Once again, I have neglected my blog. I had intended to post my 100 days of Ukulele progress on this site, but found it too cumbersome to post on the blog, youtube and facebook. For the most part, I have loved participating in the challenge and have learned so many new things, but from time to time I feel a little overwhelmed. Perhaps I have been trying to accomplish too many things at once. I had been very confident that I had overcome my “chemo brain”, but have found my ability to multitask is still limited when my focus is pulled in too many directions. My “relapse” began when I had the bright idea to attempt to get a motorcycle license. My son is planning to buy a Vespa scooter, and I decided to take the class with him. 4.5 hour into the first 5 hour session on the bike, I was mentally and physically exhausted. My ability to mentaly process and quickly execute multi step directions in a short period of time was pushed to the limit. I dropped out of the class and beat myself up the rest of the day. I was so disappointed in being unable to complete what I had set out to do, that I wallowed in self pity for the rest of the day. Now please realize that learning to ride a motorcycle was never on my radar as anything I ever had a desire to do, so why was I so crushed by my failure? It was just the stark reality that my brain and body are not capable of my “expectations” '. Now as I continue on my ukulele adventure, I occasionally feel the strain of posting something somewhat good everyday. Finding the balance between pushing to learn new things beyond my skill level, while trying to perfect my basic skills has been challenging. Most days I love playing, but some days my joy is lost in the pressure to post, so it is time to step back and play for the love of it again, and stop expecting so much of myself. (you may have noticed that i am my own worst enemy and harshest critic) I have had the privilege of being on WGN radio’s John Williams show every week sharing my 100 day challenge. Playing live on the radio was a little intimidating, but not all that stressful. I love my ukulele, but am relieved that this challenge is nearly over! I am looking forward to being able to devote most of my energy to working on fundraising for the National Ovarian Cancer Coalition. I am on the planning committee and am captaining the Northwestern Medicine: Better Together in Teal team. As usual, I am setting a lofty goal and hope to raise at least $10,000 by building a team. Northwestern has had a team for the last several years that has had limited success in fundraising, but I am determined to make this team a HUGE success. Over the last two years of my participation in the fundraiser I have raised over $9,000 with the generous donations from friends, family and strangers, but I have been essentially a team of one, as I have had limited success in engaging anyone else to actively raise money outside of their own donations. I am hoping that I will be able to engage Northwestern staff and patients and perhaps my own family and friends into actively participating in some of my ideas! This year the NOCC will be celebrating its 25th anniversary and will be hosting the first in person event since that pandemic began on October 15 at Cantigny Park in Wheaton. Registration will open any day now and I am eager to share team information with friends, family and welcome Northwestern patients and staff. Congratulations if you have made it to the end of this long winded post. The moral of this story is that goals are not always achievable, but that doesn’t mean we shouldn't shoot for the stars! I am still a tough cookie even though I crumble from time to time! It's time for the WABI SABI spirit to take over and find the beauty in imperfection! I am trying to shift gears from optimistic realism to plain old hopefulness. While on maintenance chemo for the last two years I was certain that I would have a cancer recurrence by this time in my journey. I didn't fear it or dread it, I accepted it as my reality. At my last oncology visit when discussing the good results, I again brought up the plan for when my cancer returns. The response from my doctor was "if" cancer returns. I scoffed off the comment as unrealistic, but it did plant a seed in my brain. Two years of progression free survival is a huge deal for ovarian cancer, so maybe, (just maybe) my excellent response from chemo, surgery, maintenance and clinical trial participation would me my ticket to long term effects. Whenever I have spoken of my scan results, I have always used words like "stable" or "no evidence of disease", I had never uttered the words cancer free until I called into a radio talk show and shared what was making me smile (John Williams, WGN, Bright Side of Life segment). Without planning for what words I would actually say, and not expecting to get through in the first place, the words "two years cancer free" popped out of my mouth. Over the last days I realized that the idea of being cancer free never even crossed my mind--since diagnosis, I have been waiting for the other shoe to drop... Happy New Year (just a little late)! I currently find myself in the winter blues and am revisiting my own Strive to Thrive mentality. A year ago at this time I was aggressively battling my growing limitations. The attempt to feel better and get stronger was a full time job. If