Myeloma In Paradise: Diagnosis Is Its Own Disease
The day you find out you have multiple myeloma is obviously one of the hardest days in your life.
It is a very personal experience, but I’m sure you can remember your feelings of shock, fear, disbelief, or anger when you were told that you have multiple myeloma. Some of you may have felt relief that you have put a face on the mystery.
What follows that day can have a profound impact on the rest of our lives. I want to share my experience with the newly diagnosed patients reading The Beacon so that they might be able to better understand what they are going through.
Because of the difficulty of diagnosing multiple myeloma, the stage at which it is discovered varies greatly from person to person. Many are diagnosed with advanced disease that manifests itself through broken bones, organ failure, or extreme pain. The “lucky” ones (I consider myself one of them) catch their disease at an earlier stage; sometimes they don’t even have any symptoms at all.
I was diagnosed only after a two-year search for the cause of my recurring abdominal pain and intestinal problems. After I got the results from a bone marrow biopsy indicating that I had multiple myeloma, the doctor spouted forth an overwhelming amount of information on how I could or should treat my disease. I found myself in such a state of shock that all I heard was the teacher in a Charlie Brown cartoon talking – wah, wah wah wah, wah wah. INCURABLE CANCER, wah, wah wah wah.
Because I was asymptomatic, I didn’t need to begin treatment right away. That turned out to be a huge blessing – a blessing that I wasn’t even aware of at the time.
The weeks, or even months, following my diagnosis, I struggled mightily to come to grips with the implications of my diagnosis.
How will I be able to raise my children?
How long am I going to live?
How disabled am I going to get and when?
Should I move to a place that specializes in this care? If so, when?
How will I pay for all this?
And on and on and on.
The result of this struggle was a predictable huge load of stress. I am sure most of you can relate.
In addition, I was in a state of constant hyper-awareness of how I was feeling. Every ache, pain, and itch was examined and questioned in depth.
Why do I cough?
Should I be having this diarrhea?
What is that ache in my elbow?
How come I have a headache?
I can state without a doubt that stress has a very negative impact on my health. During times of high stress, my body definitely takes a hit. So for the first two or three months after my diagnosis, I felt pretty crappy.
I hadn’t started treatment yet (more on that later), and my cancer was still asymptomatic, so why was I feeling bad?
What I have found in hindsight is that the cause of my current illness wasn’t my cancer – it was the stress of my diagnosis.
Don’t underestimate this stress. Being told you have an incurable disease is enough to blow anybody’s gaskets. I realize, of course, that many patients with pain, broken bones, or worse, also have the physical stress of their body trying to heal.
Since my diagnosis over two years ago, I have gone through nine months of induction therapy, three bone marrow biopsies, 232 million blood tests, a stem cell harvest (for future transplantation), and I have been on maintenance therapy for three months now.
These experiences have allowed me to distinguish the different symptoms of the cancer from those related to treatment and from those due to stress.
All three cause negative feelings in my body, but it helps me mentally to be able to distinguish them. It helps me, for example, to feel that my treatment is keeping my cancer from progressing and that therefore pumping this poison into my body has a purpose.
Many patients don’t get the luxury to sort these feelings out. All too frequently, I hear of patients who have had to start their treatment immediately upon diagnosis. I can only imagine how hard it must be to try and sort out what is disease, what is treatment, and what is stress.
For those of you who are recently diagnosed, I urge patience. I know this is a VERY difficult time in your life. However, I can tell you that it gets better.
If you are asymptomatic, or maybe if you only have MGUS, try to see this diagnosis as the positive that it is. You don’t have to add any treatment to your diet for now - or maybe even ever.
If you are symptomatic or need to begin treatment right away, try to see the positive in the fact that you have identified your disease and that the treatment you are getting will soon make you feel better and prolong your days to a meaningful degree.
In either case, hug your loved ones, smell the roses, enjoy the richness of life around you. Facing your own mortality is a heavy experience, but we are all equipped with the tools to do so because we all have to do so eventually.
However, remember that just getting a myeloma diagnosis may cause you to feel physically ill for a while.
Be patient in your search to understand all of this. In time you too will be able to identify most of what you are feeling. The pain of diagnosis will subside with time. Unless you are truly facing a medical emergency, try not to turn your condition into one. It won’t help; it will only increase your stress level.
I found a lot of comfort right here in these pages. Reading about the experiences of real people who have actually been through this and how they are coping with their disease was very helpful to me.
In time you will discover what works for you, but for the first few days / weeks / months, just give yourself permission to be sick.
