Letters From Cancerland: Song Of The Open Road
We have been trying to plan a small vacation. The operative phrase here is “small.”
A friend of ours is getting married in August in a Monday evening ceremony in the Cincinnati area. That means an overnight stay and puts us about 120 miles south of our front door. At the end of the same week, we need to be in Chicago for two nights of concerts, including a world premiere.
Those two events, bookends to the week, pretty much chop the work week into little tiny pieces. So why not take the week off and travel a bit?
I want to. Except when I don’t.
For much of June, I traced routes in the road atlas. Cincinnati to Knoxville to Chattanooga to Shiloh, then up the Mississippi River past St. Louis and on into southern Illinois. Springfield, then Chicago.
That route would be over 1,300 miles, or a little over half the distance to Portland, Oregon, from our doorstep. And that doesn’t count the return trip of 300 miles from Chicago.
My fingers would stutter on the atlas. What if I got tired? What if I got sick?
What if I disappointed myself?
I would set the atlas aside for a few days until my husband Warren would ask, “So any more thoughts about vacation?” I would give some vague reply that fooled neither of us. I was dithering on the decision.
Don’t get me wrong. I love to travel. I mean, really love to travel. I come by it honestly: I am the daughter of a man who loved getting out of our small town and seeing as much of the country as he could. Yellowstone Park, Expo ’68 in Montreal, New England, California. Not bad for a young blue collar machinist, his even younger wife, and their four kids. These were all car trips, and we camped as we went. As a law student, following in my dad’s footsteps, I could and did on more than one occasion drive nonstop, door-to-door, from Portland, Oregon, to Delaware, Ohio, in 48 hours.
Those were some pretty intense road trips, even by my childhood standards.
So what am I doing in 2014, looking at the atlas and balking?
I know why. I am presently undergoing treatment with Revlimid (lenalidomide). After five full courses, about to begin the sixth, the lab results are good. (We’ll overlook the fact that my myeloma often presents well in labs while flying below the radar and doing damage to my body.) But the Revlimid is wearing on me physically, and exhaustion, frequently followed by low-grade fevers and feeling sick, is an increasingly constant companion.
A consistent thread picked up by many of the columnists for The Myeloma Beacon is the toll myeloma extracts from each of us. It wears us down. It demands much of patient and caretaker alike. It forces us to decide between courses of treatment that could kill us and a cancer that most certainly will kill us.
Must it take my vacation too?
I hate shaping my life around the threats of myeloma: the threat of illness, the threat of exhaustion, the threat of not being able to do the things I want to do. I am willing to concede some ground when necessary, but not willing to scrap every last activity until it is absolutely necessary.
On the other hand, I knew deep in my heart and in the pit of my stomach that I was not up for that kind of intense traveling in such a short time frame.
As it turns out, after the recent Fourth of July holiday weekend, my vacation conundrum solved itself. Our local symphony (and hence my husband, and by extension our household) had two concerts that weekend, one here in Delaware, Ohio, on the 4th, and the other on a Lake Erie island on the 5th.
The afternoon stage setup and late night on the 4th led to an exhausted start to the 5th for me. (Never mind the tree branch I walked into the morning of the 5th, gashing my scalp and nose.) A long, long day and night on the 5th led to my being utterly done in. I didn’t do any heavy lifting either of those days, but I did plenty of other tasks.
By the morning of the 6th, when I woke up, I was beat. I was way past beat. I was sick-crawl-into-the-corner beat. Not that I didn't have a good time (well, the tree was no fun). The weather and the concerts and the friends were great. Just spectacular. But I was beat.
Although it wasn’t pleasant being that worn out, it served a purpose. I could now look at those earlier vacation plans, the ones I could not commit to, toss them, and start all over again.
We could head west from Cincinnati to Columbus, Indiana, and then on to Springfield, Illinois. Tour the Dana House (designed by Frank Lloyd Wright), and then Lincoln’s tomb, before driving north to Chicago. This route eliminates about half the miles and puts us in Chicago midweek. The whole trip fits better within the parameters of the week and the parameters of my life. And I’m not dithering anymore.
When I floated the idea to Warren, he immediately agreed.
So that’s the plan. And here’s the lesson I learned from that glorious holiday weekend.
