Letters From Cancerland: Further Down The Road
I am now the proud possessor of a Rochester Library Friends’ Bookstore punch card.
I was back in Rochester, Minnesota, in September for a quarterly check at the Mayo Clinic. I had arrived in town from Oregon a few days before my appointment, to give myself the opportunity to collect my urine in relative comfort and without the oversight of the TSA. My husband Warren had not yet joined me from Ohio. So exploring the town on foot, albeit never too long or far from my hotel room, was the order of my days.
Like Thomas Jefferson, I cannot live without my books, so finding the library was a given. The Rochester Public library is located in the heart of downtown. It has a splendid mural of stuffed bookshelves on its west wall. Even better, it has the Friends Bookstore – a small but well stocked bookstore that sells library castoffs and good quality donations. After an hour in the library reading, I hit the bookstore.
Even though I am of an age where I am trying to shed myself of worldly possessions, a good book will always tug at my heart. I was not disappointed. I managed to score a copy of Jill Lepore’s The Mansion of Happiness for two dollars. And then I came across a vintage Dictionary of the American Indian (don’t even start me – this is like collecting racially offensive material if you are a member of the race being caricatured) for my Chippewa daughter-in-law, who works at an urban Native American center, and procured that as well.
When I checked out, the volunteer asked me if I had a punch card. If not, would I like one?
The Friends’ Bookstore punch card is a frequent flyer incentive. Buy nine books and the tenth is free up to three dollars.
Oh joy! Rapture!
In addition to the library and its splendid bookstore, Rochester is a center of the Little Free Library movement and without even trying I found six of them within easy walk of my hotel. (Yes, I brought home a book from one of them as well.) There is a wonderful regional artists collective store in the downtown, which I wandered through and bought note cards (being cheaper than the artworks, which I also admired) as I am one of the last humans in America who still communicates by letter. And of course, there is the punch card.
But I was there for oncology, not books or notes. What my oncology appointment revealed is that after one full round of Kyprolis (carfilzomib), most of my numbers are headed in the right direction. My M-spike had not yet caught on to the program, but my oncologist cheerfully said I really needed two full rounds of treatment before we knew for sure.
Based on what he saw, he was greatly encouraged and positively beaming. This is “very promising,” he said – despite the fact that since I saw him in June, doctors found that I have amyloids in my liver.
I am settling into the treatment routine at home. I do treatment for two plus hours on two consecutive days for three consecutive weeks, then take a week off. By mid-October, I will have two full rounds of treatment under my belt.
Treatment could be worse. I am mostly queasy rather than nauseated. It is tiring, both immediately after and later into the week. The worse side effect is the enormous holes it blows in my schedule, even with a part-time job. And if I don’t pace myself, especially starting each week or each round, I am prey to a night of chills and fevers and feeling a whole new layer of lousy.
But it could be much, much worse, and I am grateful it is not.
I will return to Rochester in January. By then, I will have five or six rounds of treatment behind me, barring any failure of the same. I’ll carry my treatment notes, my urine collection equipment, my warm winter clothes, my hopes and my fears, with me.
And my Friends Bookstore punch card.
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 .
Thank you for the book highlights of Rochester! I love books too.
We head back to Mayo on Thursday for another round of D-Pace. We were also there for the month of September, and on my many walks, I too, discovered the Little Free Libraries (wanted to upload a picture, but couldn't figure out how!). I did not know about the punch card, so will definitely check that out on this visit.
Thanks for the nice column about reading. Hope that your treatments are going well too! I think we have 'Little Free Libraries' here too! They look like bird feeders but have books inside, and I have seen them on walks! I use the public library quite a bit, and am also in a book club.
How nice to know of another myeloma patient who loves books, as I do, and writes letters/notes, as I do. I have done much walking in Rochester, but not recently.
Hope your treatments continue to go well.
I love books too. I haven't been to Mayo in 2 years because my insurance has changed. But I used to go to the Barnes & Noble there and treat myself to a few books every time I went. Have you tried milk thistle? It is a good herb that supports the liver. So glad things are going well for you.
April, how long is your Kyprolis infusion? At first mine were the standard 10 minutes per Kyprolis directions. I found that if the Kyprolis infusion is spread over 30 (actually 32) minutes, I feel a lot better afterwards and in the days to come. Also drinking a lot of fluid during infusion time helps quite a bit. I will check out the Friends punchcard in November while being tethered to the hotel room. Thanks for the suggestion!
Thanks April for your uplifting message. I too love to read but no punch card for me, have to look into that.
Hi, April.
My induction therapy consisted of intravenous Kyprolis and oral dex 20mg on 2 consecutive days. It worked miracles in my case. I did feel pretty lousy for the first several days after the treatment, though I did not have the fevers you describe. Just as I would start feeling better, it would be time for the next treatment. I did find that as the treatments progressed, the side effects became easier to tolerate. I did have problems with nausea. I first tried Zofran but found that it did not work. My doctor then prescribed Ativan and that worked like a charm. Yes, it can make you sleepy, but the dose is very small and the sleepiness went away after a while in my case. I hope that the Kyprolis regimen works wonders for you, too!
Olga
Hi April,
It's closed now which is unfortunate, but Barnes & Noble had a spectacular bookstore in an old movie theater in downtown Rochester. The ceiling looked like the night sky! It was always one of my favorite parts of Rochester as a child.