I wasn't at physical therapy, I was exercising on my own with little to no improvement. Being a "girl of summer", thriving outdoors was effortless. While I keep myself busy with books, ukulele and jigsaw puzzles in addition to the usual chores, I can't help but feel trapped by the winter weather. That being said, I need to change my focus to improving my ukulele plucking and strumming . A year ago I struggled to learn new chords and while I have improved considerably, I still have a long, long way to go. Next week I will attend my first lesson at the community college and am eagerly looking forward to getting feedback. YouTube and books have been my only instructors thus far and while they have been great, I still struggle with certain skills and chords. In addition to lessons, my plan is to record and post 100 ukulele songs as part of the 100 day project I will not post daily, but am committed to posting 100 songs over by December. I have watched countless videos that other (much more talented) uke players have posted for the 2021 challenge and am truly inspired. Check out the website and join the challenge! https://www.the100dayproject.org. Sorry for the delay in new posts! The words in my head have not found their way to the page until now. I remain grateful for the the people in my life who bring me unbelievable joy and cherish every healthy day I have. Baking is nearly complete (in record time) which leaves plenty of time to enjoy this magical season. Living in a state that takes covid precautions seriously, has allowed me to enjoy holiday concerts and theater productions for the first time in two years! When asked what I want for Christmas, my reply is nothing (no things!) as I have what I need--family, friends and quality time. That is all that matters. Among other thinks that I have intended to do is post ukulele videos. The following is out of season, but one of my favorites. Holiday videos coming soon. Summertime NED=no evidence of disease. My CT scans have remained unchanged since starting maintenance therapy with the exception of surgical changes now being described as calcification in my liver, which is the likely explanation for the pain I was having. Being wrong has never felt better! That being said, at no time was I truley worried nor was I fearful of the results. Knowledge is power and I know that I have options for when the cancer is back. I have an amazing healthcare team where I my voice is heard and am confident that I am in good hands! The last month has been filled with travel--a fantastic backpacking trip with Eric and Naya (the grand-pup) on the shores of Lake Superior, followed by a trip to Universal Studios in Orlando with Mark. I'll let the pictures speak for themselves. The newest idea that has popped into my head is that I want to write a song. I absolutely love my ukulele and spend endless hours plucking away, finding new chords that that I love to hear. Words and feelings from my blog posts also echo in my head, so why not try to combine the two? The problem is finding the right chords and melody to go with my somewhat established lyrics! I have signed up for a Masterclass subscription and have gained insight as to how others write songs, and am now searching for a user friendly, affordable app that might help to suggests chords for my lyrics--very much a work in progress that I will share as soon as there is something that is somewhat pleasant to listen to... Meanwhile, I have two trips coming up with my sons individually. I didn't realize how much I missed camping until Karl and I returned from our trip out east, so instead of putting away all of the gear, I started planning another trip by myself. But after talking to my son Eric, my solo fairly local trip evolved into a backpacking trip to the Porcupine Mountains on the shores of Lake Superior accompanied by my son and grand-pup! We leave next Sunday for 5 nights off the grid! Four days after the our return, I head to Universal Studios in Florida for the trip Mark has been wishing for for many years. We are staying within the park, so no need to rent a car--just hop on the Hogwarts Express or a water taxi. With four days, we'll have plenty of time to explore and relax. I already hear the lazy river calling my name! These are polar opposite trips doing thing that my polarly opposite children want to do and I anticipate equally! By the time I return, I will be ready for the next phase of my medical adventure--I'll keep you posted... For the last year I have been looking at a tree across the street with the recurring urge to climb it. Finally on Sunday, at the prompting of my husband, I crossed the street to reach for my dream. Upon closer look, the lowest branch was much higher than it appeared from afar and I asked Karl for a boost. He refused my request stating that if I wanted to climb the tree, it was all up to me. I circled the tree multiple times making numerous awkward attempts of pulling myself up until at long last I hoisted myself to the first branch where I rested longer than I care to admit before dragging myself a little higher to conquer my challenge with Karl standing by to catch me if a faltered. While I physically climbed the tree myself, Karl did give me the boost I asked for by letting me know I could do it myself, with him standing by. For now I'll resist the urge to try to do a cartwheel!
