Transformation, turning points and clarity in life.
Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
Be well,
Mr. Wonderful
All You Need Is Love
For spring break in April we visited a friend’s beach house on Buzzards Bay. Originally, we were to visit our happy place in the USVI, but Sarah’s breathing was constricted so badly she could barely walk to the car. She was on supplementary oxygen 24/7 and the amount she needed was increasing weekly. Travel by plane, let alone a trip with a 9 hour flight, followed by taxi, boat and truck rides would have been impossible. Not to mention having to walk up and down almost 200 steps every time you wanted to go to the beach or have a meal. For the fit, it was fun. For Sarah, it would have been hell.
Our dear friends offered their house, and we gladly accepted. It was perfect. Only one flight of stairs. And, with it being less than two hours from our house by car, we could take the kids, the dog, and all we needed for the week. Even a portable oxygen concentrator.
While Sarah slept most afternoons, the kids and I were more adventurous. Kayaking to the playground further down the bay. Visiting the local zoo. Walking the dog down to the point. Or just playing on the beach.
Sarah stayed inside the entire week, never leaving the house. She was comfortable and safe. Reading. Writing. Sleeping. Breathing. She watched her boys through the large picture windows as they ran along the beach, looking for sea glass and shells. Playing with the dog. Enjoying their youth.
We were together. We had this one week to be a family again. Just the four of us. No one else to help, or interrupt. Just us. Together each day and night for meals. Together for reading, playing games, watching movies, talking and snuggling. It was beautiful. We discovered that this vacation was about one simple thing: love.
It gave Sarah the strength to do what she had to do. It gave us the strength we needed for our journey forward.
Before she died, Sarah asked me to write a post called: “All you need is love.” I’ve been thinking about this now for more than two months. In the early days, just after she died, our love was the cause of the deepest pain I have ever felt. Such an incredible sense of loss for me and our boys. But I embraced the pain, accepting that she had reached the end of her amazing voyage. She and I had come to a place of peace long before she died. We knew the destination, just not when we would get there.
Now, the rawness of her death is gone. The deep, searing pain is gone. The frustration and sense of “what now?” has passed. Sarah would be pleased. I’m where she wanted me to be.
What’s left? The good parts of love. The part I remember when she was there by my side. When we held hands. When we ate dinner together as a family. When we would all hold hands and shout out, ONE… TWO… THREE… FAMILY!!!!! The beauty of being a family; it’s a really good, strong feeling that fills my heart every day. It’s not hard – all I have to do is look at our boys. I believe they feel it, too. I can see it in their smiles.
This week, we’re back at our friend’s house on the beach again. I had to work, so Supermom came back up and spent the week with us, taking care of the kids like the champ she is, while I made the long slog in traffic to and from Boston. It’s been really nice having her here. We all miss Sarah, but being here together makes it all okay.
As I think about all this love and how important it has been to our family, it has made me think of Sarah’s friends; OUR friends. So many people have grieved for Sarah and miss her in their own way. Yes, it’s different from how the boys and I miss her, but there are so many who loved her – and for many different reasons.
Over the past months I’ve discovered that different people express their love in different ways. Some send cards. Some make donations. Some call, email or post on FB to say “hi” and see how we’re doing. Some post on Sarah’s or The Carcinista’s FB pages to say they miss her or are thinking of her. Some ask us over for dinner or to spend the weekend with them. Some make things and/or sell things to honor her and make donations to her favorite charities. Some are running and biking great distances to honor her by raising money for cancer research and aid. Many are there for us whenever we need a little boost. And every one of those friends is taking time out of their busy lives to show their love in their own way. What works for them. What makes them feel better. And that’s okay.
So, no matter how love comes or is shown, sarah was right: love is special. It is the power that keeps us together when things get really tough. Sarah’s love will always be a part of our family. And we are glad that we’re able to share a bit of that love with you, too. And glad that you are willing to share a bit of your love for Sarah with us.
All you need is love.
Mr. Wonderful
Things I don’t have to worry about anymore.
Sarah and I sat together on the couch looking at her computer, trying to make sense of things. At the moment, she was in a place of clarity, somewhere between waves of a morphine-induced fog and cancer-induced exhaustion.
“Can I help?” I asked. “What other subjects would you like to write about? You said you had more to write.”
Sentences were shorter now. Not always coming as full thoughts. But this one was clear: “Things I don’t have to worry about anymore.” Her words were dry. I helped her take a sip from her glass of water.
