The following are some of the problems I faced and my approach. I hope they are of some help.
In June 2001 at 47 years old, married to Colleen and with two boys Matt 12yrs and Nick 10yrs, I was diagnosed with systemic amyloidosis with smoldering multiple myeloma. This occurred after a long and winding trail to diagnosis which started in November 2000.
My general health was good except for a poor exercise tolerance however a cardio echo test showed cardiac involvement with amyloid plus a CT scan showed large abdominal nodes along with my having noted inguinal nodes over the previous 12 months. A biopsy demonstrated replacement of normal nodal tissue with amyloid. This was followed with a bone marrow biopsy which confirmed systemic amyloidosis along with early stage myeloma.
The recommendation of my haematologist was to commence immediately with four cycles of VAD chemotherapy followed by an autologous transplant.
Pre transplant treatment
Part of the VAD cycle also included using Dexamethazone in the cycle. One problem I had was with my reaction to the dexamethazone (a steroid). This created real mood swings. I would snap & growl at my family on very small issues. All this did was create additional stress for the whole family. Realising the problem I was creating I resolved that instead of exploding I would walk around the outside of my house several times to settle down. Additionally the dexamethazone hyped me up so that I didnâ€™t need / couldnâ€™t sleep, the result being when each cycle was finished I then entered into a period where I was very tired. Right from the start Colleen was always involved in any discussion with doctors. This was essential for me as it was another pair of ears listening to what they said. We would discuss the meeting afterwards and as treatment progressed I noticed myself missing parts as I was unable to concentrate with my mind wandering.
During this period I also visited a sports psychologist to develop relaxation and positive thinking techniques.
Not much fun. It took 16 days for my stem cells to graft. During this period I frequented the toilet lots, both nausea & dysentery and picked up pneumonia. Colleen spent many days & nights by my side. Her support gave me great comfort mentally plus her assistance to the toilet & back every 10-15 min (thatâ€™s what it seemed like). Additionally she was watching and talking with doctors and nurse on the medication I was being given. When I developed a rash all over my body she made the suggestion that instead of just being a heat rash I might be allergic to a specific drug. She was right. Due to getting pneumonia for many days I had extremely high temperatures and also causing my heart to race. Iâ€™m sure the relaxation techniques I had developed assisted, as I would imagine myself running along the wharf and jumping into an ice cold river then floating downstream.
She was also right to growl at me and tell me to get my act together when I was really down and my sons were about to visit before heading off to a friends place in Napier who was looking after them for a weekFinally one month later I left hospital 16kg lighter. I weighed 69kg instead of my normal 85kg. With the lost weight my gums had shrunk exposing nerves and for the next few months would cause pain whenever eating anything with sugar
My first day home: after 5-6 steps to the shower and a quick wash plus another few steps back to the bed, I lay there totally exhausted.Day two: on getting to the bathroom I took a look at myself in the full length mirror. Absolutely shocked at my appearance this skeleton of a person looked back with folds of skin instead of an ass and skin hanging loosely everywhere. I turned the mirror around & never looked again for probably five or six months. I had never considered myself a vain person (I was wrong).
If I had one criticism of my treatment by the NZ health system the support thru the recovery process is where it failed. One month after returning home I decided that I desperately needed help to regain strength.Â After numerous visits to various gyms I found one that had a personal trainer that I felt comfortable with. Â This became a turning point for me and to this day I still exercise with this trainer. From then on there I started to achieve small goals weekly. I walked further daily, played 9 holes golf, started working and continued to gain strength.
How long did it take me recover? It wasnâ€™t until 3 years later that I didnâ€™t need to rest during the day. I visited a clinical psychologist some 18 months after treatment and found her support & recommendations of great help. One key aspect was acknowledging what Iâ€™d been thru & to listen to my body. If I needed rest during the day go & have a sleep for an hour then go back to work.
The ability to multitask disappeared. I found it was necessary for me to concentrate on one task at a time although this has also improved lots.
Bottom line time helps heal both mentally & physically.
My haematologist and staff at Auckland Hospital were fantastic as were family & friends who all helped and especially my wife Colleen whose support was vital to my recovery.
One thing I do know is you will never be the person you were. Your priorities in life change dramatically. I believe you become a better person.
Every day is a GEM (some days are just better gems than others)