I could not have picked a worse year to become a full-time RVer.Â
Barbara is a fiery redhead you canât help but love, even when she hotly debates you.
If youâre invited to one of her dinner parties–and chances are good since she often invites the whole town–you will be greeted with a big, warm hug, even if sheâs never met you. If the smells and tastes of her home-cooked meals donât win you over, then her rapturous laugh and zest for life will.
Barbara (Barb) squeezes every drop of joy that life has to offer, and her hope is that you do too. In her presence you probably will.
Barb is my step-mother, who when I was a teenager insisted I move in with her and my father after years of instability. She wanted to provide a more ânormalâ home-life for me in the last of my frenetic teenage years. If not for that decision, Iâm not sure where Iâd be today.
Before we left for our RV journey, Barb, along with our friends, Paul and Denise, wanted to throw us a big Bon Voyage party. Bryce and I donât love being the center of attention, but it was important to have a proper send-off, so we graciously accepted. There was a wonderful party with flair, friends, and more food than is realistic to consume in one evening. She devised a secret plan; each friend brought a dish that was state specific. BBQ, casseroles, and jambalaya nearly spilled off the table.
Can you believe she did all that? I can–thatâs Barb.
Barbara being her cheeky self.
We said our tearful goodbyes In late August and set our course toward adventure.
By January, Barb had cancer…I really could not have picked a worse year to become a full-time RVer.
It started as an ear ache that went misdiagnosed for six months! Then a lump was discovered after an MRI. Finally, Squamous Cell Carcinoma, a golf-ball sized tumor, was identified on the base of Barbâs tongue. Barb endured daily radiation and weekly chemotherapy treatments for two months. She lost her taste buds and saliva, couldnât eat or swallow, and had a feeding tube in her abdomen for months. It could be years before she gets her taste buds back.
Itâs not the the worst form of cancer one can have, and itâs often successfully treated. But it was a devastating diagnosis, especially for someone whoâs a food and wine enthusiast.
Is there a right way for full-time RVers to respond to a family memberâs illness?
Many full-time RVers, including me, often feel guilty for not being there more for our loved ones. We feel pulled by nomadic life, missing the people we love, and feeling like we should help them more. Weâre always searching for the right balance, and our worst fear is that something is going to happen to someone while weâre away. The concerns are fairly universal: Should I go home and take care of family member(s)? How would that work? How long should I stay? Will I be able to return to the road? Am I doing the right thing?
I donât have all the answers, and everyoneâs situation is different anyway. But I thought it would be good to hear from someone who has more wisdom to offer than me, someone who has squeezed a lot from life and doesnât plan to stop anytime soon. So, I asked Barb.
Questions for Barb
1. Tell us about yourself, what you do for fun, hobbies etc.
I am an outgoing, gregarious person, who loves people. I love deep conversations about religion, politics, social issues–all the things you arenât supposed to talk about.
I love to go to the beach and swim; Laguna Beach, California, is my favorite. In fact, I consider swimming in the ocean my religion. I love music, dancing and singing (although right now my voice is compromised). I love to eat and cook, entertain, and plan meals (although eating food is currently compromised).
I love my job. I get to teach people about wine and enjoy a good bottle of wine too. I love you and Brycela (her Yiddish nickname for my husband Bryce).
*Note from me: I pointed out to Barb that I loved how often she used the word âloveâ to describe herself. She hadnât noticed.
Barbara on the left, with the ladies from the cast of the CHOC Follies (Children’s Hospital of Orange County)
2. What was it like to receive a cancer diagnosis? How have your feelings changed throughout this experience?
I was shocked and frightened, and I went numb. Then I just wanted to get rid of it and made it my mission to return to ânormal.â
But my feelings change day to day.
For example, I have lost a lot of body mass and my butt is completely flat. I was going to the gym expecting the muscles to come back in one-day–two-weeks tops. This was totally unrealistic, and I put additional pressure on myself I didnât need.
Now I say, âmy butt will come back in due time.â So my expectations of normal have changed. The fact is Iâm not going to heal as quickly as I thought. That may sound depressing to some, but to me, itâs hopeful because I can stop putting pressure on myself.
3. You are an incredibly positive person. What makes you stay so positive throughout this experience?
I spent my early years very negative due to my upbringing and time spent in show businesses. Over the years, Iâve developed relationships with people who have the most positive attitude, people who have figured out how to make the smallest crumb into a feast, without complaints. At some point I decided that I wanted to be like those people.