“Okay, I understand.” We had talked about this before, and I knew what she meant.
Her body was weak. Her focus waxed and waned. She couldn’t hold anything up without help. She couldn’t type. But she was still Sarah, with big, beautiful smile and brilliant blue eyes looking out at all of us, surveying what, to her, must have been such an amazing picture of life. Thinking to herself…things I don’t have to worry about.
It was Monday, May 2nd. We knew what was coming. There was no stopping it. There were no more doctors. Just family and friends for support and love. And of course those helpful, pain relieving drugs. None of us wanted this, but we all knew it was reality. As Sarah and I would often say, “It is what it is.” It was as simple as that. And she had come to accept this.
Tuesday, May 3rd. Sarah died. All worries were gone.
Over the years, Sarah and I discussed, sometimes argued, about the things we worry about. Our therapist often helped us with these things. Bringing us to a better place. Better as a couple. Better as lovers. Better as parents. Better as friends.
We talked about worry and stress. What if we just didn’t have to worry? Is this what happens when you die? Worries just disappear? Maybe. Or, maybe we come to a place of peace, knowing that all those things we worry about in life will simply work themselves out – one way or another.
Is this what she meant when she said “I know I’m getting the easy way out?” Since she wouldn’t have to be concerned anymore? Worry would no longer exist?
Sarah may have been a cynic (and who wouldn’t be after five years of ups and downs from cancer, surgeries and chemo?), but I believe she became an optimist toward the end – seeing there really is no reason to worry. That our energy is put to better use in other ways.
So, what does Sarah NOT have to worry about?
1. Cancer and all its crap.
Say it with me: CRAP! CRAP! CRAP!
No more cancer. No more surgery. No more port. No more drugs. No more chemo. No more side effects. No more scans. No more waiting for results. No more wondering about the next treatment or trial – or if there will be a next treatment. No more wigs. No more hair falling out. No more hair growing back in. No more trips to the hospital during the day, nor in the middle of the night. No more oxygen tanks. No more possibility of further organ failures. No more catheters of any kind. No more injections. No more feeling like crap.
For the rest of us, cancer IS still here. Some of our friends are battling now. Some will win. Some may not. But, let’s keep hope alive. Sarah had hope. We can ALL have hope. Let’s not worry. Instead, look for cures. Look for ways to stay healthy. The Feathers will continue to send love and healing thoughts to all friends of The Carcinista who are waging their own war. Please stay well and know that love and caring is all around you.
2. Early Detection of Ovarian Cancer
Clearly NOT something Sarah worried about for herself. She caught it, but late. Really late. And this gave her more and more reason to want others to know the signs. Ovarian cancer is much more treatable in early stages. So, to help Sarah not worry, please spread the word.
Here are the symptoms:
- Bloating
- Pelvic or abdominal pain
- Difficulty eating or feeling full quickly
- Urinary symptoms (urgency or frequency)
Learn more at one of the following: http://www.tealtoes.org/symptoms or http://www.ovationsforthecure.org/aware/aware.php
3. Getting a tan
From an early age, Sarah loved the sun. She loved the beach. Loved the pool. Loved being in her bikini. She called this her “happy place.” And she was the sun goddess – flipping regularly and adjusting straps so not have an uneven tan. When young – before the sunscreen craze – she always had the perfect tan during the summer. More recently, she tanned just enough – but careful about burns. And of course, making sure to get a good dose of Vitamin D.
4. Her daily Diet Coke
Sarah’s favorite drink. Loved it cold. Some said she shouldn’t drink it for a variety of reasons. Her response, “Damn it! If I’m going to cut out everything else “bad” for me, I have to have at least one vice. And so she did.
5. Global Warming
One of Sarah’s many sarcastic comments a few months ago while discussing possible directions for this post: “Since I’m probably going to Hell anyway, global warming doesn’t sound so bad.” Sarah cared a great deal about the environment and global warming. She worried about the future and what will be left for our kids. At least she doesn’t have to worry about it.
6. Wrinkles
Have you seen what the celebrities are doing to themselves these days? Botox and all sorts of other weird things. Sarah was not keen of the idea of wrinkles, but I think she would have taking them, and worn them with pride.
