Ticket to Ride
On Cathedral of Junk throne
What a trip!
What was going to be a simple trip to witness my youngest son Josh graduating from college turned into an astonishing foodie and walking tour of Austin, TX and a meeting of some fabulous people who will become part of my extended family.
Greeting me at the Austin, TX airport were Josh and his lovely fiancee Jessica. The fact that I, a Stage IV cancer queen, was even able to fly with a stopover in San Diego was quite the accomplishment. The plane to Austin was delayed for two hours, but I entertained myself with my iPod Touch and with getting up periodically to circulate and buy snacks. I’m supposed to eat every two hours because my body no longer tells me, “I’m hungry.” I just have to guess at it. Unfortunately the food selections were vastly limited because the gate area was being remodeled. Still, it was worth the wait to arrive in Austin to see two familiar smiling faces as the sun sank to the horizon.
When we arrived at Jessica’s parents’ house, her Dad was there to greet us, along with her frisky dog Mac. All Mac demanded of me was to throw a ball so he could retrieve it. He lived for those very moments. After a scrumptious homemade dinner (something I would never make for myself, living alone), we played the game “Ticket to Ride.” Although Jessica had both the Europe and US versions of the game, she had me learn using the US one. I lost miserably, but no matter. I did get a ticket to ride. I thought. I’m here and I’m feeling like part of the family already.
The next day we rose bright and early so we could head to IKEA. Many people can’t believe I’ve never been to an IKEA store, but until this time, it was true. There are none close to where I live. The selection and arrangements of the furniture were overwhelming. One could go crazy in a superstore like that! After walking around for an hour and a half, which passed far too quickly, we gathered in the car to prepare for the remainder of the day.
After a satisfying vegan lunch of homemade fajitas, followed by my eating two peanut-butter-laden dates for calories, we headed up to Waco to arrive the evening before Josh’s graduation from Baylor University. The following morning Jessica and Josh treated me to a brunch at Cafe Cappuccino, which lives up to its name. The graduation itself was inside a stadium, a big relief from the heat and humidity. This Mom couldn’t have been more proud of her son’s accomplishments as he strode across the stage to receive his well earned diploma, summa cum laude.
Proud Mom with Josh and Jessica on his special day
Later that evening we celebrated at a local Thai restaurant. Spring rolls and Thai delicacies abounded. Josh had to drive up to Nashville early the following morning, so he said goodbye to me that night. A bittersweet parting.
The next morning we returned to Austin. For lunch Jessica and I headed to Kerbey Lane Cafe, a vegan-friendly place with lots of good vibes. Afterward we visited the famed Cathedral of Junk. How fabulous it was to sit on the throne and enjoy the work of this talented yardist! Exploring various colored rooms was especially intriguing. We then drove back to her parents’ house where I met her Mom, swam, and hung out in their hot tub for two hours while Mac urged me to keep throwing his ruined ball over and over. We enjoyed Chinese takeout and a rented movie before retiring to bed. As I drifted off to sleep, I wondered about whether I would have the energy to see half the sights we hoped to see on the morrow.
I shouldn’t have worried.
The next day my ticket to ride continued as Jessica and I explored shops and savored lunch at FoodHeads Cafe and Catering with a friend of a friend. Then of course we had to visit Amy’s Ice Cream shop, a standout in local Austin culture. Completely full, we headed out to Red Bud Isle, a park where pet owners take their treasured animals off the leash to wander the paths and splash in the water. This spit of land extends into Lake Austin, providing a scenic backdrop to the whole park. Afterward we shared an iced chai at Mozart’s Coffee Roasters on the lake as we read our books on the decking overlooking the marina.
Next stop? The world headquarters of Whole Foods in downtown Austin. We secured our takeout of sushi, grapes, soup and sandwiches and headed up to Mt. Bonnell, Austin’s highest point. An empty picnic table beckoned us at the summit so we could sit and eat while taking in the skyscape that is downtown Austin. Jessica was amazed that I could climb and descend the steps without any trouble and at how much energy I had in reserve. It was truly remarkable–a miracle, in fact. Afterward, we came back to the house, happy and ready to lounge around.
Jan at Mt. Bonnell
The next day I flew out to go back for treatment, which is at a facility about a four-hour drive from my home. I couldn’t miss the treatment, but I did miss the hospitality of that magical capitol of Texas. How is it one can feel the empty-nest syndrome even away from home? The therapy completed, I drove myself to my empty nest in the suburbs, knowing that I will plan a return visit, at least for the wedding.
