If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.
Hospice is a scary word in the cancer world. At least that’s been my experience. In Cancerland, nothing comes after hospice. That’s it. Game over.
So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat. I know mine did.
For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds. I was there when hospice began for them. And the fact that the start of hospice coincided with the start of their palliative care was not lost on me. So it’s only natural for me to associate one with the other, right?
Things were different years ago. My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer. She suffered with no relief until her poor shiny, wounded head lost its luster. She suffered until hospice started.
The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs. But she suffered until that point. And even afterward because the pain control wasn’t great. It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.
My grandfather’s scenario was different. I’ve blocked out the length of time he actually suffered with lung cancer. I was there, so I should know. But it is too difficult to remember how long the cancer actually took to kill him.
What was different about his experience? When he was ready for hospice, they didn’t come to us. We moved him to a hospice. This was where his palliative care began.
But it only lasted for a day. We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist. The volunteers were warm and comforting and did their best to keep my grandfather pain free. He died that night.
So it’s likely that my ideas about palliative care and hospice are rooted in my experiences. I learned that palliative care was end-of-life care. But this is not true. At least not anymore. So what is it, exactly?
From the Cancer Center’s brochure:
Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness. The goal is to help people live comfortably and to provide the best possible quality of life for patients.
Patients struggling with the uncertainty of serious illness need comprehensive care and support. They need to know they aren’t alone.
What Can You Expect from Palliative Care?
- Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
- Improved ability to carry on with your life
- Improved ability to tolerate medical treatment
- Better understanding of your medical condition and medical choices
Doesn’t sound so bad. Sounds good, actually. So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning. And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team. Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.
I will let you know how it goes… Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.
We shall see… Good night…
Written in response to The Daily Post Challenge
Chubby little fingers grip a wooden banister
He leads her toward a strange basement
She is scared
And for good reason
They reach the bottom and he takes her aside
This is where it happens
Her young mind can’t wrap itself around this
And for good reason
No three-year-old should understand this
But she will one day
And leads her back upstairs
She does what she is told
He is her dad, after all
He takes her to the pony rides on the way home
This will wash the dirty memories away
That’s what he thinks, at least
But he is wrong
I will always have the dirty memories
If you’d like to respond to a Daily Post Daily Prompt, click here:
Well, I have returned from my first adventure…but things have been far too hectic and I have been far too exhausted (and ill with cellulitis) to write about the experience yet. But it is a post I am looking forward to sharing! In the meantime, I thought I would return with a photo challenge post. Thank you so much for all of the likes and comments on my last post — and for being there to cheer me on…
These may not be the greatest photos, but to me, they are wonderful representations of this week’s photo challenge topic, “love.”
There were many contenders, but I am far too tired to add them all (and I don’t want to bore you!), so here are just a few. I may come back to add more at a later date…
Thank you for reading!
It was Christmas and my littlest sister decided that after all of my chemo and surgeries, the best gift she could give me would be a little companion to help me weather the remainder of my cancer treatments. So she chose this sweet little mini dachshund and presented her to me with a red ribbon around her furry little body. Ginger has spent many hours snuggling with me and giving me comfort in the two years we have been together. And she is a wonderful reminder of the special kind of love sisters sometimes share.
Another Christmas photo… I was sick and so tired. And my sweet miniature schnauzer, Mattie, snuggled up next to me. I had so much to do to get ready for a busy day of making our Christmas rounds that day, but I couldn’t resist the opportunity to lay there with my special girl. And I am so glad that I did because she died suddenly of cancer a couple of months later. She loved me unconditionally and I miss her as much today as I did when she first died.
And my boys…
Weekly Photo Challenge: Love
If you would like to participate in The Daily Post’s Weekly Photo Challenge:
I missed last week’s photo challenge, but when I saw this week’s topic, I had to pull out my old photo albums.
The photos you see here embody my New Year’s resolution for 2013. What is it?
***To appreciate that life is sometimes too short — and to fulfill some of my bucket list wishes.***
The photos I’ve chosen are from a defining point in my life. Why was this little window of time, this blip in my life, so special that I feel the need to highlight it here?
Because the girl in the photos with me is my friend Julie. She was one of my very best friends growing up. I loved her like a sister. We laughed together, cried together and reached many a milestone together.
These photos of Julie and me are from a once-in-a-lifetime trip we took together. I know, I know, people say “once-in-a-lifetime” but they don’t always know that for sure. Sometimes they just say this to be dramatic.
