To reach my haematology day stay appointment at Auckland hospital I went up a lift, out into a lobby then turned right into a long corridor about 50 meters long (USA 46 yards). When walking that corridor prior to an appointment it was natural to be apprehensive. The corridor was long, giving one time to ponder.
After the second month I was responding well to treatment, test results were changing for the better, my way forward was working. That gave me a positive feeling when leaving the appointment.
After successful results the long walk back down the corridor was used to celebrate success. I would glance at Myra; my face would break into a big smile, with my arms pumping into the air I would say “yes, yes, yes”. A couple of times after my bones had mended I jumped up to click my heals.
After the second month that corridor had more good memories for me than bad.
A couple of years later during my plateau stage the day stay was integrated into a new building, the long corridor was no more.
The corridor remains as one of my early myeloma memories.
Monday, January 25, 2010
Friday, January 22, 2010
Coping with death of a myeloma friend
Three months after my first stem cell transplant (2001) I experienced the first of my myeloma friends dying, death from myeloma.
Myeloma is a cancer which has no cure. At that time in New Zealand prognosis was 3 years, possibly up to 5 years with an ASCT, standard treatment was chemotherapy, thalidomide had not been approved. Death from myeloma was a reality.
Not long after diagnose I went through the process of confronting death. For me to move forward death could not be avoided; there was to be no denial.
Link: Confronting death from myeloma.
When I heard that “J” had died from the consequences of myeloma I was devastated, very distraught. “J” was a mentor to me, helping me from our first meeting at our myeloma support group with coping skills, myeloma, and transplant advice. In 1995 he had been ASCT patient No 4 in New Zealand, a myeloma and ASCT pioneer.
During the previous 3 months I had been very much focussed on me, my ASCT preparation, transplant and recovery. This left me with little time for anything else; I had forgotten that people die of myeloma.
The death of “J” jolted me back to reality.
Unable to cope adequately I approached the Cancer Society of NZ for counselling, a service I had used before not long after diagnose. My counsellor listened to me explain my problem, we discussed the situation then I was introduced to a range of coping skills. It was up to me to decide what would suit me.
From that counselling I have devised a routine that I use when a myeloma friend dies.
Myeloma can be such a selective and personal disease affecting us all differently.
One of my original sayings is repeated: “My illness, my body, my medication.” My myeloma friend has died, not me. My battle continues.
I sit alone and reminisce about my myeloma friend, their illness, the good times, the bad times, what they meant to me and the times we shared. At the conclusion of that I say the first of my farewells.
Next I ask Myra to sit with me, she usually knows the person. We talk together then say goodbye to our friend ending with a prayer.
The final step is to fill in a bereavement card and include a small note to the family. Only when I feel I have fully dealt with the death do I seal and post the card. That is the final farewell.
My myeloma friends mean a lot to me, they are my lifeline. In a corner of my heart I place a red rose for each one who has passed on. Rest in peace my myeloma friends.
John 5:24 “I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life.”
Myeloma is a cancer which has no cure. At that time in New Zealand prognosis was 3 years, possibly up to 5 years with an ASCT, standard treatment was chemotherapy, thalidomide had not been approved. Death from myeloma was a reality.
Not long after diagnose I went through the process of confronting death. For me to move forward death could not be avoided; there was to be no denial.
Link: Confronting death from myeloma.
When I heard that “J” had died from the consequences of myeloma I was devastated, very distraught. “J” was a mentor to me, helping me from our first meeting at our myeloma support group with coping skills, myeloma, and transplant advice. In 1995 he had been ASCT patient No 4 in New Zealand, a myeloma and ASCT pioneer.
During the previous 3 months I had been very much focussed on me, my ASCT preparation, transplant and recovery. This left me with little time for anything else; I had forgotten that people die of myeloma.
The death of “J” jolted me back to reality.
Unable to cope adequately I approached the Cancer Society of NZ for counselling, a service I had used before not long after diagnose. My counsellor listened to me explain my problem, we discussed the situation then I was introduced to a range of coping skills. It was up to me to decide what would suit me.
From that counselling I have devised a routine that I use when a myeloma friend dies.
Myeloma can be such a selective and personal disease affecting us all differently.
One of my original sayings is repeated: “My illness, my body, my medication.” My myeloma friend has died, not me. My battle continues.
I sit alone and reminisce about my myeloma friend, their illness, the good times, the bad times, what they meant to me and the times we shared. At the conclusion of that I say the first of my farewells.
