Wow, it’s March 1st and shamefully we haven’t written in our blog in the New Year yet. Perhaps that can be an indication of how preoccupied we are. Isa started a new job as a bereavement social worker for Packard Children’s Hospital and I am finishing up six months of chemotherapy next month. I can’t wait. I am still on disability but find it a full time job to manage health and all the paperwork of being on disability. Meanwhile, I’ve managed a kitchen remodel, took on the role of Team Co-Manager for Team Northern California for the Transplant Games of America coming up in July, and continue to work with outreach and marketing for the Power of Two. To say the least, there has been a lot of “ass time” on my computer and my fitness level has deteriorated. But I do what I can given the circumstances and managed a few swims and walks through the weeks. I have lost sensation in my feet for the last 2 months due to neuropathy caused by chemotherapy so that makes running rather difficult and any exercise rather uncomfortable- it feels like walking with sleeping feet all the time. Given the range of other potential side effects, I cannot complain.
I have been told that it can take months for neuropathy to go away after chemotherapy ends, which should put me right around the time of the Transplant Games. This will be my sixth time at this amazing celebration of life, where 1200 transplant recipients compete in sports and honor donor families. I recognize the wear and tear on my body that has occurred in the last 12 years, and will attend just to do my best and enjoy being there, while honoring my donors. Most of all, I will go to cheer on the youngin’s like Anna Modlin, who is featured in our film. She received her lung transplant in 2010 and is a fantastic swimmer. I can’t wait to see her bring home gold. Life is always about having something to look forward to, right? To join Team Northern California see: www.teamnorcal.org or for more information on this amazing event, see: www.transplantgamesofamerica.org.
Our 2012 started out quietly with chemotherapy on New Year’s Eve and a blah feeling for several days after. However on January 5, the transplant boot camp made a field trip to Sky High Sports Trampoline gym to get some exercise. We had a blast!! For an hour and a half we jumped, did flips, jumped and flipped into a foam pit and rejoiced in acting like kids. I should have known I was fatigued when I stood up from a chair to go take a group photo and my legs buckled under me and I collapsed. Perhaps a sign of chemo deconditioning. Well I knew I was going to stop soon, so I attempted my last flip. As I was facing the floor to spin with great momentum, I had a mental spark trigger fear and I hesitated, bracing the fall with my arms. I heard and felt a “crunch” in my left elbow and yelped like a dog. I sat on the trampoline for a minute or so holding my elbow in God-awful pain cussing up a storm. When the pain subsided I thought it was ok and released the hold from my elbow. To my surprise and that of my friends, my bone was jutting out sideways. It was dislocated and my arm was dead weight. So off to the ER we went. Darn it, can’t I give my insurance company a break just for a few weeks?? What a way to start the New Year! Isa, Stacey and I waited four hours in the ER, masked and paranoid as the room was teeming with sick babies and people with the flu. Finally, Stacey marched to the front to inquire what was taking so long. After all, I was a transplant cancer patient so I needed VIP service, right? Not! With many apologies we were brought back around 10:30pm (the fall was at 5:30pm). I received a lovely dose of sedation and painkiller and blanked out for one second, just to find out my arm was put back in place. I couldn’t imagine how they did that in the old days without painkillers. I had cracked and chipped the radial tip as well as dislocated the elbow. Cool x-rays! Needless to say, the next 48 hours at home were uncomfortable with sleeplessness, nausea from vicodin and discomfort from my splinted arm stuck at a 90 degree angle.
But it didn’t matter because we had a birthday party to attend! And it’s only an arm, right? On January 7, Isa and I had a small birthday celebration for our 40th birthday (or, as we put it, our “80th” birthday- 40 each). We rented a Japanese room in a Japanese garden, catered sushi and started the party with my favorite new pastime- zumba, which is a fun, dynamic aerobics class infused with Latin music and dance. I was a bit limited in shaking my bootie with my broken arm and sling, but I did what I could and had a great time. Space was very limited in the rental facility, so I truly apologize to my local friends who may be reading this who could not attend. I wish I could have invited everyone! Our party ended with a talent show, where we invited our friends to display their talents to the group. Some sang, some read poetry, some sang, and some showed their musical talents and artwork. It was a truly bonding experience. The day was perfect- full moon, sunshine, our closest family and friends, and sushi. We even had flamingo cupcakes. God blessed us with 40 years of life and this was the ideal way to commemorate the milestone. For a day I could forget that I was one handed and on chemo.
The next day, our real birthday, I celebrated my husband’s birthday (Jan 9) and he invited many of his friends to our home. His guy friends play videogames and Magic cards (a card game like chess that Trent LOVES) so I went hiking with Isa. This chemo is kicking my ass, and hiking has become HARD. I’m slow and steady, huffing and puffing, but I get there, little by little. Never mind I can’t feel my feet.
