Categories
Myeloma Stories Patient

An unwanted teacher

In March of 2006 my husband, 56 years old, and I learned of his multiple myeloma diagnosis after almost year dealing with treatment for what was thought to be a hamstring pull. Although I had researched multiple myeloma on the internet while waiting for the test results, it did not prepare us for what was to follow.

And so the journey began. Two healthy people who rarely visited a doctor to a life immersed in testing, hospitals, doctor offices, and waiting.

The good news was my husband had a very understanding boss, good insurance, and the helpful IMF packet that I requested helped me better understand the disease, treatments, and gave some hope that he may have longer to live than the two to five years given to us initially by the oncologist. The journey has also led us to meet some wonderful people. Wonderful doctors, nurses and hospital staff. Courageous cancer survivors, cancer patients, and compassionate caregivers.

Multiple myeloma has been an unwanted teacher but has taught us how to better live our lives focusing on the present, deepening our spiritual life, and deepening our understanding of what is important in life and for that we are deeply grateful.

Gary is currently on Dex/Velcade following a three year chemo rest as a result of stem cell transplant. The fallout from radiation treatments and mulitple myeloma’s attack on the spine cause daily pain which seem more a battle now than myeloma itself.

I am happy to see the increased awareness which is leading to earlier detection and diagnosis so multiple myeloma patients now may be able to forego the handicapping bone damage before beginning treatment.

— Amy D.
    New Bern, NC

Categories
Myeloma Stories Patient

Travelling the long road with positivity

After feeling so tired and weak over Christmas and a camping holiday I’ve decided to head off to see my doctor, with alot of coaxing from my husband. You know how you always think to yourself “oh I’m alright it will go away”. This just seemed to get worse. The “ammonia” taste in my mouth was more frequent . I knew my body was telling me something. I just couldn’t work it out. Blood tests results came in Monday. App requested by doctor first thing.

Tuesday 12th Jan 16 ” it seems my kidney function levels have plummetted” the doctor said . You can have an ultrasound this afternoon. Oh ok…. thinking is this serious? Doctor seems to be ordering alot more tests. Doppler of kidneys as well. Anyway it turns out she had been talking to Renal Clinic at Royal Brisbane Women’s Hospital and they wanted to see me ASAP.

Monday 18th Jan 2016. They admitted me straight away advising they believe it is myeloma blood cancer and I needed biopsies. Dumbfounded. Never ever expected something like this. I had to call my husband and children to let them know. Brian has only just gone through bowel cancer operation in September 2015 . We didn’t need this. Kidney biopsy booked for Tuesday 19th, blood tests every day. Hematologist doctors came Wednesday advising they won’t fully diagnose Miultiple Myeloma until bone marrow biopsy.

Friday 22nd Jan 16. I had the biopsy about 1. I reckon it was about 2:30 when Dr. Nick Weber and Dr. Scott came with the diagnosis. Yes, multiple myeloma. I was being discharged to start treatment as an out-patient which had to be approved by the government due to cost.

Friday 29th Jan 2016 I started cycle 1 SubQ Velcade along with Dexamethasone and 10 Cyclophosphamide weekly. I’ve had 2 cycles (twice weekly injections) now cycle 3 starts next week on weekly for a few cycles . Doctor will be doing a live stem cell transplant and also will be giving me bone strengthening injections. This has all happened so quickly and our medical teams prompt action I cannot fault.

I am participating in the Worlds Greatest shave on Monday 14 March and our team has raised over $10,000 for blood cancer. “A long road head of me”. … I hear those words so much. BUT I will travel that road with positivity and wonderful support from my family, friends and work mates. I will fight this!!!

—Christine B.
Queensland, Australia

Categories
Myeloma Stories Patient

Nothing convenient about myeloma

Lucky me, finally diagnosed with a “hard to diagnose” cancer, Multiple Myeloma.

My story begins finding me in what can only be described as utter desperation. Who knows how long I was really sick?! My back hurt and my ribs were killing me for what felt like forever. As I look back on it, it was at least a year and a half. In that time, I tried everything, and I mean everything. Massage, yoga, physical therapy, chiropractic, acupuncture, pain clinics and every vitamin and magic potion imaginable.