Next I ask Myra to sit with me, she usually knows the person. We talk together then say goodbye to our friend ending with a prayer.
The final step is to fill in a bereavement card and include a small note to the family. Only when I feel I have fully dealt with the death do I seal and post the card. That is the final farewell.
My myeloma friends mean a lot to me, they are my lifeline. In a corner of my heart I place a red rose for each one who has passed on. Rest in peace my myeloma friends.
John 5:24 “I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life.”
Tuesday, January 19, 2010
Soft tissue plasmacytoma
I was diagnosed with myeloma stage III IgG Kappa in 2001.
Link to Summary June 2001 to January 2009.
Last year May 2009 my IgG levels rose and I developed 2 soft tissue plasmacytoma in the skin on my skull. No pain, tenderness, headaches or discomfort just 2 lumps. A fine needle biopsy confirmed what they were.
Treatment was 4 months of cyclophosphamide and dexamethasone. This reduced the IgG back into the normal range and the two soft tissue plasmacytoma disappeared.
Unfortunately in November 2009 the two soft tissue plasmacytoma reappeared and a decision was made to treat them with radiation. IgG has risen slightly but staying within the normal range.
There will be 5 days of radiation started on Monday, a shallow blast allowing my brain cells to remain undisturbed. I will likely loose my hair permanently where the radiation is applied. Unlike chemotherapy where the hair grows back radiation kills the hair follicles.
Last week I had my two soft tissue plasmacytoma measured to create a template for a lead cover with a hole in it to be placed over my skull during radiation.
One soft tissue plasmacytoma is at the front of my skull, slightly to the left but still within the hairline measuring 5cm (2 inches) diameter by 2cm (3/4 inch) high.
The second is at the rear of my crown on the right hand side measuring 7cm by 5 cm (2-3/4 inches by 2 inches) and 1cm (3/8 inch) high.
There are two worrying aspects of my soft tissue plasmacytoma.
First is cosmetic. I am a 62 year old male with a reasonable crop of hair, receding a little and minor thinning on top. To suddenly have two large bald spots in 2 random places is a blow to my pride. Time for a deep breath, short hair cut, find new headwear other than a cap and move on.
Second is why is this suddenly happening to me and why on my skull? Is this a reaction to the accumulative effect of my treatment over the years? Will there be any more after these have been destroyed? Questions for my haematologist.
It has been difficult to find information on soft tissue plasmacytoma in the skull skin on the internet, the best I have found is here: Link to plasmacytoma overview.
Some notes from that link are:
Solitary plasmactomas can be divided into 2 groups according to location.
Plasmacytoma of the skeletal system (SBP) i.e. in the bones.
Extramedullary plasmacytoma (EMP) i.e. in the tissues outside of the bones.
Although extramedullary plasmacytoma (EMP) can occur in any site, 80-90% of tumours develop in the head and neck area, especially in the aero digestive tract.
Three fourths of extramedullary plasmacytoma (EMP) cases involve males.
Based on the documented radiation sensitivity of plasma cell tumours, the accepted treatment is radiotherapy.
Link to Summary June 2001 to January 2009.
Last year May 2009 my IgG levels rose and I developed 2 soft tissue plasmacytoma in the skin on my skull. No pain, tenderness, headaches or discomfort just 2 lumps. A fine needle biopsy confirmed what they were.
Treatment was 4 months of cyclophosphamide and dexamethasone. This reduced the IgG back into the normal range and the two soft tissue plasmacytoma disappeared.
Unfortunately in November 2009 the two soft tissue plasmacytoma reappeared and a decision was made to treat them with radiation. IgG has risen slightly but staying within the normal range.
There will be 5 days of radiation started on Monday, a shallow blast allowing my brain cells to remain undisturbed. I will likely loose my hair permanently where the radiation is applied. Unlike chemotherapy where the hair grows back radiation kills the hair follicles.
Last week I had my two soft tissue plasmacytoma measured to create a template for a lead cover with a hole in it to be placed over my skull during radiation.
One soft tissue plasmacytoma is at the front of my skull, slightly to the left but still within the hairline measuring 5cm (2 inches) diameter by 2cm (3/4 inch) high.
The second is at the rear of my crown on the right hand side measuring 7cm by 5 cm (2-3/4 inches by 2 inches) and 1cm (3/8 inch) high.
