Now That They Are Gone

I admit. I was a bit apprehensive Monday morning as we sat in the pre-op area of Sibley Hospital. With my IV in, numerous consent forms signed, redundant questions like "what's your full name and birth date" repeated and answered, we waited to meet the anesthetist, and my surgeons. Liz held my hand and rubbed my head as the tears came. It was clear I was sick. Very sick. And I needed a team of professional medical folk to make me better. My biggest unknown was whether there was residue cancer still in my breast and that - god forbid - it had spread to my lymph nodes.

To locate the lymph node that would tell the surgeon important information, she needed to located the "sentinel node" that first node in the series of nodes throughout the body and see if it contained cancer cells. A large man named Carl entered my pre-op area with what looked like a tiny metal tool box. Inside that tiny box was some sort of nuclear medicine that my surgeon - under Carl's watchful eye- would inject into my left nipple and then continuous massage throughout my breast while holding me down from running out of the room. Not pleasant.

 My surgeon would then locate my sentinel node via a Geiger counter - ???? during surgery. Remove it and then have it biopsied while I was on the operating table. If the node was positive, the surgeon would continue to remove nodes until she was certain she removed all with cancerous cells. Apparently as a backup to the nuclear thing I will also injected with blue dye during surgery. I peed blue for 24 hours.

 My surgery was scheduled for 4 1/2 hours and I was out in 2. Luckily I do not have any complications with  anesthesia and within 30 minutes or so I was reunited with Liz and wheeled up to my room. I was up roaming the ward within a few hours and I spent a night in the hospital - BTW, Sibley has great Mac n cheese and carrot cake. After quick consultations with both surgeons early the next day, I was released and went home.  I'm always so thankful for the nursing staff. I was well looked after and well taken care of.

Liz has been a trooper with keeping up with yet a new list of meds ( I'm on a steady diet of valium and Cipro) and emptying my drains every eight hours. I got my first look at my new chest and while I did shed a few tears, I knew it meant for me I was on my road to healing - and it would be ok. It will be a big relief to us both to have the drains pulled as early as Tuesday of this week.

This coming week brings a slew of followup appointments with my plastic surgeon to see how I'm healing and hopefully have the drains removed, with my cancer surgeon to discuss what she found, with my radiologist to see if I need further treatment, and with my oncologist to help us interpret all of it.

I very much want to say that I'm a cancer survivor. That I'm ready to move onward with my life. To honor those who battled this disease  before me. To be there for those who will battle it after me. To do what I can to play a part it finding a cure. Fuck Cancer.

My Heart is Full (video) - Shout Out of Love to My Village

Please Keep Rooting for Me!

Love, Jacki

Herding Cats - WWKD

My need for bras  - FOREVER - ends in 6 days. A week from today, July 24th - I am scheduled to have a double mastectomy. For those not familiar with that medical term, it means I have will have BOTH boobs removed.

As you will kindly recall, cancer was discovered in one of them (left one to be exact) earlier this year and I'm not interested in the stress, worry or general hassle of ensuring it doesn't comeback in the right one. So she's leaving too.  That's not to say, my cancer won't return in another part of my body. In fact, there's a fairly good chance it will show up elsewhere should it return, but having both breasts removed is the best personal decision I can make to keep the cancer at bay for as long as I can.

In any case, they are both coming off in a week.I - like most women -  have a drawer full of bras: everyday ones, sports ones, pink ones, poka dotted ones, blue ones, white ones, black ones. Strangely sad, I won't need ANY of them come next week. So as I wear them this week, I'm saying my good byes.  I've worn a bra since the age of 10 or 11. For 40 plus years. And for 40 plus years I've searched for the "perfect" bra - never found it. The good news I can stop searching, I guess.

The process to remove my boobs takes a medical village of sorts. I currently have four physicians involved. Each one has a specific role. One to cut them off and to cut out any remaining cancer, one to make the scars as minimal as possible, one to figure out next steps in the fight against cancer, and one to look after my general health and well-being. Each one prescribing meds, giving me instructions, poking and testing and giving their blessing I'm ready.  Unfortunately they don't always talk to each other and so I've spent a good deal of time this past week or so (and stress) sharing with one what I've been told by another to make sure everyone is on the same page.  If I've learned anything thru this I've learned to be a pain in the ass until I get the information I need and the answers I seek. I can't tell you how many times I've said to I don't remember how many different people these past few weeks that my worse nightmare is going to get my boobs (and my cancer) cut out only to discover I needed a test, should have gotten an ok from someone and didn't. No one and nothing is preventing me from having this surgery Monday. And if I have to herd them cats to ensure it happens then so be it.

BTW - My hair is returning. And as I predicted it is grey.

Yet I continue to lose my eye brows and eye lashes. Weird.

