Sharing Steve Mohr's Blog: Worst part of having Myeloma

sharing because this is so well put and a lot of how I feel.

http://www.myelomabeacon.com/headline/2015/08/21/mohrs-myeloma-musings-reflections/

Mohr’s Myeloma Musings: Reflections

7 CommentsBy Steve Mohr
Published: Aug 21, 2015 12:44 pm

During a recent conversation I had with a friend, he un­ex­pected­ly asked me what has been the worst part of having multiple myeloma. For­tu­nate­ly, his cell phone rang before I could answer the ques­tion. It saved me from giv­ing an answer to a ques­tion I have never given much thought to.

At various times since then, I have reflected on what has been the worst aspect of living with multiple myeloma.

While I consider myself a reflective person, think­ing back on past ex­per­i­ences of living with this disease is some­thing I have avoided. My attitude has been to look forward, attempting to live as normal a life as possible.

For the most part, I have been able to do that because every treatment regimen I have undergone so far has been successful. I find it foolhardy to try and think ahead and anticipate what will happen next with this dis­ease and plot a course of action to deal with each possible scenario.

As I pondered my friend's question, though, I wondered if he wanted to know what the worst aspect was phys­i­cally, mentally, or emotionally.

Physically, this is an easy answer. I have stated several times in previous columns that the physical chal­lenges I have experienced with multiple myeloma pale in comparison to what many suffer from with this dis­ease. This was reinforced after I recently read Tom Brokaw's book, "A Good Life Interrupted," and learned of the debilitating back pain he endured. I have suffered nothing physically that comes close to compare to that.

Having said that, there is nothing that I have been through physically that compares to the first eight days of my autologous stem cell transplant experience in June 2014. I went in with a macho attitude of being able to handle anything that the procedure involved. I brazenly told my doctor beforehand that I would set a record (11 days) for the shortest hospital stay at my cancer center. Looking back, I now know what was behind his smile at my boastful prediction.

On about the fifth day I remember thinking that, if it was time for me to meet my maker, I was fully prepared to go. I was discharged after 16 days, the average stay for a patient undergoing a stem cell transplant.

Complete recovery from the physical effects of the stem cell transplant has been slower than I anticipated. It wasn't until this past May that I no longer had bouts of fatigue, and that the neuropathy subsided to barely being noticeable. I am thankful that I now feel better than I have since being diagnosed three and a half years ago.

While the worst of the physical effects of multiple myeloma are minimal and can be managed, such is not the case mentally and emotionally.

Mentally, my cognitive skills and abilities have not seen the recovery from the fog of chemo brain that I suf­fered during induction therapy and the stem cell transplant. I’m struggling to recall names and facts, deliver key points in public speaking engagements, focus on details of tasks, and generally concentrate for long periods of time. There is no history of dementia in my family, so I vainly blame it on the 10 mg of Revlimid(lenalidomide) I take daily as part of my maintenance therapy.

Emotionally, since being diagnosed with multiple myeloma, I have become far more concerned about what others think of me. This is a complete change in thinking for me. Through 29 years as a high school bas­ket­ball coach and six years as a school district superintendent before being diagnosed with myeloma, I de­vel­oped a pretty thick skin and could not afford to be overly concerned about what others thought of me. During the last three and half years, however, I have often wondered if others see me as less than whole, an invalid, contaminated. These questions of self-worth were reinforced when I learned that some of my staff, with the best of intentions, chose not to come to me as they should have to address issues because of what I was going through early in my treatment.

So, in summary, the answer to my friend’s simple, direct question is easy. For me, the worst part of living with multiple myeloma is the mental aspect, the decline in my cognitive skills.

While reflecting on my past and pondering my future, I need to point out that I’m doing far better now than I did before my diagnosis three and a half years ago. I am hopeful I will become a statistical exception to the prognosis of 8 to 10 years I was given then.

TIPS ON TALKING TO A CANCER PATIENT / SURVIVOR

I LIKE THIS ARTICLE FROM TODAY'S EVERETT HERALD

One thing I would add:

If you want to do something that would help

please offer a specific thing or two you are willing to do

rather than just telling the survivor to call you,

 --or that you will do anything. -- Really?

We know others have a life and are busy, too.

No way is it easy to request something

that may not be what someone is comfortable doing.

http://www.heraldnet.com/article/20150815/LIVING/150819614 --AUGUST 15, 2015

Tips on talking with someone who has cancer

By Mary Kay Jurovcik

Special to The Herald

There are times in our lives when we know exactly what to say.

