Multiple Myeloma

My oncologist said this would happen. More specifically, he predicted this would happen following my autologous stem cell transplant (ASCT or just SCT).

At my 100-day post-stem cell transplant appointment, conducted as a virtual appointment thanks to coronavirus (we weren’t calling it Covid yet), my oncologist said, “Let me tell you what is going to happen to you.”

It seems that most people go through a series of fairly specific steps as they recover from the initial devastation of a stem cell transplant. It was curious to note that many of those steps matched the steps of puberty, oily skin, acne, increased libido, but much faster. At the end, he predicted my appetite would come back stronger than before the transplant, and that it would be important to manage it to avoid excessive weight gain.

I heard, but tuned out that last part.

Gaining Weight After SCT

At the time, I was almost 40 pounds lighter than before the stem cell transplant, down in the 170 pound range.

Playing ‘will I throw up or won’t I throw up’ with every single thing you eat will do that to you.

That worked out to me being 30 pounds underweight. (Actually, if I had more muscle, the 40 pound difference could all be healthy, but we’ll get back to that if it ever matters.)

Now, 14 months after my SCT, my weight is back up to about 214 pounds.

Healthy Weight Following SCT

As a 6′ 2″ adult male (down from 6′ 3″ thanks to kyphoplasty), 214 pounds is not out of the range of healthy weight. Unfortunately, I’m still stick-like, skinny in my arms and legs. All of the weight is in what is becoming a cartoon-like belly.

My former “fat pants” only fit me if I button them under my belly instead of at my waist. And by fit, I mean, I can button them and the crushing compression of the waistband will eventually stretch out enough that I can wear them. I’m sure my waist is something like 42″ instead of 36″ but I refuse to buy anything bigger.

The solution is a combination of weight loss and strength building in the form of exercise.

Post-SCT Exercise Program

If you’ve just come off of SCT, please, please, please, check with your doctors and physical therapists before you dig into anything other than minor exercise. There is a point where you are too fragile to do real exercise. Make sure you are past that before you go out and try stuff.

For me, getting in some real exercise is long overdue. I’m still weak, and I shouldn’t be. I’m still easily fatigued, and I shouldn’t be. I’m still anemic even though I haven’t had a drop of chemo in over six months. I need to start exercising, and not just counting a bit of incidental walking as exercise.

So, here we go. I’ll be doing two things. One recommended by doctors and health professionals, and one not.

The first is ramping up an exercise program based upon walking at least 10,000 steps per day. This will be a combination of walking outside thanks to improving weather, and some nice trails around my house, and using the treadmill that we bought when the pandemic shut everything down. As I build up this stamina, I’ll move forward to running.

Do not run until your docs say it is OK. Myeloma can screw up your bone density and running is already tough on your bones.

I will also incorporate some weight lifting in the form of basic exercises using our 5 lb, 10 lb, 20 lb, and 30 lb dumbells.

Those two things together should work to build my strength and endurance.

Post-SCT Diet

The not-recommended thing I will be doing is a crash diet. Dietitians and doctors hate crash diets, but I hate waiting more. If I can’t see this belly shrinking, then I’m just going to start hating everything and give up.

So, crash diet it is.

My current plan is protein shakes for breakfast and lunch and some sort of plain protein (salmon, chicken breast, and so on) with salad. I will ignore all advice beyond this.

The truth about dieting is that doing anything is better than what you are already doing. Salad dressing is not what makes me fat. Fruit is not what makes me fat. Steak is not what makes me fat.

Eight Oreo cookies at 9:00 pm makes me fat. Eating as much pizza as I possibly can makes me fat. Eating piles of potatoes swimming in butter and sour cream makes me fat. Eating three bowls of Frosted Flakes makes me fat. Chicken wings, nachos, beer, candy, cookies, chips, and so on, makes me fat.

Ironically, just stopping the above would probably be sufficient to make me lose weight, but unless I’m on some sort of militant regimen, my brain won’t fight for me and kick those things out.