But I am saying it because I know it is true. I know that Julie and I will never take another trip together. In fact, we will never laugh or cry or meet another milestone together again. Ever.
Because Julie is dead. She was killed in a car accident 5 years ago when we were just 31.
It still takes my breath away when I remember that she is really gone, but I often find myself smiling as I think of the time we spent together.
Though Julie’s death was tragic and horribly sad, her life was the opposite. Julie exuded warmth and beauty. She was positive and sweet and lived her life to the fullest. She was courageous and didn’t let anything stand in her way…
…including me. You see, I didn’t want to go on that trip. I had never done anything like that before. I wasn’t adventurous. I didn’t think I deserved the opportunity to get on a plane.
It was about a month before our high school graduation when Julie proposed the idea. Her exchange student for our senior year, now like our new sister, would be returning home to Mexico just after graduation. What if we went to Mexico to stay with her over the summer?
I was not the adventurous type and I opted to stay home and work until we started college in August. Plus, I needed to be home to help care for my little sisters. And I had never done anything just for me before. How could I start with something so drastic? No, I would not go.
But it wasn’t really up to me. Julie would not listen to my protests. She jokingly threatened to unfriend me (we had been very good friends since we were kids) if I didn’t commit to going. She said she knew what was best for me (and I admit that she often did). So, on one of the many evenings I spent at her house, she made a final plea. Again I refused. We were munching on her delicious homemade chocolate chip cookies when she picked up the phone and called the airline (this was before you could use the internet to book your tickets). She pretended to be me and booked my tickets while I stood in her kitchen. Though I halfheartedly protested and though I feigned anger, I was secretly delighted. I knew I would enjoy this special time with Julie. And I knew I was going to miss Judy (her exchange student), who was now a dear friend and that this was my chance to see where she lived and to say a real goodbye.
This was going to be my first real adventure, my first and last hurrah before heading off to university (20 minutes away – another story!) in the fall.
So we graduated from high school, Judy left for her home in Mexico, and we embarked on our adventure 8 days later. Before stepping off the plane in Tucson (and driving the 4 hours across the border to our friend’s house), I had been a shy straight-A student who hung out in the teachers’ lounge after school because I could always relate better to people older than me. Between sophomore & senior year, I took every single Advanced Placement class (and there were a lot!) our high school had to offer — and aced them all. I was voted “Class Introvert” and could get A’s on Calculus tests without studying. I thought A.P. Physics and Chemistry were fun. I had been babysitting since I was eight and got my first “real” job the moment I was old enough to get a work permit. I balanced school and mountains of homework with two afterschool/weekend jobs. I volunteered a ton — you name a volunteer activity and Julie, jme and I signed up for it. I had a resume filled with achievements. I had a full scholarship to Cornell University and scholarships to a number of other prominent schools for Engineering or Biochemistry/Pre-Med waiting for me and I had every intention of continuing to be that people-pleasing, old-before-my-time nerdy girl…
I thought that maybe before college I would do something crazy like cut my long hair or start wearing lipstick. I had no idea how this trip was going to change me.
It was an incredible 3 weeks. Because Julie and I were staying with Judy and her family, we “lived” in the heart of a non-touristy part of Mexico where I was the only person with blondish hair for many, many miles. We got a taste of what it was like to grow up there. What an amazing way to see another culture. Our many adventures included a 28 hour (total) roundtrip escapade on an old, steamy, smelly, jam-packed bus. We were headed to see another friend (Juan–also a former exchange student) in Mazatlan. The bus trip came complete with dirt roads, middle of the night stops by gun-toting “bandits” in the midst of nowhere, and people who were so scary that we slept in shifts because there had been a number of recent American kidnappings on buses just like ours. As the only Americans who had probably set foot on our bus in a very long time, we figured we were targets, which made it that much more exciting for my friends (and nerve-wracking for straight-laced me). When we stumbled off the bus, though, I realized that it was all worth it. The area was the most beautiful place I had ever seen. The days were amazing — swimming in the ocean, drinking pina coladas in the pool, parasailing and so much more — things I never dreamed I’d be doing.
And the nights were even more incredible. More things I never dreamed I’d do. All of a sudden quiet, shy me who hadn’t really dated much was dancing on tables at these gorgeous open air bars, forgetting about all of the responsibilities waiting for me back home, and getting kissed by older guys in their 20s (Mexicans & Americans alike) who could have stepped off movie sets or off the pages of GQ.
On the bus ride back to Judy’s city, I felt like a new person… All of a sudden I had gone from being a cornerstone on the math team to someone who had 25 year-olds competing to spend a few minutes on the dance floor with her. It was fascinating and exciting.
