Caregiving: An Exhaustive Endeavor

Having recently been in the reverse role as a caregiver for just the past 3 weeks, it's given me much food for thought on this subject. Which is why I have been feeling the need to bring this critical aspect of the cancer process to the forefront for another and much needed conversation.

As I reflect back on my primary caregiver over the past 2 years, I have come to realize that because I was in my own living hell of pain, nausea, depression and fear, I couldn't see the signs that my own caregiver who was cracking and breaking right in front of my very own eyes. The only two things I recall when we were halfway through my third breast cancer journey was that she said "I feel like I'm breaking" - so, when my mom came to care for me for a week, my partner Hilary melted in her arms and just started crying as she walked into our home. This should have been a major warning sign for me as she rarely cried. But because I was also crying on my mom's shoulder at the front door, I was in no emotional shape to recognize that Hilary was at the end of her rope and I hadn't even started chemo yet.

Extreme fatigue, fear, depression, hopelessness and many sleepless nights are what she lived with on a daily basis for a year and a half. Fearing what she thought was my imminent death, my partner was barely holding it together and little did I know or recognize this. I could comprehend that it was a tough role to be in, so, I made attempts to rally as many people around me as possible in the hopes of giving her a break: but I can see now that my 'babysitters' as I used to call them, were merely a bandaid on a gaping wound that needed stitches and major wound care. I additionally thought that if I arranged some grown-up 'play dates' for her like walks on the beach with friends, coffee outings, photography events here and there and dinners for us, that it would refuel her and aide in her healing process. But little did I know, she was too far gone by that point.

By the time chemo rolled around, we had already undergone 5 months of biopsies, numerous doctor's appointments, surgeries, second opinions, genetic testing and the whopper of them all, a double mastectomy. Always seeking the silver lining, we were both fooled into thinking that this wouldn't break us in some way or fashion at some point in time, but it did.

Almost 5 months into the black hole of chemo, Hilary had lost 30 pounds and was now wearing a double '00' pant size. She looked beyond exhausted and was commuting and hour-plus to work at a job that was sucking the life out of her. Then one day, she just collapsed on the floor sobbing hysterically at the end of my bed as she was checking in on me. I could hardly believe my own eyes. But, I managed to get myself out of bed, throw on some sweats and drive her to our old doctor who was only working at an urgent care 30 minutes away.

By the time we saw our wonderful doctor after sitting in the waiting room for 2 hours, she took one look at my partner and said "What in the heck is going on with you?!" My partner could hardly speak as she was now just sort of staring off into space, so I jumped in and told our doctor what she had been doing for the past 10 months. Beyond concerned and worried, she ordered Hilary to come back in 2 weeks to check up on her, lectured her to eat more and started her on some much needed meds. Neither one of us had ever taken any anti-depressants before as we were more of the meditate-and-heal-ourselves philosophy, but, she had already hit the wall and it was time to change things up - A LOT!

What we discovered a month later and a second collapse at my bedside, was that hindsight was certainly 20/20. What should have taken place during those 10 months was that we should have arranged more back-up caregiving for my partner. More than we could have ever imagined. And while I was receiving the support and care of so many, little support and caregiving was going to Hilary. Instead, people simply made comments about her weight loss and then immediately focused on me. And while I needed care as well, the person that really could have used some counseling, friendship and support was her! And it wasn't that she didn't have any, she simply didn't have the amped up or authentic level that she truly needed while other 'friends' told her that they 'felt' that I was going to die and that it was my time (insert waiving, angry fists in the air here!!).

Moral of this journey..... pay attention to the caregivers, be choosy about who you surround yourself with, don't be afraid to talk to other caregivers and reach out to a caregiver yourself, because trust me when I say, they won't be able to. It should also be a time when a caregiver visits their own physician to discuss what's on their plate and consider some medical help. And as for counseling, HA - it's an understatement to say that caregivers could use some sage advice and a listening ear from a professional and/or a support group. Heck, we're still in 'cancer counseling' so that we can process the past 2 1/2 years.

On the 'silver lining' side - I'm happy to report that my partner has gained those 30lbs back, is now working for an amazing company with fabulous (normal) people and is smiling once again. We have our weekly Tuesday check-in where we openly and honestly share where we are on this continued journey. But don't get me wrong, we still live with daily fear but it's significantly less now and we continually thank the universe each day for our lives, each other and another day to be grateful for. A new perspective indeed. 

