In August 2017, after several months (maybe even a year) of trying to figure out why I couldn't quite exercise like I used to, I was diagnosed with multiple myeloma. I am a 47-year-old wife and mother of 2 teens. I work in natural resource management in a small town in north central Washington state. I love being outside and healthy living.
How did this happen anyway?
I had slowly been experiencing a lack of energy, strength, and fitness and was exploring different reasons for that. (Am I just getting older? Why am I going so slow? Do I need to change my exercise? More short, intense workouts? Or maybe long slow workouts? Is it my diet?) I had a few injuries that I couldn't quite physical therapy out of, then some weird 3-hour bloody noses, and the final straw was the pack test, which is the fitness test for firefighting where we carry 40 pounds and have to fast-walk 3 miles (4.8 km) in 45 minutes. It is never fun, but always do-able. This year was different though. As soon I put the 45 pounds on my body, I instantly felt weak. As I started the 3 mile fast walk, the heavy weight (and my body's inability to support it) was causing me to walk lop-sided and causing my co-workers alarm. After two miles and several "Kari, are you Ok?"s, I was convinced that maybe I should try another day before I injured myself. I couldn't believe it. I have never, in my 20+ years of doing it, not been able to past this test. Again, "Am I just getting older?". I was bummed and down deep knew something was wrong.
My husband suggested that I get a blood test. I had never thought of that. My physical therapist sister said the description of my legs feeling like lead weights when I tried to increase my running pace sounded like I might be anemic. So off for a full panel blood test!
My wonderful PA took my descriptions seriously and started right away with a series of tests. The first batch of blood tests came back that I was certainly anemic. Severely anemic. About half the hemoglobin and hematocrit of a normal person. Well, that's easy, I thought. That means I need iron, right? My PA said more tests were in order and with my history of breast cancer (in 2014) contacted my oncologist and started some more detailed tests. In the meantime, my mom helped me figure out how to get the most iron into my diet. The family was thrilled to be eating red meat! And I actually started to feel a little better.
One of the blood test results came back with an elevated protein level. I emailed my oncologist about an appointment and she contacted me right away saying we needed to talk in person. Damn it. My sister had been warning me from the beginning that there was a chance this could be multiple myeloma. I had never heard of multiple myeloma. I have already pulled the cancer card. I got through breast cancer, relatively easily, and had been cancer free for three years. What the hell?!
My appointment with my oncologist was a description of what could be multiple myeloma and that more test were needed: a bone marrow biopsy and a full skeletal x-ray. "This is no breast cancer, Kari.", she said, "This is much more serious.".
Denial. That is really where I love to live. : ) It worked well for me with breast cancer. It was just a lumpectomy and radiation. I was able to keep my chin up, keep working, keep running and keep going. I really just didn't want to have to deal with all this cancer stuff again. Ugh.
The bone marrow biopsy was rough. It was seriously one of the most painful and un-nerving experiences I've ever had. When, surprisingly, I started to cry on the exam table and the nurse was pulling bone marrow out of my pelvic bone and I could feel it all the way down to my toes, I knew this was freakin' cancer. My husband and my parents had both offered to go with me for the biopsy. But being in denial, I said, "no problem, I got this." I couldn't wait to get out of the doctor's office and into my car so I could breakdown in private. I called my husband. I should have taken your advice and had you come with me, I said.
By the end of the week the biopsy results were in and we had a follow-up appointment with my oncologist. My husband came. The first thing she told me was that I was going to need a blood transfusion. What? Why? I had just gone for a hike that morning. I wasn't out of breath. But my red blood count was too low and if it got any lower, it could start to effect my organs. So we made plans for a blood transfusion later that same day (after lots of questions: Who's blood am I getting? How much? How does it work? Will I be able to run faster afterward?).
Once we got that figured out, she gave us the bad news. I definitely had multiple myeloma; 90% of my bone marrow showed signs of myeloma cells in the biopsy (which is why it was so painful).
There is no real straight forward cause in my case. I don't fit the profile. I don't work in a radiation type job. She said the radiation I received during breast cancer was very targeted and not directed at my bones, so it wasn't caused from that.
