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Myeloma, Party Of Two: Developing A Myeloma Preparedness Plan

By: Tabitha Tow Burns; Published: October 23, 2014 @ 5:42 pm | Comments Disabled

There are certain things you accept when you live in Houston: Dallas Cowboys fans are barely tolerated in this city, everyone claims their barbecue is the best, and you are living in hurricane country.

While Houston Texan fans try to make peace with the first item and hold their tongue when friends brag about the second, most everyone pays attention to the third item.

The official hurricane season lasts from June 1 through November 30, and throughout this time, public service announcements try to educate people about the importance of having an emergency preparedness plan.

I’m relatively new here, so with visions of duct tape shortages in my head, I set myself to listing and acquir­ing the items we would need if we were faced with this emergency. Hope­fully, we won’t have to deal with a hurricane, but if we do, I now feel reasonably prepared for it.

This got me thinking about myeloma preparedness. What’s our action plan there? My husband was diag­nosed with smoldering (asymptomatic) myeloma in 2012.

Unfortunately, I don’t think that bottled water, canned goods, and duct tape will help us much when it comes to myeloma.

Since his diagnosis, however, we have started taking other steps to be more prepared, not only for our cur­rent situation but also for the time when he may progress to active (symptomatic) myeloma.

The most important decision we made was to move to Houston where we could be closer to a cancer treatment center that that includes a group of hematologists / oncologists who specialize in the treatment of multiple myeloma and its precursor diseases.

As a result, my husband sees his myeloma specialist every two months for blood and urine labs, and they closely monitor signs of disease progression.

We have also eliminated certain items from our life that may negatively affect our health: aspartame, diet sodas, and Round Up weed killer. Admittedly, giving up diet sodas was a bit of a hardship for him, but it paled in comparison to going to organic lawn care, since his dad’s lawn is perpetually verdant and Texas weeds are as resilient as cactus.

We work hard to save money in case he needs treatment in another city and we need to take a hiatus from work, but we have no idea how much we may need.

We also worry a bit about the cost of treatment, and whether it will be covered by our insurance plan. Quite frankly, sometimes it seems like we’re storing up nuts for the winter, but we don’t know how long it will last or if our supply will be enough.

A good friend of ours, for example, was recently treated for lymphoma with a novel therapy. She responded very well to it, and now the plan is for her to take it for the rest of her life, but her medication costs tens of thousands of dollars per month. Thankfully, she qualified for a stipend that assists with the cost of her medication, but what happens if the stipend runs out? How do you prepare for those kinds of costs?

In addition, we try to focus on the things that we can control. We constantly read about myeloma research so that we can be good partners in his healthcare, and we take his specialist’s advice seriously.

For example, at his last appointment, we talked about the difficulty specialists can have determining the correct dosage for chemotherapy and other myeloma drugs when a patient is overweight. This was news to us. So we stored that nut up with the other ones, in order for him to be as well-positioned as possible to have a successful response.

We are also making much better food choices, and we exercise more often. We understand how imperative it is that he be at his optimal weight so that his oncology team won’t have any problems determining the dosage for his treatment. You sure don’t want to be under-dosed with myeloma drugs when the time comes that you need them!

Despite these preparations, we figure that there are many other details that we haven’t even thought of yet. This is what keeps me up at night. What type of things should we be doing to put us in the best position possible for treatment? What do I need to know, do, or change to help my husband the most?

It’s ironic that I am a really organized person. I’m a great planner, a person who considers all the con­tin­gen­cies, and never misses a deadline. Yet here we are, fighting a disease that is really tough to plan for.

My guess is that many patients, caretakers and medical staff have developed some “best practices” that I could learn from, and so I try to listen and keep optimistic, hoping that we will be given what we need as we need it.

Lastly, I continue to look to the myeloma community for strength and determination. Articles on novel thera­pies and patients with complete responses inspire my husband and me very much.

Hopefully, we will have a great myeloma preparedness plan before the storm comes.

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diag­nosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her pre­vi­ous­ly published columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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