This was a ticket to ride to remember. And unlike the Beatles’ lyrics, I DO care. I really do.
The Balancing Act
A balancing act. The challenge of all Stage IV cancer patients.
How do we balance quality of life against quantity of life? How much treatment are we willing to endure to prevent the cancer from starting to grow again?
I am now off taxol, that traditional chemotherapy for breast cancer that can do a number systemically on all cells. I’m still suffering from fatigue and neuropathy in my limbs and digits. Loss of appetite plagues me. And some other effects that it pains me to enumerate.
Each day I wake up determined to do something productive in the morning, because by mid-afternoon I am ready to veg out in front of the flickering screen of images and sounds designed to entertain. What can I get done? Perhaps scan some old photos into my computer and reminisce about the good ole days. Or reach out to prune or reach down to yank weeds in the front lawn so the neighbors don’t wonder why this woman who looks so healthy can’t keep up a perfect-looking landscape. Or maybe do laundry and clean up a few rooms that I use regularly.
I occasionally attempt to make a soup, which may or may not be a smash hit with my taste buds.
The most soothing things I do now are to play ukulele and read or watch DVDs in bed. Or, as happened the other day, accept an invitation from a friend inviting me to a church party. I wasn’t planning to come to this event as there might be limited seating or the food might not agree with me. There is always some excuse not to attend a function, especially in the evening when I am at my worst. But I am so glad I agreed to accept her challenge. The laughter, the seating that God provided out on the restaurant patio where the weather was perfect, the band that played all the oldies I could sing along to, the dancing (at least my watching it), the small talk, having the guitarist come over during the break and sit right down next to me. What a trip!
Yes, I do resemble a clown in the circus. I can just hear the hawking: “Come see the skinny lady manage the tightrope act with no safety net!” Yet, in many ways I do have a net in case I fall. The safety of friends, including one who puts me up and puts up with me when I have to go to the hospital every three weeks and others who invite me to their homes or other places, and the safety of my faith.
At least for now when the sun wakes me up I get up out of bed on legs and arms that can move, get dressed, and scrounge out a minimally appetizing meal even though I’m not hungry. The continual side effects definitely present a challenge, an adjustment, even a game changer. But so far, it’s worth getting up each morning to make a difference, if not in my own life, then in someone else’s.
Do you have activities that keep you motivated and make you feel alive?
The most reassuring things I heard when my parent got cancer
Today I am featuring a guest post by Maya Silver about what it’s like to have a parent diagnosed with cancer. Maya Silver is the co-author (with her dad, Marc) of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have been diagnosed with cancer. She lives in Crested Butte, Colorado, where she works as the executive director of the Office for Resource Efficiency and plays in the mountains. She won the Diane Vreuls Fiction Prize at Oberlin College in 2008 and has written for U.S. News & World Report and the Washington Post Express.
As a parent myself with cancer, I am proud to feature the point of view of the child.
Marc and Maya Silver
Cancer inevitably causes anyone directly or indirectly affected by it to suffer through difficult emotions. Teens who have a parent with cancer experience fear, sadness and helplessness. They worry. They feel guilt. They hide anger. It’s an uncomfortable time, to say the least.
I was 15 when my mom was diagnosed with breast cancer. The news immediately released a flash flood of anxious thinking. It’s easy to get carried away in a downward spiral of “what ifs.” One fleeting fear is reinforced by a random story you find online or hear from a friend and begins to take on a life of its own.
I didn’t hear many reassuring things during my mom’s battle with cancer because I rarely sought out support. My answer to friends’ inquiries about how my mom, my family and I were doing was a curt “fine,” followed by a strategic change in topic. My parents and I elected not to tell my teachers or guidance counselors. I never saw a therapist or visited a support group.
The most soothing thing in my mind was the answer to my most important question: “Will Mom be okay?” aka “What are her odds of survival?” I can’t remember when I asked my parents this question but it must have been shortly after they broke the news to me and my younger sister, Daniela, who was 12 years old at the time. They picked us up from school, turned to the back seat and revealed the news.
We were lucky – I knew that then and I know that even more so now. The answer to my question of survival was a resounding “yes, probably.” In some ways, the knowledge that my mom probably wouldn’t die enabled me to avoid dealing with it directly. I didn’t have to view each day as the possible last. I could more or less banish the dread of a mom-less world from my mind. I could go on with my life.
