A positive attitude to survive myeloma

A positive attitude has always been one of my aspirations.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.

Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.

Positive affirmations

A tool used during my myeloma treatment and recovery has been positive affirmations. Something I have often used throughout my life. Success will come when you impress the subconscious with the conviction you are a success. This is done by making an affirmation which clicks.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.

Blood tests for myeloma

Blood tests are used to confirm diagnose of myeloma and to monitor the disease during treatment and plateau stage (remission).
I have requested that a copy of my results from med lab be mailed to me so I can prepare for my next appointment. It can be misleading to read my results in isolation so I look for trends over several readings. For long term history I have created a spreadsheet with all my results included.
In my case I was diagnosed June 1st 2001 with multiple myeloma stage III IgG Kappa.
The key indicators for me are:
Red blood cells.
Red cells contain haemoglobin and transport oxygen from the lungs to all parts of the body. Low haemoglobin will give me anaemia causing paleness, lack of energy, tiredness, shortness of breath, dizziness and fatigue.
I monitor haemoglobin; normal 130 to 175 gms/L. (01 June 2001 = 120) (24 Feb 2009 = 145)
White blood cells.
White blood cells are the soldiers that fight infection. If they drop below normal I will be at risk of infection. There are 5 main types of white blood cells. The 2 main ones I monitor are leucocytes and neutrophils. Leucocytes fight infections including chest, urinary, skin and produce antibodies. Neutrophils fight bacterial and fungal infections.
Leucocytes; normal 4.0 to 11.0 (01 June 2001 = 7.9 (24 Feb 2009 = 7.06)
Neutrophils; normal 2.2 to 7.5 (01 June 2001 = 6.64) (24 Feb 2009 = 5.31)
Platelets.
Platelets help to prevent and control bleeding. If platelets are too low my blood thins. This causes bruising and excessive or prolonged bleeding following minor cuts or injury. Platelets; normal 150 to 400 (01 June 2001 = 362) (24 Feb 2009 = 213)
Creatinine. (Renal, related to the kidney)
Creatinine is a waste product of muscle breakdown normally excreted by the kidneys. The level of Creatinine in the blood will be raised if the kidneys are not functioning properly. I drink 2 litres of fluid a day to keep my kidneys flushed,
Creatinine; normal 60 to 105 umol/L (01 June 2001 = 61) (24 Feb 2009 = 80)
Calcium.
Calcium reading tells me if my bones are being eaten by myeloma. When lytic lesions are being formed calcium is a by-product that can be detected in the blood.
Calcium; normal 2.10 to 2,60 mmol/L (24 Feb 2009 = 2.38)
Immunoglobulins.
Proteins produced by plasma cells, my indicator is IgG. A normal reading is between 7 to 16 g/L. When IgG rises into the 20’s I become concerned. When it reaches 35 myeloma has returned.
IgG; normal 7.0 to 16.0 g/L (01 June 2001 = 80) (24 Feb 2009 = 10.1)
Total protein; normal 66 to 84 g/L (01 June 2001 = 75) (24 feb 2009 = 76)
Total globulin; normal 22 to 38 g/L (01 June 2001 = 43) (24 Feb 2009 = 25)
Bence-Jones protein (BJP).
A protein found in the urine of many myeloma patients. BJP is a small molecule that can potentially damage my kidneys.
Casual total protein; normal 0 to 0.3 g/L (01 June 2001 = 0.4) (24 Feb 2009 = 0.04)
Casual Bence-Jones; (01 June 2001 = 0.3)(24 Feb 2009 = 0)

Glossary:
Anaemia. Deficiency of red blood cells which results in a reduced level of the oxygen carrying pigment haemoglobin in the blood.
Haemoglobin. The iron containing pigment in red cells, which carries oxygen around the body.
Lytic lesions. Holes in my bones caused by substances secreted by myeloma cells.
Neutrophils. The most common type of cell within the granulocyte group of white blood cells.

