Myeloma In Paradise: This Ride Never Ends
I recently returned from a holiday visit to our relatives on the mainland. For those of you unfamiliar with travel to or from Hawaii, the trip to anywhere out of state is LONG. A minimum of five hours of flying is needed to get anywhere. Our flight to Phoenix was six and a half hours this time.
After a lifetime of this kind of travel, you would think I would get used to it. You would be wrong.
It’s the same with my myeloma. You would think that after three and a half years, I would get used to the monotony of treatment side effects, blood tests, doctor visits, and the like. You would be wrong about that also.
Like a long plane ride seems to do, myeloma literally goes on forever – my forever.
The first hour on the plane is fine. You are excited about the trip, you’re happy to finally be going and getting settled in. The flight attendant is still smiling, and everybody around you is happy and smells of fresh soap and cologne.
The second hour is still pretty tolerable. You’ve gotten to read for a little while. You’re finally able to recline your seat the whole quarter inch that it will travel. The flight attendant has been around with the drink cart, and I’m happily chomping on my ice after having finished my mini bottle of gin. I’ve hardly noticed the baby two rows behind me now that he’s finally quit crying.
The third hour is where things start to go bad. Your book has become a challenge to hold because your eyes don’t seem to stay open. Your butt is becoming uncomfortable. Your seat won’t go back any farther no matter how hard you push on the reclining button, and your head starts to feel like it weighs about 150 pounds! The flight attendant doesn’t seem very happy anymore when you ask for another glass of gin.
Hour four is when you recognize you are ready for this flight to be over. Using the restroom is a test in sensory overload by this point. The smells are not for the faint of heart, but you can’t hold it any longer. Too bad there are five people ahead of you! The flight attendants have now retreated to their sanctuary in the back of the plane, and you’d better bring a whip and chair if you need anything. The gin has turned to body odor-flavored school paste in my mouth. My book is a complete bore, but no matter how hard I try to sleep, my numb butt and lower back keep waking me up.
The fifth hour is a lesson in group torture. My feet are swollen to the point of causing my shoes to explode. My butt has gone from numb to aching. My lips are cracking, and my mouth can’t seem to rehydrate. All the water I have been drinking is really making me want to pee something fierce, but the bathrooms are now a toxic waste site. The people around you have literally started to rot based on the stench they are emitting. The flight attendants have apparently jumped out as they are nowhere to be found. The baby is now awake from his nap, but his mom somehow doesn’t notice the constant screaming. Around this time you seriously wonder if you should have taken a boat.
The last hour finally comes, but then never seems to end. By now my legs, feet, butt, and back have revolted and gone into a permanent spasm. I’ve somehow lost my book, earphones, and wallet all within the two square feet I am occupying. The smells emanating from my fellow passengers as we descend have become overwhelming. I am seriously considering holding my breath for the last 30 minutes of the flight. The anticipation of finally getting out is dashed as the pilot decides a direct landing would be far too dangerous and instead chooses a landing pattern that takes us over Denver on our way into Phoenix. The flight attendant has reappeared with a dazed and dangerous look, although now completely ignoring everybody. After touchdown, the plane takes three days to taxi to the gate, which seems shorter than the time it takes for all those stinking people in front of you to finally get off.
Another flight is finally over.
This is exactly how my myeloma seems. Endless.
While I am blessed to not be in pain, the suffering from the treatment seems to go on forever. The worst thing about this ‘myeloma flight’ is that I am hoping it will go on forever.
I got on this plane not knowing how long the flight will be or where my exact destination lies. My doctor has told me it is terminal, but I’m not sure exactly where that is. I am in no hurry to find out!
Compared to many others, my flight has only just begun. Based on the experiences of others here, at three and a half years, it seems only like I am still settling in. Already, though, I am bored with this trip.
Just when I seem to get comfortable with the ride I am on, the medication causes a new and wonderful side effect (can you say projectile diarrhea?). I don’t want to be on this plane anymore!
While never getting as grumpy as the flight attendants on my real plane rides, my health care attendants often seem to have somewhat of a pasted look on their faces. Seems like they are saying “You again?", or “How come you’re still here?” I assume most of their patients don’t last as long as myeloma patients. Or, better yet, maybe they are healed.
My friends and family have grown tired of this trip as well. I am rarely asked how I am feeling anymore, although this is actually welcome. I struggle with keeping my life as normal as possible for the sake of my family, but I am growing weary of normal being a struggle.
Myeloma is my normal now. I would love the trip to be over, but only if I can land safely.