Anytime I saw my mom, fresh from a chemo round – bald, pale, exhausted, sick – I could swallow my distress with the calming conviction that this was all temporary. Surely, she would be healthy and cancer-free again soon. When I was at a party or a friend’s house, a nagging voice of guilt would often creep up to scold me for not being at home where I could support and spend time with my mom. I could quiet this voice with the rebuttal that my mom wasn’t going anywhere and I didn’t need to treasure final years, months or days.
While the confident belief that my mom would be fine was incredibly reassuring, it also led me to be less supportive and present than I should have been. A small part of me wishes that my teenaged self would have been less certain that everything indeed would be okay so that I would have been a better daughter and forced to deal with the experience in a more confrontational manner.
For My Parent Has Cancer and It Really Sucks (Sourcebooks, 2013) – a guide my father and I wrote for teens whose parents have cancer – we interviewed over 100 teens and experts. Here are a few of the reassuring sentiments that provided many of these teens with solace:
- Just because mom or dad has cancer, it doesn’t mean you will get cancer. Only 5-10% of cancer cases are genetic.
- Your mom or dad probably didn’t get cancer for a specific reason or because they did something wrong. Bad things happen to good people.
You don’t need to be a teen angel. You can still keep living your life. You can still talk to your family about school and friends. You can still get mad at mom and dad.
Adjusting to Life Anew
“You Can’t Go Home Again.” In his novel of that title, published posthumously in 1940, Thomas Wolfe exposed a community that shunned its hometown author. Taken in a different context, this message certainly is one I didn’t want to hear in the last few months.
So what has it been like to re-enter earth with a sense of normalcy?
Strange.
When I returned home from my last treatment (after staying with my wonderful friend), I was greeted by the flowering plum tree in my front yard. It’s a welcoming sight, one of hope for the future. The tree was a sign that I needed to take care of my house, purchased last September, because I was going to live there for some time. So while adjusting to the side effects of treatment, I am taking care of some “honey-do” items. Some of these tasks I can tackle myself, such as unclogging drains and oiling locks. But others require the expertise of the professionals.
A guy who installs blinds came in to give my house a sense of privacy. How the previous owners could live without any coverings on any windows is beyond me.
The cable TV guy connected up my new flatscreen, allowing me to enjoy TV after over thirty years without it. The thrill of watching Downton Abbey has not escaped me.
Then a specialist came around to make my garage door as easy as possible for me to open and close. It gives me a sense of order to have the house secure, yet accessible.
Tomorrow I expect a handyman, recommended by a friend, to take care of a variety of tasks that ordinarily would be handled by a spouse. We’ll see how many he can take on and what he has to leave for a contractor specialist.
I try to focus on the hope of living in this new abode as I manage my symptoms: becoming cold as the afternoon wears on, tingling in hands and feet, and a general fatigue and achiness that can’t really be described. Food isn’t as enjoyable as it once was; in fact, my taste buds are quite fussy about what goes down the hatch. I also don’t experience hunger. It’s strange not to get body signals that alert me to the need for sustenance. I have to rely on the clock.
I’m also taking care of needed professional services like eye exams, dental cleanings, tax preparation, and trust planning. All sensible, and collectively reflecting a cautious optimism for the future. I was relieved to discover this week that I don’t have glaucoma; I’m just a glaucoma suspect. Would that I were just a cancer suspect, too, but the diagnosis has gone way beyond suspicious.
The latest plans I am making are for my cremation. My rationale is that my family doesn’t need to worry about funeral details when they are grieving. Not that I plan to go away any time soon, but it’s good to get it out of the way.
As Thomas Wolfe said in his novel, “Make your mistakes, take your chances, look silly, but keep on going. Don’t freeze up.” I certainly make mistakes and take chances. Don’t we all? And I look silly sometimes, for example when I forgetfully wore my night hat to the dentist instead of my wig. But I don’t plan to freeze up. I accept social and church invitations and extend my own as much as I can. In fact, not only can I go home again, but, as the songs go, “You’ll never walk alone” and “I’ll never walk alone.” And I know I won’t.
Back again!
So here I am, back at home again, after a three-month and more hiatus. Last autumn I experienced chest and back pain, vomiting, and shortness of breath that went beyond scary. It went beyond first aid.