I would love to hear from others in our community who had to deal with symptoms and/or treatment at the same time as their diagnosis. How did you figure out which was doing what to you? How did you get through these dark days?
Trust me; our recently diagnosed friends want to know.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. The title that he chose for his column, “Myeloma In Paradise,” is in reference to one of Hawaii's unofficial nicknames, Paradise.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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Tom,
Aloha to you. I found out that I had multiple myeloma with a phone call around 7 pm from my neurologist, on Valentines Day. I answered the phone, and like you, I heard blah blah blah blah, cancer of the bone marrow, blah blah blah, will set you up with oncologist I use, blah blah blah, click. I then start to sob, and cry. My poor husband of 32 years is staring at me going what, what, what? I finally could utter the words "CANCER".
As I said, this was in February of 2011, and by September of 2011, I had had 10 rounds of radiation, induction with Revlimid, signed up for two studies, had 6 bone marrow biopsies, numerous blood tests, more radiation, then the preparation for the stem cell transplant.
When we met with the oncologist, he said that he was sending us to either Emory in Atlanta or Georgia College of Medicine in Augusta. Both have multiple myeloma specialists. We chose Augusta, since it was closer and easier to travel to and from. We were told when we met the oncologist in Augusta, that he had to bring my case to a board, we were dumb struck. But since I have the 13th deletion, 111A 1gG Kappa, and is very aggressive, we were set up for the treatment by the oncologist and his team. Then there were more bone marrow biopsies, blood work, Revlimid, Neupogen, harvest, scans, x-rays, central line inserted, etc. and then the appointment for the calendar of events for the transplant (he uses a calendar and lists each event or procedure on this calendar to include all the tests).
We were told it would be 2 months in the hospital, in isolation, in the transplant ward which was just completed with negative airflow, and huge rooms with a bed for the spouse if they want to stay overnight. I was working full time as well as my husband. He had already retired from the Army with 20 years in 1991. But that retirement check was not enough to live on, so we both continued to work. Now, I'm going to be out of work for "up to 6 months" per the doctor. What are we going to use for money? How will we live? We asked if we could think about this ... it only took a couple of minutes and we said yes! We will have to find a way.
Luckily, I had purchased a cancer policy when my baby sister was diagnosed with breast cancer. And the military health insurance will pay for the cancer care and the transplant. So we were going to be fine financially. But what about after the transplant?
I had never heard of this type of cancer and the Internet was overwhelming! I could not make heads or tails of all of it. And the prognosis was scary. I had not been sick, no symptoms except the compression fracture in my T9. But I had back issues for years! As it turned out, it was the multiple myeloma eating my spine. I'm now 4 inches shorter and have had 2 rounds of fractures. My co-workers were so supportive. My company was too. My job was waiting for me when I returned 3 months later.
Now that I have been in remission (yes they used that word), I have slowed down, taken the time to read, join social groups who have multiple myeloma, and ask my doctors questions! But it took 3 years to do this. Why?? I was working, helping my grown daughter get set up in a new home (I have 2 grandchildren). And then I was laid off and had to file for disability, and try to stay out of the hospital (double pneumonia twice in 3 months and anemia with a severe nose bleed that required surgery). That is why I can now read and understand what I was facing and what I will face in the future if I relapse.
My advice is the same as yours. Stop! Take a breath and ask questions. Write it down and then look it up. Get a specialist that deals in multiple myeloma. Get a patient advocate -- most medical plans offer one, and the hospital had one assigned to me when I was in for my transplant. They are so valuable in guiding and explaining things. There is so much help out there in Cancer Land. Don't go it alone or in the dark. And if you need one place to start, start here at the Beacon. My daughter told me about this site when I was going through transplant. It was wonderful to have this information.
I hope this will help others. I am not afraid to offer help and encouragement.
Be strong and I hope that you stay asymptomatic.
Mary
Aloha Mary,
Thank you so much for your detailed letter. You captured many of my same feelings. I think this is exactly what will help newly diagnosed patients. It's amazing how much smarter we get with experience!
I hope your remission holds forever!
Tom
Thanks for a great column, Thomas! You capture really well how confusing and frightening it is to receive a cancer diagnosis. The mental aspects of it are another dragon to slay! Aloha, and hope you are doing well.
After a minor fall, I completely broke the top of my left arm, and I had surgery to replace it. On release, they told me I was severely anemic. My primary care doc had me do a colonoscopy and endoscopy. They couldn't figure it out. Meanwhile, my employer was trying to fire me (fall was on the job), so I signed up with the VA for health care.
