Letters From Cancerland: Party On
Earlier this month, I held my third cancer party.
I threw my first cancer party when I was diagnosed with multiple myeloma 11 years ago. It was a big party. A really big party. It went on for hours, everyone brought food and drinks, and people were packed against the walls of my apartment.
What a great night.
Almost three years ago, when I relapsed and started Velcade (bortezomib), I threw another cancer party. I had lost physical ground over the years, I wasn’t happy about the Velcade, and it was time to party again.
Once again, everyone showed up and everyone brought food and drinks. Although the party was held in mid-January, the weather was fairly mild that night. That was a good thing because there were so many guests packed into our house that the indoor temperature rose and people spilled out on the deck to get some relief.
That was a good night too.
After I relapsed again and I began Kyprolis (carfilzomib) this summer, I looked at my husband Warren and said “you know what this means, don’t you?”
He nodded. “Another party?”
Yep, another party.
I called this party the “Further Down the Road Cancer Party.” At 11 years out, I have no illusions about where I am on the myeloma spectrum. And my invitation reflected that:
Many of you were there for the first party in December 2004, when I was initially diagnosed with multiple myeloma. And from time to time, we’ve partied to recognize what a long, strange trip this has been.
Eleven years later, it’s time to party again! Why? Because I’m further down the cancer road and what better excuse than to raise a toast to good friends and good community? (And for those of you wondering how I can send this invite out when my older brother is in the end stages of cancer, trust me, Dale gets that life goes on and he will be there in person or spirit or both.)
This was a great party too. Once again, we packed the house. Once again, the food filled three tables, all the counters, and the stovetop as well. Once again, people spilled outside when the inside temperature rose.
The rooms were full of people I care about, many of whom have been with me from the start of this adventure. My friend Larry and his wife drove down from northeastern Ohio to join us. Larry also has myeloma (13 years) and has been my constant companion in the myeloma world. They arrived early, and we four had time to compare notes about treatments, where we are this many years out, and how our spouses are holding up (magnificently).
There were some quiet revelations. My friend Doug, who has dealt with stomach cancer for several years, took me aside and told me that the cancer was back, in multiple tumors, and the prognosis is very dire. We hugged hard; I sought out his wife and hugged her hard too. And my poetry club friend, Mark, just recently received a diagnosis of chronic lymphocytic leukemia, and we have been talking about the reality of that diagnosis. Other friends asked me quietly about my status and prognosis.
The most noticeable absence was my brother Dale, who died last month from liver cancer. Dale was always the last guest to leave, talking long into the night with anyone nearby. He knew no strangers. My kitchen garbage can has a permanent crimp in the lid from his sitting on it at the first party 11 years ago, and I kept looking over at it, expecting to see him there again.
The reality of a cancer party is cancer.
But that’s not the only reality. The reality is that life goes on, and this party demonstrated that in spades. There was a lot of laughter and talk. There were hugs and stories. There were tall tales and taller truths. There were a lot of us just celebrating being alive and being together for now.
I don’t throw these parties to celebrate the illness. I throw them to thumb my nose at it. Myeloma is killing me, but while I am able, it will kill me on my terms. Those terms include good friends and good food and good talk. Those terms include loud laughter and funny stories and quiet comments and long hugs.
And those terms include my cancer parties.
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 .
Party on April, and may you have many more. I am three years post stem cell transplant. Its encouraging to hear from those who are 12 and 13 years on. Take care, Diana.
April - Interesting take on the multiple myeloma. I too was diagnosed in 2004 and had 10 months of treatment with Thalomid and dex, and no multiple myeloma meds since that time. M-spike and light chains still there, but within limits. I go in every 6 months for blood tests. I am wondering if it would be worth the effort to have any person who has survived over 10 years get together verbally and discuss their treatment and see if it would be any benefit to others and if there is any common areas that might explain why we have survived this long when others have perished? Anyone know what the longest length of survival is with multiple myeloma? N.G.
Aloha April,
Excellent article and a great idea. I am always looking for both a good reason to thumb my nose at myeloma and a good reason to have a party.
Maybe this is why you have lasted a good long time? I need to see the double blind study on how adding a party to a new treatment affects time to progression and overall survival. I am betting on your style of treatment.
This new treatment and new party are going to keep you going for another three years!
If we are wrong, at least we had a good time along the way.
Much aloha!
Tom
So sorry about your brother. I am sure he was at your party - and sitting on the garbage can! Which is probably why you kept looking at it. Glad you had the party anyway. It is always good to get together with good friends. Take care and party on!
What a touching article. You have a beautiful attitude and spirit. Thanks for the inspiration!
Great article. I love your attitude. One thing myeloma doesn't like is people with attitude. A party is an excellent way to show contempt for this diabolical malady.