When someone gets married or has a baby or graduates from college, we say, “Congratulations.” When we meet someone new, we say, “Nice to meet you.” When someone loses a loved one, we say, “I’m sorry for your loss.”

When someone is diagnosed with cancer, we often don’t know what to say. Just starting a conversation can be difficult because there is no presupposed way to talk to someone who has cancer.

It’s important to remember that the cancer survivor is still the same person you knew before, and much about that person has not changed. But even for someone who you are close to, discussing a cancer diagnosis and treatment isn’t likely something you have practiced.

I’d like to offer these tips on how to talk to someone who is living with cancer:

Let the survivor guide the conversation.

Some survivors will give you every detail about their diagnosis and treatment. Some would prefer to remain private about what’s happening to them.

I suggest following the survivor’s lead when it comes to discussing the details of the disease.

I’m quite open about my experience, but I know some survivors who consider the details of their diagnosis and treatment to be on a need-to-know basis.

If they say they are OK, they are OK.

My survivor friend Lauren says when she told people she was doing fine while in treatment, they didn’t believe her. They would press her by asking, “I mean, how are you really doing?”

If a survivor tells you she is doing OK, she probably means it. Maybe she is masking her true feelings for your sake, but I’d suggest taking her at face value. Sometimes, we just don’t feel like talking about it.

So…

Talk about something else.

One of the hardest things about cancer is that it takes over your whole life. Sometimes it’s the last thing in the world you want to talk about. Visiting with a survivor and talking about everything except cancer can be so helpful.

When I was in treatment, my friends sometimes worried about complaining or talking about mundane things. Often, there was nothing I wanted to hear about more than their regular, non-cancer lives.

Be careful of comparisons.

Pretty much everyone knows someone who’s had breast cancer, so when I discussed my diagnosis with others, they often wanted to tell me about the person in their lives who had the disease.

My friend Karen, also a survivor, remarked to me once that it was least helpful to hear stories about people who had passed from the disease.

While it’s natural to want to relate to the survivor by sharing other peoples’ experiences, remember that every patient, every person and every experience is different. The details of your neighbor’s or friend’s diagnosis and treatment might be quite different from the survivor you’re hearing from now.

Advice is great when it’s requested.

I got some wonderful advice while I was in treatment from other survivors and from friends and family. But, there is a lot of less helpful and misguided advice for cancer patients out there, too. If survivors are receiving treatment, they are being cared for by a team of medical professionals.

At Providence, we don’t just have oncologists. We have access to nutritionists, financial counselors, therapists, classes and support groups.

While sending articles about new treatments or ideas might seem helpful, it might be more than the survivor is able to process. Wait for the survivor to ask for advice, and if you choose to share something, be careful that it comes from a reputable source.

Sometimes the sun isn’t shining.

Especially when treatment ends, survivors are sometimes expected to just be “OK” — whatever that means. Survivorship can be hard, and it can be difficult to remain positive all the time. Even for generally cheery people, the weight of cancer can bring on the gray clouds.

Bear in mind that the survivor’s life has changed dramatically since his diagnosis. Accept that he might be blue sometimes, and that your support is still vitally important.

Be careful about minimizing the survivor’s feelings by offering artificially positive statements like, “It could be worse,” or “It will be better soon.” This may or may not be true, but it probably won’t improve the survivor’s mood.

Reach out.

I had many people tell me to reach out to them when I needed help, but while in treatment, I was so drained, just looking at my phone seemed like a colossal task. Don’t wait for the survivor to call you. Reach out to him or her. Call, text, show up (if that’s OK with the survivor). Treatment can be very isolating, and survivors often just need friends to come spend time.

Mary Kay Jurovcik is a Lake Stevens wife, mother, writer and breast cancer survivor. At the age of 33, with no family history or prior experience with cancer, she was diagnosed with stage 2B, HER2+ breast cancer. Jurovcik is documenting her journey on a personal website, BoldSurvivor.com, and contributes to the Providence Regional Cancer Partnership website.

HOW NOT TO SAY THE WRONG THING

A CONCRETE WAY TO THINK ABOUT WHAT WE ALL KNOW BUT  OFTEN STRUGGLE WITH--

from an LA Times article by Susan Silk: 

http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."

"It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."

This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.

Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings. When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete:

Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.

And don't worry. You'll get your turn in the center ring. You can count on that.

Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators."