Myeloma, Party Of Two: The EASY Button
A couple of years ago one of the office supply stores introduced the “EASY button.” The idea was that you push the button and everything was taken care of for you. I’ve been thinking about that button a lot lately, and imagining what such a button could do for caregivers.
As with myeloma patients, every caregiver is different, and therefore their needs are special to their circumstances. But I think we can know some things in general about the journey that a caregiver goes through and what type of EASY button would be needed at each stage.
An EASY Button For Crisis Mode
As a caregiver, if your loved one was diagnosed with multiple myeloma and they began their treatment immediately, you have been in crisis mode. I’ve heard many stories where patients went from leading normal lives to being unexpectedly diagnosed with multiple myeloma. Before these caregivers could process the news in terms of their individual response to it, their loved ones were hospitalized and given radiation for their bone lesions and drugs to treat their disease.
Many caregivers in this situation go on “autopilot.” They gird up their strength and forge ahead without thinking about anything else other than what must be done for their loved one. They haven’t had time to personally process the change, or their own needs. Their focus is on helping their loved one get through that day, and ensuring that they have all the medical care they need.
This was the case for me when my mom had ovarian cancer. In the hospital, we dealt with not only her malignancy, but additional surgeries from recurring infections as well. Every day there were blown veins, wound sites that needed to be cleaned, nausea and fevers to address. I stayed with her at the hospital and did everything I could to be her advocate. I communicated her needs to the staff and tried to make her days brighter with my company or a favorite magazine. With all the traveling between my work, home, and her hospital room an hour away, I needed an EASY button to let me regroup. After a few months, my stores were tapped. I felt emotionally and physically exhausted.
Caregivers at this stage need an EASY button that gives them a chance to catch their breath and restore their energy so that they can get through another day until the crisis is over.
An EASY Button For Ready Mode
Being a caregiver for my husband Daniel looks very different than it did for my mother. When your loved one has smoldering myeloma, you’re waiting to be called into action. You live in ready mode. This can be challenging for a caregiver. I do not have traditional caregiving tasks at this stage. My caregiving role is to act “normally” in a world that no longer is normal. My task is to help us forget the multiple myeloma that is growing in his bones or the treatment that lurks in the future. And my job is to prepare.
We received some wise counsel from a nurse in our myeloma clinic when Daniel was first diagnosed. She said something like,
“You’ve been given a unique window of time. Save all the money you can. This is a very expensive disease. Live as normally as you can, try to not waste the present worrying about tomorrow. If you like to travel, do that. Do what you want to do now, while you can. I see people every day who don’t have these options.”
Knowing that she has seen the worst that multiple myeloma can bring, I took her words to heart and have lived by them as best I could.
I have learned that the best way for me to be a caregiver at this stage in our lives is to do whatever I can to alleviate the stress that comes with the uncertainty of Daniel's condition, and the impact that it may have on our future.
A lot of our focus at this stage is on our finances, since that is one thing we can control between now and the time that he starts treatment. Knowing that multiple myeloma treatment can cost in the tens of thousands of dollars each month if not covered by insurance, I work with Daniel to ensure that we purchase the best insurance plan available from our employers.
I also know that, even with insurance, co-insurance and co-payments can total into the thousands each month. So I do my best to weigh the balance between spending and saving for tomorrow. I prepare for the possibility that there may be a time when Daniel cannot work, and I save for medical bills that could easily drain in one year most people life’s savings.
As a caregiver, I also try to help us prepare mentally and emotionally for his myeloma specialist visits, where we brace for the news that it may be time for him to start treatment. Then, after the visit, I breathe a sigh of relief, and tell him that I am thankful for a good report. I try to focus on the positive numbers in the report, and avoid the indicators of his disease progression. I don a smile and try to go back to our “normal” life for another 11 weeks until the cycle starts again.
This is caregiving for me, and many other smoldering caregivers in “ready mode.” Perhaps it’s not surprising then that our EASY button would bring us peace of mind to help effectively prepare for the mental and emotional rigors of this stage in the journey.
However, after thinking about it a while, it occurred to me that we don’t really need these two different EASY buttons. There is really only one EASY button that we need, and it addresses all our needs:
At the end of the day, what we need is a cure for multiple myeloma.
As we wait for it, I’m thankful for the many people working towards a cure, and for the new treatments available. I’m grateful for the strides that have been made since my husband’s diagnosis in 2012, and that he has not started treatment yet.
And I continue to pray ... pray that someone will push the EASY button for a cure.
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 .
Thanks, Tabitha, for writing this very insightful column. I hope that the cure for myeloma is found too. I hope that you and Daniel can get some respite from worry, even though you have a lot of concerns for the future. Probably most of us also have financial concerns, due to having a chronic illness.
Dear Tabitha,
You wrote a really beautiful column. Thank you so much. My husband is my caregiver, and I know he sits on "ready" to help me all the time. I'm in remission and on maintenance and doing very well, but as we all realize, there's always the thought and knowledge of the uncertain future. I like what the nurse said about "a window of time." I know that my husband has been much helped to carry the burden of caregiving by keeping his interests and hobbies going. This helps me, too, to use the window I have to focus on the positive of life and just "do". Take care.
Thank you for your comments, Nancy and Sylvia. Nancy, you make a good point that regardless of whether you are smoldering or in the active phase of myeloma, we all have things in common, financial concerns being one of them. I'm so thankful for the time that we have to better address some of these things, and I consider us blessed to not be dealing with some of the more difficult aspects of myeloma as so many Beacon readers do.
