Letters From Cancerland: Leaving On A Jet Plane ... Again
I am scheduled to see a myeloma expert at the Mayo Clinic on the first Tuesday in June.
These past several days, I have been busy gathering the requested medical records, sending the required insurance information, and arranging for the glass slides of my last bone marrow biopsy to be shipped to Minnesota.
As I pull together the various pieces of the trip (including making sure the home front is covered), I am reminded of a line from a wry review of a children’s book by E. B. White. The book contained “the priceless sentence: ‘The Safe-Way Club had two weeks to get ready for the [PTA meeting], and what busy weeks they were!’”
Busy indeed. I just booked a hotel room.
Thanks to modern technology and the medical world’s conversion from paper to electronic media, I was able to download two and a half years of lab reports and clinic notes onto a stick drive, which I will carry with me to Minnesota. My diagnosis predates the widespread use of computerized medical records and the advent (long overdue, in my opinion) of patient portals for easy access to records.
I still have a large file of many of my older medical records (all paper). I skimmed it a few days ago to make sure I did not have some old record tucked away that Mayo might want. I did not, but I did come across an email exchange that I had printed out a decade ago and tucked away with the medical papers.
The email is dated April 22, 2005, which means I was only a few weeks away from heading to the Cleveland Clinic for the first of two stem cell transplants that summer. I wrote my friend Linda that I was struggling with exhaustion, then added:
There is also this feeling that despite all the love and support of friends and family, after weeks of preparation, we are finally at the departure gate, and I am the only one getting on the plane—the only one allowed on the plane – and that is hard to take!
Linda was a close friend, so close that when I met my oncologist for the first time, she sat in the examining room with me, holding my hand. Linda also was a nurse when she was younger. She replied:
Oh my dear, in the end, we all get on that plane alone. That came to light early in my other life as I held hands and did the silent vigil with so many souls. Some had round trip tickets, some did not. [My therapist] said that learning to comfort ourselves is an invaluable lesson we learn over and over again as we deal with the difficulties in our lives. The coping skills you have developed from the years you have already put in will be fine tuned in the next few weeks. While we aren’t in the plane, we are watching your progress from the tower and we [will be] in contact with you as much as you will let us.
For the most part, I am not someone who spends time dwelling on “what was” or “what might have been” or that energy-sapping “what if?” Don’t misunderstand: I love history, including personal history. But I tend to keep my focus on the here and now, not on the then and was. So I found it interesting that I kept this email all these years, only to have it resurface while I prepare for another venture into the unknown.
In recent months, I have had the strong sense of time running through my fingers. As many of us, columnists and readers alike, know, the treatment for myeloma extracts a toll on the body even when the myeloma is quiet. For me, the lesson is to stop clutching my fist so tightly. I can no more hold onto time by grasping it harder than a child can hold water in her fist as she runs from the water’s edge back to her blanket.
This email resurfacing this month reminds me to open my fist. I am at the terminal and the plane will be taxiing up the gate shortly.
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 .
Hope it goes well for you, April.
I'm getting ready for a second opinion at UCSF, so I'm wondering why you gathered everything and it wasn't sent electronically by your doctor. When I first called UCSF, they said it's easier to have the doctors office send stuff, but if I wanted to, I could. I was overwhelmed by that, so I'm going the other route. I wondered if you had that option.
April, your column this month is as beautifully written as it is touching.
It's so true; some things in life we must face alone, despite those who would be there with us if they could.
I hope that you will feel supported as you journey to Minnesota. Know that all of our thoughts are with you, your readers and fellow columnists, and we're hoping that you get a good report.
Christina: In my case, I see my oncologist through a clinic run by a regional health care system, so the system and not the oncologist controls the records. I have been dealing with this system for years, so in my case it was not overwhelming to request the necessary documents. Interestingly enough, the instructions from the Mayo request that the patient bring the records personally to the initial appointment. I wonder whether that is to minimize lost, misplaced, or tardily arriving records. The only requested items that had to be handled hospital to hospital were the glass slides from the last bone marrow biopsy as those are not released to patients!
Thank you, Tabitha.
April, your column is wonderful and very moving. Thank you so much for putting into words what so many of us feel.
April, thanks for the column. I will also be at Mayo on the 2nd of June; Mayo 10 East. Good luck.
Mike, I too am at Mayo 10 East, starting 8 a.m. I will be the grumpy patient who had to fast starting at 7 p.m. on June 1. I don't do well skipping breakfast.