Walking to the dentist today, I was confronted by a nice young person raising awareness for Amnesty International. If you've ever come across these folks they stand on the sidewalk, or come to your door, seeking your attention and interest for usually a good cause. In any event, I didn't have time to stop and chat and as I walked by very politely declining his request to chat, he asked if I was interested in saving lives. That got me. Yea, I'm interested. I'm interested in saving my own life right now. Priorities dude. 

The reality of this is hitting hard. I have cancer. In a week, I won't have any breasts. Like Forever. This shit is life changing. 

I am faced with heading into this next stage of my fight without the strongest, most generous, most courageous woman I've ever known. She lost her seven-year battle with breast cancer this month. Every Thursday before my chemo, she would rise above her own pain, her own fear and she would cheer me on. She constantly told me she was proud of me. During our last visit as she struggled to keep food down, she looked me in the eye and told me how proud she was of me. She was my hero, my Wonder Woman, my coach through the hardest fight of my life, a role model of bravery and perseverance. WWKD.?...she'd fight like hell to live. Ride on, my friend.

Please continue to root for me.

Post Chemo Thots (Chapter 1) - What to Bring?

Packing for chemotherapy? Ever wish you knew what to bring with you?

Just as travelers and trekkers  - for decades - have been putting together packing lists to help their fellow travelers and trekkers know what to bring along when you don't know what to bring along, I've put together the following handy list of items Liz and I successfully schlepped to/from 19 chemotherapy treatments. You don't want to be caught without any of these items!

- Bag (to carry it all in). We first bought a pretty, easily tote-able bag from Amazon. Brightly-colored (think "joyful"), multiple handled options (over the shoulder and or hand-held), with multiple zippered access points for a tidy look. We quickly realized, that "fashion over function" wasn't going to do it. The bag was too small to carry EVERYTHING I needed (or might need), the zippered access points - while keeping the various pockets, etc closed and tidy - were not practical when I began to madly dig around in it while hooked to my IV. I needed "easy access", not "tidy". And so when my colleagues gave me THIS - THIS was perfect!

As you can see, it's bigger than the "pretty" bag, has NO zippers, and can haul a shit-ton of crap for you and your chemo patient. Plus, the message on the outside of this thing always brought an equal amount of good-natured giggles and "I would never say THAT word"- snickers. To the later form of humans, Fuck you. You get cancer and see if your snootiness doesn't dig deep to find humor (and a ting of anger) in everything and anything you do/see/hear/taste/breathe....Anyway, I digress......

 - What to call "the bag" - Ok, first, it was simply known as the "chemo bag". Do you have the "chemo bag'? Did you put xx in the "chemo bag"? Where's the "chemo bag"? But that name soon became too negative, too sad, too much of a reminder of all of this horrible, awful, frightening stuff. So we renamed the "chemo bag" the "happy bag". Genus, right?   It stuck. It worked. Again, fuck you.

- Contents of "Happy Bag".  Ok, here's a brief list (in no particular order) of what we brought with us to EVERY SINGLE CHEMO TREATMENT.  Just in case, you never know, I never thot of that arose in the weekly 3 plus hours I was hooked to an IV (and very importantly an IV pole) via a device sunk into my chest wall.

• Ipad (I watched an entire season of "The Americans" and half a season of "Man in the  High Castle", both good shows);

• A book (I read Sheryl Sandberg's "Option B" - very appropriate - but most of the time I found it very difficult to concentrate); 

• Bag of various chargers and charging devices (does this need explanation?); 

• Fleece jacket (the chemo room was always cold - or at least I was always cold); 

• Stocking cap (again, always cold);

• Snacks:

• Throat lozenges (chemo particularly the A/C combo I had at the start - is known to cause mouth and throat sores. Be sure they are SUGARLESS - sugar can acerbate the sores);

• Nuts and dried fruit (cause Liz is my wife);

• Kettle chips (I craved salt during my chemo);

• Various snacks for Liz (very important);

• Trader Joe's Nut and Dark Chocolate bar - OK maybe more than one of these for when my blood sugar ran low or when I didn't crave salt - don't judge, whatever;

• Lip moisturizer;

•  Hand moisturizer;

•  $20 (for emergencies such as parking, an extra Trader Joe's Nut and Dark Chocolate bar, etc.).

Like a pair of expectant parents, we had the "Happy Bag"     always packed, stored in the same spot, and ready to go. It made it easier on the morning's of chemotherapy when I had too much flying around in my head to think straight and it all fell on Liz to keep it (and me) together, to just grab the bag and head out the door. We got pretty good at the routine of it.

As days get farther from the chemo phase of my fight and my head begins to clear, I will post more about the "behind the scenes" of a chemo patient. I hope this helps both those about to enter this fight, those in the midst of the fight,and for those caring for and loving the fighters.

One and DONE!

19 weeks.

