Tag: Caregiver

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Myeloma Stories

Elizabeth L. – Hays, Kansas

My husband Scotty and I got our blood tested on a yearly basis, I kept them and compare the results from year to year . I noticed that Scotty’s red-white cells and platelets were all changing and that he would get colds frequently and I wouldn’t and that he would get diarrhea easily if we are out! I questioned our doctors and they said he was in great shape ( he worked out all the time).

I finally insisted that he be sent to an oncologist. I gave her 10 years of Scotty’s blood tests and she said that she believed MGUS started 5 years prior. Bone marrow proved the MM and we went to Little Rock ACRC. Caught it in smoldering stage!

My husbands wonderful attitude kept him going for 12 years and passed June 30, 2013 at 74 years young. Listen to your gut and find a doctor that will listen to you. I am not a nurse but a wife that knew her husband of 49 years and did everything I could to make his life enjoyable.

– Elizabeth

Categories
Myeloma Stories

Brian R. – Melbourne, Australia

I will always remember that night in late October in 1996.

My wife Roslyn had been going to a string of doctors complaining of rib pains for nearly 15 months and had just about every test possible. The doctors were acting as if she was imagining the pain, but I knew it was real as we could be out having a casual walk and her hand would go across her chest. We went back to this physician we knew and Ros trusted and explained that this pain was real, not imagined. He then decided to do another set of blood tests and some x-rays. On the day Ros was having the x-rays the doctor rang me to tell Ros that he had changed her chest x-rays to a full skeletal survey and that he would see us that night. He then told us that the Calcium reading had increased and that she was to see a haematologist to get confirmation whether she had hyper-parathyroidism or myeloma.

At this stage I was working as a retail pharmacist full time and decided that there was no way I could keep on working and become a carer. I admit I was a chauvinist, I used to come home from work and dinner was on the table, dirty clothes thrown in the hamper magically appeared washed, ironed and back in my wardrobe. Well this all changed. Ros went into a very black place for a couple of years while she went through chemo, a stem cell transplant and then monthly Aredia and then Zometa for about 10 years. As everyone knows, this resulted in monthly visits to the hospital and we did not just select the nearest Hospital but one on the other side of city, usually a 45 minute trip then to find parking.

During the early time I had contacted the Cancer Council of Victoria looking for a Myeloma support group only to be told that there was nothing like this. About the same time Robert Moran had done the same after his wife Glenys was also diagnosed with myeloma. The Support group co-ordinator at the Cancer Council, Pat Dobson, brought us together at a meeting and from this the Myeloma Foundation began.

Prior to Ros’ diagnosis we had always talked that I would retire and we would travel, but now Ros does not have the confidence to travel far from home, I can get her as far away as Cairns but this is also chasing the warmth especially during Melbourne’s winter. About eight years ago she gave me “permission” to travel by myself and initially my trips took me camping in the Kimberlies, up the centre of Australia and to the top of Cape York and Thursday Island. The following year I was due to go to Israel and 7 days before I was to leave she fell on our front steps and fractured her femur, the major bone in the thigh. Thanks to insurance she had surgery and then extensive rehab to learn how to walk properly again.

Ros is keen to live and enjoy her life now she has achieved her wish she made when she was diagnosed: to see both our children married and to have grandchildren. We now have six beautiful grandchildren who are the best medicine you can have. Helping with them, doing folk dancing upto four times a week and still working two days a week keeps Ros pretty busy.

As I am writing this I am remembering all sorts of things that happened along the way as this has been a real journey. We have learnt a lot about ourselves, our relationship and about our friends and so called friends. We have met a lot of fabulous new friends and we have grown through this process. We have different values now and often discuss how many of our friends have no idea of what Ros has been through or where she is at now. I could write a book about our experiences and the people we have met along the way.

Thankfully, Ros has not had any myeloma treatments since her transplant and though has a few other unrelated problems, is in pretty good health now but we still regularly visit her haematologist about every four or so months. Thinking back to 18 years ago there was very little in the way of treatments available and the prognosis was very poor. Now there are three major new products currently available and there are a number more being trialled and look like they will add to the arsenal of treatments available to our doctors.

I am now heading off to Scandinavia and Ireland next week with my sister. This is the fourth trip I have now done with her into different regions China, Cuba and Morocco. I am starting to get excited about this venture.

I know Ros will be fine as our daughter lives next door and I am on a promise to phone home every day. Thanks to Facetime, wifi and Iphones.

– Brian R.

Categories
Myeloma Stories

Viorica C. – Bucharest, Romania

I loved my husband. We lived together for 43 years and yet, at the age of 59, I was still in love with him. He was a handsome, athletic man who would run every morning for 2.5 mile before going to the office. It was hard to believe that such a sportsman would die at the age of 64, only 30 months after being diagnosed with multiple myeloma.

It was on Christmas’ Eve when we found out the dreadful news. Before going to the G.P. doctor we thought it was a cold because he was coughing intensely and was unusually pale. The doctor immediately channeled us to the hematologist who informed us that my husband has multiple myeloma. It was like a shock.

The biopsy of the bone marrow revealed Multiple Myeloma State III, with high level of proteins and Hg around 6-7. At that moment, it crossed through my mind that 6 month before the diagnosis, Mihai had a rash on his skin, big brownish spots on his legs and hands. We thought it was a dermatological problem and went to a private clinic dermatologist. After consultation, he decided Mihai had probably got an infection from our Dalmatian dog whose paws I use to clean in the bathtub. For the doctor, it did not matter when I told him that I disinfect the bathtub each time with good quality detergents. He maintained ” his professional verdict” and even got a bit upset because I dared to challenge him. He gave us some solution and indeed, after a while, the rush was gone.

I am still living with the sorrow that, may be, I should have asked for a second opinion at the time or simply asked for an appointment with a hematologist. ( I would not have made reference to this story if I had not read Sharon F’s story about she waking up one day with a rash on her body. Perhaps there is something to learn if more than one person talks about the same symptoms ).

For me, the next 30 month after my husband’s diagnosis, was the most tormenting in my life. The feeling were mixed up, love, compassion, sorrow and desire to do whatever it takes to help him. There were many time when I felt hopeless. There were times when I told him only parts of the truth and for that I still question myself, have I acted well or wrong. At the time, I was having a very demanding job as a senior manager. For me, the most important thing was to be with my husband for as long as possible but also, to a very high extent, to keep my position. There were times when I knew I was loosing control over my office performance. I will never forget one day when we went to the hospital to have a endoscopy of his lungs – in order to assess the spread of the malignant cells. As soon as we arrived there, I received a call about an office emergency and, against my will, I had to run to the office. After all, keeping my position meant better treatment, better medication – paid by my company medical insurance – access to treatment abroad. How to cope with this, as to be able to meet your medical and financial needs and your own emotions, your vows , your conscience. Then one day, after 30 months of experimenting Velcade, Lenalidomide, Thalidomide and a salvage treatment at the Wilhelmine Spital in Vienna, my husband’s life ended. I was 60 years old and my life was gone along with him.

– Viorica