In early November 2012 I was diagnosed with Stage IV breast cancer that had spread to my lung cavity and bones. My last recurrence in 2003 was stage I breast cancer, treated with a double mastectomy, chemo and–much later–Herceptin. But like a horror movie, in 2012 the cancer clearly told me in full force, “I’m back!” My pleural cavity was filled with fluid, causing the shortness of breath. A biopsy of the fluid showed it to be HER-2 positive. The cancer was treatable, but not curable.
Fortunately, my oncologist in northern California is a former fellow at Stanford. He had choices for me. He knew the Principal Investigator of a Genentech-sponsored Phase II clinical trial at Stanford comparing T-DM1 (Kadcyla) and taxol with T-DM1, Perjeta and taxol. He thought I would be a perfect candidate. Indeed, after undergoing several scans I was found to qualify for the study. I am only one of five patients in all of California in this particular trial. Since it is unblinded, I was happy to know I’m in the study arm that gets the antibody combination.
During the clinical trial I stayed with a wonderful friend and prayer partner who not only hosted me, but became my care enabler. She nursed me during the early days when I was unable to take care of myself. And she drained my lung cavity every day, removing dressing, applying antiseptic, hooking up a vacuum bottle, and reapplying new dressing. I couldn’t have done it without her. She taught me how to drain the fluid, so that I could do it myself when I went home. What an angel she was–and is!
After three months the scans showed that my lung cavity was normal and my bones were healing. Two palpable tumors on my back are also gone, with no trace of where they once were. The doctor views it as a complete response to the drugs. I am so thankful that Genentech developed these targeted antibodies. I am able to lead a normal life now with minimal side effects: that is, no more vomiting or indigestion, and my hair is growing back now that I am off the taxol. Without this treatment I would have had Herceptin and maybe also Perjeta, both very excellent options. But I was thrilled to get T-DM1, the Cadillac of drugs, since my cancer was so aggressive and I was in so much pain.
On Feb. 22 I was pleased to learn that the FDA approved T-DM1, known by the trademark Kadcyla. On Monday, Feb. 25, Genentech celebrated by having a traditional ringing of the bells at its South San Francisco headquarters. My story was read at one of the bell ringings.
I’m inspired by the miracle of life, by each new miracle that allows me to get a good night’s rest, wake up pain-free in the morning, and look forward to connecting with my friends, my church, and my sons. I deal with side effects such as fatigue, some achiness in the legs and peripheral neuropathy in the hands and feet. But I’ll never take another day for granted.
It’s thrilling to be back!
Autumn Reflections: Day Trippers, yeah!
- Mt. Lassen Peak as reflected in Manzanita Lake
Last Saturday’s forecast promising sunny fall weather in our area proved right on target. Relying on this prediction, my good friend and I decided to take a day trip so I could say goodbye to a family vacation lake house soon to be sold.
Before our trip up into this mountainous region best known for Mt. Lassen Peak, we stopped at the local coffee drive-thru to snag some Oregon Chai Latte, a black tea with vanilla and spices combined with 2% milk. We wanted to be jazzed as we made our way up the twisting roadway.
On the way, we found a place to pull over so we could explore snow-fed Deer Creek. Climbing down to the water’s edge, we snapped photos of a small waterfall with a backdrop of yellow leaves dangling from tenuous branches. Big leaf maple abounded with its golden leaves, evidencing a decline in chlorophyll production. Alder and some western dogwood displayed a pink-orange, while the poison oak has transitioned from pink to orange to brilliant red. It’s rare that I see pink in the fall, outside of pink-tober. What a welcome relief! I hope to paint from the photos we took.
A campsite sits on the opposite side of the road, so we crossed over to explore. At the peak of summer this locale must be packed with families eager to have running creek water for cooling off and for children’s play. If only these summer tourists could see the magic of this heavenly place in the autumn, with its vibrant colors and shifting shadows.
When we reached town we found a gift store where we could browse and window shop. We met some lovely women there, taking the time to chat, share stories, and marvel at the myriad of Christmas ornaments on display. I love the fact that we were not rushed in any way. Leaving this shoppe we headed for the realtor’s office so I could sign papers and get key access to the vacation home.
For lunch we chose Knotbumper, a homey restaurant located in town for over 20 years, one to which I’d never been despite all the summers I spent in this area. A wood-burning stove with a glowing belly graced the main dining room, providing atmosphere and charm. As we sat there, we noticed a marked influx in customers, undoubtedly including those who had gotten a late start up the mountain and were now just arriving to enjoy a hearty meal. From the eclectic menu I chose a lunch called Coyote Flats, consisting of a chile relleno casserole, a tasty navy bean soup and some refried beans and a tortilla.