At one point, I even ended up in the emergency room. I couldn’t move, simply couldn’t get out of bed. I had chest x-rays numerous times because I was constantly sick and coughing. On my trip to the emergency room, it was strongly recommended that I see a cardiologist. I had every test under the sun, stress tests, ultra sounds and enough ekg’s to make my head spin. All that, and still no diagnosis. I asked her six different times, “do you think I could have some kind of cancer”? I was still coughing.

Out of shear frustration, I went to an ENT group and threw myself at their feet thinking that if they could at least clear up this cough, I wouldn’t want to jump off of a bridge every time that I coughed. They gave me so many antibiotics that it caused me to get a urinary tract infection. My break-through came here…. My urologist was the first doctor in this odyssey that knew me. He knew that I was in grave condition and that something was really wrong with me. He sent me to his own personal doctor. He called him on his cellular phone and asked him to see me immediately. I was there an hour later. Two days later I was having emergency, life saving surgery for pleurisy. It was during this surgery called a plural effusion that lesions on my spine and ribs were clearly evident. It was in the recovery room that I was introduced to a new member of the team…. my oncologist.

There are two things about my story that I would like to share:

1. Go to a doctor that you know and that really knows you. Had I been to anyone in the chain that knew me, perhaps I wouldn’t have presented with stage 3 Multiple Myeloma. Curiously, many, many people present with stage 3… there are only 3 stages with Multiple Myeloma. Rib pain is a classic symptom of Multiple Myeloma.

2. Run, don’t walk to a Multiple Myeloma specialist. Do not risk your treatment and ultimately your life with a cancer generalist. In closing, a new group member in the Multiple Myeloma group that I attend and I were chatting. I mentioned my success at a major center in Houston, Texas where I stayed for 4+ months. Her immediate reaction was that she wouldn’t even consider such a thing as it would be just too “inconvenient”. Folks, there isn’t a thing about Multiple Myeloma that is convenient, sorry. Good luck to us all!

— Matt M.
Miami, FL

Categories
Myeloma Stories

Iveta S. – Brno, Czech Republic

I´m 45 years old, I´m married and have two sons. My story did not start with the diagnosis of Multiple Myeloma but the beginning was somewhere else ….. I do not know exactly where, in fact. I only know that diagnosis is a consequence. Simply the consequence on how much stress, problems in life we have, what is a sign of life and it is also about how we can achieve balance with unpleasant situations.

On the other side of the scale there is a pleasure. And the scale outbalanced a lot the other side at me. When I started to have problems (at that time I was not forty yet), the problems grew and I had to use depression drugs. But there were other problems, quite physical ones. There were often bits of temperature, headaches and spine pain. My GP told me many times that I had to relax and that I was only tired.

So several visits were repeated and diseases were added. One of those attacks (I could not stay straight, I was sick and I had been vomiting at that time) my employer even took me to my doctor personally. I got again a sickness leave for a week and valuable advice – no stress and rest a lot! However, it was easy to say but it was more difficult to realize.

It was not in my situation. I can see it completely different today. All it was possible but a man has to step up his priorities of life at that time it did not work. Another good advice of my doctor was: “This your temperatures are not temperatures – you know what, do not measure yourself and so”. But I did not measure myself so much. I did not have time for it. I simply felt the bit of temperature on myself. And I did not live comfortable with it. And this unbelievable situation was lasting three years. Then I had uncontrolled nose bleeding moment by moment and I could not get rid of it.

My friend arranged ENT examination for me at the University Hospital in Brno. When the doctor saw that the treatment absolutely did not work, he asked me when was the last time I had a blood examination. It was such a long time ago that I could not remember it. Finally I was showed the blood count. The results were absolutely not normal, but it was not the diagnosis yet. After nearly two weeks of various tests I had not thought about their existences before. They put a lot of pressure on me!

I was working in the evenings, days I spent in waiting rooms in different departments. After my second visit to the hematological department, I was told: “I´m afraid madam, you know, we do not seriously think about myeloma yet, you know, you are too young for this diagnosis.” My husband took me to hospital and neither of us knew what multiple myeloma was.  Just that it was very serious (as they said in the hospital). Something was said in the examination result. I held it in my hand and it was about the hematological department. At that time my husband told me that I should not have taken it personally “this oncological department.” Probably nowhere else they could do it.