Team Sid, a way forward

As part of my way forward to myeloma survival I created a team, “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
“Team Sid” comprised myself of course, my wife Myra, family, GP, Haematologist, Hospital day stay staff, cancer society, Leukaemia and Blood, work, neighbours and others when needed. My number one team member was Myra who is a trained caregiver, I had the best. More about Myra and others in another posting.
Being the Boss and chief administrator of “Team Sid” I compiled a list of contacts; contact name, designation, address, phone and email.
Another list was a” how to/what if” list, how to do anything that arose without panic. How to arrange transport if I could not drive myself, public transport timetables. How to use the St John’s ambulance service in an emergency. How to use the hospital shuttle bus. What to do if my temperature rose. Who to contact if I fell ill at home, etc, etc.
One of regular my tasks was to maintain my appointment book up to date. Every appointment and meeting was entered then added to the kitchen calendar as backup. Another task was to maintain a daily diary of how I felt, medication, anything that could be of use at appointments. Initially I did not realise the significance of recording my test results. My doctor and Haematologist gave them to me verbally. Later I learnt from a support group member that I could have the results posted to me. Once that commenced I created a spread sheet to record results electronically.
There were times when I could not cope due to health and side effect issues. Myra had been briefed on the lists so stepped in to take over my role...
“Team Sid” members were all told that I was living with myeloma and would recover to good health again. I led by example with my positive attitude, negativity was not to be tolerated.
“I will get better”.
By creating “Team Sid” I took an active role in my recovery giving me a sense of control over my illness.
On reflection the main benefit of “Team Sid” was organisation. Having all my contact and what if information up to date and in one place. A system I still follow today.

Urine sample for myeloma, no worries

My first visit to the neighbourhood Med Lab for myeloma blood tests became a challenge.
When I was a little boy my Mum told me if I was going out I had to do three things before leaving the house. Put a clean handkerchief in my pocket, wear a clean pair of underwear and empty my bladder. Being the best behaved boy in our street, a very long street, and having always listened to my Mum I still do this today.
Armed with my blood test form, clean handkerchief in pocket, a clean pair of underwear on and empty bladder I drove to the Med Lab for the first time not really knowing what it was all about.
On arrival the nurse took my card then said” Mr Hider, you are required to give us a urine sample” and gave me the sample tube.
Looking bemused I said “What do I do with this?”
“Go to the toilet, you will find the instructions on the toilet wall.” She said.
Now, I have a self belief that I can do anything, learnt at a school in Hamilton, Maeroa Intermediate. “No worries” I said.
Off I went into the toilet to read the instructions and provide the sample.
Simple. Pass urine into the toilet. At mid-stream put some into the container provided. Fill the sample tube. Clean up. Hand the sample tube back to the nurse.
So I started the process……and waited……and waited……and waited. Nothing happened. This required drastic action, I shook it, jumped up and down……still nothing. Starting to panic I did the little boys trick, turned the basin taps on and waited……and waited……and waited. Again nothing happened.
Looking embarrassed I went back to the nurse to explain that I could not provide a urine sample. She gave me a stern look and a huge brown paper bag with a sample tube and container in and said “take this home, drink lots of water, try again then bring it back.”
It’s all Mum’s fault. That’s what happens when you listen to your mother.
On my next visit I was determined to be prepared so drank lots of water and did not leave home until I felt I was ready. Stopping off at the local shops for a newspaper I got delayed talking to a friend. By the time I arrived at the Med Lab I was busting for a wee. Getting out of the car and standing up I knew I was in trouble. Putting my hand in my pocket I manually manipulated my pressure relief valve to prevent an overflow.
When opening the Med Lab door my heart sank, oh no, standing room only putting me at the end of the queue. Sheepishly I approached the nurse and said” I need to pass a urine sample, NOW.”
She gave me a sample tube and very quickly my sample was back with her.
The moral of this story; don’t always do what your mother says.
Who said there’s no fun having cancer?