It was the first meal I’ve finished in a long time.
Knotbumper Restaurant
Sample cuisine
We then ventured next door to a place called “Good Vibrations.” No, we didn’t see the Beach Boys. While we were minutes from a lake beach, we were five hours from any ocean. But we did find unique treasures that would make fabulous souvenirs. According to my friend, who lived in this area as a teen, the store’s building was once a restaurant, with an outdoor eating area overlooking a babbling brook. She remembered the history of many of these buildings in town, so she became a tour guide giving me a glimpse into the past.
When our desire for shopping abated, we made our way to the lake house. Having not been there for over two years, I didn’t know what to expect. But it was exactly the way I remembered it. The big river-rock stone fireplace still dominated the Great Room. Furniture stood where I remembered it to be. The decks still looked out on a lake and mountain scene partly obscured by pine trees. The afternoon was so warm and inviting that I was surprised there weren’t any boats out on the lake. But then again, boat rental season is over and homeowners have brought in their docks for the season. Snow still lingering on the ground reminded us of the significant snowfall they had had a week earlier. So while no boaters were enjoying the lake, this was the perfect day to come, before the weather turned again and the days shortened considerably.
After saying goodbye to the house and locking it up, I jumped into my friend’s vehicle and she drove around the peninsula on which the house sits. We noted how close the homes are to each other because land is so valuable. We passed countless bear and moose mailboxes. We passed the now-deserted beach and tennis courts. I marveled how restaurants had relocated even since I had been there two years ago. Changes of ownership and venue are common in this area where the economy depends mostly on summer tourists.
After leaving the peninsula my friend drove me to the area where her family used to live. She pointed out her old house and the school bus route and the school she used to attend. She actually got bored on the bus despite the beautiful mountain ranges appearing from the windshield every day. I can’t believe it would be boring, but when you are a teenager and the route leads to school, the scenery becomes routine fast.
Cascade mountain range seen from the bus
After we dropped off the house key at the realty office, we headed out of town before the melting snow could turn to ice on the road. We were armed with cookies to munch on as our snack. Our first stop was just out of town where we searched for the perfect sugar pinecones to take back. Ponderosa pines are prominent in the foothills near where we live, but the sugar pines with their enormous cones grow much further up into the mountains. What great decorations these will be for Christmas!
Once we got back on the road that followed Deer Creek we pulled over to get a closer glimpse of the Indian rhubarb growing there. The big, fan-shaped leaves of this plant are beginning to blaze in red. For those unfamiliar with this water plant, it is a slowly-spreading perennial native to mountain streamsides in woodlands in the western United States (southwestern Oregon to northwestern California). We had missed it on the way up and didn’t want to pass up the opportunity to zoom in on its once-a-year glory.
Indian rhubarb before the fall
When we returned to our home city, I gave my friend a huge hug of gratitude as we parted ways. I told her this trip was the best I had ever taken up to that area. No other mountain drive could compare to this one with a beautiful friend who cares and takes the time to stop along the way and live life in the slow lane.
You see, my cancer has likely returned. This was a perfect diversion, an incredible almost-ending to pink-tober, the month my beloved father died. My wish to all is that you would have good friends as I have in this woman willing to drive me to an autumn retreat while I am feeling reasonably well.
Have you a special autumn spot to which you return to enjoy fall colors?
The Hunt for Pink October: What Helps Cure Breast Cancer?
The pink culture that defines breast cancer awareness sears our consciousness this month, with everything from pink helicopters to pink slugger violins to pink sleeves by quarterbacks.
But porn?
I just discovered that the adult entertainment site PornHub will donate one cent to a breast cancer research charity (Save the Boobs) for every 30 porn videos watched.
Seriously?
How generous! How wonderful that women will be exploited so that a penny will go for research for every 30 videos men watch to satisfy their prurient interest.
This is wrong on so many levels. Porn is not just a healthy outlet for men who need sexertainment. It has consequences no matter how you slice and spice it. The sex-slave trade is only one of the many dirty secrets that porn kings want to hide. Titillating videos of this nature are also associated with such unpleasantries as incest, rape, underage sex, and marital infidelity.