In the end, there are resources (see below) out there for caregivers. And be sure to see what your local cancer center offers as many have several programs for both patients and their caregivers. 

In a nutshell, we are relieved and happy that we survived walking through the fire and are now better versions of ourselves. Thank. You. Universe.

Caregiver Resources:
   Caregiver Action Network 
   Cancer Care
   Cancer.Net
   American Cancer Society
   Rob Cares - Caring for Caregivers

 

Round 3 of Chemo & Halfway There!

Well, as the scorekeeping goes these days, I do believe that so far, this 3rd round of chemo continues to go in my favor. And although I'm only one day out from it, my doc and my team of rock star chemo nurses made this treatment go fairly smoothly. A little tweak of medicine here, using this vein in that arm there and my oncologist giving me more 'free samples' for that nasty nausea, I'm hoping for a winning combination over the next couple of weeks until the next round.

Most importantly, I had my mom by my side which gives me the boost I need and ALWAYS makes me feel my best because I really do need her no matter how old I am! We then kicked Hil out of the chemo room to go take a much needed break and walk on the beach, with our dear friend Julie. Yet another winning combo for Hil so that she could devour some much needed time for herself while my mom was with me for the duration of the treatment. Missing round 2 because she was sick, Ma Barker was able to get herself back to health and up in the saddle again in a few short weeks and made the drive down from Monterey for this round. And although I nearly squeezed her hand off when the nurse struggled to get the needle in my vein, we both came out of it without too much pain and post-infusion injuries.

And the exciting news from yesterday, as everyone reminded me, is that I've made it to my 'halfway mark' with this whole chemo stint, before I'm solely on Herceptin infusions for the next year. Can I get a resounding 'Woot! Woot!' please!

And as you'll see, the day was beautiful here in sunny Santa Barbara as we averted a 'May Gray' day. So, when Hil brought lunch back for all of us, we all stepped outside the chemo room to the side garden and bellied up to a patio table (infusion pole included) and had a lovely lunch. The taste buds cooperated as we had a healthy array of food and a bountiful of yummy snacks while we all debriefed about our day and the past 5 hours. Mom was a great chemo-buddy to have with me and Hil had a fab time with 'Julie-Bunny' and also an impromptu conversation in the lobby with our fave general surgeon, Dr. Grafton. And as always, in her mid-sentence convos, she gave Hil some great insights on the huge demands of being a caregiver and the necessity of taking care of herself. So, two great people for Hil to have support from yesterday. Well three people really, since my mom insisted that Hil hightail it out of there for an overdue chemo-break of her own.

All in all, me and my cancer posse came out of round 3 feeling fairly triumphant and unscathed. Bravo to the three of us as we left feeling a healthy dose of calm and gratitude for yet another step closer to my cure.

Chemo Amnesia? Yes, There is Such a Thing!

HO.LY COW! 


Will someone kindly tell me where the past 7 days went since my first chemo appointment? Because, last I recall, I was walking into a room full of chemo chairs with my good cancer attitude for what I thought would be a breeze of a couple of hours and next thing you know it's April 10th. And from what I can figure out, there seems to be a bit of a gap of time frame between my chemo room greeting the day of -  "Welcome Dee Anne, I'll be your chemo nurse for today" to my new groggy voice and sudden speech impediment of "Hiilllll, whaaat mehciiine canneye taaake noooow?"


Something seems a little fishy, don't you think?

Perhaps I was captured by Oleg, a KGB agent that took me to a shed in the back woods of Tskhinvali, Georgia where I was interrogated for 6 days before being released into the back country without a map. Or maybe, one of the Housewives of the OC slipped me a 'Mickey' in my power juice cocktail after chemo and I passed out until today. Wait, I know, I'm sure my lapse in memory is from the big egg-shaped aliens that took me to their sky vessel for several nights before releasing me back to my earthly bed with a forearm microchip that erased a week's worth of memory.

Whatever the case or ludicrous list of possibilities that are out there, all I know is that since last week's first chemo appointment, my mind and life is one giant blur. And by blur, I mean, I only have snippets of consciousness and recall between April 3, 2012 and April 10, 2012 that occupy my mind and memory. But for sure, I'm positive that both pain and torture were involved during this time frame.