Our next stop was a lovely little town on the Gulf with mountains in the background. Here we had more adventures with sangria, late-night swims, and mechanical bull-riding. Then Julie’s older brother (who was in a band & lived in San Francisco) asked us to take a couple of days out of our Mexican adventure to come to see him. Julie hadn’t seen her brother in a while and she had a huge crush on his roommate, so it was a quick yes from her. All we had to do was drive to San Diego & he’d have tickets waiting for us at the airport. Along the way we stopped to visit Judy’s cousins in Tecate (right next to the Tecate beer factory) for another wonderful night filled with yummy food & drinks and happy people. No matter where we went (with the exception of on that bus to/from Mazatlan), I never heard a word of complaint or saw a frown. Regardless of what everyone did or didn’t have, the people we met/lived with were warm, welcoming, generous, and positive.
Even the drive up to the U.S. was an adventure. And then we were off to San Francisco, a place I had always wanted to visit. We didn’t do anything too exciting, but even a trip to the grocery store was fun with Julie. And, as it happened, the roommate guy she had a crush on actually “liked” me. Julie was very gracious about it and happily let me have my moment with him. He was 25 and an engineer on a big naval ship — the U.S.S. Abraham Lincoln. Though he was quite handsome, he was nerdy like me & we were instantly drawn to each other. It was odd for me to realize that I had spent my teenage years feeling awkward and burying my nose in books — and all I had to do was take my hair out of my ponytail and throw a pair of jeans on (and talk to people 7 or 8 years older than me!) and voila… Eric and I stayed up all night every night talking. And then we all spent the days together seeing the sights. It was a total departure from the “me” I knew, someone who had only had a few high school boys show any interest in her. [Eric continued to send letters & call me (and my mother!) for years after this trip.]
Before I knew it, Julie, Judy & I were flying back down to San Diego and driving back into Mexico… And shortly afterward, we made the long trek back to Arizona to catch our plane. Judy’s family had a condo near the airport, so we spent one last night there — the 3 of us girls — laughing, talking & drinking more sangria in the hot tub (I hadn’t even been in a hot tub (or a condo for that matter!) before). It was a wonderful way to end our trip.
That summer was — and remains — the best of my life. After that I started college as a new person. Still the old nerdy straight-A student who loved math on the inside, but with a new look and a newfound confidence on the outside. I was always so grateful to Julie for that and so many things.
That trip was the last time I saw Judy… Until 5 years ago — for Julie’s funeral. Julie was killed by a drunk driver in Spain, a country she loved so much. The special young man she loved survived, but he was seriously injured — and he had lost the love of his life right before his eyes. I was no stranger to loss or tragedy, but this was beyond anything I could wrap my mind around. When jme, who had grown up with Julie from the age of 3, phoned to tell me what had happened, it was an absolutely heartbreaking call. Jme got on a plane to come back home from Seattle. And Judy flew from Mexico to stay at my house so we could be together to bury our dear friend…
Though her life was short, Julie’s impact was great. She made everyone feel special and she touched lives here and across the Atlantic in deep and lasting ways. The world was a far better place because she was in it.
So, this year I resolve to be more like Julie. I resolve to check some things off my bucket list (and to make a bucket list). I resolve to just “go for it” more. I resolve to work on living my life to the fullest (I’m sure it will take me a while to get there, but I vow to work on it). And I plan to honor her memory by trying to find and nurture the little light that she saw inside of me when we were just girls on the edge of new beginnings.
In Memory of Beautiful Julie – 1976 – 2007
Weekly Photo Challenge: Resolved
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It was April 12, 2012. It was the anniversary of terrible surprises.
I won’t name them all. Just a few.
It was the anniversary of the day I was certain that my unborn babies and I would die in the hospital. It was the day after Easter. I had been hospitalized with preeclampsia since the week before when I had gone to my check-up and was told that I needed an emergency induction. I was sent next door to the “best” hospital in our region. The hospital with the Level III NICU. The hospital that people traveled across counties and hundreds of miles for. I had been in active, induced labor for 4 days by April 12, 2004. By then, the preeclampsia had become severe. I was so sick. I was shaking. I was bleeding (from a yet-to-be diagnosed placental abruption). I was being pumped with high doses of pitocin to keep me in active labor — and competing doses of magnesium sulfate because my blood pressures were so dangerously high. And I had gained an inconceivable almost 100 lbs in edema weight since my admission into the hospital. My organs were shutting down. I was hearing Christmas music when there was no sound. I was dying. And my babies were, too.