Sylvia, congratulations on your remission! I'm a big fan of using your "window of time" to focus on the positive side of life and just "do" the things that makes life beautiful! Daniel and I definitely share that perspective with you as well.
Wishing everyone lots of good health!
Tabitha
Tabitha,
Please try not to get too hung up on the disease. I was diagnosed with smoldering myeloma in December 2011. It controlled my life for over a year – I spent a hours everyday reading and obsessing over it. I now can actually go days or weeks without thinking about it. My regular visits have been increased to every 6 months (from every 3). Keep in mind that after 5 years the risk of progressing actually decreases. And most importantly, please remember that your husband DOES NOT have the disease. He has a precursor to the disease.
I'm not trying to tell you how to feel and there were some other experiences I had that contributed to my mental well being. But there is hope for your husband and he may not progress and he's not sick.
I truly feel that attitude and outlook play a huge part in his outcome. Please keep my words in mind as they are from someone in the same position as him. Best wishes and best of luck to you both.
Art, thank you for your comment. It sounds like your disease is stable enough that your visits are only every six months. Congratulations!
I can understand how someone who isn't familiar with the complexities of my husband's case might speculate that there's less cause for concern or that I might be worrying too much. Out of respect for my husband's privacy, I do not share much about his condition and his rate of progression. What I can tell you is that his myeloma specialist expects that treatment is not a distant possibility for him, but rather it is a certainty based upon his labs.
On a personal note, we maintain a positive outlook and focus on living well with his myeloma. I try to convey this in all my columns, which can be a challenge since I'm tasked with writing about the caretaker's experience across a broad range of issues, which aren't always as upbeat as I strive to be personally. This month's topic on preparation and coping may have had a more somber tone for you, but I assure you that we are appreciative for my husband's current health and we look with hope to a good tomorrow as well. Thank you for your readership, and I wish you continued good health!
Dear Tabitha,
Thank you for this column and I pass all my very best wishes to you and to your husband. Your words and your thoughts for the future were very moving and, although I don't have the same sort of experiences, they helped me to understand how life might be when you are 'waiting' and trying to be 'ready' for treatment to begin for the person you love the most. I don't think that a day goes by when I don't think of how tough it has been for my husband to deal with all that has happened in the last 14 months. It seems that, so often, the patient is the person who everyone supports and yet it must be just as tough, if not more tough, to watch the person you love suffer and to also try to keep every other aspect of life in some sort of order.
When I was diagnosed with myeloma I was very ill, with infections, severe bone pain , lung complications and so on. Graham had to watch over me, try to work out how on earth he was going to pay for the treatment and a million other issues. Our experiences were different from yours as we were plunged into everything without the waiting which you describe so well.
Just yesterday we were at the clinic getting results of a recent bone marrow test. All was well and I remain in remission. Marvelous as this is, and cause for celebration, it does not eliminate our own 'waiting'. We await the time when I might be able to have a drug-free time and we wait, with great anticipation, to returning to our home in Scotland and a more normal life. We try, like you, to focus on positive things and not to let the 'difficult' waiting chat to dominate our lives. We have much to be grateful for and we can cherish the good times.
Good wishes to you both and thank you for your writing,
love
Marjorie
Thank you Tabitha.
Please don't misunderstand what I was saying. I obviously don't know your husband's situation and I can fully understand the mental ups and downs he has gone through. It's consuming to say the least. There's a lot more to my story as well. I will tell you that one of the first specialists I saw told me I was extremely high risk and would progress within months. He also told me I needed to start getting my things in order because I needed a stem cell transplant ASAP, I would not be able to do my physical job anymore. I've been through 4 well known specialists and even was part of a natural progression study at the NIH. My only point to you is, it's not over until it's over! Hang on to the hope (how ever little it is or may seem) that he may not progress or it may take longer than expected.
My thought and heart is with you both. Thank you for sharing. Best wishes!
Dear Tabitha,
Thank you for again writing another insightful column through the eyes of a caregiver. My husband is quiet and does not often express how it is for him. I usually read your articles and, this time, he definitely related to looking for the EASY button.
You as the caregiver are often the closest thing we as the patient have to a button that says "We will try to soften the 'Hard' for you".
Dear Tabitha,
I just want to share with you that my experience as a myeloma patient is that we go through phases or cycles of worries, crying and all the way over the scale to sheer denial. Emergencies happen and then we quickly have to go into action mode. Like going to the hospital immediately if you wake up in the middle of the night, fever has risen to 39 C after a few days of cold cough. Pneumonia is there – a REAL emergency in a myeloma patient like me who was on Sendoxan (cyclophosphamide), dexamethasone, and Velcade treatment. One should be ready to react quickly, but without fear. I was back home within 24 hours. Had to cancel a flight, but now a year later I am going on that journey.
Let me mention that I have been helped a lot by being an MD in my basic training, but it did also initially scare the guts out of me. When doing my internship in 1978, we had to send some patients home after a myeloma diagnosis with only a prescription of steroids and a hope for a better than 6 months survival. After my diagnosis, I started googling and came up with the 3 year survival figure mentioned above. Then a friend called me, telling me that, in his case, what I had thought had been suffering from a benign tumor was in fact a 13 year survival after a double autologous stem cell transplant. He is now 16 years into remission.
Let me also mention that after my own transplant, I was in such bad shape that I could only walk 50 meters on flat ground, and only a half flight of stairs. After 4 months, I was walking several kilometers, and could run up 3 flights of stairs. So things change. It is like sailing. Be prepared for the squalls, have the boat in order, but bask in the sun without worrying.
Sent to you with a big ray of virtual sunshine.