Many men have been addicted to porn for years, helpless to stop it no matter how hard they try. Some need more and more thrills to get the same self-pleasuring reaction to the images. Behavior that feeds the ever-deepening addiction can lead sadly to break-up of families. How does family breakup help those with breast cancer? Breakups adversely affect finances, and cause undue stress that depresses the immune system. I should know; I’ve been there.
Such flippant treatment of breast cancer is an insult to women everywhere. It’s belittling to those who’ve had a lumpectomy or mastectomies and/or breast reconstruction. It’s especially an affront to those with metastatic disease in which the cancer has spread beyond the breast to distal parts of the body. It’s a slap in the face to those who have already died from this dreaded disease.
And what about the disfiguring effects of lymphedema, an arm swelling that can occur after breast cancer surgery and radiation? No one wants to mention that ugly little truth, either. Who wants to address how the swelling can lead to complications beyond just cosmetic concerns, such as infections? Who wants to discuss unsightly bandaging? None of those topics is erotic, let alone stimulatory.
Instead of porn videos, these seekers of thrills should be required to see the The SCAR Project photo display. According to their website, the SCAR project is “a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay. Primarily an awareness raising campaign, The SCAR Project puts a raw, unflinching face on early onset breast cancer while paying tribute to the courage and spirit of so many brave young women.”
One look at these images will take away the pink glitter people continue to sprinkle on breast cancer.
Being encouraged to watch porn videos tempts men and gives them a convenient excuse to feed their addictions, while hurting their loved ones. Are you fed up with this low blow to the cause? Are you tired of how breast cancer awareness has become a form of sexploitation? Then it’s time to make our voices heard. Join me in putting an end to the porno-pink nonsense that damages our society and putting money into causes likely to effect change.
I particularly like to read The Pink Underbelly during October as the author points out all the pink inconsistencies that abound. In her latest post she describes Dr. Susan Love’s recent initiative: The HOW Study. This study is designed to find out the causes of breast cancer so we can prevent the disease from occurring. According to Dr Love’s website, some 280,000 women were diagnosed with breast cancer last year. Of those, 40,000 women will die from the disease this year. Let’s get these statistics under control, not by watching porn, but by embracing worthy studies like this one. Another organization of value is The Army of Women. I’ve participated in several Army of Women studies and will continue to do so every chance I get, because I believe they will make a difference.
Down with pink! Instead, I’m seeing red. Let’s neutralize the color of the hunt this month by avoiding all causes that sport “tatas” and “boobs” and supporting causes that matter.
Texas Lymphedema Conference
Because I just moved, I had to delay this follow-up post to my earlier post this month on my week-long trip to Dallas. I didn’t come to the heartland just to see my son, although that alone would be ample reason to visit. The main reason? To attend, as a patient-advocate, the biannual National Lymphedema Network (NLN) Conference for healthcare professionals.
This year the exhibitors outdid themselves, and the presenters waxed professional in every respect.
Wednesday, Sept. 5:
The Tenth NLN conference Research Roundup began on Wednesday with preconference workshops targeted for the medical practitioners. We patient-advocates also could participate if we enrolled separately in the courses. Topics ranged from management of lymphedema (including skin and wound care) to compression and exercise strategies for those with lymphedema. One workshop targeted medical doctors who were interested in learning more about the anatomy and physiology of lymphedema. How refreshing that M.D.’s attended this, so they can take home what they learned to their community of professionals who never heard of lymphedema. We hope the lessons learned from the course will be broadcast all over the U.S. and across the world, since so few doctors know what to do about lymphedema–if they’ve even heard the term.
Thursday, Sept. 6:
We patient-advocates were treated each morning to a special mentoring session with medical doctors specializing in lymphedema. They patiently answered all our questions and helped us understand better the medical jargon and design of clinical studies. Thursday morning we had a nice chat with the doctor assigned for that day, and got acquainted with each other.
The plenary sessions that followed provided a wealth of information on lymphedema research. What I found most interesting were the various presentations on surgical options for lymphedema. The clinical results have come a long way since 2010, when we had the last NLN conference. A pioneering surgeon in Paris has performed more than a thousand lymph node transplant surgeries with some success. Now a surgeon in the LA area who specializes in breast reconstruction surgery has taken up the gauntlet to practice lymphedema surgery in the U.S. His presentation, titled “Combined Lymphatic Liposuction and Vascularized Lymph Node Transfer for Treatment of Long-term, Non-pitting Lymphedema,” raised many questions. After surgery, the patient must continue with the self-care portion of complete decongestive therapy. And most patients must still wear a compression garment the rest of their lives. An interesting discussion ensued on the risk of transplanting healthy nodes from the groin area to the axilla–whether lymphedema could develop in the leg as a result of removal of the nodes.