There are two worrying aspects of my soft tissue plasmacytoma.
First is cosmetic. I am a 62 year old male with a reasonable crop of hair, receding a little and minor thinning on top. To suddenly have two large bald spots in 2 random places is a blow to my pride. Time for a deep breath, short hair cut, find new headwear other than a cap and move on.
Second is why is this suddenly happening to me and why on my skull? Is this a reaction to the accumulative effect of my treatment over the years? Will there be any more after these have been destroyed? Questions for my haematologist.
It has been difficult to find information on soft tissue plasmacytoma in the skull skin on the internet, the best I have found is here: Link to plasmacytoma overview.
Some notes from that link are:
Solitary plasmactomas can be divided into 2 groups according to location.
Plasmacytoma of the skeletal system (SBP) i.e. in the bones.
Extramedullary plasmacytoma (EMP) i.e. in the tissues outside of the bones.
Although extramedullary plasmacytoma (EMP) can occur in any site, 80-90% of tumours develop in the head and neck area, especially in the aero digestive tract.
Three fourths of extramedullary plasmacytoma (EMP) cases involve males.
Based on the documented radiation sensitivity of plasma cell tumours, the accepted treatment is radiotherapy.
Saturday, January 16, 2010
My veins
A consequence of a blood cancer like myeloma is many blood tests are required.
My veins are not too good, small and hard too find. This creates problems for the vampires, oops nurses, who need to extract my blood.
I go to the local Labtest, previously Med Lab, to extract my blood for tests and have found it helps me to have the same nurse each time as she becomes familiar with my veins and I become confident with her and relaxed.
On appointment day if it’s a cold day I wear gloves to keep my hands warm. Advice from the nurses to help me has included keep the fluids up to avoid dehydration, drink a glass of water on arrival, try a heated wheat bag or hot water bottle on the arms and wear clothes that keep me warm.
To increase the blood flow I keep my veins pumped up by doing hand, finger and arm exercise, mainly flexing. Some people must think I have been let out of the cupboard for the morning as there have been a few strange looks in the waiting room while doing that.
Holding my tongue to the left and closing one eye does not help at all.
When I go to haematology day stay for my monthly Aredia (bisphosphonate) I require an intravenous line in the top of my hand. The visit starts with a drink of water then a soaking of my arms in a large tub of hot water. Again I usually get the same nurse.
Speaking to other patients, apparently bad veins are not uncommon. A young lady in her late teens once told me she some times has to have the blood taken from a vein in her ankle!
I have never had any problems with fear of needles, I have very little fear. It doesn’t matter if I look at the needle going in or look away. I do like to keep my arm or hand relaxed, that does make a difference to me.
Bang, did you here that, some one has fainted reading this. As I wrote “In Helpful hints for myeloma survival” needles come with the myeloma package, overcome the fear.
My veins are not too good, small and hard too find. This creates problems for the vampires, oops nurses, who need to extract my blood.
I go to the local Labtest, previously Med Lab, to extract my blood for tests and have found it helps me to have the same nurse each time as she becomes familiar with my veins and I become confident with her and relaxed.
On appointment day if it’s a cold day I wear gloves to keep my hands warm. Advice from the nurses to help me has included keep the fluids up to avoid dehydration, drink a glass of water on arrival, try a heated wheat bag or hot water bottle on the arms and wear clothes that keep me warm.
To increase the blood flow I keep my veins pumped up by doing hand, finger and arm exercise, mainly flexing. Some people must think I have been let out of the cupboard for the morning as there have been a few strange looks in the waiting room while doing that.
Holding my tongue to the left and closing one eye does not help at all.
When I go to haematology day stay for my monthly Aredia (bisphosphonate) I require an intravenous line in the top of my hand. The visit starts with a drink of water then a soaking of my arms in a large tub of hot water. Again I usually get the same nurse.
Speaking to other patients, apparently bad veins are not uncommon. A young lady in her late teens once told me she some times has to have the blood taken from a vein in her ankle!
I have never had any problems with fear of needles, I have very little fear. It doesn’t matter if I look at the needle going in or look away. I do like to keep my arm or hand relaxed, that does make a difference to me.
Bang, did you here that, some one has fainted reading this. As I wrote “In Helpful hints for myeloma survival” needles come with the myeloma package, overcome the fear.