7. Finding the perfect outfit
Being the fashionista she was, Sarah always cared about how she looked. She even dressed up for Chemo. And why not? It made her feel good. I have to wonder what the fashion is in Heaven these days. If togas are in vogue, I’m sure she’ll be sorely disappointed (she already did that in college).
8. Being cold
Sarah was ALWAYS cold. Well, except in the middle of the summer, or on the beach in the Caribbean. But, there was a silver lining. She used to say, in stark contract to her chili side, I was more like a furnace. And this called for lots of snuggling. We kind of balanced each other out – keeping just the right warm.
9. Nap time
The afternoon nap was a cherished time. When we were younger, both working full time, Sarah enjoyed them on weekends. When she began working at home, afternoon naps were an enjoyable part of her day. After having kids, almost essential.
Then, cancer came. Naps were no longer just a “nice” part of the day, they were a necessity. And Sarah did worry about not getting enough. If the kids were anxious and made too much noise, or the dog was being a pain – sleep didn’t happen. If I called from the car on my way home and got a short answer, I knew her sleep had been restless.
But now, I’m sure she’s resting when she wants to, on her favorite beach. It’s warm. There’s a nice breeze. She’s got a great tan. Eyes closed. Sweet dreams dancing in her head.
10. A replacement
Sarah often talked about my “next wife” and how I should find someone just right. She even wanted to help. But, I’m glad this is something she won’t be worrying about. I’m not. If it’s meant to be, I’m sure it’ll happen. If not, that’s fine too. When I met Sarah, I knew she was “the one” just three days after meeting her. And while our relationship was not always perfect (who’s is?), I’d take our 18 years together and enjoy them again in a heartbeat.
PS. If and when I do find someone, there is no possibility of a replacement. Sarah will always be one of a kind.
11. Her three boys
She worried, and she didn’t. She knew we were well prepared and have a great support system. I remember the first time I heard her say something about a support system. It was before our oldest son was born. She wanted to stay on the East Coast because it was close to her family, her support system. This was a foreign term to me at the time, but have grown to love it and all that it means. Our friends and family are truly amazing. I know Sarah is not worried at all.
12. Dust bunnies
There are many parts of life that are just that, life. Dust bunnies and all. So, stop worrying. Make sure you live each day. Take some time to enjoy the little things – and the big things, too.
We miss you Sarah. Thank you for helping us see and know what is important in life.
Love,
- Mr. Wonderful
Oxygen of Life
When “R2D2″ entered Casa Carcinista earlier this year to become a semi-permanent resident, oxygen entered our thoughts in different ways.
For the kids, it was an omnipresent-shiny-tin-can with a funny, 50-foot hose that was stuck up mom’s nose. Sarah’s Star Wars analogy helped them connect with it, and then mostly ignore it. An obstacle at times, the hose became something to trip over – or NOT – as doing so could evoke the wrath of Mommy. Sarah often joked about it with them, helping poke fun at the situation. The boys thought it comical to say “Mommy’s a hoser” or “Mommy, go stick a rubber hose up your nose.” Their laughter always brightened the room.
For me, it was scary. Like a stranger invading our home. An odd, noiseless, motionless machine with a coil of clear hose I could follow, like bread crumbs, to find my wife. Of course, R2D2 wasn’t the invader – just a shiny metal reminder of the real intruder that relentlessly conspired against our now fallen hero.
Ironically, my life has been riddled with oxygen woes as I’ve had asthma since I was 8. Hospitalized twice as a child, I experienced the terror, frustration and difficult struggle of breathing shallow, constricted breaths. But now, as an accomplished athlete with breathing under control, it was incredibly hard to see my dearest friend struggle.
For our hero, The Carcinista, oxygen simply meant: Energy. Function. LIFE. I believe she thought about this often, realizing the significance of the oxygen we all breathe every day. And thus, before she died, she asked me to tell this story about her “oxygen of life.”
On Thursday, April 28, 2011, Sarah put on her beautiful new party dress, ready for a night we had anticipated for more than a month. Our friends, A + S arrived. We loaded three portable oxygen tanks (not taking any chances) and were off to the Colonial Theatre in Boston to spend the evening in the presence of Harry Connick, Jr.
Over the years, Harry’s music had provided a consistent theme in our lives. It began with the first mixed tape Sarah sent me back in 1993. Then at our wedding, we danced a choreographed foxtrot to “She belongs to me.” Toward the end of the 90′s we enjoyed seeing him in concert. Seeing him again in April was special.