Myeloma support group

Being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
My first visit to my myeloma support group was a revelation to me. At first I thought I was the only person in my city with this rare disease. To enter a room to be with a group of others with the same disease became overwhelming.
My new myeloma friends were talking about symptoms, bone pain, conditions and health problems that I was experiencing. Heads were nodding with acknowledgement as I explained my symptoms. They all knew what I was talking about. I was accepted as one of them. I felt normal.
Leaving that first meeting I felt a calm satisfaction that I had found some good friends with the same disease and a support system. It suited my approach to my way forward and has been an important part of my survival.
My support group has given me companionship and knowledge. The guest speakers have been informative. Listening to others pass on their story has given me a better understanding that myeloma is not the same for everyone. We may have the same disease; it effects us in different ways.
That’s why I say “my illness, my body, my treatment”.
Our caregivers are not overlooked, where would we be without them. They are welcome to come along to participate and support each other.
A down side to my myeloma support group is we are all living with multiple myeloma, a disease that has no cure. It can be treated and progression slowed down. Eventually most of the group will die from its effects in some way or another. I can’t hide from that, its reality.
When the first of my multiple myeloma friends died I was devastated. How I coped and what I learnt will be in another posting.
I do acknowledge that support groups are not for everyone. We all have different personalities, a different approach to life and to survival. Freedom to make our own choice is a fundamental of a free society. My choice is yes, a support group is what I want.

My myeloma support group is run by the Leukaemia and Blood Foundation (NZ).
www.leukaemia.org.nz
Free phone 0800151015. (New Zealand)
More about them in a later posting.

Elizabeth

The first time I had chemotherapy as treatment for myeloma (June 2001) I was introduced to the “blue room”. There I had a selection of comfortable lazy boy chairs all colour blue, hence the name blue room.
Myra was with me for support. My nurse did the intravenous line and in went the chemotherapy and aredia for the first time accompanied by a little prayer on that significant occasion.
Sitting opposite me was an elderly lady receiving treatment, the only other patient in the room. Myra struck up a conversation like she always does and asked what her name and illness was.
“My name is Elizabeth and I am having my monthly infusion of aredia. I have multiple myeloma” she said. “I have been living with it for 14 years”.
Well, that was mind blowing. Here I was having never met another myeloma patient, thinking I was one of the few people to have this rare cancer, being told there is no cure, yet sitting opposite me was a lady with myeloma who has had it for 14 years!!!!!!
Elizabeth told us she went to the multiple myeloma support group where she received good support and companionship from patients with the same cancer. I had been told about the multiple myeloma support group by the cancer society and had intended to go to the next meeting.
This first meeting with Elizabeth confirmed to me my belief that I wanted to be a survivor.
Elizabeth became an inspiration to me and a very good friend.
Unfortunately Elizabeth passed away 3 years later after being a myeloma patient for 17 years.
In a corner of my heart there is a red rose for Elizabeth.

Chemotherapy: Treatment using anti-cancer drugs.
Aredia: A bisphosphonate, used to prevent or treat high calcium levels in cancer. Also useful in strengthening bones in multiple myeloma to prevent fractures and pain.

Needs assessor

At my first appointment with my Haematologist he arranged for a visit by a local district health board nurse to assess my needs.
My first need was a Lotto win. No luck there, they could not help with that.
The nurse came and assessed my condition, mobility, asked questions about how I was managing and explained what services they could offer.
We live in a two story town house. She asked about the stairs, they were no problems
for me as long as I took them slowly. The stairs were used as an important tool in my physical recovery. No obstacles inside or out were found.
Transport was not a big issue as I could still drive. Myra does not drive so options for when I could not drive were discussed. Myra was caring for me with showering, dressing and undressing, meals and doing the housework like only she can do.
After assessment it was decided that I would be provided with a shower chair and a bed lever and access to a physiotherapist for advice on exercise.
We have a large size shower with a slide shower complete with detachable head. The shower chair made it easier for me to shower and Myra to assist. Mobility and being unable to reach around my back or bend over were my problems.
Getting in and out of bed was a painful struggle. Myra had to assist me. The bed lever was a great help. With the base of the lever jammed between mattress and bed base it was very stable. Once I had sorted out a technique I felt more confident with it and did not need Myra’s help for that anymore.
Needs assessment NZ, a good practical service by caring people.