Wednesday, January 13, 2010
Chemo brain
Chemo brain, it's real. In 2001 I had VAD treatment for myeloma followed by an autologous stem cell transplant (ASCT). The treatment and ASCT included chemotherapy drugs Vincristine, Adriamycin, Melphalan and cyclophosphamide. After the ASCT I started noticing memory issues.
There was an intermittent short term memory loss.
At times a short attention span.
I had trouble remembering people’s names.
Difficulty in finishing sentences, some words were not there, or difficulty finding the right word.
Sometimes I could not remember the detail of conversations.
At work technical terms that I used infrequently were hard to recall.
I would plan to do things later or the next day and then forget about it.
I had to resort to writing notes for myself, make lists and have had to get help from whatshername, the lady I am married to. She gives me a word to help finish a sentence, a reminder to use a list or help in recalling a name.
After the first few months of chemo brain whatshername said my selective memory matched my selective hearing!!!
Fortunately it has improved over time though has not gone away completely. Lists and notes are essential.
I have spoken to other chemo patients and many have had a similar experience.
After my second ASCT in 2008 chemo brain returned and remained for 6 months when there began a gradual improvement. Twelve months after ASCT2 I was back to a pre transplant condition, chemo brain still there but more manageable.
The major myeloma and cancer web sites are now acknowledging chemo brain and are a good resource for background information.
During ASCT recovery I went to the local shopping mall by myself, walked around and had some good time out. Got back into the car and found my wife’s Foodtown card in my pocket. Then realised I left the shopping list at home but recalled there were 4 items on the list. So I walked the isles but nothing clicked. Oh dear, back home for the list. Another lesson learnt.
There was an intermittent short term memory loss.
At times a short attention span.
I had trouble remembering people’s names.
Difficulty in finishing sentences, some words were not there, or difficulty finding the right word.
Sometimes I could not remember the detail of conversations.
At work technical terms that I used infrequently were hard to recall.
I would plan to do things later or the next day and then forget about it.
I had to resort to writing notes for myself, make lists and have had to get help from whatshername, the lady I am married to. She gives me a word to help finish a sentence, a reminder to use a list or help in recalling a name.
After the first few months of chemo brain whatshername said my selective memory matched my selective hearing!!!
Fortunately it has improved over time though has not gone away completely. Lists and notes are essential.
I have spoken to other chemo patients and many have had a similar experience.
After my second ASCT in 2008 chemo brain returned and remained for 6 months when there began a gradual improvement. Twelve months after ASCT2 I was back to a pre transplant condition, chemo brain still there but more manageable.
The major myeloma and cancer web sites are now acknowledging chemo brain and are a good resource for background information.
During ASCT recovery I went to the local shopping mall by myself, walked around and had some good time out. Got back into the car and found my wife’s Foodtown card in my pocket. Then realised I left the shopping list at home but recalled there were 4 items on the list. So I walked the isles but nothing clicked. Oh dear, back home for the list. Another lesson learnt.
Sunday, January 10, 2010
The golden archway
During my first autologous stem cell transplant I used a visualisation scenario.
Link: Myeloma transplant – visualisation.
The final part of that visualisation scenario was to reach the Golden Archway which represented my post transplant 100 day test results. To pass through the Golden Archway into a future I needed to have successful results.
This I achieved, my IgG was 9.6 g/l (960 mg/dl). At diagnose my IgG was 80g/l (8000 mg/l), pre transplant it was 23.1 g/l (2310 mg/dl). Success, I walked through the Golden Archway.
My future was unknown, how long would I be in the plateau stage, everyone wants to know the answer to that. There is no answer until the plateau stage finishes, then you will know.
My intention was to enjoy every moment, take advantage of my second chance, live for the “now’.
I needed an income so returned to work, initially part time, progressively moving to full time negotiating no more long hours.
Myra and I had had wanted to travel after retirement. After my haematologist said “travel, do it sooner than later” those travel plans were bought forward though somewhat reduced by my health and immune restrictions and income.
Walking through the Golden Archway created a new beginning.
Link: Myeloma transplant – visualisation.
The final part of that visualisation scenario was to reach the Golden Archway which represented my post transplant 100 day test results. To pass through the Golden Archway into a future I needed to have successful results.
This I achieved, my IgG was 9.6 g/l (960 mg/dl). At diagnose my IgG was 80g/l (8000 mg/l), pre transplant it was 23.1 g/l (2310 mg/dl). Success, I walked through the Golden Archway.