Aside from the usual suspects of side effects of bloody noses, fatigue, nausea, headaches and extreme bone pain, the worst of it came in the middle of the night on day 4. Suddenly, at 1:30 am, and without an ounce of warning, I was awoken by THE.WORST.CASE.OF....you guessed it, Montezuma's Revenge! I'll spare you the wretched details, but let's suffice it to say that 3 hours later, Hil just stuck me in the tub until the Hazmat cleanup was complete and I could safely be tucked away in the guest room for the remainder of the night. Uh huh, humbling.


As for the aftermath that has left me with a gnarly taste in my mouth and throat along with certain words ('breakfast bars') that will be forever banned from any future conversations in.my.life! - I'm now attempting to shift my perspective to matters of importance while living on a diet of jello cups, toast and popsicles.

These days, I continue to find myself desperate to procure happy moments of time that bring me even the most minuscule contrast of light, cheer and peace of mind. Not an easy accomplishment in the face of defeat. Any joyful attempts to repel the pain and misery of the chemo side effects are more than welcomed. 

Recently, I've found pleasure with the small things in life like laying in the dark of night with the windows open so that I can hear the rain dropping down on my backyard patio, having Hil open up the window in the guest bedroom in the afternoon so I could smell fresh air, listening to the sounds of the neighbor boys playing in our driveway after school and eavesdropping on their 20 minute convo about their piggy bank accounts and - repeatedly watching the iPhone videos that my sister and brother-in-law sent me of their trip to Vegas. Hours of entertainment for sure.

On Easter, I found extreme delight in going outside and sitting in the chair that Hil put on our front porch so that I could watch our friends and neighbor’s kids go on their annual egg hunt. And as usual these days, a sweet moment presented itself when my little 5 year old pal next door was so proud to show me his half eaten chocolate egg full of peanut butter along with 2 quarters in his easter basket. 

These, my friends, are the moments to be had in life. Some might say sad, untimely and burdensome, but I say lessons to be learned and time well spent.

Lastly, but most prominent in my mind, is what I have deduced thus far - chemo is indeed a harsh and humbling experience at best. And, without question, I have THE most amazing caregiver on planet earth.


For these reasons today, I say that I am beyond blessed with goodness.

Goodbye to Caregiver #4: Ode to Jane

A few weeks overdue but not forgotten, is my last nod to a caregiver (#4). This time, an ode to Jane (AKA, 'Janie, Jane, Jane'/'JJJ'). The cousin to Caregiver #3 ('Aleesh') whom we have known for many years and are so fortunate to not only call her a dear friend, but we consider her family as well. 

Jane contacted us to volunteer her time and vacation days to drive down from the Bay Area to care for me while Hil went back to work. And at such a pivotal time, Jane came during my first attempt to return to work by taking me to a two-day conference in Santa Barbara after Hil dropped me off the first morning. Then she was off and running with driving me around, juicing, cooking dinners, getting our van smogged and even had time to schedule some play time with Romeo! We talked, napped, laughed, cried and honestly, she just renewed my spirit.

In usual Jane style, she had the calm, loving essence that I so needed during the week that she came. And also in her Jane-Pisces groove, she went with the flow, laughed along the way, and approached her caregiving with the finesse, serenity and peacefulness that was so needed. I have always felt such a sense of tranquility whenever I'm in the presence of Jane which I always treasure. But on the flip side, I never laugh and giggle so much as when I'm around her!

'JJJ' brought a warmth and balance into our home that both Hil and I needed along with a playfulness that was long overdue. Cut from the same cloth as her cousin Aleesh, they both intuitively know what needs to happen and exactly when! And just when I thought I couldn't handle being out, Jane swiftly engaged me in conversations about matters of life that bring me joy like poetry, dogs, travel and creativity.

One of THE most creative and artistic people I know, Jane brought her innovative mindset into our home and left us with the gift of inspiration. So to that Janie, Jane, Jane - I thank you, Hil thanks you and Romeo pants a warm dose of love your way (he still wanders by your room at night and first thing in the morning, looking for his pal Jane! He's so dreamy over you!).

Goodbye to Caregiver #3: ALA!

CLICK ON THE PICTURE TO START THE SLIDESHOW!