Then when I met your dad, I started to appreciate everything. Like the other day, on our walk, we passed a yard with all these different colored roses. Did you know that different colored roses smell different too? Lavender roses smell musty, peach roses smell like peaches, and red roses have that traditional âroseâ smell. There are so many species of roses, and that makes me happy.
Okay, back to your question, I have my three âGâsâ to happiness:
- Gratitude – itâs so simple to be happy for small things. Like, be happy you woke up! Really, if you are alive, you have options. How amazing is that?
- Goals – you have to have goals, even if itâs to walk around the block or call a friend today. Itâs nice to have lifelong goals, but you need something to look forward to on a daily basis. I get excited to travel somewhere new, even if itâs to a new restaurant in a different town.
- Gifts – giving to someone else, even if itâs just a smile when you donât feel like it. The smile is for you too, because it will make you feel happier, and itâs good energy to put into the universe.
Let me tell you a little story about giving to others.
A few days after my last chemotherapy and radiation treatment, I had a stroke. I know, I canât believe that either. I was fortunate to share a hospital room with a thirty-five year old woman Iâll call Lily. She has three little kids and was diagnosed with a brain tumor. She had had surgery and was hopefully in recovery.
One night I heard her mumble in her sleep, âI need help,â so I called a nurse in to wake her. Lily had dreamt that she was trapped behind her bed.
The next day she had a brain scan that revealed a small spot on her brain. Obviously this was devastating news. While waiting for her biopsy results, I was praying that it would be clear. When the results came back that it wasnât cancer I sobbed so hard with relief.
I realized then that I had stopped caring about my own cancer situation. I only cared about her (Barb starts to cry telling me this –I cry too). I have lived a full and wonderful life, but here was this woman, half my age who had so much more to lose. My ability to give my energy to her completely took me out of my own situation.
Giving to others any way you can is a wonderful way to cultivate happiness and positivity.
Barbara, Lily, and friend, after cancer treatments and Barb’s stroke.
4. Whatâs it like having me and Bryce be away?
It sucks. Youâre my kids. I have a new son-in-law I never get to see. I adore you guys. I want to have you over for dinner.
But many families live apart. Kids get married and move away, maybe go off to war–which I canât imagine. I believe however that our children are meant to live their own lives and itâs not right for me to feel bad about that. Sure, Iâd rather have you here, but so what! Your life is not mine to live.
I think itâs selfish really to begrudge kids for the decisions they make about their lives. Â Iâm quite proud of you for taking the risks youâve taken. I tell everyone that itâs wonderful that you are living your dreams. That makes me happy. Secretly though, Iâd like to win the lottery, move to Italy, and have my children come live with me.
5. Would you want me to come home to help out?
You did come home! You visited many times, and you should feel good about that. You cooked, you shopped, you helped out in many ways.
My response to Barb:
But it didnât feel like enough. I felt guilty for not doing more. But I also didnât know what the right thing to do was.
Barbâs response to me:
Let me say something about guilt. Guilt is something you should only feel if youâve done something bad or wrong. I never thought about you living your own life as being bad or wrong. Maybe if you never called, or visited, or you treated me badly, only maybe then guilt is appropriate. But you canât feel guilty for something that is not in your control. Guilt is a useless emotion–let it go.
6. Would you want me to take care of you long-term?
As my mother aged, I felt like I wasnât doing enough either, but I did my best. You canât just keep giving and giving to someone else, no matter their situation. You have to take care of you too.
And you know what? My mother didnât expect me to take care of her. In fact, my mother hated being take care of. So no, my preference is that you shouldnât have to take of me or your dad. But if it comes to that, you do your best and feel good about it.
7. What are your hopes for the future?
I want my taste buds back and some saliva. That would make it easier to eat. I want my energy and muscle tone back. I really hope I can sing again. Right now my vocal cords are damaged and it sounds like I croak when I sing.
I no longer wish to go back to normal. I am inventing a new normal and Iâm happy with what I have. I have made peace with where I am in this journey. I will continue to love life as much as I ever did before.
8. Thank you Barb for sharing your journey with me and others. I appreciate your willingness to be so open. Just so you know a few hundred people may read this post (or not).
Oh God. Can I read it first?
Doing your best is enough
I hope you found this interview as meaningful as I did. There arenât any right answers on what to do when a family member gets ill. Everyoneâs situation is different, and different families have unique needs.