Actually, what kind of disease I was told by my psychologist (and I can say not in a pleasant way at all). She came to me at the department when I had been there and my treatment had started. The situation was bad for my boss as well. No wonder. I was gone from day to day. I was working in a private company and I still continued to word there, in fact it was a normal situation in that time. I worked behind the counter, provided business agency, warehouse agenda, payrolls all accounting, sales returns, planning work for craftsmen and others. And the evening I did housekeeping. Who else? In fact, I was the only woman in the company.

The week-sickness leaves which my GP wrote me really did not help me at that time. All was waiting for me after my coming back I had to do everything. I stressed much more than before.

My husband and I wanted to buy a small house somewhere in the country for several years. I had just an impression that I would not able to carry on everyday situations in the city center. It was my dream, I had been dreaming nearly ten years but there was no success. We had an appointment for signing a mortgage in the afternoon that day when I was admitted for a treatment at The University Hospital Brno. The meeting did not take place and we wanted to withdraw from everything because I got an impression that my life was ending. We had “a subcontractor” for the construction site an older man who helped us.  My husband told him what had happened to me and he told my husband a wonderful thing: “take care of his wife while I´m building your house. Maybe after a half a year when you know how it really looks like and what the prognosis is like, we will tell one another if you keep the house or you sell it.”

It was actually a miracle in this situation, my husband was bearing my illness worse than me. He stopped talking, he was losing his weight and I knew, he was almost ruined. I had to sit down with him and discussed everything. I´m not a psychologist but I was successful in calming my husband down.

I was 42 years old and I did not want to die. One son was a university student, the other one graduating soon from secondary school.  My dream was already fulfilled, we both did so much for that. My family also supported me and made me feel a master of my house.

Simply and shortly – six months of chemotherapy, followed by autologous transplantation –  we made a decision that we were going to start building. Today, two and a half years after the transplant I´m sitting in the study room of our new house and I do not like to look back to that period. We have lived here for more than a year. It is wonderful. Here, every morning I go walking with our old dog to see horses. They have an area behind our house. I look at forests, meadows, sheepsand I´m, happy.  The myeloma will not get me, you can bet on it – I want to enjoy this for a long long time.

– Iveta

Categories
Myeloma Stories

Doug K. – Lake Stevens, WA

My mom was diagnosed with Multiple Myeloma in 1995. She and my dad told my brother, sister, and myself what the doctors had found and that they only gave her up to 3 years to live.

My mom was a very strong woman. With all her treatments (chemo, radiation, stemcell transplant) she fought and fought. We got the greatest news ever her cancer had gone into remission.

January of 2014 my mother was not feeling well, my dad took her to the hospital where they ran many tests. The news none of us wanted to hear her cancer was back and very aggressive. My mom passed away 4 days after that doctors visit.

Due to the great doctors at Swedish Hospital Seattle and their abilities we were able to spend 18 more years with our mom. Not to mention the great strength and willpower my mother had. To those who are experiencing this, or have lost a loved one to Myeloma, my prayers and most heartfelt thoughts are with you.

– Doug

Categories
Myeloma Stories

Robert R. – Roseville, CA

Hi everyone.

I went in for a routine physical in December 2007. My MD picked up some problems with my blood work (low counts and protein). Had a second set of blood tests and was referred to an oncologist. Took two months to see the oncologist! Saw the oncologist in March 2008 and more tests were ordered including a bone marrow biopsy. Came back in April and was given diaognoses of Smoldering Multiple Myeloma.

My wife and I didn’t feel confident with our oncologist so we asked for a second opinion. We were referred to UCSF and were given a physical, blood tests, and asked to get a PET scan. Previously I had had a body X-ray and it had not shown any lesions. The PET scan did show 5 lesions in my bones so I was in Stage 2 Multiple Myeloma.

I have been treated by UCSF since 2008 and had a transplant in 2009. I am still being treated by UCSF. I think my story points out the need for a SECOND OPINION with a MM specialist whenever possible!

– Robert

Categories
Myeloma Stories

Beth A. – Seattle, WA

In 2005 I was diagnosed with MM. I did a lot of research after my bone marrow biopsy and discovered I was smoldering and opted for no treatment.

The first oncologist I saw recommended Zometa and Prednisone and I declined this treatment. I shopped for Doctors and ended up with a Myeloma Specialist at the SCCA who agreed to just watch and wait.

