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The Bench in the Lobby

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All of us affected by cancer remember the day everything in our lives suddenly changed forever. 

I will never forget when it happened to us. It was in 2005, and Alan's myeloma was discovered after a routine checkup. There had been indications that something was wrong, back pain, a frozen shoulder, and swelling in his leg that turned out to be from a blood clot. The doctor who diagnosed the blood clot wanted Alan to have a complete physical. When tests revealed high cholesterol and an elevated blood protein, Alan came home concerned about the cholesterol. After a couple of return trips to retest his blood, his physician referred him to a hematology specialist. The hematologist sent him home with the materials for a 24-hour urine test; and I saw the words "Bence Jones" on the label. Alan was surprised that the hematologist worked out of a cancer clinic, but he still wasn't worried; he'd been healthy all his life and thought the doctor was being over-cautious. But I looked up "Bence Jones" on the internet: I was scared. Because Alan wasn't distressed, I felt I couldn't tell him what I'd read. I spent the weekend trailing him around the house, silent, but in tears- until he barked at me to stop following him. 

My emotions careened between hope and fear the weeks before the test results came back. That is another memory all of us share.

 On that day in 2005, Alan went into the doctor's office alone and I waited out in the reception area of the cancer clinic--it didn't occur to either of us that I should be with him in the examination room. That was the last appointment he ever went to without me beside him. When he came out, he led me over to a bench in the clinic lobby. He wrote out "Multiple Myeloma" for me in the little notebook he always carried, and he said the doctor's prognosis was 5-6 years. I remember that I was very calm as I heard this. I was expecting it.  

That night, we went out for Chinese food. Alan's fortune cookie said "Nature, time and patience are the best physicians." We didn't believe it, but when we got home, I typed that fortune into the screensaver on his computer.
Bench in the lobby.JPG

Here is a picture of that bench; I went back and took a photo of it. Every time I see it, I wonder how many other people have sat on that same bench and heard their lives had changed forever.

Last week, our local myeloma support group held a potluck and some of us shared new stories with each other. Mr. B told me about a similar memory, the moment he realized his doctor might be suspecting myeloma and he couldn't tell his wife because it wasn't definite and he didn't want to frighten her. In our blog comments, Dr.  F, in Rome, explained that his wife was expecting their child and he didn't want to upset her with the hard news. That is another shared experience: when you know or suspect, but don't want to burden your beloved with your fears. 

I hope you will share your memories of the days when your life changed forever: I remember how isolated Alan and I felt until we found a community of fellow travelers. Your memories may help someone who's just sat down on a bench in a clinic lobby somewhere and heard the words "Multiple Myeloma" for the first time.

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31 Comments

Kim,

I love reading your caregiver blog. We heard the news "cancer" solitary plasmacytoma on 11/01/06 when a neurosurgeon removed a tumor compressing David's spinal cord. That is a day I will never forget. Then one year later, on Christmas Eve 2007, the oncologist said, you have "Multiple Myeloma." That is also a day I will never forget. David has had three transplants and is currently recovering on Day 57 post allo transplant. Debra

I too remember the day, even through clouded vision. I had a vertioplastie. Dr. Diego J. Covarrubias M.D. said he was certain that I did not have multiple myeloma. The Kaiser doc, Dr Strain tole Judy and I that she was pretty sure that I did. A biopsy was scheduled. Needless to say, we did not return to Dr. Covarrubias. The last time we say him he as a guest at our MM support group. I told him my story. He said he sure hoped that he wasn't the Dr who got it wrong. That was kin the spring of 2007. We still keep going. I generally feel pretty good but who is to say.


Well written as always Kim. It is so true that it is one of those things you will never forget. For us it was last Christmas Eve in the hospital. My husband was having severe back pain, he thought an old injury was resurfacing. He had gone to a clinic and they had given him pain pills and muscle relaxers. He got severely constipated and could barely move due to the back pain so I took him to the ER. They did a blood test and came back saying his calcium level was off the chart and they were going to admit him. I think they did every test in the book on him for three days, then a bone marrow biopsy. They had told us what they suspected so of course I had googled MM read all the symptoms and knew he had every singe one. We got the diagnosis Christmas Eve in the morning, so we brought Christmas to the hospital that day and we all coped the best we could. He came home Christmas day. He is now in remission, still taking Rev and Dex. Our lives will never be the same. Thank you Kim for bringing the caregiver's perspective some light.
Jennifer

Kim, you are an inspiration to us. Frances

We retired to Bluffton, SC in February 2009 and in May my husband, Tim, turned 65 and was entitled to his "welcome to Medicare physical."

The doctor asked him to come back to discuss his blood test results and then informed Tim that he didn't like the numbers of some of the tests so he wanted Tim to see a hematologist. We weren't worried because his his blood results were the same as they had been for a couple of years back in Utah.

When he got his next doctor appointment I was a bit concerned because the doctor was a hematologist/oncologist. He did more tests, M Protein to be exact. He said that Tim might need to go to the hospital for a BMB so they made the appointment and said his office assistant would contact us if we were to keep the appointment or not. We hadn't heard anything but we also couldn't reach anyone in his office so off we went toward the hospital in Savannah. I finally got his receptionist on the phone as we were driving. I asked her if we still needed to go for his BMB and she said that of course we needed to go as he had the protein for multiple myeloma, a disease we had never heard of.