A week after my trampoline accident, I received a letter from the trampoline gym with get well wishes and 12 free passes to trampolining. I had to laugh. What a consolation prize!
These quieter winter months are spent hermiting a bit, desperately trying not to catch all the winter colds going around. I have been able to spend a bit more time in my home, reorganizing closets, the kitchen and redecorating. I am going through 15 shoe boxes of 15 years worth of cards and letters I have kept. I am at the point where I ask myself why do I need to keep everything? So I am shifting through these boxes, keeping only the most memorable letters (many from deceased friends) and re-assessing my space. Also, I have been on a quest to find new curtains since Thanksgiving but the combination of my frugality, twinness (inability to make independent decisions) and lack of interior design vision, have resulted in a drawn out ordeal where my husband cannot understand why I am making the process of new curtains such a big deal. Again, CF stands for compulsively finicky.
In January, we showed our film in Sacramento at Sierra Donor Services, in the Southern California wine country town of Temecula at a faculty retreat for the University of LaVerne, and in the Northern California wine country towns of Sonoma and Murphy’s. We continue to be blessed with wonderful feedback regarding the film, and more importantly, move audiences to be compassionate about CF and open to considering organ donation. I received one email from a woman whose 16 year old CF daughter saw the film and “cried for 7 hours straight afterwards.” Oops- we didn’t intend to cause her so much pain. What a reality check this film is to young people with CF who may not be so familiar with what may lie ahead. But I am hopeful that the younger generation will benefit from the new drugs that are coming out to correct the genetic defect of some CF mutations, and will never face the end stage disease that is so honestly portrayed in our film. Yet, at the same time, when I was young, seeing what lied ahead was the best lesson for me- it taught me to cherish each day, take my treatments seriously and what could happen if I did not.
My February started off with more chemo, physical therapy for my elbow (it still doesn’t bend/straighten all the way), a Valentine’s Day surprise to see live standup comedy for my hubby (we’ve been really into comedy lately), and film showings in the East Bay at the California Independent Film Festival where The Power of Two won best documentary. Isa kept herself busy with home improvement projects, bagpiping and practicing Spanish for her new job. She is currently facilitating a Spanish speaking bereavement support group for parents. Que dificil! Together, we continue to mourn the loss of our beloved soulmate dog, Rupie. If I close my eyes, I can just imagine hugging her…
Last week I was able to spend a magical day on a private lake with my father-in-law and Trent while fly fishing. I had never done that and my father-in-law, Dave, is a passionate fly fisherman. He was so excited to share this with me. He rented the use of a private stocked lake on an Indian reservation about 2.5 hours from the Bay Area and we sat in a boat for six hours. I caught ten fish (and released them) with special hooks that didn’t have the extra barb and could easily be removed. It was a beautiful, quiet location with many different types of water fowl, wintery trees all around and a sunset of mixed oranges and purples that took my breath away. Since I usually spend 8 hours a day on the computer, this was a much welcomed and wonderful change.
As we start March and welcome warmer weather and longer days, I see daffodils sprouting all around Stanford campus and spring blossoms popping up on almond, plum, peach and cherry trees all over. I always breathe a sigh of relief when I see those blossoms- spring has arrived and we survived another winter. Praise God.
Mayhem starts soon, with over six film events occurring, starting with Kansas City and Fargo next week. Our film shows in Montreal this week and our producer, Marc, will attend the festival in 9 degree weather. Sorry, not for me, especially 1 day post-chemo. We have been invited to show the film in too many cities to keep track of, and with work and health, have realized that it is impossible for us to attend all of them. We discovered that we can engage with audiences after film screenings via SKYPE and have enjoyed two wonderful Q&A sessions on the East Coast that way. Thank goodness for modern technology.
We are so grateful to those who continue to show interest in the film, the book and our lives in general. As I enter my 40’s and feel older (gee, maybe chemo has something to do with that?), I feel so completely satisfied with my life on so many levels. It is such a blessing to be at such peace… even if I can’t find the right curtains; ) .
Sorry to be whiny about the chemo thing. It is really not that bad. Because of the neuropathy, they stopped one of my drugs (oxaloplatin) at dose #8 (I do 12 total) so that makes things a lot easier just to have the 5FU drug. I hope I don’t offend my kidney transplant friends who are reading this, but I’ve decided I have the cancer version of a kidney transplant; the breast, ovarian and lymphoma patients have the cancer version of a lung transplant. Does that make sense? Both are hard, but some are harder than others. Either that or I am just so damn lucky.
Thank you all for your support, your love and for following our infrequent yet long blog posts. May you be blessed with good health, and like me, welcome the warmer days of spring. Hugs, Ana stenzel