Throughout the concert, while Sarah breathed from her oxygen tank, she experienced another “oxygen” as she called it. She said, “music is the oxygen of life for the musician.” Sarah was a talented singer in high school, traveling with her a cappella group – and I suspect she had experienced this feeling even then.
But, this night in April was over-the-top. Harry was on his game; he even remarked, “Y’all are lucky you’re here tonight. You see, I’m feeling really good tonight. And if there was a night I was going to ‘win’ this week, tonight’s the night.” He was playing five shows that week, ours was the third. Maybe he says this every night? Not sure. But, he (and we) definitely “won” that night.
During the show, there was a series of deeply collaborative musical conversations that carried from one instrument to the next. At one point, Harry abandoned the piano, to take in a trombone solo by Lucien Barbarin. As Lucien jammed, Harry began to tap a beat. Then stomp. Then got down on his knees, slapping and sliding his hands and wrists on the floor. The microphone captured the simple, beautiful rhythmic beats as he and Lucien carried on this intimate, delicious conversation. Music flowing, exuding this “oxygen” Sarah described. A musical story was unfolding, conjuring the struggle of the life of the New Orleans musician. Music in their soul. Music as life. Music as the oxygen of their lives. If the rest of the concert could have been the main course, this would have been the dessert to beat all desserts.
After the show, Sarah and I remained in our seats, allowing the majority of the audience to leave. The 20 or so who had “after show” passes were guided to a room. We found an armchair in the corner for Sarah to sit comfortably. A few minutes later, Harry entered the room. Sarah gasped. “Quick, take some photos!” she said.
A life-long dream. A man she had admired for his musical and acting talents, comedic abilities, humanitarianism and more, was no longer on stage, but right there in front of us only a few feet away. Ultimately, Sarah just wanted to have a conversation. To know what it was like to talk for a few minutes about something that mattered to them both.
Harry made his way around the room, talking to one or two at a time. Posing for photos. Signing programs.
Sarah was patient, but anxious.
After ten or fifteen minutes, Harry came to us, and lived up to all of Sarah’s (and my) hopes. He was a perfect gentleman, remaining focused on Sarah the entire time we talked. Sarah ask a few questions and discussed, quickly, her idea about oxygen and music and their importance in life. Harry seemed to pick up what she was saying, and liked the analogy.
She was smitten. I was happy. At this point in her life, physical gifts meant nothing, but this was a gift that meant so much. An amazing night together. And she was able to experience, and cherish what she dubbed “a real LIFE moment.”
We went to bed that night, holding hands as we always did. Both happy. Full of love. We didn’t realize it at the time, but this was our last date. I look back now and just think, wow!
If you have the opportunity to see Harry Connick, Jr. in concert, Sarah would have said, “Do it!” If you don’t, you might still take a moment and listen to a song or two. While you listen, try to take it in. Feel the music in your soul. Breathe the oxygen. Enjoy.
-Mr. Wonderful
Taking The Reins
First, apologies to those of you who were greatly confused by my last post. I lost a few edits in the internets (can’t even blame it on Microsoft!), including the crucial little addition of “Last…” before “…Monday” in the first paragraph. So all of what you read about happened April 11th, not the 18th. Probably the distance from the event helped me look upon it with such a healthy dose of scorn; if it had been this week, my pride might still be wounded.
“So,” you reason, and correctly, “the meeting ‘Thursday’ happened a week ago and change; tell us what happened already!”
The visit itself went very smoothly (although you can bet that SuperMom and I found a wheelchair with a fresh O2 tank right away, and didn’t mess around with using my own portable liquid). If you’re looking for more slapstick fun, you’ll have to check back later and see if I’ve made a fool of myself again. Thursday was quite calm.
I was joined rather quickly by my oncologist, Dr. A, and the Palliative Care/Pain Management specialist, we’ll call him Dr. Feelgood. I asked about other treatment options beyond the Navelbine, and Dr. A mentioned IV Topotecan, which would bring with it the standard side effects of nausea, constipation, diarrhea, and fatigue. I asked about percentage of efficacy, and she told me that there would be a “5-10% chance of any effect” at all on my existing disease, and that “any effect” would mean maybe 1-2 weeks of additional life.
Wow, I thought, doesn’t sound like the teensy weensy percentage of results outweighs the potential of feeling even worse than I do now. What else you got?
“What else is there?” I asked, in proper English.
She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.