If I am going to do a bigger vacation, I need more downtime built into the vacation. I need to rest and renew myself. I need to give myself permission to take it easier on myself and my body. I don’t need to sit at home and waste away, but I do need to acknowledge that life is different.
There is a fabulous ice cream parlor in Columbus, Indiana, that I can’t wait to sample.
Some things never change.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi, April!
Excellent article. I could really relate to "toning down" things nowadays because of our treatments/drugs. Travel (I love it!) is one of the things for me, too. Just shortening the trips (doing day trips and weekends, and even touring my own local area - lots to see that's pretty here in central North Carolina) works for my husband and me. Your new plan sounds like a lot of fun plus interesting - enjoy your vacation.
Sylvia B.
April, a wonderful story out of real life. It helps me if I stretch out my travel time. I will go to the Netherlands for two weeks, planning extra relaxing days in between my visits to relatives and friends. I will fly by myself but ask for a wheelchair at the airport to save energy. I am still on Revlimid after transplant and two three-way treatments. My husband can't join me this time, but will bring me to Chicago O'Hare and my two sons, sister and girlfriend will pick me up in Amsterdam. Total travel time will be approximately 18 hours. I can do it because I want to see my Dutch loved ones, not because it is not like running a marathon for me. Hope your journey will be wonderful as will mine. I recognize the nausea and the total weakness that can hit me too with a hammer, but no multiple myeloma will keep me from living my life to the full.
That sounds like a nice road trip, with special events beginning and ending the week! Summer is good for this kind of travel, since the icy and snowy conditions of winter roads are all but forgotten. Glad to hear that the Revlimid is helping you, but sorry to hear about the exhaustion and accident at the big concerts. Were they outdoor concerts? Another nice feature of good weather.
Last week I was out on Vancouver Island, and my Mom, one of my sisters and I took a ferry ride to Denman Island, one of the Gulf Islands. Don't know if I would want to do that in winter, since it can be really rainy and cold in the winter there, and the water can be choppy. We stopped at an ice cream stand near the ferry terminal. Have you ever had chocolate rhubarb ice cream? That was a delicious treat on a warm day! Have a nice time!
Aloha April,
I can sooooooo relate to this! One of my favorite things is to travel to exotic places. Unfortunately I am finding that I need to really gauge what I can realistically accomplish. I try hard to live my mantra of "Carpe Diem," but the meaning needs to be adjusted now.
I too am now on Revlimid as maintenance and am still getting used to it. Sometimes I just get suddenly exhausted and I can't figure out why. As my friend pointed out, though, this is much preferable to pain and death, so I need to accept it and move on. Easy for her to say! My friends and family are still getting used to the current me.
Keep trying to get as much as you can out of what you have! Thank you for a great article.
Aloha
Tom Shell
I am a fellow MM patient. I had a stem cell transplant last July and I am in CR. I live in Columbus, IN and have had ice cream at the Zaharokos many times. YUM ... I hope you enjoy it and your vacation.
Oh, April, I always get excited when I see you have written a new article here. Your writing, your life, you -- are beautiful. This one brought me to tears that are oddly comforting after being up since 3 a.m. for a a long doctor / hospital day with my hubby, a 7-year myeloma warrior.
April:
Fun,Fun, Fun. Go and enjoy! Lincoln's Birthplace/Springfield / and Wright homes are things I'd love to do.
I too, miss the open road. Me, of 30K flying/ 20 K driving every year while doing the Litigation Defense gig, from 1985-2004. Always enjoyed the side roads and Odd "off the beaten path" sites. ( I once walked into a Jack Daniels scene shoot and was an inadvertent "extra"--maybe I ought to drink the stuff ?--Can't now- meds!.)
I stopped traveling heavy in 2004-06, opting for a more "close to home practice", as the kids needed me at home.
We tried to get a vacation together this Summer--but just too many obstacles to pull together--and then Jury Duty ( Yes !?) on a murder case ( It just settled) , and a Trial Setting ( It's going), a son in Med school, #2 son in Summer school, etc..yuuk. Scratch those !!
We'll try the Amtrak (Zephyr) to SF and environs, next year. I won't have to drive, ...'cept in californiiaay, etc.
Revlimid.
At about months 6-8, I stopped having my 2-3 days of "Monthly Fevers" and Flu like malaise . I also began eating much more veggies/ fruits ( zaps Constipation), and I began using a diuretic, so I wasn't up all nite, dribbling a bit of urine.