My VA primary care doc set me up with kidney doc, creatinine was 3 (normal is 1.2). This was late January 2013. She made me give up alcohol, Celebrex -- anything else that affected kidney function. By mid march, had a severe nosebleed, fatigue, but was still working. Then I had a blood test, drove back to the job (52 miles), clocked in, then cell phone rang, they told me to get back to hospital. Creatinine was now 7.45. Kidneys were shutting down. Five days later, strange doc woke me up with news about multiple myeloma. Say what you will about VA, but they saved my life (year of Velcade / dex, then auto stem cell transplant).
After hearing the 2 to 5 years to live, eventually I decided I don't like folks telling me what to do, so I will die when I'm good and ready, not before.
I am immensely humbled by, and salute, brave patients like yourself and Mary Dee for your outstanding courage in the face of such a crushing diagnosis. Your strength of will to endure the painful tests and harsh cycles of therapy is inspiring.
Thank you for sharing your story so eloquently.
My experience of finding out that I have myeloma I suspect is a bit unusual since the moment of shock came when I looked at my own bone marrow biopsy slides under the microscope before anyone else (I'm a pathologist) and saw too many plasma cells. I literally got a sick feeling, since I knew too well what that meant for me and my family.
Thank you, Tom, for an excellent column about the emotional upheaval a myeloma diagnosis brings. I'm a year + out from my own diagnosis (no symptoms, but had to start treatment right away followed by a stem cell transplant 6 months ago ), and what a difference a year makes. The initial shock, confusion and just trying to deal was very rough. What helped? Have a doctor and health care team that I have complete confidence in. And my husband and I relied on family and friends for emotional help. I found a great support group (and recommend that). Also, kept up (as I could) with my walking routine and activities. And, very important for me was/is learning as much as I can about this disease. I look at this as a fight for my health! Am now in remission (feeling great) and getting Velcade for maintenance.
You said it right: the days were sure dark, especially early on in my "fight", but one year later, life is so much better. I agree with you: Carpe diem!
Dark days, indeed. I went through all the classic stages of grief upon learning that I had smoldering myeloma in 2013. Disbelief turned into anger, then great fear, much weeping, and sleepless nights. How was I going to tell my kids, how would my 91-year-old father take the news, how were we going to pay for this?
My husband and I had finally retired and had purchased catastrophic insurance to tide us through until we were eligible for social security. Having never been seriously ill, I thought it was worth the gamble. A week before I retired I decided it was prudent to have a thorough physical since my work insurance would cover it. So when my GP called a few weeks later to inform me that I had an elevated protein in my blood and he wanted me to see a hematologist, I realized I had lost my gamble and the word "catastrophic" would come to mean many things.
This is what I learned during and after those dark days:
I hope this is helpful to those recently diagnosed.
Aloha,
Thank you sooo much for sharing your stories. This is exactly what I think recently diagnosed folks need to hear. The best message here I think is that this gets mentally easier with time.
Sue - I love your step by step suggestions. You are so right about the Internet. It is a blessing and a curse at the same time. We have to remember that we are not an average. Especially with myeloma! It is so individual.
Jim - How unusual for you to be able to read your own slide! I hope you are doing well. Please continue to share your insights as a pathologist. I doubt there are many of you in our community.
Bob, Sylvia, & Nancy - Keep on doing the best you can with what you've got today. Each day is a truly blessing. We can't choose the quantity of our days, but we can choose the quality.
I was diagnosed 10 months ago, and it amazingly was not that bad an experience. Prior to actual diagnosis, I had a blood test which showed anemia and high blood protein (non-specific). This called for my general practitioner to ask for additional blood work and for me to start scouring the internet for possible causes. I hit on Myeloma fairly quickly but thought that the odds were too low for that to be the cause (I was 38 years old and relatively healthy). But I read about the disease and treatment anyway, and I thought, "That is the worst it could be, but I could handle it."
Two weeks later I got the call that it was in fact Myeloma and that I would be referred immediately to MD Anderson. Yes, I was sad. Yes, I was worried for my family's reaction and future. But I was calm and confident that this wouldn't bring about my immediate end. (Thankfully I have awesome insurance, so I wasn't too worried financially.)
Everyone I talk to says that they are shocked by my positive outlook after such a "devastating" diagnosis. Only, for me, it wasn't devastating. It is life. I guess my faith in God and my understanding that "Sometimes life sucks" have joined forces to give me the emotional strength to keep on going.
My advice to those (others) newly diagnosed:
As for me, I take some solace in the fact that I am more likely to die today in a car accident than I am to die due to my cancer. I realize that may not be true for ever, but for each day that it is true, I can't let cancer stop me any more than I let the fear of a car accident stop me!
