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DAD'S STORY
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One
of the
reasons for writing this
is to
help make
CONCERNED people aware of his struggles on-line
where
they can
check for updates,
rather
than
relying on the traditional method of conversation,
which
because of
repetition and subject matter
has a means of
clouding the message.
Over the years I have come to realize from my situation that there are certain times when you just don't feel like talking about the current state of affairs, medically and can thus refer the caring individual to a source of information that they can look over at their own pace through the Internet. So now rather than having to re-live events too many times I give out my web page address, and the reality of my situation doesn't have to rear it's ugly head as often. So from now on I'll do the same thing for Dad through this page.
Dad's battle with prostate cancer has been harder on me than my battle with NHL cancer. Once again I have that helpless feeling of being on the outside looking in, but this time I have NO CONTROL. Others that I have talked to in similar situations have said the same thing:
" It's harder to
watch a
loved one
battle
than
to actually
go through the war yourself ".
This will not be a medical outlook on prostate cancer but rather a humanistic approach to the similarities of dealing with cancer and then an area for updates much like the format I use for my story, only this is much harder to put into words on the screen.
DADS STORY
(THROUGH
THE EYES OF A SON)
I remember the day when the call came telling me that Dad had prostate cancer. My first thoughts were regarding my mother who now was dealing with 2 loved one's facing an uncertain future. I was about 5 months into the recover regime from a Stem Cell Transplant and the whole family had just been through that and now this!
Anybody in this situation knows how fast things happen and there is little time to ponder decisions in this time of mass confusion. I found out the particulars of his disease and started searching the Internet for information regarding prostate cancer and his histology. What I found I didn't like.
Because Dad had waited so long to seek attention, he was already in an advanced stage of the disease. You would think my example would have made him better aware of his situation, but we all want it to be something else, thus the initial denial. Knowing Dad the way I do, he was probaby feeling that the family was going through enough and was being stubborn and strong for our sake. What scared me was that Dad's cancer had already spread to the bones.
I put together an information package on prostate cancer including questions to ask and made him aware of his situation. Dad has always been a level headed individual, so I decided to be up front and honest with him right from the start. In a situation where I had little influence I could at least do this much.
Dad had the treatment recommended by the specialists, undergoing surgery and put on female hormone pills. One of the side effects from the pills was sweats. Now he could relate to the difficult time Mom had with menopause. We also teased him about growing breasts but the last time I looked they were the same size. Having been through cancer it was easier for me to treat Dad as I always had.
That's so
important for family members
because
the
patient will get enough anxiety from others
who don't know
how to react to the situation.
Dad was back to work in no time, once again providing the example and strength for me to battle on. But that's nothing new, he's always done that. Dad has always worked in the Forest Industry, working his way up the ladder through hard work and dedication. Every summer as a youngster he had me working at a man's job, piling lumber all day, good inspiration to stay in school. Even when I stayed out all night partying (no sleep) he made sure I went to work and put in a hard day's work. One time he had me working with peace workers who got paid for the amount of lumber they piled. Because I was on an hourly rate of pay, I sure paid the price on that one!!
Childhood memories give a good indication of the type of man Dad is. As a five year old I remember his patience teaching me to swim at Champlain Park and earning that dollar to buy batteries for my flashlight. I still remember that glorious feeling swimming out and around him and planting my feet in a triumphant return to shore. I remember the backyard ball lessons and the much needed praise for good play. I remember his dedication to community sporting events so that there were organized leagues to play in. But most of all I remember leaving my childhood with a chorus of comments from friends about how cool my parents were. Many of these same friends still think their pretty cool after all of these years.
RETIRES
Initially things seemed to be working during w/w (wait and worry). Dad retired in March of 1998 at 65 but remained on in a consultant capacity still putting in half days. While at work he took a fall and banged himself up pretty good. During the recovery period he noticed additional pains in his back and legs. Additional tests revealed that the cancer was spreading.
This didn't
happen overnight. We had talks about the pain associated with the
cancer. How
it moves and changes in intensity thus presenting the doubt. Life has
enough bumps and bruises when you're not up to par and trying to
associate cancer pain from everyday pain is hard enough but I imagine
it is even harder
to detect when you're getting older and it is the body's natural
response
to age. Dad received local radiation to the troubled areas and
began the cycle that he is currently on.