For now, I guess I just need to keep on circling.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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Well done Tom. It's nice to read the honest truth about myeloma instead of people pretending it's ok. This disease sucks big time and no one wants to be on this flight, but, unfortunately as you say, we're stuck circling with no landing that will be pleasant.
I am a carer and naturally am on the same flight, which is quite bumpy on a regular basis.
I've forgotten what 'normal' is, but I'm staying on this flight for as long as the petrol tank will last.
Good luck to you and your family. Travel safe.
I read your column with great interest, as I've been putting off a trip to Hawaii since my myeloma diagnosis 7.5 years ago. And because we live in Massachusetts, I've got to get to the west coast or Phoenix before I even begin to live your nightmare narrative! Thanks for the spot-on comparison between the plane ride from hell and living with multiple myeloma.
That was really funny Tom ... and gross
But I know what you are saying ... about everything you mention. I seriously don't know how myeloma patients fly without getting sick due to all the germy cross contamination! After my stem cell transplant in 2010, and 18 months of Revlimid maintenance, I thought I was good to go for a bucket list trip to Hawaii. Not long after getting settled in the hotel, a day or two on the beach, I wind up with a 103 fever, and I spent most of our vacay in the hotel. Haven't traveled by plane since, although we really want to return again. Stay well, and good luck flying back and forth. Thanks for your great columns!
Tom, your plane trip from h**l analogy is fantastic. We and our families are captives on this horrible flight, all are suffering, but nobody wants it to end. The only thing that you missed out on was bumpy weather at the beginning and then farther into the flight, punctuated by a few smooth patches. I've been at this for eight and a half and at times the turbulence has been bad enough to make me believe I was certainly going to crash. But here I am. We all pray for a safe landing. Here's hoping ...
So much enjoyed your article Tom. As I also have multiple myeloma and live in Hawaii, I totally understand those flights. We always fly into Salt Lake City, Utah for our vacations to visit with our kids and grandkids. We have actually been happy to get the non-stop flight that leaves Hawaii at 10 pm and we get into Utah at 6 a.m. I always ask to be seated close to the bathroom because I never know how my system is going to behave. I have been fighting multiple myeloma since October 2008 and also taking these wonderful plane trips. I just keep on going and am thankful that I can still take those horrendous flights.
Thanks for the realistic column, Tom! My husband and I have visited Hawaii many times, and it is a tropical paradise to us, coming in from the north! We try for 7-hour nonstop flights from Calgary now, or change planes in Vancouver. During the last two times we went, for a week each time, in 2015 and 2014, I did have bad colds from the recirculated air on the plane flights, once when in Hawaii, and once when we got back home. It still seems to me a small price to pay for having the opportunity to visit your wonderful state. I try to use the airport bathrooms before and after the flight and I wait for times when there is not a line up for the plane ones, when most of the passengers are asleep, since they are so cramped!
It amazes me still that one can completely change climate zones in less than a day. I had never left Canada for a holiday until I was a teenager actually (my family took us four children on a car trip to Disneyland one spring break). Early flights from Calgary to Vancouver that I took as a child on 'propeller' flights were always turbulent and I usually got 'airsick'!
Very funny. You'd like the narrative of the relocated Hawaiian as he goes from enjoying the first snowfall of the season in Buffalo until the last #?!%^$> snowfall. (Sorry I picked you, Buffalo, but I lived near there for several winters - and I think snow is pretty.)
Realistic and funny! As I started reading your article, I thought of my car ride home last week after the area was hit with the largest snow storm. The state decided to plow the extra lanes they missed on the main roads, 4 days later, during rush hour. My 8 mile ride, which normally takes 15 minutes, took 2 1/2 hours.
You are so correct with the comparison of the endless journey of myeloma. Your life is guided by the healthcare providers like the pilot or copilot of the plane. You must trust them.
Thanks!
Awesome article Tom!
Your story had us laughing and crying. We have made that flight to Hawaii many times since I used to perform my Army Reserve duty at Tripler Army Medical Center. As you can imagine, the Army always went for the cheapest fares, resulting in the most miserable trips. Later in my career, I learned how to book my own flights with my carrier of choice. Sometimes I ended up paying a little more, but the comfort was worth the extra cost.
The idea that our multiple myeloma journey might come to an end actually scares us. In our mind at this time, there are only two options – a cure, or the cancer wins. Despite some of the hardships of having multiple myeloma, we are willing to endure the discomforts of this journey. As with my Army career, we are trying to make the best choices on our own terms to the best extent possible.
Great column Tom. You exactly addressed what is likely on the mind of all myeloma patients.
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