So with firm conviction, I said, “Enough. I don’t want any more treatment. If something miraculous-sounding comes up in the Clinical Trials department in the next few weeks and I’m still well enough to get accepted, I’d love to hear about new options, but these choices are not good for me. I’m declining any more treatment.”
Mostly, what I was thinking was that my tolerance levels are pretty low already; if I can barely handle my kids being around me when they get wild today, how will that go when I’m feeling sick and staying in bed because of chemo? I’ll be a royal bitch, that’s how that will go. I’ll have to ask someone to keep them away from me, and that’s NOT how I’m going out.
The percentage of happy is more important to me now than the number of days. Quality over quantity.
Dr. A cried. (!) Mom cried. I cried. Dr. Feelgood laid his therapist “I hear you taking control of your life and it’s a good decision that’s right for you” vibe all over us. There was lots of hugging. Then the fabulous N.P. came in and she cried, Mom cried, and I cried all over again. More hugging. Everyone told me how strongly they supported my decision, how they thought it was the right thing to do.
But for possibly the first time ever, I didn’t feel like I needed validation on my decision (no, seriously, ask my mom). I knew I had made the right choice. I’m TIRED. Tired of feeling rotten, of being stuck in the house, of not being able to do anything for anyone but myself (and even then just barely). I’m tired of switching horses mid-stream every six weeks. If there had been ANY response worth a damn from my lung mets since they showed up in 8/09, I might be more interested in fighting a longer battle. But there hasn’t been, not one. And I’m done.
I love how willing everyone is to pitch in, but I know it’s hard on everyone (especially the intimate family who sees me all the time) to have to carry this load. I want to go out in charge of my life, with a little dignity left. Blackmailing friends into coming to visit by making them bring offerings of Starbucks Chai Latte. Being able to sit at the dinner table and make my kids laugh.
So I’ll certainly keep posting, but from here it might take a slightly different direction. And I’m happy to answer any questions you might have – ask away! But I’m already feeling better without chemo on board, so unless you have a hotline to some pretty powerful folks, I’m going to let it ride.
And I’d love to give appreciation to those of you who envisioned me as a pit bull, one who would grasp at any straw to milk every second out of my life, for my kids’ sakes. Turns out what’s best for them is to have their mom AROUND and PARTICIPATING, not hiding inside all summer and watching their birthday parties on video at the end of the day. So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap.
Today Has Been Brought to you by the Letter ‘I’
‘I’ for “insane”. “Incredible.” “Inconceivable.” “Ican’tbelievethisishappening.”
Last Monday was completely off-the-charts crazy. Let me tell you all about it.
No, wait, it’s way too much. Lemme give you the highlights:
- Awoke at 5:15AM to make 7:00 phlebotomy appointment (say that ten times fast) at The Cancer Factory.
- Finally allowed myself to be wheeled around TCF in a chair, since I had trouble catching my breath after walking up three steps and across a lobby on Saturday night, even with 3 L/min of O2
- Didn’t think to attach nose hose to air tank on wheelchair; stayed connected (for 3+-hour tour) to portable liquid canister that I’d been breathing on since 6:15am. Usually I hook onto a wall nozzle for most of my visit. [NOTE: this is foreshadowing.]
- Navelbine not living up to expectations; i.e., breathing continues to worsen. Please go to radiology for immediate CT scan.
- “Immediate” is a relative term; arrive promptly, but sit-and-wait for two hours. Scan, then return to NP’s office for further instructions.
- A mere 45 minutes later(!), NP finds me to say that scan shows further, millimeters-larger growth of tumors in all areas. No point in continuing Navelbine infusions as they are clearly not working. Please make appointment for Thursday to come back and talk with oncologist about other potential treatments, their side effects and efficacy rates.
- Wheel downstairs, return to parking garage, check out. Turn onto Brookline Avenue to realize my port is still accessed.
- Around block, park at old building drive-up entrance, persuade door guard that Mom can live-park there for five minutes while I dash down to Radiology to have my port de-accessed (remove needle from chest port, left there for cancelled infusion).
- Find available phlebotomist, convince her I don’t need access anymore today, have needle removed. Start to climb (slowly, slowly) spiral staircase from basement to street level. Get winded, stop to rest multiple times. Reach lobby, resting elbows on knees to catch breath in chair; approached by stranger who asks if I’m okay. Tell him I’m just headed to car, and stagger out front door just to realize that my portable tank, on which I’ve been breathing for over 4 hours, is completely empty.
