Myeloma, Party Of Two: Developing A Myeloma Preparedness Plan
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Tabitha
It is great to see you are planning and preparing. However, don't let that lead to worrying too much about what may come. Matthew 6:34 tells us that each day has its own anxiety, so don't worry about tomorrow. This has worked very well for me and my wife after I was diagnosed with MM about 4 years ago.
A friend asked the question, "How do you eat an elephant? One bite at a time." Similar advice but different wording. Planning diet, exercise, med checkups, savings are all good. Just carry out the plans day by day and you will have the best of success, and you will enjoy each day for its own goodness.
Tabitha,
I totally relate to what you're going through. I am also a caregiver. My wife was diagnosed in 2010 with MGUS. She is monitored every three months because her father died from myeloma. I have every one of her blood tests in a folder since 2010. Just like you I go to every appointment and try to keep her in a healthy state. We've cut glutens out of her diet and she takes curcumin.
This watch and wait is so frustrating because you feel helpless. I just want you to know you're not alone if that means anything. It feels like our lives are being lived in 3 month intervals. I also know what it feels like not being able to sleep with your mind racing.
This site is great because there are so many caring and compassionate people giving great advice. I can't tell you how many times I was comforted by the advice from the Beacon Staff, the doctors, Multibilly, Nancy, the late Dr Goodman and Steve Kramer, Pat Killingsworth and everyone else who contributes.
You sound like a great caregiver and wife, so I think your husband has a true warrior at his side. My wish for you is that your husband never progresses and you both live a long life together.
Tabitha, you are an inspiration in your kindness and willingness to share your's and Daniel's story. Best wishes and hope you never need to put your preparedness into action, but, if so, it won't be too chaotic at such a time!
I wondered last week about preparedness when there was a four day power outage in part of our downtown which put thousands of people into hotels for shelter, since they had no light or heat. People's freezers quit and they lost their frozen food. All due to some electrical housing that failed somehow. Also preparedness yesterday is now an issue to be discussed nationally when a terrorist was able to get into our House of Parliament in Ottawa, after killing a soldier on honour guard at the Memorial outside.
So, as in the Guiding motto .. 'Be Prepared'! Thanks for your column and your thoughtfulness.
Those with smoldering myeloma or MGUS can try to be prepared for full fledged myeloma. Becoming educated and staying on top of symptoms the most important. Those hit over the head with a diagnoses of 80% myeloma cells and many lesions are in a state of shock even after 2 years. In the last 2 years since our daughter was diagnosed, I have learned to be prepared in other ways. I always have a bag packed to be with our daughter when she is admitted to the hospital or having a bad time with chemo. Always having things in order so you can be prepared for whatever is going on. I don't think anyone can be prepared emotionally for the heartbreak of a diagnosis for someone you love. We all just keep plugging along .
Tabitha - Great column, as usual, with great advice. Because this disease strikes most individuals who are in their 50s and older who may be close to retirement or are considering retirement, one thing I would add to your list is to make sure you fully understand your retirement plan health insurance policy. My wife and I were shocked at some of things we discovered.
I hope the calm before the storm your husband is enjoying now lasts forever - make sure you enjoy and make the most of this time. As I look back, the 18 months of watch and wait that my doctor prescribed for me before starting treatment was the best of times for me and my family, and time we will never get back.
After a year of Velcade / dex, I gained 50 pounds. I was heavy before, but found out dex is prescribed if the patient is losing weight. Good thing is, one study suggests that heavy folks do better during ASCT. I am 6 months since mine and did good during it. I lost 20 pounds during the ASCT, and 10 more since. Don't worry, be happy, Que sara sara, what will be will be. Be prepared, but don't worry, you can't change anything with fear.
I know what you're saying. I gained 80 pounds. Just can't lose it.