April, I thought you'd be on 10 east. I start early also. If your picture is at all accurate I'll look for you and introduce myself.
April, Your first appointment should be the blood work. After that you should be able to skip downstairs to the food court for some breakfast.
Mike, thank you for the reassurance on the breakfast front! (Whew!) As for whether I look like my picture, yeah, kinda sorta close enough.
Hi April,
What a great column! And what a great email exchange with your friend, Linda. I love your analogy and Linda's reply. Lots of wisdom from both of you. Thanks a lot for sharing that with us.
You've got lots of friends here at the Beacon who will be watching you from the tower and wishing you all the best on your next flight.
Mike
April:
If you've not been to Rochester, Mn previously, please do not freak out about how pervasive Mayo's is in the local community. It's almost like a small College town, as much is geared to the institution. Buses and shuttles full of patients, all making their way to one of 5 major Buildings/ clinics, ....instead of to Athletic Arenas.
Except their football/Basketball teams really suck.( actually, non-existent)
I have never been there as a patient--but wore my Lawyer hat on 5 trips there for depositions, etc.
Air service is best via Mpls/StP, with a rental car. Puddle jumpers to Rochester are kinda dicey, mostly because of "Minnesoter Nice" (delays) and the weather.
I drove for the last 2 trips. I skipped the "Plane" and just drove the 510 miles. The Total time was the same.
You will do well. If you do get on that metaphoric plane taxiing up the tarmac, it will be a good "flight" for you.
Looking forward to your insights and thoughts, on your return. Keep fighting.
A song just popped on, with these lyrics--that seems appropriate:
Walking on a thin line
Angry all the time
Take a look at my face
See what it's doing to me
Walking on a thin line
Walking on a thin line
Walking on a thin line
Fight on, Girl.
As Rneb points out, Rochester is like a college town, only the college is Mayo. It is quickly obvious even to the casual internet observer (i.e., me several weeks ago) that Mayo dominates Rochester. All that keeps coming to mind is "company town." I would also note that there IS a minor league baseball team in Rochester, the Red Wings, which are a AAA team. The Red Wings will be IN TOWN while I am there. Assuming the weather is at all halfway decent, nothing better than sitting in a baseball stadium listening to the thwack of a bat ...
Despite my flight analogy (and thank you, Mike Burns, for your comment), I will not be flying to Rochester or even to Minneapolis. We will be driving to Madison, WI on the 31st (family, especially a sister-in-law with whom I am very close) and then drive on to Rochester on June 1. On the reverse trip, we will drive Rochester to Chicago (well, Oak Park), which will just about split our mileage in half. I guess I could have written about being on the road, invoking either Kerouac or Kuralt, but 10 years ago the plane analogy won out.
Sorry April, but unless there is an amazing coincidence, I believe the AAA Rochester Red Wings reside in Rochester, New York, not Rochester, Minnesota. Perhaps there is a different Rochester, Minnesota minor league baseball team?
Joseph, you are absolutely correct. Wrong Rochester. I am bereft!
Great article April!
Your friend's letter was excellent; thank you for sharing it with us. I too am holding on with clenched fists. In my case, it's to see my children to adulthood. I sometimes convince myself that it's up to me. Its important to remember that I am not in control here.
That is VERY hard for me to accept.
Good luck on your trip. Try to enjoy the ride! Its all an adventure.
Aloha
Tom
April,
The Mayo is an amazing place, and very efficient. I stayed there last November and December for my stem cell transplant after making 2 trips for testing. I met with Dr. Kumar and Dr. Gonzalvas, really nice doctors.
Ask a lot of questions, they aren't on a clock, take as much time as you want.
If you have time to kill, check out the Plumber building, it's fascinating.
Their motto is, the patient comes first, and it shows.
I assume a lot of us have been there for treatment so don't be afraid to ask questions.
Mike M
Mike & April:
I first met Dr. Gonsalves last September for a 2nd opinion. He is a fantastic doctor, and has helped me immensely as I have both smoldering multiple myeloma and a heart condition. His insight made it possible for me to have a knee replacement surgery when no one locally would entertain the concept, and that helped with the heart condition. I just wish he was nearer so I could see him instead of the local oncologist. The Mayo concept of the patient comes first is SO very evident. Take a good notebook and ask all the questions you can think of. They want you to understand everything!
Mona Dee
April, looked for you but didn't see you around Mayo 10 East. Hope you had a good outcome.