changeme

Story

Emotions

Spiritual

Physical

Commun.

Vault

NHL CHANGED ME

A TRUE COLORS PERSPECTIVE

I'm celebrating my 14th anniversary with NHL (Non Hodgkin's Lymphoma) by putting down in words my findings on living with a non curable disease. Way back in October 1989 my life changed forever and I needed to adjust to survive. What I want to stress right away is that no two people with NHL are alike, everyone copes in their own way. There are many different ways to get well. Some of us who battle NHL don't want to know everything about NHL and that's okay if that's how you cope. Others are lucky enough to have a Twin or a Direct Caregiver (main support for patient), who is hungry for knowledge for both of you and I know from personal experience that a caregivers journey is more emotional than the patients, so please take care of yourself too.

So as a caregiver this information on dealing with NHL serves you twofold,
better understanding the patients needs to get well,
and better understanding of your needs to stay well.

An important trick of survival is to learn from others and not to copy exactly what they did or do, but to have an open mind to what could work for you or your situation and if change need be part of the package, then learn to welcome it with open arms. Speaking from experience easier said than done, but good advice none the less.

Cancer affects the human spirit as much as it affects the body. It challenged all my goals, values and beliefs in life and added to my backpack, emotional effects that will probably hide/linger/ignite for the rest of my life. Symbolically, the person I hoped to become needed to undergoes great change. When NHL came I was embraced in Gold Temperament's web of the need for security, holding down a good job, caught up with schooling costs after 7 years of higher learning, putting in way too much time at work and having little time for myself and play. My Gold Temperament priorities, due to the circumstances of the times (early 1990's little known about NHL - limited treatment - little support/hope to be had) could be at the forefront no longer if I was to maintain my sanity. A lingering statistic I remember finding early on was a mean survival of 2 years and a medium of 11 years and it didn't matter if the belief had any merit, it did to me and still does as I move in to year 14. Being positive even back then (always said I was going 10 rounds with Mr C) I recall thinking that meant if I can get by the early years, then the chances of a lengthy survival would increase and I was determined to add to the number 11. Golds are realists and to a gold these very personal stats weren't exactly encouraging at the time, but are looking mighty fine now. Today's information oriented medical approach means less need for dramatic change, but regardless we all change when NHL enters the picture.

In order for me to survive I needed to move my Orange Temperament to the forefront of my True Colors Spectrum and this didn't happen over night. Orange and Gold were always close in my TC spectrum, so it wasn't that big of a job, but it still took alot of time and altering beliefs. Here are some examples of how I've changed over the years in no particular order just as they came to mind.

GOLD	Before holidays or outings were planned well in advance to fit in
ORANGE	Now I can drop everything and be spontaneous and impulsive and just go play and not feel guilty for playing what I want to play (my definition of play - having fun, being active, athletic, making time to entertain and be entertained, spending more time with family, the I/me/us not so much them principal factor).

GOLD	Before I always liked to do almost everything myself - need for control
ORANGE	Now I'm at ease with others doing things for me - paying for things I can do myself to free up quality time.

GOLD	Before I was ashamed of what NHL brought with it - fitting in and closure issues. I lost my strong sense of what life was all about to a gold, being useful and belonging.
ORANGE	Eventually I cared more about what was important to me not so much to what others thought

GOLD	Before I felt that I could never know enough about NHL, that I didn't have any control over what's happening or what was going to happen
ORANGE	Eventually I developed the day by day scenario and do what I could do philosophy and took/take it in stride. The adventurous, competitive here and now present time focus who values fraternal courage.

GOLD	Before I was angry not with anyone or anything in particular just the situation I was in, especially during the "why me syndrome" - no control
ORANGE	Eventually I learned how to channel the energy from the anger to be optimistically productive

GOLD	Before I felt like I was never doing enough, I was always feeling guilty - NHL Limbo
ORANGE	Eventually I learned how to be at peace with NHL or as I refer to being NHL Proud and dealing with it in an energetic and creative way.

GOLD	Before I was blaming myself for getting cancer looking for closure in something I may have done
ORANGE	Eventually I learned to pick up the pieces and move on and quit being so hard on myself

GOLD	Before routine and habit were the norm................................................................
ORANGE	Now diversity rules with relaxed standards

GOLD	Before financial activities were always priority
ORANGE	Now I've got back to my athletic nature with the priority of keeping myself rather than my affairs in shape (And for all you golds thinking that this is a free ticket to plead that in order to get healthy you need to let your hair down and really let loose, please remember that my gold conscience kept me in check)

GOLD	Work - $ was the factor
ORANGE	Now for work helping others and personal satisfaction and being impactful and seeking the new are more a priority that $ (color works well with the pact I made with the powers upstairs in my time of need, that they were going to let me stick around as long as I continued to do good - being orange allows me a little bit of lea way)

I learned about the True Colors program about 3 years into my battle and when I took the workshop I was already Orange then. There is no confirmation that I was ever Gold, but at worse I was a closest Orange with a gold oriented approach, brought on by societies need to excel by its terms and standards, not ones as it turns out that were best for my interests. Being Orange has helped me deal with never knowing the true state of my health. Getting well from cancer involves my learning to be aware of my needs and learning how to meet them. I accepted what I could not change. Once I started dealing with NHL, things improved.