I am the luckiest girl on the planet. The weeks leading up to vacation were filled with three hour lunch dates with former patients, Sunday dinner with a kindergarten friend, a long call with my Turks vacation friend, and a lunch date with my neighbor driving in his convertible Corvette! Everyday I encounter something that sparks an incredible sense of happiness and joy. Once again I am reminded of the moment that my life changed forever—when I read a poster in my dorm, and decided to call and ask for a ride to a Halloween party in 1982. That was the day I met Karl, the perfect man for me, the love of my life, my forever friend... Seize your moments of joy and cherish them! We had a perfectly paced vacation including a stop in New Jersey to visit with Karl’s aunt and cousins, camping in Acadia National Park, leisurely walks around Boston, a return to a much loved campsite in New York. Upon our return home, we scurried to prepare for the 5K and afterparty. I was beyond thrilled when Marge, a former patient and dear friend came with her daughter. Marge is always in my head and I have recently come to the conclusion that Marge is the only person whom I consistently take advice from and is a complete joy to be around. When I was too stubborn too use a cane, and Marge suggested it, I swallowed my pride and used it. She was right of course! When I was first diagnosed and showed Marge my manifesto, she suggested that I write and share my story. Over the last two years that idea would suddenly pop into my head, but would leave just as quickly. When Strive to Thrive became my motto, I decided to give it a go. I have gotten over the disappointment of slow growth and have decided that going forward, I will shift gears and only post on this site and will no longer share to the facebook group or page. Those who wish to follow my journey can, but I will no longer clutter their facebook feed with my ponderings. Social media is definitely not my forte! For updates, either check back periodically or subscribe to receive email notifications. From the start I have been optimistic, but realistic about this cancer journey that I’m on, knowing full well that the highest likelihood of recurrence would be around the 18 month mark. On rare occasions I hate being right, this being one of them. While not confirmed yet, I am quite certain that my liver is once again under attack. Once again pain struck while on vacation, this time only when lying on my side--not severe, but significant nonetheless. When given the option of moving up my November scan, I decided not to change the schedule so I could proceed with a trip I had planned with my son Mark in the beginning of November. I am completely prepared for whatever the results are, especially knowing that I have options other than returning to traditional chemo. After reading this last paragraph, you may be asking, does “Lucky Me” still apply? Yes it does! I am lucky to be surrounded by people who love me and encourage me. I live every day with the intention of finding joy! Determination is powerful. When I was first diagnosed and presented with teal gift bags at my oncology appointments, my first thought was “I am not going to be a cancer color” and quickly puth these gifts aside. It wasn’t until I started fundraising for NOCC that I even gave TEAL a thought. The more I got into it the more focused I became. My goal of raising $1,000 was blown away due to the generous support of my family and friends. TEAL did not creep back into my head until this summer when I got the first email indicating that enrollment was open then the wheels started rolling in my brain. Around the same time I started to feel a growing sense of aloneness after a dinner that I hosted for my former colleagues left me with the feeling that I was not part of that group anymore. I had already come to terms with not working and being on disability, but up til that moment, I still felt part of that group. In retrospect, perhaps I felt that coming on for a while but it was clear that my focus needed to shift. I started to look towards ways that I could still be a nurse without being employed. I have found my place. I am not only a cancer survivor, but also a nurse with a strong voice, who will advocate for my cause, who will shout if needed to be heard. I AM TEAL. Perhaps I was trying to reinvent the wheel when I started my blog. Only time will tell if it grows or is helpful for patients or merely a place to ramble and share my thoughts. Regardless of my success, I will continue to pursue volunteer opportunities. I realize my fundraising fanaticism may be annoying but I am determined to explore every option I can to earn your support! My main message is I’m not just sitting back asking for money--this is something I am passionate about and working hard for What I am doing to earn your support…
Barb's NOCC fundraiser DETERMINED is my WORD! When preparing for this year’s fundraiser, I set my goal high--not only to raise funds, but awareness. In addition to messaging my own contacts, posters, and yard signs, I sent emails to local news stations and newspapers. I was fortunate enough to be interviewed by CBS, but the final segment left me feeling like my voice was still unheard. After speaking with the manager of the local NOCC chapter and hearing that she had been trying unsuccessfully to get media coverage during her ten years of service, I decided that something HAS to change! I will continue to push to bring more awareness to ovarian cancer! I will reach a larger audience! I will be heard! Now I’m sending messages to national news networks! Watch out world, here I come!!! I have been wearing the pictured anklet for the last year. I rarely read the word, but I know its there, providing the reminder I need to keep pushing! if anyone is interested in getting their word stamped, message me and I'll make it for you. Please share this message with your friends and family. Turn September TEAL |
AuthorBarb Schlatter Archives
May 2022
Categories |