So 3 years later, Tim is still in the smoldering stage although he has had several other cancers.

In Feb, 2011 I relocated to another city for a new job. After about 2 months I became increasingly fatigued, increasingly nauseous, and experienced back pain that I wrote off as sciatica. Two weeks of this drove me to the ER, and was diagnosed with a UTI. A week later another doctor wondered why my complexion was sooooo white, and she ordered bloodwork. My CBC numbers had dropped through the floor, so I was admitted. I'm a medical technologist with enough training for this to make me very suspicious; I knew it involved the bone marrow. While the biopsy was being done, the doctor mentioned to me that I had soft bones, which made the hair rise on the back of my neck. Then I heard her tell the technician with her that she wasn't getting many spicules. That clinched it; the lack of spicules is a pretty specific symptom. When I asked the doctor before she left my room, she did't know how to answer the question, but her facial expression said it all. She finally said that it was very likely. Luckily my partner was with me, and has been my rock ever since, getting me through the dark days of the next month that I spent as as inpatient. After being so healthy all my life, to say that this was devastating is an understatement. But luckily so much has changed over years, that here I am a year later doing pretty well.

We all have our stories & while they are vastly different, they have that similar thread. I try to focus on my new favorite words "highly treatable", although in the beginning "incurable" brought me face down on the floor in anguish. That was in May of 2006 when my husband was diagnosed after a trip to the ER, where they at first thought he was a druggie, because nobody could be in that much pain. He had a collapsed vertebrae T-11. Only those that have walked the walk know & understand. I am so glad Kim that you have started a caregiver blog. It helps to keep us going down this path. Even though, we are at times so very frightened and other times strong enough to reach out a hand to others who are coming behind us. You are one of those links, as we all will become a link between those who have gone before and those who will come after. I thank you with all my heart for staying with the Myeloma community and becoming a voice of the caregivers. My best to you as you continue on your journey and continue to be a light to others.

i found those stories very familiar i found out my husband had myltiple myeloma he too presented with bad back had back problems for years then in hospital waiting for tests oncologist thought it might be a red herring but patient in other bed told us you have what i have got multiple myeloma we said that cant be right but result came back positive he was given 3 to 5 years but he was tough lasted 6 1/2years he died at home in april 2011 it has brought me to tears reading all those real stories

My partner�s creatinine was high in January 2010. He had a kidney ultrasound, nothing showed up. It was a little higher in April and higher still in June. His hemoglobin was dropping too. By July, his PCP sent him to a nephrologist who changed some meds and ordered more blood tests after 10 days on the changed meds. A day or two after the blood tests ordered by the nephrologist, the PCP�s office called to tell us they made an appointment for him with a hematologist. We were filling out the forms at the hematolgist�s office when we noticed Cancer Center in the practice name. I will never forget that day. My partner turned to me and said, �they don�t think I have cancer do they?� My answer, �of course not, you�re anemic, that�s why you�re so tired.� A week after that we had the MM diagnosis. MM? What�s that? Who ever heard of it? He started chemo the day he was diagnosed. Today he is 9 months post-transplant and doing really well. It�s been a hard road to travel but we�re still going strong.

Kim,
Your blog was wonderful. It was almost exactly like or experience with the beginning of this journey. I remember driving up to the Hemotologist, an seeing the words, "Hemotology and Oncology." I think that was the moment I knew Bob had been so sick.You have helped so much. Thank you, Kim.

Kath

These stories are amazing, hard for me to read. I had a life insurance physical in 2004 and to make a long story short, they found out I had MUGUS, I am now smoldering MM. The way I found out was extremely hard. The Dr. called me at work and told me over the phone that I probably had 5 - 10 years to live with MM. Needless to say it was hard to finish my day at work. About a year later I went to the Mayo. (waited to get the right insurance coverage) After two years of appointments every three month, they said I should go on a clinical trial, I said no I'm not ready for that. I instead went to other sources for advice on what I could do to slow this down. I have been on a very strict diet now for six years and am still smouldering. I'm a very fortunate girl, but I know that at any time that can all change. I'm just making the best of everyday and, I'm praying that new and better treatments will happen real soon!!!

My husband was always a big,6'2" man to my barely 5 feet.I could never convince him to go to the doctor.When he started getting nausea and throwing up for three days about every two months he would tell me it was because he worked at Childrens Hospital where we live and so still wouldn't go get checked out.This actually went on for over a year where he was so sick he couldn't get out of bed and threw everything up even water.I took care of him each time and begged him to get checked out, but in my head never suspected anything like this.Then he got a sore shoulder and a broken rib and did go for x-rays and they saw some dark spots that his pcp asked him to go back in to have more x-rays, but unfortunately because he worked in an operating room he knew doctors and had them look at his x-rays and was told not to worry about it it was just bone loss that comes with getting older. Then he started getting back pain that was really bad on Nov.10,2008 and wouldn't go to the doctor until it was so bad he couldn't walk, I could not force him to go to the doctor and believe me I tried. When the pain was so bad that i threatened to have an ambulance come get him he allowed my daughter and i to put him in my car and I rushed him to the emergency room of the Adult hospital he now worked in,believing he would get better care where his "friends" were.The emergency room doctor took some x-rays and told us you have cancer,but it isn't really cancer it is called Multiple Myeloma.That was Dec. 12, 2008. That hospital was not equipped for treating him and things only got worse from there.After ten days of them really doing nothing for him I had him tranferred by ambulance to a Hospital which is connected to Hillman cancer center.From the minute he got there they knew what to do.He had 60 percent plasma cells at this point.My biggest advice is to be your partner's patient advocate.