April
If you could give us as much detail as possible on your Kyprolis treatments, that would be great. I am coming to an end of my Revlimid treatment, and I have read that going to a proteasome inhibitor is better than going to another treatment of the same family type like Pomalyst. Don't give information if you are reluctant to, but knowledge gained first hand is a valuable tool for all of us contemplating a treatment change. I love old books also, particularly old Bibles.
Thanks
April, Henceforth,.... I shall call you "Eric."
You constantly remind me of Monty Python,( ie. Brighter side of life) and their infectious over-and-undertones. Especially your dispatches from "Camp Mayonnaise".
You have a gift. Keep it coming!
I always love to see the book omnivores issue forth from every corner of the planet!
Eric asked for "as much detail as possible" about my experience with Kyprolis. I am receiving 37 mg (in dextrose) with 4 mg of Decadron (dexamethasone) 2 consecutive days, 3 consecutive weeks, with one week off in between. There is a saline flush before for an hour (500 ml) followed by a 30 minute flush (250 ml) afterwards. My Kyprolis infusion is over 10 minutes; you will see above that Barbarah has a different infusion rate. All of this is done intravenously; I do not have a port (still on the fence about that decision).
I have had some queasiness, rarely rising to the level of nausea, from the treatment, usually hitting in the evening (I tend to do my treatment in the morning). For that I take 10 mg of Compazene (prochlorperazine). Sometimes I run a very low-grade fever. Tiredness is no more than usual; the Decadron interrupts my sleep (which is why I am writing this at 4:45 a.m.).
Ironically, because I experience what I call "myeloma sickness," I feel best the days of chemo. The sickness will return sometime later on the day afterwards and last until the next cycle. My oncologist and I are reluctantly concluding that I have always experienced this in some form, except for a few precious years after my initial stem stell transplant, and that's just the way it is.
At this point, with my 11 year anniversary a month away, I am an outlier, so take my experiences with that knowledge.
We just looked at labs after two full rounds of Kyprolis. The numbers are headed in the right direction. However, my alkaline phosphatase remains at the high border of "normal," presumably because of the amyloids taking up residence in my liver. Doctor/author Atul Gawande called it correctly: even when you are in remission from an incurable, terminal cancer, it is always out there on the night brigade, taking down the perimeter defenses.
Rneb, thank you. Your comment made me smile. My older brother just died Tuesday night from an aggressive liver cancer, and your reference to Monty Python brought the "I'm not dead" (MP & the Holy Grail) to mind immediately.
Hello again, April.
I am so sorry that your brother died. Please accept my sincerest condolences.
Olga
April, I am so sorry to hear of the tragic loss of your brother. Please accept my deepest sympathies to you and your family at this time.
April
Thanks for the details.
Sorry to hear of your brother's passing.
Thanks again.
April, your literary talents are a gift for us to enjoy.
Like others I too send my sympathies in regards to your brother understanding what your family must be experiencing. I lost nearly all my closest family this year, including brother unexpectedly. Only one had cancer.
Each day is a gift indeed.
April, I read your article with a two fold interest. My best friend died of multiple myeloma at the age of 53 in August of 2014. A year later, my eyes still well up with tears just thinking about her. For 4 years, I walked that path with her after an initial diagnosis of one year, so she hung on for as long as she could. Bless you in your journey, may there be a complete cure in your lifetime.
Secondly, I am the Executive Director of the Rochester Public Library Foundation. So THANK YOU for sharing the great things our library and Friends Book Store have to offer. And yes we just partnered with the Leadership Greater Rochester Chamber of Commerce program to add 40 new Mini Libraries throughout the city.
FYI for any other followers. If you are a MN resident you can check out books at our Library for free. If you are our of state, we do have a $1 a week cost to check out books. We are so glad you love our Friends Books Store. I too miss Barnes & Noble downtown, but you can buy a lot of the same books at our bookstore for a lot less money.
Thank you again and best wishes to you and your readers. I also worked at the Gift of Life Transplant House for a short time and have a unique understanding of some of the issues you face on a daily basis.
God's blessing to you and all.
Vicki Allen, Executive Director, Rochester Public Library Foundation
P.S. - Stop up and introduce yourself when you are "in our neck of the woods".
Thank you one and all for your thoughtful comments and condolences on the death of my older brother. Last week was a long, strange and difficult week, concluding with a celebration of life service in which tears and laughter were shed. If you want a sense of who my brother was, read his obit, which he wrote just days before he died.
And thank you, Vicki of Rochester. Your note about the library brought a smile to my face!
April, I'm sending lots of well wishes for continued good response to your treatment, and my sincere condolences for your loss. I hope that you can curl up with a good book and find lots of peace in the days and weeks ahead.
Hi April
Glad to hear your numbers are trending in the right direction. We wish you well as you go through these rounds of chemotherapy. My husband went through a similar round of chemotherapy of Kyprolis and dexamethasone this past summer but stopped in order to go through a stem cell transplant. He is Day +66 from the stem cell transplant and is starting to feel "normal" after 16 months on the multiple myeloma journey.
While he was on Kyprolis he was really tired following treatments but did not experience any other adverse symptoms. His oncologist had switched him from Velcade to Kyprolis and much of his previous neuropathy disappeared.
Thanks for sharing your adventures on the streets of Rochester and the information about Rochester's library services and the richness of their mini libraries. If we ever make it up there, we will be sure to check them out.
As always, I will look forward to your next article.
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