- Collapse in front seat as panic sets in; huffingly tell SuperMom to return to valet in other building and find wheelchair with O2 tank so I can breathe while we go back to clinic to have portable tank refilled for drive home. Total panic; feel tingly all over, nauseated.
- Ticket-gate attendant finishing long chat-up with driver in front of us (as I continue feeling more nauseated and frantic) finally gives us our turn; SuperMom, holding it together nicely while explaining what we need, gets ticket, whips around to valet and tells him to get a chair with a tank NOW (see “Shirley MacLaine, Oscar-winning speech”), while finding me a plastic bag into which I yak my blueberry yogurt (fuchsia pink; poor dude with rescue chair must have thought I was exploding or something) twice. Finally chair dude hooks hose to tank and I’m back on three liters. Mom hands off the keys and we go back up to 10th floor. Emergency passes, and I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. ::Rockstar.::
- On 10th floor, Receptionist pages Respiratory Therapy to come help; Super-tech David gets me hooked up with a higher-caliber portable liquid tank and a complimentary refill that will get me home safely.
- FINALLY leave hospital around 1:30 and get my post-hospital-visit chocolate milkshake by 2:10. Nap by 2:30, feeling like I’ve been run over, backed-up-on, then re-run-over by a sizeable piece of construction equipment. .
Au Bout de Souffle
It’s been an interesting week since I got home from the hospital. Breathing is not better than it was last week, and I still need to rest to catch my breath after changing my shirt, walking down the hall, or visiting the loo in the middle of the night. My medical team keeps exhorting me to give the old-reliable Navelbine a chance to work, that it’ll be at least three cycles (yesterday) and probably four (next Monday) before we start to see results. I’m hanging in there, and trying to keep my inner cynic quiet while twiddling my thumbs.
I’ll have plenty of time to do that, what with my new pain meds keeping me from driving and everything. SuperMom has come to town indefinitely to fill in my gaps…er, gaping holes. I hope that a switch to a Fentanyl patch next week will allow me to drive again, but for now I’m a Roxy-Zombie who’s great at conversation and sleeping, but not much else. Well, except finding pretty patterns in the rug or wallpaper or shadows and clouds.
Another delightful development is that our spring break is taking on a whole new shape. I’d say “I don’t want to talk about it,” but with my acceptance of my path on this journey comes a little peace at changing plans about which I can do nothing. Yesterday, Dr. A told me that she doesn’t feel comfortable with me taking an airline trip anywhere, which, following my last flying fiasco, I completely understand. And I certainly can’t be spending ten days (10!) on St. John at the end of April. No good medical facilities nearby; no liquid oxygen delivery, no emergency aid. Cancel the trip to my happy place — no one wants to go without me unless and until they have no choice.
So instead of flying, we’re looking for a driving vacation, preferably something within a couple of hours’ drive of Boston, justincase. I think we have a couple of good ideas; now we need to start convincing the kids that they’ll have just as much fun in New England in April as they would have had in the Caribbean, a vacation to which we have all been very much looking forward since, oh, the day we left in 2010. They’re good sports, but how much of the rah-rah Kool-Aid will they drink?
The good news is that we’re getting to the stage of my illness when people start coming round to see me all the time. Just for coffee and a chat, but I’m having lots of visitors, people I don’t see nearly as often as I’d like. It’s lovely! They come sit on my couch in the sun, bring me Starbucks, visit, tell stories and make me laugh, then go home just in time for me to take my nap.
Wow, I sound like an old person. Scrabble, anyone? (With all these meds on board, I’m an easy target.)
Hosed
Quickly, before it falls off the current-events list: The Carcinista’s Oscars Red Carpet Review! Who hit, and who missed? Which actor had the worst tux? And, most importantly, how many collagen injections has Nicole Kidman gotten since the Golden Globes? Stay tuned, faithful readers, for the latest…hot…umm…news…
Hmm.
It appears I have missed a few days on the calendar. Where on earth have I been?
Riiiiight, sick. Started last Monday with my crack-of-dawn PleurX catheter insertion, followed by a surprise night admitted to the hospital. They wanted to drain me for 24 hours, then get an X-ray, so I spent the WORST night of recent memory not sleeping for more than 45 minutes at a stretch (roommate fell asleep with TV on; nurse turned it off; finally fell asleep, then shift-change vitals check; took 2 nurses to untangle my hoses so I could go pee, etc. etc.). I swear, those women get paid by the depth of the shade of the dark circles under your eyes the day you leave.
