Myeloma Dispatches: Unexpected Gifts
This year, the autumn colors have been unusually magnificent here in Colorado. I believe this Indian summer has been the finest show in recent years.
The riot of colors on the hillsides created a contrast to what was happening to my body. Multiple myeloma cells were advancing aggressively and reducing the production of normal blood cells. I became acutely ill with severe anemia, easy bleeding, and shortness of breath.
My husband Mark and I had planned a three-week trip to the East Coast for the end of September to revisit the life we lived in the 1970’s: Cape Cod, Maine, Boston, and Connecticut. However, I was too sick, to travel and we had to cancel the trip. We were not sure what was next for us.
I did not accept this decision with grace and good humor. I was angry and disappointed.
When my doctor recommended a brand new treatment protocol to me in mid September, all I remember was that I would be tied to the cancer center for weekly infusions for the next 10 weeks. The newest treatment consists of weekly Darzalex (daratumumab) infusions, twice weekly Velcade (bortezomib) injections, and oral dexamethasone (Decadron). We were hopeful.
My journey through this new protocol means twice weekly visits to the cancer center: one long visit on Mondays for the Darzalex infusion plus the first Velcade injection, and another short visit on Thursdays for the second Velcade injection.
Every few days in between the visits to the cancer center, my husband chauffeured me to parts of the back country. We became leaf tourists of Colorado fall colors. The dappled black and white of the aspen bark crowded together with bunches of its gold coin-like leaves. Small breezes created a shimmering of the aspens. We walked in the woods – sometimes just for a few minutes because of my weakness and shortness of breath.
We explored the top of mountain passes by car. We joined lines of car from the cities looking for the best view. In the high country, you can see far to the mountain sides. The golden patches of aspen create a temporary, dramatic contrast within the sea of dark green spruce trees.
With each stop with a colorful view, I opened my senses and practiced the abdominal breathing learned from years of fighting this cancer. Breathing slowly and deeply. Breathing in the beauty, breathing out fear and resentment. Right then and there, I received my first unexpected gift: this simple exercise was comforting. I opened my eyes and was able to push away my fears.
Another day, we journeyed to lower hillsides and walked to the top of a small ridge. Scrub oak with fire red leaves lined the path to the small ridge. Last year a stranger had placed two chairs under a juniper tree. Those chairs were another unexpected gift for me. As I sat, I noticed that even the ground cover of shrubs and grasses had turned orange, scarlet, and a russet brown. From my chair, the hillsides appeared to be a crazy quilt of rich earth colors.
I breathed slowly and deeply. I breathed in the gift of autumn and breathed out fear and worry of the future.
In my own backyard, I have poplars, maples, and elms. The trees are dense with leaves and their closeness creates a sense of being in a low tree house.
Whenever I sit outside, I lift my face up to the sun and feel the comfort of the warmth. I breathe in the gift of a sunny, blue sky day and breathe out disappointment and sadness.
The gift of the autumn colors kept both my husband and me going through the first weeks of uncertainty associated with the new treatment.
As the weeks passed, I noticed my bruises were fading. I was still weak, but definitely less short of breath. I felt better even with the expected side effects of the drugs.
The best unexpected gift came in mid October in form of a phone call at supper time. My familiar oncologist nurse could not wait to tell me the news.
After only four rounds of Darzalex, Velcade, and dexamethasone, my IgA dropped to 4 times the normal level, down significantly from the 11 times normal it had been around Labor Day. My M-spike was now at 1.5 g/dL (it was at 5 g/dL around Labor Day).
I was stunned. The results were quicker than anyone had predicted. We had been told that six Darzalex infusions would be required before results could be seen.
The news kept getting better.
After five rounds, I had normal hemoglobin levels for the first time since May. My white blood cell count was still low, partly due to the Velcade. The platelets were also still low, yet they had been increasing each week. I have not needed a blood transfusion or platelets for almost three weeks.
The cancer team is thrilled. I am their first patient on this protocol. This is the best unexpected gift: significant positive results in a short time.
How do I feel? I am cautiously hopeful because this is my 7th line of treatment, and I have been here before. Right now, though, I focus on the positive and hope.
The unexpected gifts of a brilliant autumn carried me through the dark days.
I am in a new place now; out of the dark place, back into the sunshine. I am out of crisis.
Maureen Nuckols 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 .
Oh Maureen, that is the best news. I'm so excited for you and doing a happy dance. And I'm going to go outside and yell YEAH! It's working! When the Velcade dropped my kappa free light chain level from 1200 to 40 after 2 shots, I was amazed too. So here's to you and the best ever. Fall here in northern California is more yellows, golds, some green as our seasonal grass starts coming up. Very pretty.