Yet again, I had to say another goodbye to a loving caregiver. Seriously, it simply never changes. I still have such a difficult time with the farewells and the parting of the ways. But, it's just how it goes these days.

This time, a dear 'ol friend of Hil's family of nearly 30 years came for a weekly shift. We lovingly call her 'Aleesh' in spite of the fact that her official namesake is Alicia. And fortunately, all three of us have forged an amazing bond and friendship over the years and we are proud to call her our friend/sister/family.

And, of course, when all of 'this' came up, Aleesh immediately cleared her busy professional/work schedule to come down for a 'watch.' 

In usual Aleesh style, my 'Sagittarius Sister' promptly kicked it into high gear the minute she walked through our front door. Big hugs and tears - check. Unpack - check. Change clothes - check. Survey fridge and cabinets for food items - check. Make a menu for the week - check.  Make a list of house items to do and fix - check. Check on my med schedule - check. Re-alphabetize spices - check.

We know these things about Aleesh because we were all roommates 15 years ago. And, because poor Hil had to reside with two OCD, overly-organized Sagittarians (all like-silverware load this way into the dishwasher, coffee items in this cabinet, mail center at the end of the dining room). Poor thing, we still laugh about our 'ways' and give Hil the credit she deserves for putting up with our absurd ways back then.

And there you have it. We all swiftly fell into our familiar routine.

'ALA' (that's Ilocano for 'Hey!' 'Oh God!' 'You've got to be kidding!', etc) became the word of the week and now I can't seem to stop saying it. I even throw my head back or shake it as Aleesh does for additional measure. The dog food lid fell onto the floor - 'ALA!' The phone is ringing and I'm down stairs - 'ALA!' I forgot to text a friend back from last week - 'ALA!' It's just so fitting to so many situations.

But in all seriousness, I have never met someone so selfless, giving, loving & caring. She is tender- hearted and benevolent. She does things for others (and animals) because that's what her heart leads her to do. She is a humanitarian and contributor to all things, animals and people and I can't find the words to thank her enough for her time in caring for me. 

I turned a corner last week - part of that was due to time but I also attribute part of my progress to her. She uplifted my spirit and for that, I am eternally grateful.

ALA! How to say thanks? I just don't know. So again, I simply say 'Thank you dear friend. Enormous gratitude for, well, simply being Aleesh.'

More Goodbyes! OYE!

2 Moms, 3 weeks, 2 goodbyes - enough already! I can't take this anymore! Just when I get used to having a mom in the house, they leave. The nerve of them, getting back to their own lives. And just because Cherie (AKA 'Mama') isn't my biological mom (Hil has claim to her), she's a mom nonetheless. And just as I was resurrecting from the surgical aftermath, she showed up in the nick of time after my mom returned to her own life. Chief cook, dishwashing maven and ruler of the laundry piles, Mama's got some mad caretaking skills. But, mid-week, she fell into the pain abyss alongside Hil and I as the three of us pulled an all-nighter when I spiraled down through the 'breast expander incident' (don't know what else to call that hell-ish episode). And after we all rebounded from THAT (I refuse to say it again!), she quietly and casually returned to her house-attendant responsibilities without missing a beat. So, a big shout-out to Hil's mom, Cherie, Mama, Caretaker Concierge for volunteering her time, her love and her heart! Forever grateful!

Saying Goodbye to My Mom

I don't care how old you are or how independent you are from your parents, we still need them in the toughest and darkest times. So, when it came time for my mom to leave after almost 2 weeks, I just couldn't hold back the tears. I knew she needed to go but plain and simple, I just didn't want to let go of her. She helped nurse me back through one of the most emotionally and physically difficult times of my life. She helped me get up, sit down, changed my drains, propped my pillows, fed me, went to doctor's appointments with me, slept on the couch next to me because I couldn't make it upstairs, gave Hil the breaks she desperately needed, woke up every 2-4 hrs. to check on me, walked me to the bathroom and gave me my medicine. But mainly, she just nurtured and loved me with her constant hugs and sitting next to me even when I was sleeping with just holding my hand. I still shed a tear every day because I miss her so much and am so grateful for her. How can a daughter ever say thank you to a mom for simply being a mom. There are no words to express my gratitude. So for now, I simply say an eternal thank you mom, I love you and I look forward to our nightly Skype chat to say goodnight.