NOT WORKING
This last year has been hell for Dad. Pain! Pain! Pain! I know where I get the fight from. Nothing seems to be working. The radiation treatment has less and less an effect and the cancer is spreading quicker, moving up the body. His left arm was so deteriorated that the doctors were forced to reconstruct before administering the radiation (more surgery). Dad came back from the Hospital having hospitalitist and I could see he had been taking it out on Mom. A quick reality check (Hey I've been there, you're home) brought him back down to earth.
Loved one's are often the victims of a patients wrath, try to understand.
Dad continues to fight. He tries to get out on good days and walk about. He doesn't drive any more, he got a scare. His vision was blurring to the point where one day while driving he questioned his judgment and put the keys away. Radiation treatment and pills have slowed the process . This happened quick enough because despite being warned about the condition of his eyesight, it scared me when I actually saw him. I think it was at this moment that I realized that we were really in danger of losing him because the cancer continues to spread and the effects are more noticeable.
Dad amazes me in retaining his ability to be organized and witty under these circumstances. He has ample supplies of pain patches and pills ready to use. He uses a schedule to keep track of what needs to be done, how often and when, and still tries to do as much as he can around the house to keep active despite the pain. He still tries to walk whenever he is up to it and really enjoys talking to people he hasn't seen in a long time. The reality of the situation is that Dad is buying time. He knows it, he told me, and I've tried to be as honest with him as I can.
The doctors
have basically done all they can and more. I've been truly impressed
with the professional nature of his treatment. Not being the patient
has provided a
different outlook to the medical environment and from my experiences I
have
nothing but praise for our system,
in this time of
cutbacks and restraint.
We continue the w/w and try to spend as much time as we can together. Having the Regional Cancer Center where I live is a blessing in that my parents have spent most of the last 6 months here. The neighbours like it because " Dad the foreman " has the yard looking better than ever. Dad has lost roughly 30 pounds in this time despite retaining a healthy appetite (Mom's a good cook). He's always been in good shape from the vigors of work and from his constant nature of doing something productive, which usually kept him busy from dusk till dawn. Since the cancer he hasn't been able to do much of that and his muscles have been deteriorating quickly (muscle to skin), contributing with the cancer for the weight loss.
I'm lucky! I've been blessed to have two loving parents and a strong family structure for this long. Up until now I've never faced the reality of part of my world crumbling down. In a way I feel like I'm losing my childhood, my identity, a part of me. Now stories are listened to with a new found hunger because reality tells me I may not hear them again.
Dad fights on. He continues to have good days and bad days. It's painful to watch him suffer through every movement and his agonizing routine of life, where even getting up is a chore. When I was suffering I at least had the hope of previous success with treatment to provide the strength to fight on. I still had a strong, young body that had been prepared for the battle ahead. I had time to prepare myself mentally through knowledge and wisdom of others, who had been there. I had a chance and some odds. By the time Dad was diagnosed I don't think it was a question of recovery but how much time treatment could buy him.PRESENT STATE June/99
Dad is getting close to the limit of radiation his body can withstand. His last meeting with the specialist (June/99 ) saw no radiation in order to give his body a break. His basic pattern for the radiation treatment has been treat an area, pain subsides, reappears in a new area, with the benefits from the treatment losing their effect over time.
Dad's next
appointment with the specialist is July 19th. Now you're pretty well up
to par on his present situation. I will keep you informed of
occurrences as they present themselves. I really haven't decided about
how I feel about doing this
on-line, but I think the benefits outweigh the doubt. Lately I've been
hearing
from others who have been following Dad's story and have been strength
givers to both me and Dad in ways I never thought of.
A life long friend of Dad and the family finally found the courage and came to visit this weekend. It was a very emotional reunion. Why did it take so long? It was a combination of assumptions, ignorance and uncomfortableness on all parties. The result was one memorable occasion that everyone needed, especially the spouses.
Fight the uncertainties and communicate.
Found out that Dad went through
extreme pain today. Apparently he had severe muscle spasms to the point
of making him scream. It lasted for quite awhile but is subsiding. He
says the area is still tender but seems to be getting better. YUK !