Daily Fatigue has lessened by 40% +/-. Although, Sat a.m. it's really hard to get out of bed--if the week has been busy. An accumulative thing, now ?. I'm 10 Mg daily (30 days)--no break. Blood work is holding up, and M spike is 0.1 g/dl.
Hopefully, your body will adjust, too.
Great news re: your Labs....nice when therapies work. Take a tablet/ Lap-top and Blog ?? Dictate in your thoughts ? Lots of fun you can do, besides counting license plates !
Have fun.
Good luck.
Dear April,
I hope you will consider going to the Abraham Lincoln Presidential Museum in Springfield! It is very well done and appeals to all ages. Of course, his tomb and the FLW Dana Thomas house are very worthy, and I know you have to conserve your energy. It would mean a night in Springfield to do these three justice.
BTW, Lincoln was not born in Springfield, but lived in the vicinity, or in Springfield proper, as a young adult and until he left for Washington. His home is here and open to the public. The old state Capitol where he gave his House Divided speech is here, and his law office is here. (Also the rail station where he made his farewell address ... you get the idea.). On Wednesdays between 12:00 and 1:00 pm, you may take lemonade with Mr. Lincoln at Edwards Place, 700 N Fourth St. It is a free aspect of History Comes Alive, and Mr. Lincoln will chat and gossip during refreshments. (Every Wednesday through August 27)
Best wishes for an enjoyable trip and the energy to appreciate everything you decide to do!
Barbara H, who is a long time resident of Springfield with MM
Nice article. My mother also lives in Columbus IN. She was diagnosed with MM in December of 2013. She too, is struggling with exhaustion. Are any of you (Julie Phillips or anyone else near Columbus, IN) seeing a MM specialist near Columbus? Or are you at CRH getting treatment? Any input would be appreciated.
Tina Ellis - All of my treatments were done at CRH by Dr. Conte. Velcade / dex (1 round), Revlimid / dex (2 rounds), however my stem cell transplant was at IU Simon Cancer Center at the Indianapolis IUPUI Campus, by Dr. Abonour. I see Dr. Conte and Dr. Abonour regularly. I am feeling much better since my SCT, but chemo made me feel exhausted and the SCT was EXTREME exhaustion. I still have days, and parts of the day, that I need to sit / lay down. I love my naps. I have my monthly Zometa treatments at CRH. I like having both teams (CRH and IU Simon Cancer Center) helping me with my journey.
April
I am one into one year of Revlimid and deX. I found the extreme tiredness occurs as I get close to the end of the 21 day cycle. I can usually feel it "getting ready to pounce" a couple of days before the end of the cycle. This sort of annoyed me because it always seemed to ruin my "week off" from treatment plans.
I tried increasing my iron and B12 supplements at this "getting ready to pounce" point. Amazingly, it worked. The tiredness did not totally go away, but the feeling that I had to lay before I fell down, was avoided. This has been my regimen now for the last few cycles.
Hi April,
Great article. I applaud your balanced perspective, and I hope that you can really enjoy your time away. You mentioned Dana House designed by Frank Lloyd Wright, so, if you can squeeze it in, I highly recommend the Chicago suburb of Oak Park, where you'll find Frank Lloyd's Wright's home, studio, and a church designed by him. Ernest Hemingway's childhood home and museum are also there. My husband and I loved the area when we visited Chicago a couple of years ago. There are lots of great shops and neighborhood eateries along tree-lined boulevards, with plenty of nice places to rest and people watch. It's also close to Chicago and accessible by cab and subway train. Happy travels!
Hi April,
I too, am on Revlimid + dex for a relapse after 4 yrs of post SCT remission. Diagnosed in 2008 at 59 y/o.
Because we were looking forward to traveling around the U.S. (love to bike kayak, hike), we bought a used 19' Class B RV to be our home away from home. A fridge, all built in. We stop when I need to rest and I can take a nap on the bed for an hour if needed. We also drive only as far as I feel comfortable on any given day, always stopping for night before darkness. We have a generator and water tanks, so we are self-contained as far as electrical and water needs. Its small size allows us to park in friends' driveways or on the street. Campgrounds and state parks are easy to find and inexpensive for overnight stays.
