Mixed Messages

What I’ve found true when we speak of blood cancer is that the amount of information we receive may be different for many, as is the way some of us were diagnosed. In the beginning, I heard a lot that multiple myeloma was incurable. Yet, later, I was told that I could reach remission. This seems positive, but the earlier messaging of it all still gets stuck, preventing me from clearly understanding it all.

Incurable-huh?

When we think and hear "incurable," the word sticks and is permanent and forever, despite going through the new suggested treatment. I’ll still and always be deemed a multiple myeloma survivor, huh? Interesting! It can be a hard pill to swallow, hearing the word "incurable," but the flip side is not being alive at all.

There can be a strong strain in processing the terms. Life, as we know it, will forever change, and in some areas, that actually can be a good thing. The saying that life goes on is accurate, and what you make of it positively helps you get through this. I thought the word "incurable" would hinder the rest of my life, but actually, it’s done the opposite.

One doctor said...

Things get a little wonky, depending on what doctor you went to when diagnosed with blood cancer. A primary care physician may suggest one thought, but an actual specialist who works specifically with that condition may say something else, and their thoughts hold more weight.

You’ll find other words that gets thrown around are "remission" and "cured." We know the word cure is a touchy one, as we never want to get our hopes up. However, when doctors start down that lane, it’s hard to decipher if you should follow that thought or not. It could be a mind-over-matter hopeful, especially when treatment seems to be working, with negative MRD (minimal residual disease). This is physically and visually appealing and may give some doctors the credence to pop out that “cure” word.

I would say tread lightly despite their optimism...just in case.

Various treatments

Is immunotherapy the right course for you, or are drug therapies, transplants, and now new forms like Car T? There is a lot to consider and the messaging can be a bit confusing. This is why having a clear conversation with the correct specialist is necessary.

The one good thing or encouragement is the choices: the choices have increased ,especially in the outlook for multiple myeloma. The idea of extended life and hope means things are moving positively!

Overload - Overload

The number of things to think about is many - whether treatment plan, pain, fatigue, questions, and confusion from dissecting what the doctor has said. When overloaded messaging is at an all-time high, what should you do?

That overload may be a bit much to take, but in time a lot of these overload messaging will need to be learned and understood. Let’s think about how to proceed in doing so:

• Breathe and calm down It’s not a race, so take your time in processing it all.
• Useful tools Maybe tape recording the details provided if it becomes too much, or bring someone along at appointments to help take notes of what your medical team has mentioned.
• Building a network If it’s all moving too fast, then take a moment and build a relationship with your nurses who usually do a good job of explaining and re-emphasizing what your doctor has said.
• Journal it Writing can be cathartic and you’ll also find that your questions posed in your journaling may be ones to go over with your medical team.

Be open to receiving explanations and gathering information in spurts...Don't allow the massive information blur what you'll need to move forward.

The time to fight is now, with integrity, grace, hope, and a smile…when you feel like it