Decision made to be a myeloma survivor

At the conclusion of my second appointment with my haematologist (June 2001) I made a decision that I wanted to be a myeloma survivor.
My test results from the previous week had arrived proving that I had multiple myeloma. My haematologist explained what multiple myeloma was, my current diagnose, what treatment was available and what treatment options I had. A stem cell transplant in the future was mentioned though not discussed in depth. Examples of myeloma survival were discussed as was the progress of future treatment, hope was on the horizon
There were more urgent matters to consider, initial treatment. That was to be VAD (Vincristine, Adriamycin and Dexamethasone.)
After that appointment I felt more confident that I could fight my cancer. I could now see a way forward.
At home that evening I stood in front of a mirror looking straight into my eyes and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
This I repeated daily for the next two weeks and at regular intervals there after.
By doing that I admitted I had cancer, took ownership and started planning for my survival. My attitude became positive again. I would not tolerate any negativity from myself or others that would compromise my survival.
Even though I was on an emotional roller coaster I knew a way forward, the plan to survive had started.
A daily diary had been started from day one. A record of how I felt physically and emotionally, medication, thoughts, medical information and all my contacts. That proved invaluable allowing me to look back and see my progress and to recall any event.
I have always had the ability to focus on an issue, to plan and execute an end result and good powers of concentration. All of those attributes were going to be called upon for me to survive.
Positive affirmations became important to me. They were repeated like a mantra.

• I will be a survivor.
• Never give up, never never ever ever give up.
• I will stack the odds in my favour.
• Multiple myeloma go away, get out of my body.
• I can’t change the past but I can influence the future.
• Focus, focus, focus.
• My illness, my body, my treatment.

The foundation was being built for my way forward.

Glossary.
Haematologist: A doctor who specialises in the diagnose and treatment of diseases of the blood, bone marrow and immune system.

Test results at diagnose

Test results June 2001.
The simple interpretation was; Confirmed with multiple myeloma, compressed vertebra, 3 fractured ribs, bone lesions in skull, pelvis and legs, mildly anaemic, DVT in calf.

The medical version was; diagnosed with multiple myeloma stage III IgG Kappa;
Skeletal survey (x-rays) showed:
Multiple osteolytic lesions in skull, pelvis and both femurs.
Pathological compression fracture in vertebrae T8 and partial compression fracture in vertebrae T3. Pathological fracture of 3 ribs.

Blood tests showed:
Marked abnormalities in serum proteins.
Mild anaemia.
Marked elevation in erythrocyte sedimentation rate (ESR) suggestive of significant systemic pathology.
Haemoglobin (red cells) 122, low, (normal 130 – 175)
WBC (white cells) 8.8, ok, (normal 4.0 – 11.0)
Neut seg (neutrophils) 6.25, ok, (normal 2.2 – 7.5)
Platelets 320, high, (normal 150 – 400)
Creatinine (kidney) 0.082, ok, (normal 0.06 to 0.12)
Calcium (bones) 2.36, ok, (normal 2.10 – 2.60) Thought this would have been higher.
Bence Jones protein 0.03 g/L, present, (normal 0)
IgG = 80 g/L, extreme, (normal 7 to 16 g/L)
ESR 74, extreme, (normal 1 – 20)
Beta 2 microglobulin 0.9 mg/L, ok.
Raised C reactive protein.

Bone marrow aspirate 12% plasma cells. (5% is normal)
Bone marrow trephine 10% plasma cells.
Swollen right calf that a subsequent ultrasound confirmed as a DVT (deep vein thrombosis).
Weight = 70kg (154 lb) had reduced 3kg (7 lb) over the previous 2 months.

Glossary:
Systemic pathology: a disease throughout the body.
ESR: Erythrocyte sedimentation rate. The ESR increases in diseases where antibodies are increased, such as multiple myeloma.