You've given me something to think about, Thomas.
I was very sick when I was diagnosed. Radiation for bulging lesions in and around my spine. I was prescribed 16 mg dex a day by my radiation oncologist to help with pain, swelling -- and he must have read that dex helps disarm myeloma, too.
Problem was two fold. First, radiation and dex do not mix. Made me SICK for weeks. Second, no one ever told me to stop taking the dex! I was a mess after seven weeks or so. Hard to stop using it. It helped with the pain, and dropping even a single tab from my daily regimen caused me to shake and break out in cold sweats. I was a dex addict!
But I never stopped to think that the stress of it all may have been contributing to how poorly I felt. Very perceptive of you!
Io sono italiana e ho avuto la diagnosi di mieloma nel 2012 a 42 anni.Anche per me è stato uno shock e anch'io ho cercato notizie su internet che mi hanno messo ancora più paura. Ho fatto il trapianto di cellule staminali 21 mesi fa ed ora sto facendo il mantenimento con Revlimid. La sanità in Italia è pubblica quindi non ho pagato nessuna cura, almeno questo. I dolori, le intossicazioni da bortezomid e cortisone li ho superati grazie alla mia famiglia e alla fede in Dio. Questo è l'unico sito che ho trovato dedicato alla nostra malattia e ne sono contenta! Faccio a tutti voi un grande in bocca al lupo!Ad maiora!
(Rough English translation: I am Italian and I was diagnosed with myeloma in 2012 at the age of 42. The diagnosis also was a shock for me, and I likewise grew even more afraid after looking for information on the Internet. I had a stem cell transplant 21 months ago and I'm now doing maintenance with Revlimid. Health care in Italy is public, so at least there was no financial shock due to the diagnosis. The pain, and side effects due to bortezomib (Velcade) and cortisone, I have overcome thanks to my family and my faith in God. This is the only site I found dedicated to our illness, and I am glad to have found it! Best of luck to you, and much success in the future!)
Aloha Anna,
I am thrilled that the Beacon is read by you in Italy. It did not occur to me that our community is so international, but of course it is. Myeloma knows no boundaries. I am happy that your faith in God is strong! Be well and try to enjoy each and every day!
Aloha
Tom
Aloha Pat,
You are an inspiration!
Were you able to eventually identify which symptoms were related to the cancer, the treatment, or maybe the stress? I'm sorry you had to endure the mix of dex and radiation.
I hate that such a simple thing as telling you to stop the dex was overlooked. Its certainly not something I would have known.
For our newly diagnosed readers, this is exactly the type of thing that happens when you are new to myeloma. You don't know what to ask. You assume the docs and nurses are on top of everything. As is said in about 5 places above - QUESTION EVERYTHING. Pat had to endure weeks of being sick just for lack of a question.
Aloha
Tom
I was diagnosed on May 8, 2013. Amazing how one remember these kinds of dates. I was told at the time that this was good news, as they were concerned I had a metastatic cancer that was in my bones now. It was caught early and is very treatable. I had radiation for a pathological fracture of the clavicle. And then started four cycles of VRD. I'm in the process of having my work up for a transplant and I'm currently searching for all kinds of information on autologous stem cell transplant
Thank you for writing on the site, as more information is what we need to gather and what is on the web is very disheartening. I have read through "I have this many months to I have this many years." And, like others, I plan to die of something else.
I find that the general public thinks that most cancer is curable and mine is as well. I am not sure how my family and friends are going to be when or if I relapse.
Aloha Cheryl,
Sounds like you are doing pretty well now. Try not to worry about the relapse or how many months or years you may have. Your friends and family will adapt just like yourself if and when it happens.
I like to try to instead focus on what I have today. I know its easier said than done, but I do believe it will make my remaining 1-50 years I have left that much better!
Aloha
Tom
Hi, I was diagnosed with stage 1 myeloma at 11.30 this morning so it is all very raw as you can imagine. I had prepared myself for the worst so it wasn't a complete shock but shock all the same. I am very frightened for what my future holds and for the future of my children as my youngest is only 6.
My diagnosis comes after a routine blood test picked up bence Jones and protein in my blood and urine. A bone marrow biopsy followed 2 weeks ago and now today, I have my diagnosis.
I am really trying to think positive as my haematologist has said all levels, i.e. calcium, kidney function, antibodies are all normal and that I don't need treatment yet. I am a 37 year old woman and I feel that my life will never be good again, I will never wake up or go to sleep happy and I won't ever enjoy my children again.