So on to discussing treatment. She explained the Revlimid-Velcade-dexamethasone (RVD) regimen to induce a remission and then a stem cell transplant. "And then will I be done?" Well, multiple myeloma is not curable, but it is treatable. The transplant, she said, should give you 5-10 years of remission. That's it? I had kept it together until then. That is when I broke down. A freakin' stem cell transplant? That's kind of a major deal, right? And it will only give me 5-10 years of remission? All that work for only 5-10 years?
So 4 months of RVD treatment plus Zometa infusions. It has been a journey of side effects and learning how to balance rest and exercise to stay healthy and working. But, really, it hasn't been as bad as many cancer treatments. The care I have received has been wonderful and the support of my family, friends, and co-workers has lifted me up day after day. Truly, it keeps me going. Since August, I have learned a lot about multiple myeloma and know now that there are many different medications for successful treatment and continuing advances in new treatment regimes. My bet (and hope) is that my stem cell transplant, combined with new treatments, will set me up for a remission much longer than 10 years.
I completed my auto stem cell transplant in January 2018 as an outpatient. After two months of being away from home and children, I am getting discharged in 3 days! I'm nervous about leaving my "bubble" of clean living, but so excited to be back in the fresh air and mountains of my home town. That's my kind of medicine.
So that's how I got here. So many similar stories on this forum! It is so good to know that you all are out there, navigating this roller coaster of multiple myeloma.
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Re: Diagnosed in August 2017 at age 47
Kari,
The whole time I was reading your story, I was saying yes!, someone else had a horrible experience with the bone marrow biopsy. I too am a breast cancer survivor and said I would go through another double mastectomy rather than have another bone marrow biopsy! But fortunately I am at the MGUS stage. I am also 63, and my children are grown. So it must be hard at a young age. I pray I can stay at this stage, but once you have cancer, you are always looking over your shoulder.
Mine was found accidentally while getting tests for gastrointestinal problems.
God bless and I pray your stem cell transplant gives you many years of remission.
Robin
The whole time I was reading your story, I was saying yes!, someone else had a horrible experience with the bone marrow biopsy. I too am a breast cancer survivor and said I would go through another double mastectomy rather than have another bone marrow biopsy! But fortunately I am at the MGUS stage. I am also 63, and my children are grown. So it must be hard at a young age. I pray I can stay at this stage, but once you have cancer, you are always looking over your shoulder.
Mine was found accidentally while getting tests for gastrointestinal problems.
God bless and I pray your stem cell transplant gives you many years of remission.
Robin
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robinblessed54 - Name: Robin
- Who do you know with myeloma?: Me/MGUS
- When were you/they diagnosed?: January 2018
- Age at diagnosis: 63
Re: Diagnosed in August 2017 at age 47
Robin,
Thank you for your comments. There seem to be quite a few women on this forum that have had breast cancer along with multiple myeloma. I hope that you can stay at MGUS stage for a long time! And yes, praying that my transplant gives me years and years.
Kari
Thank you for your comments. There seem to be quite a few women on this forum that have had breast cancer along with multiple myeloma. I hope that you can stay at MGUS stage for a long time! And yes, praying that my transplant gives me years and years.
Kari
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kari_g_w
Re: Diagnosed in August 2017 at age 47
Hi Kari,
My youngest brother was having problems just after Thanksgiving 2016. Losing weight, severe itching and eczema all over his body, lack of appetite, lack of energy. Upon a routine blood test, his doctor found a kidney value "off". He did an ultrasound and saw kidney stones. He received the lithotrypsy for stones several times up to June 2017. He started feeling better and symptoms began to reverse. We thought we found the answer.
Later in the summer, he began to have severe pain in both hands. After two months of suffering, he went to emergency room on October 11. Upon blood work, his hemoglobin was dangerously low and he was admitted. I have always been the "geek" of the family, and when I arrived to visit him, the nurse giving him the transfusion and I were chatting a bit. In my mind, this conversation was getting grimmer and grimmer. I thought "Oh God, they're looking for cancer!" He was diagnosed with multiple myeloma the next day.
I am happy to hear things are going well for you, it gives me some hope. He is doing Revlimid, Velcade, and dexamethasone, but not achieving results, so they are changing him to Kyprolis this week. Also, unlike you, my brother has been totally unable to work during treatment. It's been a disheartening road for the family.
Thank you!