I can relate. Not to that degree, but quite a lot. The worst instance was when I could not get him to go in and his kidneys had crashed. He waited until his regular weekly appt - by then he was disoriented and threw up getting out of the car - he laid down on the exam table to wait for the doc, who came in and read his bloods on the computer, left the room and returned with a gurney, put him on it and wheeled him across a skyway to an ICU. A week later he was out but on dialysis indefinitely. Luckily recovered function and got off in a month.
Next time I'll call friends to strong arm him into the car ASAP, not let him talk me out of it for three days.

Who can ever forget the day that will change your lives forever. I can remember very clearly the day our doctor told us that Jun could have multiple myeloma. I had mixed emotions- all of them not good. Fear, Sadness, nervousness, faint feeling, shock....
I remember the doc telling us Jun had to do a bone marrow biopsy. And the next minute, Jun was lying down on the Doctor's exam table for the biopsy.
After the biopsy, Jun had a golf game and we separated in the parking lot. As I was driving my car away, I felt tears roll down my eyes which became sobbing tears in a few seconds.
It is indeed a day I will never forget.
Kim, thank you for your blog. This one brought tears into my eyes.

I remember the day of my husband's diagnosis as if it were only yesterday. And I guess that's because he was diagnosed on Jan 31 of this year. He received a bone marrow biopsy the same day and we left the appointment feeling very encouraged as this was a very treatable cancer. But less than 3 weeks later everything changed. His cancer cells were 76% in his bone marrow and he was started on Velcade/Dex at the end of Feb. In the past two months, cyclophosphamide has been added. So far, his protein numbers have not come down at all and have actually gone up a little. So now his doctor is talking about changing the Velcade and giving him Revlimid instead. He also received 5 days of radiation treatment for the lesions on his vertebrae in early March.

It is very scary to see my husband becoming sicker every day. He's been to the hospital 5 times since this started. One 5 day stay for multiple blood clots in both lungs. One 6 day stay for pneumonia and a return two weeks later because the pneumonia was not cleared up and the infection moved into his blood. This time he was in the hospital for 2 weeks on IV antibiotics.

I'm still trying to come to terms with how he managed to get such an aggressive form of this cancer. It just doesn't seem fair. :-(

As I write we are almost four years down the road and ready to drive home from Rochester MN Mayo after SCT, only 18 days ago. But I won't forget the 29th of Nov. 2008, a month after my husband's semi-retirement and two days after our anniversary, when our local dr, a neighbor and friend, called to say he was coming to the house.

We'd thought my husband's back pain was related to arthritis and a car accident (hit from behind) some years earlier. But our friend found something else in the x-rays, a possible plasmacytoma at L-5, and said he suspected multiple myeloma. We knew immediately how bad that is, having a very close friend with MM-amyloidosis Dx 8 years before. When the dr. left, we were stunned and mostly just held each other.

The next three months would be the hardest of our lives with complications involving hospitalization flat on his back and a struggle to regain vertical, the next two years brought two full back surgeries, a front surgery, novel therapy up to a harvest, kidney crash and a month on dialysis, new novel therapy, and now SCT. SCT has been a challenge but we knew we could get through it compared to the things we'd already survived. Celebrating 41 years of "better or worse" this November.

I guess you are right, we all have a vivid memory of THE moment we first knew. Mine is the same, but different. I had a tremendous back pain, my primary care doc sent me to an orthopedist, he prescribed PT. The PT guy nearly killed me. The following Tuesday I went to the ER. They did a bundle of tests. When the blood test came back my wife asked if my daughter, a physician in Boston could talk to him. My daughter after hearing the blood work said sounds like MM and the ER doc agreed. I was out of it and didn't comprehend anything except my daughter said it was a blood disease. Later there was two more docs conferring, I read on one's white coat and thought, "we'll Jessie (my daughter) said it as a blood disease." Then she leaned over to shake someone's hand and I saw the most dreaded word in medicine, "ONCOLOGIST!" I knew then I had cancer, in the privacy of my pain induced fog, I thought I was going to die soon. Well obviously that didn't happen, not yet. That was March 2013. In June we ordered some Chinese takeout. I asked for a "good fortune" cookie. After dinner I opened mine and it read, "Good health will be yours for a long time!" I still have that fortune cookie and yes, it is my screen saver as well. I shared it with my oncologist, she, a young Chinese doctor, smiled. I am doing well, my MM shows total or near total remission.

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