upended with a quickness, days filled with appointments with surgical oncologist and medical oncologist and imaging. Lots and lots of imaging. Initially the plan was surgery and radiation. Then the plan changed to be clinical trial with chemo, surgery and radiation. My tumor is too small for the clinical trial. Which is good news, no sign of lymph node involvement. Also good news.  Still scary shit though. I'm apt to lose my hair which is likely to grow back with a vengeance. 

When one is in the midst of Randori

It might look something like this.

9-11-01

Ten years ago today, when the first plane flew into the towers, I was at a viewing, yes the pre-funeral one for a dear friend's dad. I remember driving back to work and feeling as if something wasn't right but it wasn't until I got to work and saw CNN.com that I knew what had transpired. I was sent home because I live within 35 miles of NYC and the nearby military facility was being set up to receive injured folks that never came. I remember being at the chiropractor that evening and her husband at the time worked in the WTC but didn't make it in to work because he was attending a funeral.

I remember as the names of those murdered started to trickle in, I started to see familiar ones, a friend from grammar school and high school, some firemen I knew from karate class. And friends of some of my kid friends whose dads or moms just never were able to come home.

Just unthinkable, nearly unbearable to be adjacent to that much carnage and pain. Still raw 10 years later. But I learned to believe in hope, love and energy. And to be grateful for the lessons the universe brings me. Chief among them being, there is right now, and that's it.

Bardo

Bardo is a Tibetan word, it means transition and often refers to the 49 day period between when dies and is reborn. October 18th was 49 days ago and my dad had a seizure while in mid sentence about 6pm, a code was called, an ambulance was called and at 6:54pm he was declared dead by the ER doc. At about 645 I was outside the ER treatment room where I heard someone say that was the third round of epi and he's been down 45 minutes. I've seen enough ER and Grey's Anatomy in my day to suspect a 4th round of epi would be administered. But before that discussion took place a security agent took me to the 'family room' where my sister and my mom were waiting to find out what was happening. By 7pm the doc on duty had told us that my dad had passed and by 730p we had called the out of town siblings to let them know and we were back at the house looking for wills and papers and a pizza. So for the first bunch of time I was numb as hell, and it's how I got through the viewing and funeral, or maybe I don't know how I got through any of it. But I did.

What Buddhist folks believe is this - 49 days after someone leaves this life, they're reborn. And one can undertake certain rituals to ease a loved ones transition and while I'm not really well versed on how to undertake this stuff officially, I go with what I understand. I know that the universe strives for balance, that's what karma is about and that by certain deeds one can throw the balance out of whack so that one's karma is eased. At least, that's how my accountant brain gets this. So for the past 49 days (and the 11 days before that when Rupe got) sick, I've liberated various sentient beings (108 crickets and 1000 worms) to ease their suffering. Chanted medicine Buddha mantras and when that didn't work out how I was hoping, I chanted 100 syllable Vajrasattva mantras for purification of karma.

So Rupe, welcome back, be safe and be happy. We still miss the hell out of you.

Stages of Grief

Dr. Elisabeth Kubler-Ross spoke of 5 stages of grief. My experience so far has been 1 and it's none of the ones Kubler-Ross spoke of, it is and remains, what the fuck?

Don't know quite what I expected

but this is so not any kind of linear experience. It was at first, Rupe got sick, he seemed to be getting better, didn't get better and died, we did the ritual stuff. That all was linear but the feelings aren't, they're more roller coastery then all that. And that's all I've got to say about that day.

On another note, today is Halloween, I gave out prunes. Individually wrapped prunes, until I ran out and had to give a kid an envelope of tuna. Not sure if it was cat tuna or people tuna. Got some more prunes and haven't had a trick or treater since.

So perhaps I've mentioned

That October 18 was life changing for me in ways, I'd thought I'd considered. And as I am occasionally a thoughtful person I'd considered them across a breadth of emotions that I'd likely encounter as my parents, siblings, friends and assorted loved ones, acquaintances and family members aged. So breadth I was somewhat prepared for, depth I had no idea. At first I was just sad and numb, and I welcomed the numbness because it made it way easier to get through the public mourning events my people are inclined to do. But now when the mourning is done largely at home with the cat life and in the car, it's with a full bodied sadness, that I will confess is new to me.

As I described it in talking with one friend it's a hot mess of suck. And it will suck for an epic long time, but please do know that you care enough to try and take some of that away makes it suck a little less. And makes it suck a little less life and humor out of me. Which is about all I'm hoping for today.