Friday, Sept. 7:
We had to select in advance our workshops on Friday. I chose “Developing Research Competence,” “Unraveling the Mysteries of Insurance,” “Living with Lymphedema – Impact on Self Care,” and “Integrative Approaches to Lymphedema Management.” Through these seminars I learned how to conduct an evidence-based research study, how to navigate through the Medicare quagmire, how to ensure I give myself the optimum self-care regimen, and how to eat properly and relax. During the last workshop, the lavender scents passed around to us and the lilting voice of the Canadian speaker lulled at least have the audience to sleep, I among them.
Jan relaxing at cancer survivor exhibit in Dallas
Saturday, Sept. 8:
The plenary sessions took over once again. This time we learned about yoga for breast-cancer-related lymphedema (a good thing), body image for those with head and neck lymphedema, and lymphatic abnormalities in contralateral arms in breast-cancer-related lymphedema revealed by near-infrared fluorescence imaging. I don’t have lymphedema in the arm where surgery wasn’t performed, but I know people who do. I plan to be as careful with that arm as I am with my affected arm. No sense taking a chance in view of this new study.
Saturday also gave us two lively debates on lymphedema surgery and on the surveillance model for breast cancer rehabilitation. We got to hear pros and cons for each modality and make our own decision on who is right, or if anyone is right.
Sunday, Sept. 9:
Unfortunately, I had to leave early Sunday morning. But the lectures continued, including some on pneumatic compression for lymphedema.
******
The Exhibit Hall was open for business up through Saturday. This year the hotel ballroom hosted more vendors than I’ve ever seen before. The options for compression garments are overwhelming. Whether you want to be a fashion diva or blend into the environment, whether you have leg, arm, head-and-neck or truncal lymphedema, there’s a product designed specifically for you. And of course pumps and FlexiTouch devices were on display for all to see. Early one evening I was able to get a neck and shoulder massage from one vendor. After that experience, I wanted to go back each evening for an encore performance!
If you are a member of the NLN, the next issue of LymphLink that you receive will contain articles about the conference by all the new 2012 patient-advocates. They will present their impressions and take-home messages from all that they digested.
This conference outshone all the previous NLN conferences I’ve attended. And that’s hard to do!
Now for some pictures of downtown Dallas that my lymphedema therapist took at one of the rare times when we had free moments to spare:
Cattle statues near conference hotel
A cowboy with his cattle in Dallas
Dallas skyline from our hotel
Hotel with Reunion Tower restaurant in view
Old courthouse in Dallas near JFK assassination site
JFK Memorial
Texas Fun – Deep in the heart
My recent visit to Texas confirmed the cliche that everything is bigger there. My time spent in this special state well exceeded my expectations, which were already big.
After my son Josh picked me up at the Dallas-Fort Worth Airport two weeks ago, we sped away to Waco, home to Baylor University where he’s a senior. That night we caught the last half of the first Baylor football game of the year.
The next morning, Labor Day, after I enjoyed a tasty breakfast at the hotel, we headed off to Homestead Heritage at Brazos de Dios near Elm Mott, TX. That particular day they celebrated a Sorghum Festival with demonstrations in so many ancient crafts: blacksmithing, weaving, grist milling, pottery making and farming. Complete fun, and an escape from all things California.
Hungry, and unable to wait 1.5 hours to get a seat at the Homestead Heritage cafe, we made our way to Cracker Barrel, where we had to wait only 20 minutes for a table. No worries. We easily spent the time scouting their gift shop for the perfect birthday present for his girlfriend. Only a mom could help him solve this problem.
After a lovely lunch we took a break to read in the campus library for a couple hours–I with my i-Pod reading “Invisible Man” and Josh with some kind of textbook. Eager to meet his roommates, I implored him to take me to his apartment where his friend told me they would be. They are just as charming as Josh’s description of them, polite and modest.
Off we then headed to buy us some bubble tea (with black tapioca in the bottom). Mine, an almond concoction, was divine in every sense of the word. We took our drinks over to a famous suspension bridge that crosses the Brazos River. Following tradition, Baylor students throw corn tortillas over the side to see if they land on a concrete pier. If not, the ducks dive and swoop for them. Everyone wins.