This is true of most humans, which is why saying “Don’t eat carbs” becomes a successful diet while the equivalent, “Don’t eat junk food and so much bread” doesn’t get any traction among most people. The more squishy your diet is, the less likely you can make your angry face and say no to your cravings. This way, when I break down and have a baked potato it won’t really hurt me.

Yoga

I should probably throw in some yoga too because my flexibility is non-existent, but for now I’m only committing to the exercise and diet.

If I can get my body back into a useful state, we’ll worry about tricking it out, but for now, the belly goes. Everything else is a luxury for the future.

And, when you have cancer, the future is everything.

Cancer.

It’s as scary as a word gets. For millions of Americans it’s one of those things that happens to other people. There is maybe a friend or a family member, maybe a friend of friend with cancer, or maybe just someone you heard about that one time at your company or on Facebook.

Until 2019, I was one of them.

Not a lot of people have heard of multiple myeloma. That’s not surprising. It is considered a “rare” cancer. In 2018, approximately 125,000 people were living with myeloma in the United States. That might sound like a lot, but consider that there are 327 million people living in the U.S. and that percentage looks pretty small.

Or, if you want to compare multiple myeloma to more common cancers, consider that 268,000 new cases of breast cancers will be diagnosed this year alone. That’s more than the total ongoing cases of myeloma. Multiple myeloma’s closest, more famous, cousin is Leukemia, with 200,00 new cases diagnosed in the United States each year.

Getting Rare Cancer

Not only is multiple myeloma a rare cancer, it is most frequently diagnosed in people aged 65-74 years old. So, imagine how “lucky” you have to get to be diagnosed with multiple myeloma at age 45.

Yeah. I’d have rather gone to Vegas, thanks.

Why Another Website

So, what is the point of this whole thing?

Well, I’m a writer. I always have been. It’s my way of talking and actually getting to say what I mean to say. Also, I build websites. What’s one more?

Most importantly, writing can be therapeutic. I find that such writing is more therapeutic when I put it “out there.” Whether anyone ever finds it and reads it, or not is irrelevant. The fact that I publish what I think, write, and feel, is similar to actually talking to someone for me.

Finally, when I was first diagnosed with multiple myeloma I went searching for resources and had trouble coming up with what I was looking for. While there are many great resources out there with facts and figures for multiple myeloma, those resources are often very clinical. The American Cancer Society has a multiple myeloma section that is full of solid, factual information. The International Multiple Myeloma Foundation is another good resource.

And, if you see one of these in the literature holders at your oncologist’s office, or at the hospital, I highly recommend picking one up. It’s called the Multiple Myeloma guidelines for patients.

Multiple Myeloma Resource Guide – Guidelines for Patients

It’s nice to be able to thumb through a book when you’re brain is filled with a fog of worry and fear. (The same thing is available online at NCCN.org/patients.) You’ll have to click on that “more cancers” button in order to find the multiple myeloma one though. Might as well start getting used to it, this is an”other” cancer.

However, when you write advice like that for a broad audience you have to careful to not be too specific lest you write something that does not apply to everyone. One of the most frustrating things about multiple myeloma is constantly being told that everyone is different, so no one will really give you any answers.

It is true of course. Everyone is different. Not only that, there are a ton of different kinds of multiple myeloma characterized by which genes are mutated and what kind of light chains you have, and so on. And, that’s all before you account for the fact that it will affect younger people differently than older people. That some people tolerate treatment very well, while others don’t tolerate it at all. Still others respond well to some things while others don’t.

The purpose of this website then will be to provide MY experience and MY discoveries that I make about MY multiple myeloma along the way. Such specific, real world, understand of what it is like to actually have multiple myeloma is incredibly useful, even if not everything applies to your specific case. As such, I hope to provide a myeloma resource that I wish I would have found back when I was first diagnosed, and frankly, ever since.

It will take a while. I’ve been “meaning” to start writing this site for almost six months now, but one of the things that MM does is rob you of time. Between doctor appointments, fatigue, medication side effects, and mental stress getting to things like extra projects can be tough. The good news is that I’ve got ideas, and now I’ve got it started. That means it will come easier and faster now.