Tuesday I was raring to go home, and after some false starts (and one out-of-order X-ray machine), they sprung me, and Mr. W dragged my carcass home for a nap. Pain was under control with Dilaudid, left lung had been drained; I was tired, but SuperMom was in da house and taking care of business for me. I slept well, ate little, thought I was recuperating.
Went to see my oncologist (Dr. A) for a treatment revision on Thursday morning. Cancel the clinical trial, start chemo again. This time: Navelbine (“nav-” as in “navigate”, “-bine” as in “coffee bean.” It’s Fransh). All members of the team were “go” with the chemo; we’d start on Tuesday, no waiting. Great – I love a plan. Home to rest for the weekend.
I felt so decent (i.e., not in pain) on Saturday morning that I decided it was time to quit the dilaudid. I had started to get twitchy at the end of my four-hour dosing schedule, and I hate that. I thought Tylenol would get me through, with Tylenol PM for the evenings. Ooooh, was I wrong.
I lay awake twitching most of Saturday and Sunday nights, moving from the bed to the couch and back in search of a comfortable position. (I’m a side sleeper, and once my right side gets bored, I usually rotate. Only I had this big hose hanging out, and two incisions. Ow.) I tried propping my left side on pillows; lying flat on my back; lying on my stomach with pillows propping me up. Child’s pose. Happy baby pose. Nothing was comfortable. Not to mention that I felt like I wanted to crawl out of my skin.
Fortunately, when my home nurse arrived on Monday morning, she chided me that it was “way too soon” to stop taking pain meds. Thank heaven. Took a big, fat Vicodin and a three-hour nap. But you can’t take narcotics and drive, so…
…When I arrived at The Cancer Factory for my new chemo on Tuesday morning, I was pain-med free and eager to talk about it. My fantastic NP was so empathetic — the first thing she did was order me a quick-acting (and quick-ending) dose of morphine so I could relax. Then she set up an appointment for next week with the pain-management and palliative-care specialist doctor to work out a plan, which will probably include a Fentanyl patch for 72 hours of continuous relief.
Stop freaking out — “palliative” doesn’t necessarily mean that I’m on the way out; it’s a specialty that focuses on the quality of life of patients with chronic illnesses, and on easing their pain issues as manageably as possible. I can work with this doctor for YEARS.
So, short story long: lung tapped and putting out about 25cc (3 Tbsp.) every other day. Tube uncomfortable, but tolerable with Oxycodone and Tylenol. New chemo is okay (side effects: constipation [woo hoo] and fatigue [oh, yes]); I’ll get it once a week provided my blood counts stay healthy. Dragging the oxygen hose around my house is like a bad Keystone Kops sketch, what with the 50 feet getting wrapped around the dog, the kids, my legs, stuck in doorways and over dresser drawer knobs. And despite advice, I have yet to Beadazzle my Casino Canister (thanks, Pateeta!). Possibly I will wrap it with feather boas. To match each outfit.
And we watch and wait. Hope you’re more patient than I am.
This Is the Droid You’re Looking For
Oh, it’s been an interesting week. I know I’ve been quiet, but I really can’t bring myself to clog the ether with the neck-snapping back-and-forth that leads from one mile marker to the next. Now that the dust is settling, I’ll net it out for you.
Two lung taps; one three weeks ago, one yesterday. Not much fluid, but it made a difference in my breathing. (It sure didn’t improve my blood pressure — the first appointment, I waited over two hours; yesterday — three-and-a-half.) But as soon as I left the hospital last night I started coughing and couldn’t stop; when I called my medical team this morning, they prescribed Cipro against a possible infection, and home O2.
This is an image I’ve been avoiding since I first heard my lungs had metastases: the feeble little cancer patient, stooped and dragging her green canister around with her, unable to do anything. I knew it was out there, somewhen, but didn’t think we’d get there quite so soon.
But vanity must fall to the ability to breathe (and talk — I could barely talk!!!) And so, this afternoon, R2-D2 moved in.
37 liters of fun. And no, it's not a kegerator.
That little beige guy on the right is the portable unit, thank heaven. So I can shop without dropping. Or dragging my little-old-lady tank cart behind me.