Next on the whirlwind tour was a visit to a local park laced with trails and views. Josh coaxed me into climbing the 89 stone steps of Jacob’s Ladder. The problems? I’m out of stair-climbing shape, the temperature well exceeded 100 degrees, and almost every step was higher than a standard step. The next day my legs paid for it, but it was worth the exertion. Anything to have fun with my son in the sun.
The next park destination was Lover’s Leap, which overlooks the river. A fun place to take photos of the view–and of us!
The afternoon wasn’t complete without a kayaking excursion. The Baylor Marina sported all kinds of water craft that day when the students were off from classes. We headed out onto the river and explored inlets. A thoroughly magical excursion, especially when I thought I might never kayak again because our lake house must be sold.
The day still hadn’t ended. We feasted our eyes and taste buds on a local Thai restaurant, a favorite haunt of Josh and his girlfriend. The evening wouldn’t be complete without topping it off with a frozen yogurt complete with delish condiments: fruits, syrups and candies. Fun stuffed us to the gills!
We ended the night watching the movie “Madagascar” at his apartment, a flick requested by yours truly. When he took me back to the hotel, I still had energy for a short swim and hot tub immersion in their indoor facilities.
If this wasn’t heaven, I don’t know what is.
The next day Josh had classes, so he picked me up late morning and we ate lunch at the college dining hall. This place was food court heaven, with any type of cuisine you might desire. Taking advantage of this rare opportunity, I filled my plate high with salad, main entrees, and wraps. Then I went back for a big bowl of soup. You’d think I were a starving refugee.
After lunch Josh dropped me off at Common Grounds, a popular coffee and music hangout adjacent to the campus. I reveled in the funky nature of my environs and the college conversations all around me.
When Josh picked me up he gave me a leisurely tour of the campus, including the building where he spends most of his time. Of course we had to make our obligatory trip to the college bookstore, where I purchased a Baylor University Mom decal. Then we stood in line for root-beer floats at the afternoon Dr. Pepper Hour.
Soon enough, it was time to be dropped off at the campus Starbucks while Josh attended his last class of the day. Sipping a skinny vanilla latte, I listened in on various conversations as I tried to read my book. Soon Josh came and we went out for TexMex at a dining establishment with hubcaps on the ceiling. We finished the night watching “Madagascar 2″. What else could we watch but a sequel?
The next morning, after a hearty omelet breakfast at his dining hall, we headed for Dallas, for my lymphedema conference. More on that experience in my next blog post.
For this post I decided just to focus on the time Josh and I could spend together. I had been looking forward to this trip for two years, since the last National Lymphedema Network conference in Orlando.
And it finally came to be.
The campus visit was far more than this mom (with all the physical and emotional pain she has experienced over the past year) had anticipated. I probably gained five pounds in two days. But I was deep in the heart of Texas, where my son resides and my heart belongs. Where bluebonnets spring up along the roadside at certain times of the year. Where else would I want to be?
Where do you enjoy going when you take a trip? Do you often see family?
Celebrating the Ordinary – Seventh Day
In extraordinary times, the ordinary takes on a glow and wonder all of its own. Mike Lancaster
The final day of Marie’s challenge dawns upon us. I’ve thrived throughout this exercise of paying tribute to the ordinary in our lives, in these times that truly are astonishing. Eye-popping, even.
Today I feature my oldest son at 3 at the Oakland Zoo in California.
Nothing is as thrilling as being lifted by Grandpa!
Now I’m smiling because my baby brother is sleeping and I have Mom all to myself.
I love this ride. I can drive my own car without having to pay for loans, registration, maintenance and insurance.
Mom and I get to ride a horse that goes up and down. Hope I don’t get too dizzy. (Oh the joy of a carousel ride! This little boy’s great grandpa used to restore carousel horses for the City of Rochester, NY during the depression. He never lacked for work during that time.)
Aren’t giraffes crazy looking? How come his legs are so spread out? Does his neck ever hurt from straining so much?
And how about those tortoises? They may be slow, but, my, are they big!
And finally, the petting zoo, where I can beg Mom to buy food for these starving animals. How different this guy feels from the bunny fur and scratchy beard in “Pat the Bunny” that Mom reads to me every night at my insistence.
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These had to be some of the happiest times of my life, when wide-eyed boys viewed the most ordinary as a miracle, when my parents were alive to witness it all. It’s been a pleasure to feature an extraordinary little boy awed by a world made wondrous by those who create zoos.
May we never lose that sense of wonderment!
