Patient Blogs | Multiple Myeloma
What I Wish People Knew About My Myeloma Diagnosis
photo of woman looking out door

Right now, I am struggling with the very trite phrase “my cancer journey.” It doesn’t really address the terrifying, encouraging, hard, insightful, painful, full-of-opportunities walk through “the valley of the shadow of death.” Generally, people don’t know that this is the space I live in. One thing that I wish that people knew was that even though I may appear well on the outside, I am going through a lot of pain, worry, and fear on the inside. With multiple myeloma, most of the treatments today don’t cause hair loss, skin discoloration, or even severe weight loss. So looking at a myeloma patient, a person may think, “This person can’t be sick; they look great!”

Understanding My Pain

One thing that is common with myeloma patients is persistent pain, a pain that comes from inside the bones, so unless it has begun to physically alter the bone somehow, no one would necessarily know we are in pain. With myeloma we often have to convince our doctors that we are in pain and something new is happening.

It can be hard to differentiate between pain coming from inside my bones and muscle pain, both of which can indicate a problem. Because of this I second guess myself. A lot. I once had a tumor pressing down on my eyeball, as well into my brain, that I didn’t say anything for about a year even though my droopy eye just kept getting droopier because I just didn’t know if it was anything to be worried about.

Besides constantly dealing with pain, we struggle with questions of “When will this treatment stop working? When will a new lesion or plasmacytoma show up? When will my kidneys shut down?” And, as if that is not enough, the rest of the time we battle extreme fatigue and weakness.

Dealing With Unsolicited Advice

Because people often think we aren’t really that sick, they are quick to give advice about the treatment we are doing and about how we are dealing with it emotionally or spiritually. With myeloma, we can live for many years undergoing treatment, so I think that those around us forget or get tired of asking how we are. While we are still dealing with it on a day-to-day basis, they think we are doing fine and don’t really need the help, encouragement, or a listening ear.

Many other cancers are more of an acute experience in which you are diagnosed, you receive treatment in limited form, and then hope that it works and then they are done. Myeloma patients just move on to a new treatment when the current one stops working. It keeps us alive, but now we are dealing with new side effects and whatever symptoms prompted the change in therapy.

I wish people knew that we are doing our own research. I am in touch with hundreds of myeloma patients that have tried every alternative treatment out there and nothing has seemed to work, at least on a long-term basis. I can’t tell you how many people have recommended coffee enemas, mushroom soups, or tried to sell me their supplements and oils. All guaranteed to cure my cancer. There is no medical evidence that these things work. I've often heard of stories in which people try these alternatives and then come back to traditional medicine after it is too late to get ahead of the cancer and they don’t do well.

Many of us meticulously study the next chemotherapies and the mechanisms by which they work. We know the potential side effects and dangers the drug can bring. We understand that, in general, people have good intentions and truly want to help. My experience has been that those who want to sell you something have the hardest time forgiving you for not taking their advice. I had two friends that I said “No” to, so they stopped talking to me for years.

I’ve had people tell me we should just stop saying any negative words because these words, and my attitude about them, was actually causing the cancer to become reality. Many people told me that we just didn’t have enough faith and that if I did, I would be healed. I believe that having a good attitude is important, but sometimes that means you have to vent and get things off your heart and mind. You learn to choose the person you share this with carefully, but it can really help your overall attitude. My faith tells me that I may have things to do while on this journey. I can’t even count the opportunities over 24 years in which I was able to encourage someone or just listen to their story. Healing will come, it just might come when my tasks are done.

Offering Support

Another thing I wish people knew is that managing this disease is a full-time job. Not only do I have to take care of myself physically each day, but I am constantly scheduling and going to doctor’s appointments, and I deal with insurance issues on a regular basis. There always seems to be some issue with getting correct medications on time and at the right dose, and those, and many, many other prescriptions, need to be scheduled and taken appropriately and on time. Needless to say, we need a lot of time to stay on top of all the things involved in having myeloma. Research itself could be its own 40-hour-a-week job so it is important to be wise and balance your life. But it is hard, and I rely on my husband and others, to get it all done. Even with help, it can become very overwhelming and time consuming.

In general, people are kind when they realize what you are going through, but it is a long haul, and often your loved ones and medical team are the only ones that truly know. That is what makes this disease so hard. On the one hand, this is a huge blessing. I was given a 2- to 3-year prognosis 24 years ago. I am now a grandmother to three beautiful little ones. I am so grateful. But on the other hand, I wish I could ring the bell at the oncology center indicating that this was my last chemo treatment. I wish I wasn’t celebrating the fact that I just had my 200th radiation treatment. I wish that I had a team of friends that wanted to make T-shirts and be on my “getting through this” team. Truly, it feels, a lot of the time, like we are a burden to others around us and they are just tired of hearing about the next thing. So I tend to keep it to myself and don’t share unless asked or unless I feel like I am really in need of prayer.

Even after 24 years of this, I don’t know how to solve these problems. It’s not other people’s responsibility to keep me feeling good about my situation. I have to give them grace. I guess I hope that more people will think before they speak. That they might ask how things are going on an occasion. That they understand that even well-intentioned advice can be hurtful.

Just be my friend, listen to me, hold my hand and pray for me. Please don’t forget.

 I am thankful for all the opportunities I have had to interact with people with cancer and their caregivers. They’ve encouraged me and I hope I’ve encouraged them. I’ve had many chances to share my story online, and I hope one person walks away with a hopeful attitude. I would never ask to go through this again, but I don’t regret any of it if we can somehow help others. I will just keep plugging along, taking it one day at a time.

 

 

 

Photo Credit: Ascent Xmedia / Stone via Getty Images

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Beth Ayen

Beth Ayen

Diagnosed since 1998

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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