My youngest brother was having problems just after Thanksgiving 2016. Losing weight, severe itching and eczema all over his body, lack of appetite, lack of energy. Upon a routine blood test, his doctor found a kidney value "off". He did an ultrasound and saw kidney stones. He received the lithotrypsy for stones several times up to June 2017. He started feeling better and symptoms began to reverse. We thought we found the answer.
Later in the summer, he began to have severe pain in both hands. After two months of suffering, he went to emergency room on October 11. Upon blood work, his hemoglobin was dangerously low and he was admitted. I have always been the "geek" of the family, and when I arrived to visit him, the nurse giving him the transfusion and I were chatting a bit. In my mind, this conversation was getting grimmer and grimmer. I thought "Oh God, they're looking for cancer!" He was diagnosed with multiple myeloma the next day.
I am happy to hear things are going well for you, it gives me some hope. He is doing Revlimid, Velcade, and dexamethasone, but not achieving results, so they are changing him to Kyprolis this week. Also, unlike you, my brother has been totally unable to work during treatment. It's been a disheartening road for the family.
Thank you!
Re: Diagnosed in August 2017 at age 47
Kari,
Thank you for taking the time to share your story. You have a nice writing style that is easy to follow. You are obviously keeping our wits together during this challenging time. Keep doing what you love and staying positive. You have friends that are rooting for you!
Best,
Jon
Thank you for taking the time to share your story. You have a nice writing style that is easy to follow. You are obviously keeping our wits together during this challenging time. Keep doing what you love and staying positive. You have friends that are rooting for you!
Best,
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Diagnosed in August 2017 at age 47
Kari,
I too love your writing style and you sound like a fantastic person. I couldn't help but think there might be some misunderstanding on your part. While it is ideal to remain in remission forever, coming out of remission in 5-10 years is far from the grave prognosis you fear. I would try to look at it as a stumble or fall that's inevitable (although very serious). You'll get back up, adjust your treatment, and live on. Coming out of remission isn't the same as death.
You are still in the very early stages of figuring out this disease. You are well ahead of the curve.
I believe you will be just fine.
Craig
I too love your writing style and you sound like a fantastic person. I couldn't help but think there might be some misunderstanding on your part. While it is ideal to remain in remission forever, coming out of remission in 5-10 years is far from the grave prognosis you fear. I would try to look at it as a stumble or fall that's inevitable (although very serious). You'll get back up, adjust your treatment, and live on. Coming out of remission isn't the same as death.
You are still in the very early stages of figuring out this disease. You are well ahead of the curve.
I believe you will be just fine.
Craig
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Diagnosed in August 2017 at age 47
Jon - Thank you for taking time to reply to this post! Am I right that to see that you were also 47 when first diagnosed?
lemansblu - I hope the new treatment regimen helps your brother's response! It is a continuous fascination for me to see how differently each of us respond and react to different treatments. He is lucky to have a sister like you who is watching out for him!
Craig - Thank you for your response. I appreciate your input! I originally drafted this post a few months ago, and my education and experience in the last two months has certainly changed my outlook on this disease and I am working on my long-term perspective.: ) I won't lie, its definitely a challenge for me to accept that I will be living with multiple myeloma. But learning about other's stories and actually going through it helps with the acceptance. That, and a strong dose of meditation. Just like my auto transplant I had 26 days ago, the anticipation and fear of the unknown are much worse than the actual treatment. So, thank you for the encouragement and the reminder that coming out of remission isn't the same as death. I need that.
lemansblu - I hope the new treatment regimen helps your brother's response! It is a continuous fascination for me to see how differently each of us respond and react to different treatments. He is lucky to have a sister like you who is watching out for him!
Craig - Thank you for your response. I appreciate your input! I originally drafted this post a few months ago, and my education and experience in the last two months has certainly changed my outlook on this disease and I am working on my long-term perspective.: ) I won't lie, its definitely a challenge for me to accept that I will be living with multiple myeloma. But learning about other's stories and actually going through it helps with the acceptance. That, and a strong dose of meditation. Just like my auto transplant I had 26 days ago, the anticipation and fear of the unknown are much worse than the actual treatment. So, thank you for the encouragement and the reminder that coming out of remission isn't the same as death. I need that.
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kari_g_w
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