This past March we drove from Massachusetts to Florida and back, visiting friends/family along the Eastern seaboard. All in all, we drove 4100 miles in 31 days. I was never overwhelmed with fatigue, as we could pace ourselves. Having the "comforts of home" in a small 19' camper makes all of the difference!
None of us with MM should allow the disease to prevent us from what we enjoy doing, especially at this point in our lives. I found my "way" to travel (albeit only where I can drive!) and enjoy outdoor activities, especially in the cold New England winter months. You'll find your way, too. Keep looking!
I love all the comments as to travel, vacation, living life fully, and life with Revlimid. Thank you! As the time draws nearer, I keep tweaking the plans: Springfield may have to wait (again) so we can get to Chicago. (Turns out I have some serious pie tasting to do in the Windy City.) Tabitha, we will be staying in Oak Park at a family member's condo; both Warren and I are longtime Wright admirers and we have often walked the streets to look at what Frank LLoyd Wright wrought in Oak Park (and as a freshman at the University of Chicago, my dorm room was right across the street from Robie House, so I was immersed in Wright from the first time I ever set foot in the city).
This really hits home for me. I was diagnosed at 61 years old, one year ago this month. Revlimid / dex in the fall with good result, then ASCT this past February. Now on two months consolidation with Revlimid / dex and will go to 10 mg maintenance in Sept. Rev/dex has resulted in little side effect, and I have continued to work as a college prof, although I am going to half-time beginning fall semester!! I get a bit of fatigue with Rev on occasion. Will be glad to see dex in the rear view mirror (an insomnia thing).
Now the travel story. We booked a 16 day tour of Turkey, leaving August, 2015! There are moments I think we are crazy to do this, especially after a deep vein thrombosis episode just this past Saturday while traveling to visit my sister in Tennessee (a blood thinner seems to have taken care of this, for now). We have purchased trip insurance for Turkey, and I was encouraged to go ahead with this trip by my local doctor. I know the trip will be a fantastic experience. And I may have to take "off" an activity or two depending on fatigue level. And our course with MM can change in a year. But we are "signed up" and looking forward to it, and not worrying now about what "might be".
Thanks, April, for the wonderful column.
@ Richard: Turkey! Wow, wow, and wow!!
I understand the half-time from full time transition. I've worked part-time for the last 8 years as a result of treatment, recovery, fatigue, and, truthfully, feeling there was more to life than just working.
I hope your trip includes Troy. (How could any trip to Turkey not include Troy?) You don't happen to teach classical languages, do you?
April,
I dont know if you remember me, but I think of you often. We first met about 4 years ago at lunch at the Cheesecake Factory. We were primarily talking about mediation for Delaware County, but we soon came to acknowledge that we both had chronic illnesses (me lupus, you cancer). You inspired me to try to live with my health as opposed to just exist (and you gave me some high-producing seedlings for my garden that year, which I had not maintained in years because of lupus). I figured if you could fight not just cancer, but a chronic cancer, I should be able to adjust to the lupus.
I was going through a divorce and raising an autistic son. We worked together for about a year and then the lupus hit hard, attacking my heart and then, after hospitalization, catching pneumonia collapsing lungs et al. The next 3 months were hazy, then having to recover was difficult. I was back home in Atlanta with my parents by then and I think I gave up again. I received several more emails from you and, though I greatly appreciated your thoughts, I felt unworthy of them - how could I render myself done when you battled cancer?
April I stayed in that mindset for almost a year and a half, then I found a mental health team that helped me cope with the depression and also could take into account the effects that chronic illness had on one's emotional / mental being. I got better and I was truly happy (no matter my physical state) for the first time in years.
The lupus continues and is began attacking my brain, leaving me with grand mal seizures, but I thankfully I found a great neurologist and I've been seizure-free almost eight months. Well, through all of that I've been dating the same man (I remember you telling me how you reconnected with your high school sweetheart after a divorce), and I have moved back to Columbus. It's still crazy, though, as I have been at Saint Annes dealing with pancreatitis off and on for the past two weeks.
I would love to see you again, early September probably the soonest, as I'm still moving and the boy (as I often refer to my son) has to go back to school. Its great to see you still so vibrant and enjoying life even through this latest crisis. You continue to inspire and, from all your comments, not just me. I hope to hear from you.
Kim
PS My typing sucks. I had a perfect score on my SAT in grammar 26 years ago :-).
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