But if thereâs one thing that might be universal, itâs that mostly, weâre all trying to do our best. Weâre doing our best to balance living our lives while serving others too, in the best way we know how. If you are doing that then let go of guilt. Clearing that space will make room for other, healthier emotions–like love and gratitude.
Thank you for reading this. If you have a story to share about a family member or a situation that is calling you home, feel free to leave a comment and I promise to respond. Â
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Ah, Camille. I get it.
We started full-timing less than two years after my own breast cancer diagnosis, when our boys were barely out of the nest (ages 18 and 20). The year after that, my mom was diagnosed with a lymphoma recurrence — her third go-round with cancer since 2000.
I asked her and Dad if they wanted us to be there, and got a resounding “Absolutely not.” They didn’t want us to give up our plans, and assured us they’d let us know if the changed their minds.
So I’ve been the mom with cancer (who took off in an RV), and I’ve *had* the mom with cancer (who told me to *stay* taken off in the RV). Unique perspective, eh?
Both of us are pretty stubborn about doing what we need to do to get through tough times, and neither one of us is at all good at letting others change their plans in order to stand by and wring their hands over us.
I think we’d get along just fine with your Barb.
Emily Wow! You have had more than your fair share of cancer experiences. You do indeed have a unique perspective on so many aspects of cancer, but also I would imagine, living life on your terms and as fully as possible. It sounds like you and your mom are really strong people with lots of love for each other. Thank you so much for sharing your experience. It means a lot that you are willing to be so open. I really hope to meet you on the road! I’ll reach out to you on FB.
We’ve met! I was the one wearing the chicken hat in Bill’s RV for the photography class at Quartzsite. We share Lisa & Dan in common too.
I knew about Lisa and Dan, but didn’t think we had met in person. Ok well that’s awesome. Hope to see you again at the next Q convergence!
Thanks for sharing this! Barb is so inspirational! What she said about guilt and creativity a new normal really hit home with me. I’ve not had anything life threatening like cancer, but have been dealing with a chronic health condition for many years. It was very hard for me initially because I felt guilty that as a mother I wasn’t able to do enough for my kids. It really made a big difference when I realized that I needed to stop trying to get back to normal, and create a new normal.
Thank you for writing this. The timing is perfect. I started my full-timing less then a year ago.
Four months ago, my mother had a stroke that has left her bed-ridden and fighting a huge bed sore. For a few weeks she was on hospice and we didn’t think she would live long.
Thankfully, she has turned around and is getting better. We are hoping she will be able to get out of bed and off her feeding tube in the future.
I’m my mom’s power of attorney and have had to make many medical and financial decisions for her.
One of the blessings of full-timing has been the flexibility of being able to be here. Because, I sold my home, I have a little bit of savings so I haven’t had to work and I’ve been available. If I was working and living somewhere else, I couldn’t have done that.
However, I did have to change a lot of my travel plans and the cost of staying in a very expensive RV park with no weekly or monthly rate has taken a bite out of my savings.
Now that my mother is stable and I know she is getting good 24 hour care, I’m planning on leaving. It has been a decision that I’ve struggled with.
However, as your step-mother said, I have to live my own life. The winters in Seattle and a nearly 20 year dream to full-time got me on the road last year.
As friends have told me, I can take care of her finances and make medical decisions from anywhere. I’m a phone call and an airplane trip (if necessary) away. My brother lives here and he had also been helping.
So I’m leaving again to head south at the beginning of October. It is with some guilt and misgivings, sure. But I also know my mom wants me to be happy and live my life.
Thanks for giving me a place to share this. I hope Barbara recovers quickly.
See you on the road!
Hi Rhonda thank you for sharing your story. I am really sorry to hear about your mother, but also glad she is doing better! You and I have so much in common on that front.
It is a tough balance to live your life and try to leave the guilt behind. We all just do our best don’t we? It sounds like you are doing a wonderful job taking care of your mother’s needs while taking care of your own too.
I look forward to meeting up with you on the road!
Thank you for the beautiful tribute to Barbara. You are both fortunate to have each other. I wish you all the best.
My life is best lived one day at a time. One moment in time is all we really have. Continued healing and traveling and playing and loving and laughing and crying to you and your family and loved ones and thanks for the touching account of life lived.
Beautiful summary Ann! Thank yo for reading this and offering your wisdom :).
Barb sounds amazing. What a great way to share with others what it’s like from both sides. Thank you for the story.
Thanks for reading it Kelly. I know you have had similar experiences, and I’m glad you enjoyed the article :).