Hello Ollie,
We're very sorry to hear about your diagnosis. We can understand the shock and fear you are experiencing at this point.
You have come to an excellent place for information and support about myeloma. You probably have many questions related to your diagnosis and the way forward. If so, you may find it helpful to go the discussion forum here at The Beacon and introduce yourself in the "Member Introductions" section of the forum. There, you can describe what led to your diagnosis, provide information on the diagnosis, and start asking questions that you may have.
There are many knowledgeable patients, caregivers, and expert physicians who provide support and perspective in the forum. There also is a great deal of accumulated information there.
You also will want to check the Resources area of this site, as well as the news articles and opinion columns.
From what you've described -- particularly the fact that your physician is not currently recommending treatment of your myeloma -- it sounds like you may have been diagnosed with what is known as smoldering myeloma. With smoldering myeloma, it is entirely possible that you may remain symptom free, and not require treatment, for a long, long time to come. There is a section of the Beacon's forum specifically dedicated to issues and questions related to smoldering myeloma.
We wish you all the best, and hope you find the resources and support here at The Beacon helpful to you and to your family.
Aloha Ollie,
I am so sorry for your pain. Nothing anybody says will make it better for a while. Thank-you for responding to my column. As the staff at the Beacon has said above, you have come to good place. I find it to be the best spot for real life information.
Please try not to get caught up in statistics. I know you will here this alot, but it is true. You have a good chance to live a long time and to see your children all grow up. Your life will be changed, but not all of the changes will be negative. For now, do not make any huge decisions or take any dramatic actions. Unless your doctor has told you your condition is imminently life threatening, it probably isn't. There is no rush to solve this.
Be patient with yourself and your ability to process this. It takes a while, but it does get better. You might not start treatment for a very long time. Once you do, it is usually very tolerable. I have been on treatment for almost 2 years now and I still hunt, fish, swim, surf, golf and work. My main problems are just being a 52 year old guy. My situation is not unusual.
I hope this helps just a little bit. I understand your pain!
Aloha
Tom
Thank you so much for your reply. I am finding these forums so helpful at the moment and it gives a sense of comfort to read other people's experiences with this cruel condition, and I don't feel so alone. I have learnt the hard way that this is definitely the best site on the Internet, so will only be using this one from now on as some of the information on other sites seem to be terrifying and not always accurate or correct. I am trying my very best to focus on the positives and trying to find a level of acceptance which I am hoping will come with time. My doctor said on average I probably won't need any treatment for 8 years or so, and with current methods of treatment and new treatments coming all the time, I think (and hope) I have a good chance of controlling it and living a long and happy life, as you and so many others seem to be managing. I admire your strength and you are an inspiration to me.
Meanwhile, back to reality in the morning ... school run and a full day at work and my son's birthday party to plan and cater for (50+ children on Sunday), so I don't plan on sitting around feeling sorry for myself or dwelling on the future.
But thank you again Tom for your reply and also the staff at the Beacon for your reassurance. I think I will introduce myself to the smouldering myeloma forum tomorrow, as that's exactly what the haematologist said I have. But he said he preferred the term asymptomatic.
I will no doubt be in touch again soon as I expect this roller coaster ride of emotions will bring me back.
Thank you again and good luck on your journey!
Ollie x
Hi there. My symptoms started 6 months before diagnosis in 2007. I was traveling for business, and on my last night, woke up with severe back/hip pain. This was very unusual as I had no prior symptoms. I almost needed a wheelchair to get home, but made it. The night time back pain continued periodically for several months, at which time I went to my GP to discuss. They found I was severely anemic (also new), and did a variety of tests, but didn't find anything causing the anemia.
After several more months and 2 calls to 911, I was finally admitted to the hospital for more extensive testing. After 2 days they came back with either HIV or multiple myeloma. Well I was pretty sure it wasn't HIV and didn't know a thing about MM. Was officially diagnosed 2 weeks later with MM (maybe only person to be happy with the diagnosis considering the alternative!).
Have had 2 auto transplants since and tried various other treatments. Still searching for something to stabilize me, but in the meantime I'm LIVING LIFE.
Aloha Mike,
Sounds like you are doing all you can do. Most importantly though are the last two words - LIVING LIFE! I think we need to do all we can do to fight back while still giving ourselves as much quality to our lives as possible.
Carpe Diem!
Tom
Thomas, great article. You hit the nail on the head. I thing we all go into a haze when we are diagnosed. I found out that the big island was not a good place to have this disease. Stay strong, aloha Paul Steed
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