Fast forward to April 12, 2005. One year later. Two days before my babies’ 1st birthdays. The day the woman who was like a second mother to me took her life… a woman who also had breast cancer young (but for her, her diagnosis came in her 40’s)… a woman who was also the mother of one of my two very best childhood friends. I had known her for what felt like my whole life. I had lived with her during a rough patch in my life. And now she lived around the corner from me in a house matching mine. And she had reached out to me and asked me to spend more time with her…but I was so wrapped up in my own traumas and exhaustion that I didn’t see her as much as I should have. I thought there would be more time. And then the call came on April 12 that I was too late. We all were.
And fast forward ahead again to April 12, 2010. This was the day before I learned for sure that I had breast cancer. Nuff said.
I had to put these difficult/horrible memories the back burner because April 12, 2012 was 2 days before my twin sons’ birthdays. It was also their Spring Recess from elementary school. So we wanted to do something special and make some happy memories for their birthdays.
We packed up the car the day before and set our sights on Philadelphia. I never been there, but we had free passes for the nearby Adventure Aquarium in Camden, NJ. Since it was “only” about an 8 hour drive and we had heard the aquarium was something special, we couldn’t pass the opportunity up.
April 12, 2012. After a struggle with traffic and an almost unsuccessful quest to find cheap parking, we arrived at the aquarium much later than I had planned.
And I was already exhausted. You see, only a couple of weeks before I was lying in an operating room while my gynecologic oncologist was performing a radical hysterectomy and oopherectomy on me. I was 35 and wanted another baby. But what all of the breast cancer crap would have made unwise and extremely difficult, large masses that we were all certain would come back as ovarian and pelvic metastasis, made perfectly impossible.
It was when I was handed a map at the admission desk that I first saw it. There was something special going on today. At precisely something-o’clock (I don’t remember when the something was!), a few lucky aquarium goers would be selected from the crowd for a special stingray encounter. Now this wasn’t your average aquarium encounter. This was an opportunity to wade into the large stingray pool to hand-feed the rays!
I was determined to be one of the lucky few.
But there were a few major issues with my plan.
- My plan wasn’t a plan.
- I generally don’t win things.
- The place was packed. And I mean packed. Everyone with kids on Spring Break clearly had the same idea as we did. It seemed like the whole east coast was in the aquarium. There was no way I would be able to get anywhere near the stingray tank, let alone in it.
Nevertheless, I told my husband and my boys that I would be in that tank that afternoon. My husband told me to give it up. There was no way. So we visited the other exhibits and made our way through the aquarium. We were looking at the hippos in a giant tank filled with hippos, fish and hippo poo when I said, “Oh no, it’s 5 minutes til something-o’clock!”
Unable to run because of the surgery and my post-chemo fatigue, I asked my husband to push me over to the exhibit, an exhibit located almost all the way over on the opposite side of the aquarium. He told me that it was impossible to get there in 5 minutes and that even if I did, I would never get near the tank and I would certainly never be chosen.
No matter. I called in all of my favors and groveled, something I never ever never do with him. I was determined. So we weaved in and out of the crowds and crowds of people and finally made our way around after what felt like an eternity. When we arrived near the entrance of the giant stingray room and pool, I emerged from the wheelchair and we left it outside. I walked into a densely packed room filled with children and adults alike. It was chaos.
And we were late. They were asking the audience 4 questions. 4 people who were given the opportunity to answer the questions and who answered correctly would be invited into the tank. The selection process had already begun. I had already missed question 1.
Question 2 came and at least 50 hands shot up in a crowd of many more than that. The tank-keeper wouldn’t even see me. She selected a child in front and, with the assistance of her dad, the girl gave the correct answer. Question 2 came. 50 or 60 more hands. She chose a teenager in front who also answered correctly.
The final question came. “What kind of seastar is this?” I knew the answer. My hand shot up with about 1,000 others. She asked a child. Wrong answer. She asked an adult. Wrong answer. I was so buried in the crowd that she would never see me.
But then she pointed in my direction. “The young lady with the longish red-brown hair.”
“Oh, that’s not me,” I thought. “I have ugly short not red-brown ‘I’ve had lots of chemo’ hair.”
But then I remembered that I was wearing my lovely wig. It was me. She was asking me. “A chocolate chip seastar,” I shouted!
It was the right answer and I was invited to come out of the crowd to get ready for my encounter.