Dad was reluctant
to go on his walks because of the lovely treat a muscle spasm would
cause but since they haven't returned, he's out on his daily jaunts
when the crazy weather will let him. I asked him about the muscle pain
and he described it
as " a pain that just kept on going, a steady ache ". He says the area
is
still tender when he touches the muscle. Glad to see he can get out
again.
Dad met with the doctor today. He confirmed what we already knew that the radiation was no longer working and that Dad had to consider moving onto chemo. Now it's w/w again until he receives word about meeting with the chemo doctor.
I read Dad his story up until today and it was emotional. He agreed with most of it but didn't think it was as bad as I made it out to be and had me tone it down a bit, always the optimist. I asked him how he felt about me writing on the Internet and he, like me, still isn't quite sure how to feel.
Dad has come to the conclusion that he is not able to get around enough. He hasn't gone for a good walk in a week and a half. Most people would sulk and pout but not Dad. He goes out and finds a deal on a scooter.
His appointment with the chemo specialist is next week. I want to thank the nice lady from Hamilton who shared the story about her father and re-enforced the idea in me that if you have the will you still have a fighting chance. Thanks for sharing.
Today Dad turned to a new weapon chemotherapy. It was easy for me to help him decide on his options for I have had first hand experience with the benefits and the dreaded side effects of his choices. Hopefully my experience and knowledge of what is happening can ease his discomfort. Dad knew what was coming and his new doctor had little convincing to do and Dad went from the examination office to the chemo room to get his first treatment. He knew he had no choice. I know how he feels.
I fought going to chemo for 6 years but when you're cancer turns you know it's time to play the cards that are dealt you, and at this stage you have little options. If there is fight left in you then you must press on.
Dad's treatment involves Novantrone (Mitoxantrone) a new pain relief drug for advanced Prostate Cancer. Research shows its a promising treatment for Dads histology. I'm glad he's staying with me for a few days so I can help coach him through this, because there are side effects. On a scale of 1 to 10 for toxicity, it falls in lower range, from what information I can find.
He's a brave soldier.
It's been 9 days since Dad's first Novantrone treatment of a cycle of 4 treatments every 3 weeks. Fortunately he will be able to receive the remaining 3 treatments in Mattawa, thus eliminating the 2 hour drive to Sudbury. So far so good. Besides being tired and sore Dad has so far not thrown up. He has however needed to increase his pain medication, and visit the family doctor in Mattawa for relief.
The day after the first treatment Dad received a blood supplement over a six hour period to raise his blood counts. Kind of like that idea because I don't recall receiving supplements before my treatments, only after. Medicine is progressing so fast that it is hard to keep up with it all, but it is encouraging to know that medical discoveries are opening the doors of hope a little bit wider.
I'm glad Dad finally decided to ask for more pain killers. I've been trying to convince him that there is no need to suffer but I know where he's coming from because I had the same attitude ( not sleeping all night and still going to work and having to be pleasant).
Pride
forces you to be strong to push on
with the hope that it will go away
but it only
seems to get stronger
and it takes
over your life,
engulfing you in it's suffocating state.
That's a
heavy statement but if you've been there you understand. Dad
understands too well.
Sept 2nd
Dad was admitted to Hospital yesterday to be hooked up to a morphine drip system. He can't handle the pain under the current treatment of pills and patches, there just not strong enough anymore. He's finally decided to ask for additional help. I know how hard that was for him, because in a way you feel like you are giving in.
When I first heard that he was in the Hospital the anxiety hit despite reassurances from Mom. I didn't feel okay with him being in the hospital until I talked to him and he filled me in on what was happening. According to Dad he is " 500 times better " and feels so relieved that he actually had a good sleep for a change. He thought he would be on cloud 9 from the high level of morphine but isn't and almost sounded a little disappointed. Doesn't surprise me that he is retaining his wits, he's a strong man and told me he is not leaving the hospital until he feels ready and has found his comfort zone with his new buddy. That's my Dad.
Dad is still in the hospital. It's been decided that he might as well stay in hospital until he receives his second chemo treatment on Wednesday. He's finally feeling the effect of the constant pain relief (morphine drip).
