The definition of rare is:
Pronounced: /rer/ adjective (of an event, situation, or condition) not occurring very often, “a rare genetic disorder”
Similar: infrequent, few and far between, scarce, sparse, scattered, occasional, limited, odd, sporadic, intermittent, unusual, uncommon, out of the ordinary, atypical
Similar but particularly positive and wanted: remarkable, recherché, special, precious, superlative, desired
Imagine that you are sitting in a new cold oncologist office waiting for your diagnosis. Good news and bad news are about to be divulged. My hands are sweating, my eyes starting to tear up. My husband is holding my sweaty hands. My oncologist enters and tells me flat out, “you have Multiple Myeloma”. By the way, he spoke; the good news was that we caught it early. The bad news is that it is a rare type of incurable cancer, but there are new clinical trials coming forthright. It will be very manageable. Sure, until it isn’t!
When I told my daughter that I had a rare type of cancer, knowing her mother extremely well, she said, “of course you do!” Leave it to her mother to find an unusual cancer. Any cancer diagnosis is tough, but rare cancers can be challenging for patients for a number of reasons.
The words that stuck with me were “rare”, and “incurable”. I understand what incurable is, so I thought I needed to do as much research as possible on my odds and survival rate.
I tend to like rare things. I love rare gems, rare handbags, rare food and wine, and a rare ribeye. Speaking of rare things, can you name the top 10 rarest things on earth? I can, hah! Thanks, Google!
- The Underground City of Derinkuyu
- The Gate of the Sun in Bolivia
- Reflective Salt Flats in Bolivia
- Volgograd Discs in Russia
- The Underwater Forest in Kazakhstan
- The Longyou Grottoes in China
- Shores of Vaadho in the Maldives
- The Glowing Forest in Japan
- Albino Alligators in Florida
- Underwater Cairin In the Sea of Galilee
These things and places are all on the positive and unique scale of rare. Basically, the good type of rare. Something desired. I can honestly say I have not been to any of these. Why is this you ask?
Apparently, Make a Wish Foundation actually has an age limit for giving wishes! Can you imagine that? Ages two and a half through eighteen years are eligible. You do not even have to have an incurable disease! I think this is a conspiracy. Once again, we older folks don’t have a chance. I think that is age discriminatory. It is not as if they do not know how to handle people in wheelchairs! I wonder what the ACLU would say about this. So much for my truffle hunting in Italy with ten of my closest friends.
Early detection is the crown jewel of the rare cancers. It can be perplexing for oncologists and hematologists. Patients often are misdiagnosed, too many unneeded specialist appointments, until finally, the right conclusion occurs. It can take years to diagnose a rare cancer. Then it is a very late stage and harder to treat.
There is no universally adopted definition for rare cancers. The National Cancer Institute’s definition is fewer than 15 cases per 100,000 patients per year. Recently, the European Union, “RARECARE” stated that rare cancer is defined with fewer than 6 patients per 100,000 people. “Most common cancers, like breast & prostate cancers have approximately 123 cases per 100,000 per year.” Not to take away from any type of cancers that are more common. It is all horrible and challenging.
Data from 2018 suggest that Multiple Myeloma is .09% of all cancers. So there you have it, I got the rare one! Psychologically speaking, I get it is impressive. When God was handing out cancers a few years back, he might have said, “Yep, she is a leader, works hard, and perhaps slightly special in an odd kind of way. Let us give her the rare stuff. She can handle it.” Honestly, I would have preferred a python Birkin bag, a vacation to see the Northern Lights, or a red diamond to prove I need to be a badass.
“Worldwide, rare cancers make up 22% of cancers.” Unfortunately, rare cancers have less financial support for clinical trials. Although in the past few years, MM has had a significant amount of research sponsored by the International Myeloma Foundation and the Multiple Myeloma Foundation. Therefore, I am incredibly lucky to have all of these new treatment regimens being approved. This disease is so different from other cancers. The side effects of the disease itself should be categorized as rare and just awful. This takes me back to the blog I did about IST. Most of us now have numerous specialists we work with since the disease encompasses everything from cataracts, peripheral neuropathy, to broken bones and vertebrae.
I wish we could just have surgery. Cut it out, then chemo or radiation. Then remission. MM may allow you remission, but it always comes back, sometimes mutating. The regimen of meds you are on work until they don’t. Then Plan B, C, D, and E are other drugs recently approved. Then they work until they don’t. The other route or more common route is to have a stem cell transplant. Control-alt-delete your body. They refer to it as a rebirth since you have to be re-inoculated with all of the childhood vaccines you had previously. Your hospital stay is approximately 17to 30 days in isolation. Your immune system is totally wiped out. Recovery takes months to a year. I did save my stem cells just in case I have to do this. I am praying that the newest drugs will prohibit this. Even though my friends have had SCT, multiple myeloma tends to be refractory. Meaning it will return inevitably.
Lastly, I really think we should get to pick our cancer. This would be so much better on one hand. Most people would pick the least invasive and the one with a cure. The downside would be no new research or clinical trials would take place on the rare ones. Maybe we could do a random choice. Perhaps there could be a spinning wheel. You get three tries spinning. Then you are stuck with the one you got. Alternatively, maybe you could get to pick using a slot machine. You get to pull the lever as many times as it takes to get three matching cancers. On the other hand, perhaps, a new version of “Let’s Make a Deal.” Pick between door number one, two, or three. You would have no one to blame but yourself.
Oh well, I guess I have to just be grateful that my treatments are working. Accept the rare cancer for what it is. I still would rather have that Birkin bag!
As usual, I look forward to hearing from you. Until then, find something funny to talk about and share.
Best,
Cathy