It was incredible. I changed out of my winter boots and into the crocs they offered me and we walked up the ramp to be debriefed. We would be given dead fish parts to hold between our fingers and the rays would glide across our hands and take the carcasses into their mouths.
I could barely contain my excitement. I had never done anything like this before.
So I waded into the tank and began feeding these beautiful creatures. It was an incredible experience. And I made a new friend, a giant ray who seemed to want to climb into my lap like one of my dogs. He didn’t take the food from me, but let me pet him as he slid up my shins and splashed me.
When it was over and we were washing our feet off and changing our shoes in the little prep room, I was so overwhelmed with the beauty of the experience that I felt the need to say something to the tank’s keeper.
I told her that I was surprised to have been chosen. Shocked, actually. I told her that this was such a special experience for me because for the past 2 years I had been battling breast cancer. She told me that I was so young and she gave me a hug. She said that she was a 10 year breast cancer survivor. She said that though they caught hers early, she still looks over her shoulder, wondering if it will return. But she said that it also makes her grateful for every day that she is here.
I thanked her with tears in my eyes and we parted. She felt good about her choice. And I felt grateful for this once in a lifetime opportunity to wade with the stingrays.
Weekly Photo Challenge: Surprise
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Still need to order your holiday photo cards, greeting cards or invitations? Here’s an amazing deal:
Place your order before 11:59 p.m. ET on 12/17 and you will not only receive FREE Standard Shipping (through USPS), but you will also receive 70% off your photo card order. AND, like I did, you could choose to have CardStore.com address, stamp (with a 1st class stamp!) and mail your cards on your behalf for no charge (THE STAMP IS EVEN FREE)!!!
This is a PHENOMENAL deal! I ended up paying $0.24 each for my 4″ x 8″ holiday photo cards — printed, addressed and stamped! All for less than the cost of a 1st class stamp (did I mention that the stamp was free?)!
Of course I did order a “value” design (because “Value” is my middle name — well, not really!) and didn’t have the 1,000 card choice options I’m accustomed to each year, but for $13 for 55 photo cards, stamped and mailed, I didn’t mind. And even if you choose to class it up a bit more with a Signature or Premium card, this is still a terrific deal!
My cards were also so cheap because I ordered 55 and received a quantity discount. I’m not sure how many cards push you into the “quantity” range — and I’m too tired to test it. But the prices are still low, even without an added discount. The drawback? They say that the cards should reach my recipients on or before 12/22. A little late by most people’s standards, but still before Christmas. And had I found the deal and ordered sooner, this would have been a non-issue. But I’m so exhausted all the time & we just got our tree this week & didn’t take our traditional “under the tree” photo until Thursday, so I’m trying not to chastise myself too much!
Celebrating Kwanzaa? Their Kwanzaa card selection is also governed by the same deals. Season’s Greetings cards, too.
And, hey, these are such a great deal that you could make New Year’s cards or invitations and be an early bird with them!
Here’s the breakdown of my order:
55 “Value Design” 4″ x 8″ photo cards (flat)
- Each card is Printed, Addressed (my return address and the recipient’s address), Stamped (FREE) and Mailed to my individual recipients!
Cards: $1.09 each LESS quantity discount LESS 70% off ALL Holiday Photo Cards, Greeting Cards or Invitations = $0.24 each!
Grand Total: $13.03 including 55 stamps!
So, design away! Just be sure to place your order before 11:59 p.m. ET Monday night to take advantage of all of the discounts. I’ll include some links below to help you get started.
P.S. They even include a fancy schmancy Excel spreadsheet template you can use if you don’t want to individually add addresses on their web site. Login, go to “All You” and click “Address Book.” Fill in your addresses and when you are ready to order your cards, just import the spreadsheet and, voila, you’ll see all of your addresses there.
P.P.S. I am in NO way affiliated with CardStore.com. I just found them this morning and am using them for the very first time (in lieu of spending more and ordering from “big-box” stores like I usually do).
The 70% off Holiday Cards code: CCP2147 — Be sure to enter it at checkout!!! Expires 12/17 11:59 p.m. ET
Free Standard Shipping or Free Stamps code — There isn’t one, just order by 12/31
Christmas Value cards link: http://www.cardstore.com/shop/christmas/cards/bargain
Kwanzaa cards link (No “value” option): http://www.cardstore.com/shop/kwanzaa
New Year’s cards link: http://www.cardstore.com/shop/new-years
Season’s Greetings Value cards link: http://www.cardstore.com/shop/seasons-greetings/bargain