19 weeks ago I couldn't have imagined making it - let alone have any idea how it would feel to get to this point. With this Thursday behind me, I will have finished  my chemotherapy for breast cancer. I hope that it has killed the unwelcomed bastard and leaves no trace of it anywhere. That's my hope. and until surgery, that's all I have to go on -  hope.

With my upcoming surgery (scheduled for July 24), we will learn more about what -if anything - is left over from the chemo attack. We will know if the cancer has spread to my lymph nodes - and within that system, traveled to other places within my body - to lay dormant for possibly years before unveiling itself again. Ugh. Now, my worse nightmare - it coming back.

Few know that I've feared breast cancer for some time. Having what's termed as "dense breasts", since as long as I can remember, I've been focused on how they feel, new lumps, and any new soreness that can fluctuate with your monthly cycle and your diet. I gave up soda decades ago after my first scare with a lump that turned out to be nothing. My doctor had mentioned that carbonated beverages (or a lot of it as I was once known to start, fill and complete my day with plenty of diet coke) may increase the risk of breast soreness and or density. That's all I needed to hear - quit cold turkey. I haven't have soda since.

I have always been mindful of my daily "check ins" with my boobs. Making sure there wasn't any weird or different about them. Always mindful of my monthly self-exams. Always faithful to my annual mammograms. Focused like a laser on any odd or strange lump, pain, etc. Sigh…. All to say, check your boobs often and often. If you are going to get cancer (and for reasons unbeknownst to us, some of us get cancer for no reason) you want to be on the early end of this fight. Catch it early!

But here we are. Completing my 19 weeks of chemo for breast cancer. Shortly to be followed by a double mastectomy.

As my chemo day – tomorrow - nears, I get increasingly emotional about all of it. As an athlete often practices visualization as a part of their training to help them prepare for the race ahead - feeling yourself getting thru the tough spots in the course, seeing yourself finish - I have been visualizing the chemo IV being pulled from my medi-port for what I hope is the last time in my life.  I begin to cry. For all the reasons I tried to explain in last week's entry. Both good reasons and sad reasons. This is as much an emotional and physiological fight as it is a physical fight.

I need to see this particular finish line. I need to get there and to see past it. #OneAndDONE

Conflicting Emotions

I have just TWO more chemo treatments to go! I find myself getting increasingly emotional as I get closer to completing the chemotherapy phase of my care. And it’s for various reasons: I am happy this phase of the journey is nearing an end. I don't remember what it feels like to feel normal and healthy. Months of voluntarily dripping poison into my body has resulted in feeling crappy, tired, and "off" 24/7. And has resulted in thinning skin, a bloated body, low energy, no stamina, can't taste anything, and I'm unable to grasp stuff – pick things up - without looking since I can no longer feel my fingers. I'm exhausted mentally from rallying up the courage for each of the 16 rounds of chemo. We haven't traveled or made any plans with friends or family for the past 5 months because my mood and how I feel at any given moment - while generally shitty - can go from bad to worse in minutes. My immune system is virtually non-existent (god-forbid I get any where near a sneezing co-worker). I’m over being bald, too. Of not having nose hairs to keep out the pollen or to stop my nose from running when I eat. Over not having eye lashes to stop the flow of tears when they come. Over looking at myself in the mirror and seeing a cancer patient.

And I am sad: in a weird odd sort of way. I have become all too familiar with the routine of "active treatments". Of seeing the wonderful and caring oncology nurses who greet Liz and me by name and a smile when we arrive to the chemo room, share funny stories as they push the chemo drugs and or change my IV bags - anything to keep my mind off what's happening. I will miss them and my fellow cancer patients, hooked up to our individual IV poles, giving each other a comforting smile - you are not alone. Of feeling as if I'm doing something- anything - to rid my body of cancer. Me showing up every Thursday afternoon is me doing my little part. Once this little part is over - then what? I'm not a passive person by nature.

Well, I still have surgery to get through. I will have a double mastectomy at the end of July. And so now everything has shifted focus on getting me ready for that event. We are waiting on a date for surgery as two schedules for two very busy surgeons must match up – that takes time, or so I’m told. Thankfully – and not surprisingly - my heart has passed its test. As a precaution, I'll have a Doppler ultrasound of my legs next week to establish a baseline in case I experience any blood clotting issues (I don't anticipate any problems but I'm OK with being cautious given my weird history - think Everest Base Camp). Additionally, as a precaution, I will endure a couple of weeks of twice-daily injections of blood thinners post-surgery. And if - god-forbid - there's any remaining cancer, I will may have further surgery and radiation treatments before “SURVIVOR” can be added to my resume.

My life hereafter will involve screenings every three months for the first 3 or so years because my cancer is aggressive, and then maybe spread out to every 6 months for the remainder of my life. I will be forever tied to this horrible disease. And I will be forever changed by this horrible disease – mentally and physically. And, thus, I will be forever a champion of those who fight this disease, in awe of those who survive it, and grateful to those who take care of us.