Dad is fortunate to be in a small town hospital environment, in his time for special care. At one point during his stay he was the only patient, surrounded by a staff consisting of family members, friends and acquaintances. I couldn't think of a better place for him to be. It's time like these that make you aware of how special family ties are and the calming nature they bring with them. Our family is indeed special and Dad is fortunate to share the love of so many. Hard to find that in a city.
After a 3 week stay Dad is finally home from the hospital to a converted room with a hospital bed, and a nurse visiting daily. He's having a hard time finding a comfort zone between the amount of pain treatment needed and the related side effects to the increased dosage. In order for him to be pain free he needs to use a large dosage and risk heading into territory where he has little control, over where his mind will take him. Super dreaming.
<>Dad is finally on cloud 9. The additional pain pills are causing his mind to work in overdrive. One of his new beliefs is that people thought he was faking the pain. He's such a proud man to be caring what others are thinking about him. When he told me this I'm glad a lifelong buddy of his was at the hospital providing support, but I still needed to look away and compose myself because his words hurt instantly. I assured Dad that nobody thought he was faking. Don't have to fake that pain. Most of the time Dad is fine. Every time I talk to him or see him he's normal to me, he's Dad. But he tells me his mind drifts sometimes leaving a clouded memory of the past and reality.Dad has completed 2 of the scheduled 4 treatments of chemo. He found out from the doctors that it takes a while to work, and hasn't been getting sick from the treatment and he's still okay with it and wants to press on.
<>Things can change so fast. Dad is back in the hospital where he can get the proper care for his ailments. He's not eating and losing his strength. His blood counts are too low and now even the chemo is no longer an option.
His body sores are amplifying, only adding to his discomfort. Dad told his best friend " that he doesn't think he will see Christmas ". Reality is setting in.
This is getting harder and harder to write each time. My answer for inquiries to Dad's situation nowadays is "same old same old". Things really aren't going anywhere fast. He's still in the hospital under professional care, where all of his needs are met. During my last visit I left with an uneasy feeling, one that I wasn't prepared for and has left me pondering if I can do more.
While I was at home we got a call from the hospital asking if we could come and calm down a rebellious patient. When we arrived we found an agitated father who was obviously fed up and confused. Just the presence of sons calmed him down and we got him back in bed and relieved the pain generated from him moving about. While I was holding his hand and stroking his arm comforting him he looked at me differently.
It's almost as if we have changed roles. All my life he has been my guidance, my strength. Those eyes were looking for answers. Answers that I could not give. It was almost as if he was asking me to tell him how I had overcome my cancer and what he should do next. I wish I had a magic wand I could wave to make him better or knowledge of a medical procedure to use to buy time but with his histology, there aren't any options.
Dad has good days and bad days. On certain visits I think " well this is it " and then he recovers. He's such a fighter and his love for life keeps him alive. If I ever get in a difficult situation again it will be easy for me to think of inspiration. I'm so proud of my Dad and how he is conducting himself under extremely harsh conditions.
The battle is over. Dad is finally at peace and he no longer suffers. Dad died Sunday, October 17th at 8:00 in the morning surrounded by his family, who watched him take his last breath. Our anguish was mixed with feelings of relief for we had prayed that it would soon be over, and our prayers were answered.
The last two weeks have been very emotional. For a while Dad seemed to be getting better. His color came back and even under the effects of the morphine was witty and still had the ability to recognize and communicate occasionally between his bouts of frustration. This was the calm before his storm.
I was told
and now I believe that Cancer patients
go through a
period of semi wellness
about a week
before they succumb to the disease.
My last visit with him on the Saturday before he died is one that I will never forget. When I entered the room and he saw me he went into a blind rage and he kept saying " I just want it over, I just want it over, I just want it over". The more he struggled and the more he said it, it broke down my wall and I found myself not knowing what to do and a feeling of helplessness and sadness rose from the pit of my stomach up my body into my upper torso, resulting in an overwhelming tingling sensation in my head and face. I had to sit down and try to compose myself while nurses calmed Dad down after what seemed like an eternity.
During my stay with him his strength amazed me even under these conditions and I had a hard time keeping him from struggling and I had a new found appreciation for the nurses responsible in administrating his care. I've never been so scared in all my life, not even when I was in danger. During this last visit I was determined to get a response from Dad. Despite the struggles I held his hand and let him know I was there. Several times he would calm down and I could tell he was trying hard to focus through his good eye. Then he would hold out his arms like a small child would and I'd hug and kiss him and we would have a good cry together, and I told him not to fight it.