Maureen, thank you for sharing a beautiful description of fall in your Colorado, for reminding us to take cleansing breaths through the stress, and most of all, for letting us know of your good news. Happy, healthy fall!
Maureen, thanks for sharing! I read you from Spain, I mostly can see fall in Colorado as clear as I see fall here in Madrid! Thanks for the good news about Darzalex you give to all of us. All the best for you! Regards and love from Spain.
Maureen - Beautiful column. I love reading your descriptive prose. We don't get a fall here in central Florida. So glad your new drug protocol is working. Good luck, and keep taking those deep, cleansing breaths.
So happy your new treatment is working for you. I do appreciate and enjoy your articles. Happy holiday, enjoy the beauty around you, and keep up the good fight.
Maureen - Such a beautiful column. Thank you for sharing
So glad to hear your good news! I hope and pray it keeps coming. Take care.
This is awesome news, Maureen. I am glad that the difficulties of the infusion reactions were worth it in terms of the results! The Colorado autumn sounds very beautiful too, and thanks for the lovely column. I hope you are feeling well too.
Great column again, Maureen! My wife and I lived in Colorado for 13 years and I enjoyed your reminders. I just surpassed about 75,000 mg of Darzalex a couple of weeks ago, and I hope and pray it continues to help you as it has me.
Hey Maureen,
I love the description of your breathing – in and out, in with life, out with fear. Not easy to do, but you are gaining a new skill set that is going to serve you well. Thanks for sharing this lovely article.
So wonderful to hear good news from you this month. Hope things continue to improve for you! Best wishes.
Maureen,
This is fantastic! It is a tribute to your strength, resilience, and courage! Let the good times roll! Fall is my favorite season, too. The colors, the smells, the air ... all good.
Continued success with your treatment. You are one of our myeloma heroes!
Maureen,
Wonderful writing and even better news. Here in Maryland we have had so much unusual warm weather that our poor trees and shrubs are still trying to figure out whether they are supposed to be green or russet and red and orange. I have visited Colorado a fair amount, but your description of fall is truly beautiful and paints a picture that we all can see.
Congratulations on your success with Darzalex. Today I had my 8th weekly treatment and it is going very well. Around the 5th infusion my lambda lights chains dropped 95%! We took the numbers again today so I can't wait to hear the news. I now will skip a week and begin the next 8 infusions every other week. I also get dexamethasone as part of my prep as well as Benadryl (always good for a nap) and Prilosec. Then the actual Darzalex infusion begins. I have no reaction at all to the infusion or afterwards. That alone is a miracle after my experience with Revlimid.
Best wishes to you on feeling so much better and getting such wonderful results.
Glad you are responding so well. Enjoy the beautiful colors of fall.
Wonderful news. This one made me smile to read.
Hello all my readers, I am slow in responding because Monday is my all-day infusion and Tuesday is yuck day. The impact of all my cheerleaders is such powerful medicine for me. Bless all of you.
Christina: Thanks for the happy dance and I am so glad that Velcade is working so well after only 2 injections
Sean: Thanks for noticing the writing, I'm really working on that.
Manuela: Cheers from Spain, you touch my heart.
Pam: Really working on descriptive prose, so I appreciate you noticing.
Kim: Thanks for the positive comment on my writing, that is important to me.
Susan: Your encouraging words mean a lot to me.
Nancy: I keep you in my prayers with your own new fight.
EC: Great news about the Darzalex.
Nancy Rae: I need your reminder. Daily to breath in and breathe out. Sounds like you use this skill too.
Lynnae: Cheers from me to you also. Thank you.
Ellen Goldstein: I do not view myself as a hero, but another myeloma warrior. Sounds like you might be one too.
Barbara: I'm encouraged by your response to Darzalex. You are 2 weeks ahead of me. I'm also on Velcade. Your results give me hope.
Lois: Thanks for joining me in my celebration of good news. It continues.
April: I read your articles faithfully. So I'm happy we could share a smile across the miles (hokey, yes).
Great news for you. I love to hear it. I am also on Darzalex. My M-spike as of today is 0.22 g/dl. I would love to see 0. Best of luck. Let's hope 2017 brings us a cure for myeloma and all cancers.
Dear Maureen - I am so happy that you are getting such excellent results. That is good news for you and for us all, too. Shows the combination works! Enjoy a beautiful day where you are. It's about 80 degrees F (27 C) here in central North Carolina – a blessing in early November, for sure.