Tuesday, June 27, 2017

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.

Wednesday, June 21, 2017

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

Wednesday, June 14, 2017

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.

Tuesday, June 6, 2017

Never the less.....

“Persistence”.  I’ve been called (or told I possess) many endearing and formidable characteristics over this past 5 months: brave, courageous, noble, strong, powerful, warrior (my wife’s favorite). To each I am humbled.  But the one characteristic I believe says the most about those who fight cancer is persistent. 

If you don’t have persistence, you don’t get yourself out of bed every morning even though you know your day will be for shit, your body will feel like crap. If you don’t have persistence and no matter what the other side of your brain tells you, you won’t garner the courage to face yet another round of chemotherapy. If you don’t have persistence, you can’t – no matter how you feel about yourself personally or professionally – get up for work, walk the dog, and carry on with the rest of the healthy and functioning world. If you don’t have persistence, you aren’t able to face down your boogeymen – whether they be your fears of re-occurrence in the middle of the night or your fears of becoming a "pre-existing condition" statistic in the middle of the day. Every day in this fight, I have gained, garnered, nurtured, used, and cherished persistence.  I know it has buoyed me throughout my chemotherapy, it will play a crucial role during my surgery and recovery, and it will serve me well as I move into the next phase of my life. Lovingly called my “Option B”.

In other news…..as you may recall, a few weeks ago, I talked a lot about peripheral neuropathy – the numbness of one’s fingers and toes And you may also recall, I starting to develop tingling and now numbness in my fingers a few weeks back. Well, it seems that news has my oncologist concerned. Concerned enough that she decreased the amount of my Taxol by 25%.  Peripheral neuropathy is a known possible side effect of Taxol. Her concern is the numbness that I’m now experiencing (which can worsen up to six months post chemotherapy) may be permanent. She doesn’t seem to be concerned, however,  that in lowering the dosage of Taxol the drug may not do its job of killing cancer cells.  Ugh. Weighing the wonderful options…..It’s hard to button my shirts, tie my shoes, I have no sense of hot and cold on my finger tips and I’m betting I lose my right big toenail before this dance is all over.

I’ve had my follow-up with the cardiologist last week. My heart remains strong and healthy. And we’ve started the process of scheduling my surgery. My oncologist is OK with a surgery time frame that is 3-4 weeks out from my chemo treatment. Enough time for my body and my blood counts to get back to “normal”. So we are aiming for the last week in July or first week in August. Because nothing can be easy in this fight, we must coordinate two surgeons’ schedules. One will cut off my boobs, remove any remaining cancer (god-forbid) and biopsy my sentinel node (more on all that later), and one to put me back together all nice and tidy.  Complicated to be sure. In any event, I was hoping to walk out of my surgeon’s office today with a date, dang it. What’s that about cancer teaching patience?

I never considered myself a persistent person. I am a calm and nice person. Easy-going. Quiet, confident (most times), friendly, intelligent, likeable, perhaps even funny at times. But not necessarily “persistent”.  Cancer has given me “persistent” to add to my repertoire. I will be forever persistent in getting what I need, in saying how I feel, and in facing my demons.

What is that saying: “Never the less, SHE persisted”. Three more chemo treatments to go!