During one of the quiet periods I held his hand like he used to hold mine, caressing the top of the hand and administered a series of love taps. I did the procedure several times at the same time asking him if he remembered who did this. A smile came to his face, one that I will always remember and one that I will always cherish because it was something that I wanted to remember him by, not the person I first saw when I entered the room. For him to fight through the pain and find the strength to smile showed how much he loved me and told me that he felt my love, and it happened because I made the effort to try to communicate with him.
That night we discussed our feelings together as a family and what was brought up in the conversation surprised me a bit. I mentioned the feelings of wanting to put a pillow over his head and end it all and the feeling was echoed throughout the room, we were all feeling it and praying for it to be over. Mom then asked me " Dave you've been there how long do you think it will be" ?. I told her that my battle never had reached the level where Dad was at, and that even the Doctor's couldn't predict an exact time. From what I saw in the room a few hours earlier, I knew it wouldn't be long.
We got a call around 6:30 Sunday morning from the hospital and were with him when he passed on. The conversation from the previous evening and my visit with Dad on Saturday prepared me for his final moments. When Dad left this world there was a feeling of sorrow and relief. It wasn't as emotional for me as the day before and I hugged and kissed him for the last time. Everyone was relieved that his suffering was over. No one should have to endure so much pain.
I'm not afraid of dying but I am scared of the pain dying from cancer can bring. To watch a proud man wither away to the point where family and friends can no longer endure the anguish of visits, is strengthening my belief that I will need an out if my battle with cancer gets to the point where I lose my dignity.
These last few days have reinforced my belief in the importance of a strong family and community structure in our time of need. The staff at the Mattawa hospital have been so considerate, kind, understanding, strong, compassionate etc., and have gone far beyond what the job calls for. I've spent my time in hospitals and never have I felt such a caring nature to a patients care. Thank you all for making this difficult time for the family a little easier to take.
Word is getting out in the community of Dad passing on and the number of condolences the family is receiving shows how Dad was viewed by the community. Small town love is arriving in the form of phone calls, cards, flowers, donations to Cancer, food, and individuals stopping by to offer support and a caring hug.
Dad didn't want a traditional funeral and is being cremated. Those thinking of using this service should be aware that there is a long waiting period in some areas. He insisted on a memorial service only and an Irish wake afterwards and wanted us all to remember the good times and to have a party on his behalf.
Dad's
funeral is 11:00 a.m.,
Monday
October 25th,
St. Anne's
Church Mattawa
In a few weeks when it's all sank in I'll enter my final thoughts to the story of my Dad, my hero, my buddy. I'm really going to miss him but he'll be with us forever. I'll always remember one of my last visits with my grandfather before he passed on and I was battling Cancer at the time and he reassured me that I would be all right. Several months after he had passed on I was at a stage in my battle when things were getting bad and as I was lying in my hospital bed I thought of what my grandfather had said. A few moments later an older gentlemen in the next bed, who I had never even talked to yet, suddenly started humming one of my grandfather's favorite songs. I asked him why he was humming that tune and he replied that it had just popped into his head. I knew I was going to be okay from that moment on.
I love you Dad !
I want to end The Final Chapter with an e-mail I received from a caring individual who has NHL and like me finds the time to share the experience and knowledge of difficult situations to others with a need to know.
Dave:
My father was diagnosed 6 months after I began my 1st chemo. He was 81 then. I was 35. My mother then had experienced her brother, mother, father, son, and husband fight cancer. Too much for any one person to expect. I was moved by your feelings expressed so well in your writings. It's very difficult to contend with these trials we're given, but we nonetheless endure. We have to. I wish I could suggest a therapy or program for your father. I'm so sorry I can't. What perhaps could comfort however, is for you - my heartfelt understanding and deep sympathy. You are, partly because of this experience, becoming a true human being. Your father was fortunate to have known a son such as yourself. Please express this to him from me. He will perhaps understand then, that whatever he did in life, or whoever he was, how much he did, what he obtained, whatever, he got to be the most completely successful being a human could become - he is the man who is your father.
Bless, Reed
Holt