I'm in remission so I just celebrate my ASCT anniversaries with my wife and family. Maybe I should upgrade to a big party next time. After all, "life is for living ".
Thanks for a great idea.
Mervyn
You go, girl!!
I agree that your spirit has helped you to keep running down the road. I was diagnosed in 2010, just a beginner compared to you. And I wanted you to check out the recent news that daratumumab, the first myeloma antibody, has been approved for patients with at least 3 prior treatments. I bet your doctor brings this up to you the next time you visit him.
Make the days count, don't just count the days. But you are already doing that.
Marcia
Too funny! I, too, have thrown cancer parties! One for Erik before he had his stem cell transplant, and one for a grilfriend who was just starting treatment for breast cancer. It sounds so morbid, but I look at it as a fun time before the reality and stress of treatment kicks in. Both were a good time.
Lyn
It's wonderful that you feel like partying. I don't. Myeloma is nothing to celebrate in my book. Sorry I cannot share in your enthusiasm for celebrations.
You have an amazing attitude. I'm sure that stories of long-term remissions are more than inspiring to myeloma patients. My husband was diagnosed in 2009 and is still in remission.
Your comment about spouses doing magnificently, though, has me confused. As a spouse, it's so difficult to watch your loved one going through all the appointments and follow ups, testing, residual pain, etc. Between the worry, fear, and sadness, I don't know where there is space to live a magnificent life. I understand about living in the moment, but that's easier said than done. I would love to hear from the spouses point of view.
Good friends, good food, and good talk are the best medicine! Thank you for continuing to inspire the rest of us!
Thank you for a wonderful article! You are modeling such a positive way to live. As my doctor told me when I was diagnosed: "It WILL come back." The challenge is to not let that thought overwhelm (and depress!) you.
Thanks for the excellent article, April.
Please accept my condolences for your brother's death. I know you must miss him a lot.
And also, I'm sending positive thoughts for your third line of multiple myeloma treatment. I hope this treatment puts you into a long remission.
I admire your attitude about life with cancer. When you have cancer, you can live life afraid. Or you can live life, period. Everyday I choose to do the latter. And it sure sounds like you do too.
Best wishes,
Mike
Dear April
Such a wonderful idea to throw those cancer parties to celebrate your victory, if limited, over cancer. I would love to do the same but my husband, the one with myeloma, has been reticent to share his diagnosis with many of our friends and acquaintenances. I respect and abide by his decision. But a party would be fun.
Our condolences on the loss of your brother.
A belated response to all of the wonderful comments. It has been a busy time in Cancerland. My current chemo regimen has been demanding its due share of time and attention, and I am determined to respond before I turn to the pies.
For all of you who cheered on the idea of a party, I wish you could have been there. As Ellen Harris noted, parties are not for everyone. But as others of you (who have also partied) said, they work for some of us. Parties have certainly worked for me over the last eleven years. I feel best when surrounded by my strongest supporters, and my cancer parties are a way to celebrate that life is still going on and we are still all together. Thank you for those who mentioned my brother Dale. Several of us partygoers were quietly aware of his absence and knew he wished he could have lasted long enough to attend.
Nipon Ginko raised the question of myeloma and longevity. I’m at 11 years, 4th line of treatment; I have a friend at 13 years, just failing his 3rd line of treatment. The “longest” patient survival that I am aware of was Michael Katz, who recently died, but had lived with myeloma for 25 years. Why do we survive so long? Most oncologists will shrug and say “don’t know,” and mean it. As Marcia K noted, daratumumab has just been approved, and that may be a game changer for more myeloma patients.
Wife 101, you are not alone in your comment about being confused by my statement about our spouses doing magnificently. I am sure both Joan and Warren (the aforementioned spouses) would wholeheartedly agree with the range of emotions and reactions you write about. I tipped my hat to them as holding up magnificently because they go on day after day despite those fears and concerns, usually without complaining.
And I love Tom Shell’s suggestion of a double blind study of the effect of partying on myeloma progress. Where do I sign up?
April,
This was a very good article. If my husband was up to it, I think we could throw a cancer party too.
In response to wife101, I understand what April means about doing "magnificently". The worry, the fear, and the sadness never go away. My husband was diagnosed October 2013. His transplant was October 2014. We are a year from transplant and everyday with him here, feeling well or not, is magnificent to me. I try not to let my worry or fear show, he is already struggling with those feelings. I try and I think I succeed at being positive for him, I try not to let him dwell on the darkness of his diagnosis.
There was a time when he was so ill and on the edge of death, I did not do so magnificently. I was scared, I was worn down and spread too thin. I never left his side and it took its toll on me physically, mentally, and emotionally. But together we faced those fiery darts and we made it out of the darkness.
This journey through illness has tested us in so many ways, but we just have to face each day with the knowledge that tomorrow might never come, but we have each other for today. And today is a magnificent day!