I’m now breathing 2 liters per minute of pure oxygen. I suppose I should be grateful — don’t people pay big money for this service in nightclubs all over Scandinavia? I’ll let you know if my wrinkles disappear.
Also, on Monday I’ll be getting a pleurex catheter, a permanent installation between my left ribs with a little catheter that coils up and gets taped to my side. That way, I can drain my OWN lung when it needs it, instead of schlepping downtown and waiting all afternoon. Downside: no swimming. Ugh.
I also might be changing treatments, going back to one of the conventional chemos I haven’t tried yet: navelbiene (I know, it sounds ridiculous) or hexalen. I’m disappointed that my trial isn’t doing a better job; the first six weeks were so promising! I must have MENSA-smart tumor cells, so clever at adaptation that they can outsmart any new therapy within two months. I wish there were an application to take advantage of all this primal smartitude: discovering the key to nuclear fusion, balancing the federal budget, finding Jimmy Hoffa…
…curing cancer…
Am I The Only Cancer Patient In A Hurry?
WARNING: The following blog post contains a fair amount of selfish kvetching.
Last Friday morning, I had a CT scan scheduled for 12:00, which meant I needed to arrive for my delicious contrast (don’t forget to ask for Gastrografin in Crystal Light instead of the thick banana shake!) at 11:00. Now, as frequent readers will surely recognize, this runs into my inviolate naptime of 12:00, which allows me to get up at 2:35, get a parking place in the pickup line, and get my kids when they’re sprung at 3:00.
In the spirit of taking the bull by the horns, I left home at 9:45, which would normally get me to The Cancer Factory by 10:30 – nice and early, in hopes of pushing the whole process forward a little and getting me home for some vestige of my dear, sweet slumber. (It didn’t help that the cat was snoring peacefully under her paw and the furry nap blanket when I left.) Unfortunately, the universe had other plans.
Traffic was a nightmare. Pursuant to our drubbing of snow in the recent weeks, there is nowhere to put it, any of it. Thus people pulling off the interstate were unable to find parking places, meaning surface streets were jammed. As a result, the interstate was jammed, too. FOR EIGHTEEN MILES. So my quick little jaunt in town got me to the radiology department promptly five minutes late for my 11:00 appt. Thus I started my contrast drink at 11:15, and didn’t get my scan until 12:30.
While I sat and sat and sat and sat waiting for my scan, I couldn’t help but notice that not only did everyone else in the waiting room have a friend with them, but they were all placid and peaceful and walking slowly. I, on the other hand, was tapping my foot, looking impatiently down the hall, and checking the time repeatedly (why? So someone would notice and move me up the list? Bitch).
I was starving (and fuming about how I wouldn’t get home until 1:30) by the time I left, but as they’ve recently opened the new treatment building here at TCF, the cafeteria had moved there and it was too far to go for food; I’d have to wait until I got home.
And the people in front of me as I was leaving the building were walking too slowly. And the nice attendant who showed me how to use the new parking pay-station was helpful but clearly not going anywhere. Neither were the parking attendants who made me park FIVE floors underground, even though there were plenty of empty spaces above that. Neither were all the twits who were obviously out for a lunchtime scenic drive as I was trying to get back to the highway.
I know that most cancer patients tend to be older people, often retired, and that they have nothing to do that day but their appointments and possibly some liver ‘n’ onions at the Early Bird Special. I know that cancer patients, whatever their age, are worn-down and tired beyond comprehension. I know it’s uncommon to be a five-year cancer warrior who has to pick up her elementary school kids but sneak home for a nap first. I know that I’ve had a bit of a speed-demon issue (stop laughing) since I first learned how to drive. But seriously, I don’t have time to waste in traffic anymore! I can’t shuffle slowly into the elevator and whistle cheerfully while it hits every. floor. on. the. way. down. My life is SHORT, people, and I think I oughta get a special sticker or a dome light or something, at least a special parking place, to indicate that while I am a cancer patient, I’m also BUSY, and way too cute to be stuck in this hospital any longer.
At least I had a good excuse all lined up for the statie who never pulled me over: CT contrast creates a vigorous urge to be near your home plumbing. NOW.
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Oh, the scan results? STABLE DISEASE. A little fluid around my left lung, but only 10% tumor growth since 12/15. I’ll see a thoracic surgeon in the next 10 days Thursday to see about tapping the fluid, but it appears that the drug is doing SOMETHING. I’ll take it.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