My future was unknown, how long would I be in the plateau stage, everyone wants to know the answer to that. There is no answer until the plateau stage finishes, then you will know.
My intention was to enjoy every moment, take advantage of my second chance, live for the “now’.
I needed an income so returned to work, initially part time, progressively moving to full time negotiating no more long hours.
Myra and I had had wanted to travel after retirement. After my haematologist said “travel, do it sooner than later” those travel plans were bought forward though somewhat reduced by my health and immune restrictions and income.
Walking through the Golden Archway created a new beginning.
Thursday, January 7, 2010
Helpful hints for myeloma survival.
Here are some helpful hints for myeloma survival that I have learnt or been given by myeloma friends.
Take ownership. It’s your illness no one else’s.
Denial, get over it.
Anger; be angry, deal with it, move on.
Create a knowledge base for myeloma.
Don’t listen to Aunty Mary stories, yours is unique.
If some one cannot say the word cancer out loud they are not on your side, tell them to go away.
Join a myeloma support group for friendship and knowledge.
Help is a phone call away, write down your important contact numbers.
When the day is dark, light a candle.
Some days are surrounded by monsters, there is no way in, there is no way out.
Learn how to say NO!
Learn how to GLARE!
Learn how to say GO AWAY! (Use your own words here)
Learn how to say THANK YOU!
Learn how to SMILE!
Treatment:
Go to appointments prepared.
Be knowledgeable, find out. Leave appointments with results and knowledge.
For pills keep a medication chart or blister pack.
Side effects will happen, be prepared.
Needles come with the myeloma package, overcome the fear.
Day stay / treatment day: You will want to pee. Practice going to the toilet with the IV lines attached before you need to. Practice perfection.
Listen to your body, it’s yours, you know it well. When tired: sleep. When hungry: eat. When thirsty: drink. When you want to go to the toilet: go.
If you want to help me, spend a day in my body, with my pain, with my treatment, with my side effects, with my head space.
Say goodbye to mother ship when the treatment is over, move on.
Positives:
Celebrate success.
Practice positive visualisation.
Create some positive sayings that have meaning to you. Use the words “I” and “will”.
My treatment is working, I am healing, I will get better.
Worrying does not empty tomorrow of its troubles, it empties today of its strengths.
Take time off from being sick, have some fun.
Monday, January 4, 2010
Part 3 Plateau stage commencement
My retrospective myeloma blog continues.
Part 1 “The beginning” covering initial diagnose and treatment was completed July 2009: Link to summary of part 1 the beginning.
Part 2 ASCT was completed December 2009: Link to summary of part 2 ASCT for myeloma.
I now start Part 3; the first plateau stage.
Results from my 100 day post ASCT were all good, IgG had reduced to 10.3g/l (1030mg/dl) from 80g/L (8000mg/dl) at diagnose and 31g/L 3100mg/dl) prior to ASCT.
My health was good, I had made an excellent recovery, my plateau stage had commenced.
This continued relatively uneventful until September 2006 when over a short period of time a plasmacytoma grew in my left humerus and shattered the bone.
IgG levels were still down and it wasn’t until the end of 2007 that they started to increase. My relapse had begun.
What happened after that will be in Part 4 “the relapse”.
The word remission is now frequently used in relation to successful myeloma treatments. When I was first diagnosed the term remission was not used as it was considered the myeloma will return. More about my views on that in a future posting.
Part 1 “The beginning” covering initial diagnose and treatment was completed July 2009: Link to summary of part 1 the beginning.
Part 2 ASCT was completed December 2009: Link to summary of part 2 ASCT for myeloma.
I now start Part 3; the first plateau stage.
Results from my 100 day post ASCT were all good, IgG had reduced to 10.3g/l (1030mg/dl) from 80g/L (8000mg/dl) at diagnose and 31g/L 3100mg/dl) prior to ASCT.
My health was good, I had made an excellent recovery, my plateau stage had commenced.
This continued relatively uneventful until September 2006 when over a short period of time a plasmacytoma grew in my left humerus and shattered the bone.
IgG levels were still down and it wasn’t until the end of 2007 that they started to increase. My relapse had begun.
What happened after that will be in Part 4 “the relapse”.
The word remission is now frequently used in relation to successful myeloma treatments. When I was first diagnosed the term remission was not used as it was considered the myeloma will return. More about my views on that in a future posting.
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