The IMF Seminar in Portland in 2005 also introduced me to Dr. Robert Kyle, who is a smoldering MM expert. I have been taking 2,000 to 8,000 mg of Curcumin per day (medicinal grade); as well as AHCC, MSM; and other vitamins (D3, B vitamins, C, A, E, multi, calcium, magnesium, zinc). I never take aspirin. I try to eat organic, as possible; and use a Kefir, beet, apple, carrot smoothie in the morning with ground flaxseed and flaxseed oil. Organic non GMO oatmeal is also nice as well as prunes. Wild salmon is great as well as kale and chard.

I will be 69 years this year and hope to continue smoldering. I try to keep my body alkaline. I go in for blood exam twice a year and May is my next — hoping I am still smoldering !!  I also neglected to mention that I presented with Neutropenia low white blood cells (neutrophils). I had been feeling tired and I kept switching Primary Care Physicians until I found a Doctor who saw this drop and suggested a Bone Marrow Biopsy.

– Beth A.

Categories
Myeloma Stories

Anna K. – Orlando, FL

December 2013, our family was gathered in the living room when my dad gave my brother and I the shocking news that he was diagnosed with Multiple Myeloma. Needless to say it was not the type of Christmas we were expecting.

What was unique about my dad’s situation is he didn’t have any of the symptoms related to MM, no bone problems, no kidney problems, they caught it when he went in for a check up due to a sinus problem he couldn’t seem to kick.

The next 6 months were a series of doctor’s appointments, chemotherapy treatments and then in the Summer of June 2014 he had his first Stem Cell Transplant.

He went back to the doctor for testing in October 2014 to find out of the Stem Cell Transplant had worked and if the cancer was in remission. He was getting good reports all around until 2 of the 5 tests came back with unsatisfactory results. We had to start the process again, more chemotherapy, new drugs, and another stem cell transplant coming up this summer.

It’s been a hard road to walk.  Thankfully we have a solid support system. This is something no one should have to endure alone. We have to take it one day at a time that’s all we can do.

–  Anna

Categories
Myeloma Stories

Bunny Z. – Pawley’s Island, SC

I was feeling tired and after a drastic drop in my hemoglobin, I went to see an oncologist /hematologist who did a bone marrow biopsy. That was in June of 2014. The diagnosis was Multiple Myeloma and I began chemo treatment immediately.

In August I had a consultation at the Myeloma Institute at UAMS in Little Rock, AR. Within two weeks we were back for aggressive chemo and a stem cell transplant. I was discharged on October 25th and have been on maintenance doses of dexamethasone, Zometa,and Velcade and am in remission today.

Other than wearing wigs until my hair grows back I feel absolutely normal! Resumed my real estate career and after a few months of physical therapy, felt strong again. Don’t be discouraged or lose hope, great strides have been made in research for Multiple Myeloma; the cure may appear any day but we can be comfortable until that happens.

– Bunny

Categories
Myeloma Stories

Paul G. – Darien, GA

I was diagnosed with multiple myeloma in 2007 and received a stem cell transplant at The Winship Cancer Center later that year.

The story of cancer is seldom about the patient. The story is about providers, researchers and families; particularly families. It can be confusing and frightening. It is difficult enough for adults, but it is much more difficult for children. My story is best told by one of my grandchildren as a school project for Veteran’s Day.

Jackson Kiser Veteran’s Day Essay October 15, 2013
Mello/5th Grade

I have several members of my family who have served in the military. I choose to write this essay about my grandfather, Paul Griffin. We call him Ahpa.

He served in the Navy from 1963 until 1990. During this 27 year career, he served in Vietnam. He has lived in many different places, such as Florida, Texas and Hawaii.

While in the Navy, my Ahpa learned some valuable lessons. He developed skills that he still uses today, including discipline, bravery and strength. Unfortunately, he is fighting a different battle today: Cancer.

Throughout his struggle, my Ahpa has taught me the importance of these principles. I am so proud of him. When he feels sick, he is still there to help me with my math homework. Even when he is exhausted from the medicine, he still plays baseball with my brother Sam. And even though his body hurts, he takes my youngest brother, Griffin, to the pool to play for hours.

He is my hero!! If you ask him about his years in the military, he will tell you he feels honored to have been a member of the United States Navy. After a long career, he retired a Captain.