I started to set up the rules for my game of life,
using the cards dealt me,
so that I had a better chance of staying in the game.

Part of the process involved the change in beliefs. As an orange today I create new experiences so that I have references for my empowered beliefs, which in turn adds to my level of hope. Remission and repeated remission alone only revitalize for so long. I now consider play my work in keeping well. As part of the healing package laughter and fun come into the healing process as an important mind/body link. Many adults in this culture have lost touch with how to play and the importance of play in adult well-being.

While we are discussing beliefs I want to share with you a belief that disappeared. In the early days "Recurrent NHL" from what information I could find was labeled as the cancer coming back in shorter and shorter time periods. When NHL came back the first time, after an absence of 3 years I was labeled. When it came back after a 1 year I was getting real nervous with my arch enemy Mr. C and his recurrent handle and when it was back 1/2 a year later after my 2nd remission I was becoming terrified of MR Recurrent. Lets countdown: 3 - 1 - 1/2 ....................... February 18th 1997 (my moms birthday - I'm getting more spiritual all the time) a Stem Cell Transplant changed my belief of recurrent from being a death sentence, to recurrence of disease often being part of the healing process. Took 9 years to change that belief and like I said things and in particular attitudes don't change over night and it's a continuous effort to stay positive, everyone has ups and downs or highs and lows and you know what that's okay and as Reed a fellow NHL'er recently put it:

Remember Dave that the positives,
however few, are spiced and enhanced by the depths of the negatives.
Blue skies after weeks of overcast,
calm waters following squalls and rapids.
Moments of pain subsession after episodes of trauma, however short.
One minute tears, the next joy.
Life.

Over the years the change in my gold temperament has been more of letting go of things that made me true gold and becoming a more complete person as I worked on and improved and spent more time at, weaknesses in my other colors. Here are some of the strong Gold traits I was glad to have.

I eased into the research and I kept track using existing gold strengths of gathering, organizing, and being thorough and patient, but there was gradual progress and itemizing - handouts - notes - binder - manual - web page (unless you have a photographic mind no one can remember everything and easy reference for clarification also eases the anxiety with must learn topics). Develop the habit of paying attention early and on those can't sleep nights you can be doing something practical, rather than laying in bed worrying.

I learned with dear friends that it was easier to communicate by having personal identification tags and a practical way of handling details:

David Perreault - 14 year, 3 remission survivor of Low Grade, Follicular, Small Cleaved, NHL.
First noticed node 1989 at age of 29; diagnosed 1990 remission from Leukeron pill; recurrence 1993 remission from Leukeron pill; came back in 1994 bought time; 1996 phase 3 clinical trial with monoclonal antibodies; 1997 Peripheral Stem Cell Transplant - Etoposide, total body radiation; Remission since :) Yahoo!

Having a strong gold temperament allowed me to be prepared or to "hope for the best but expect the worst.” and helped me with my "personal medicine". ex. at the clinical trial I wore a big woolen sweater because I read that one of the side effects was chills and shakes - before I received Etopisode I went and got a brush cut because I read that major hair loss is common.

Golds are good caretakers and therefor make good caregivers, which helped in me being a direct caregiver for my dad.

Here is notable changes in my Blue Temperament : ) Once again in no particular order just as they came to mind : (

I learned how to reach out and share my NHL related feelings with others and feel good about doing it and learned how to draw strength from it. Being organized and noting down how I was feeling back then, has allowed me to have a now and then perspective to how I've coped and grown.

I developed a more positive outlook on life - the glass is half full approach - Trudi on the STOP NHL Message Board made me aware I was practicing this belief, because of a statement I made associating pleasure and radiation, many years back. My experience with Radiation has been quick, painless and effective.

I've learned how to channel strong feelings in constructive ways and they include positive and negative emotions (harness the rage, embrace the warmth - if I had this understanding earlier in my battle I could have accomplished and lived so much more - the NHL live life philosophy, rather than living the life of NHL Limbo).

NHL can change friendships. Some friends handle it well and others cut off all contact. Friends stay away for different reasons. - Must keep friends and family I learned how to nurtured along to understanding.

I eventually realized that this wasn't just about me - I needed to share medical and emotional information to ease loved one's anxieties and fears, who were also looking for meaning.

Not being a True Blue I needed a coping mechanism - forever telling my story ( and not knowing how to deal with all these amplified emotions) - so I made this NHL related web page as reference for caring, authentic individuals inquiring about my personal well being. Worked well passing out a card at social get togethers and telling the sincere individual to email me. When you don't look sick people are more open to ask questions. I've also been rewarded in so many different ways for sharing the knowledge as a result of "NHL Playing In The Wrong League". So what started out as a coping mechanism has blossomed into as one dear NHL'er puts it "her bible". The stimulating power to help each other from half way across the world. Right mate!

NHL gave me what I call Male PMS - the emotion roller coaster of highs and lows and the amplitude felt with each. I can only imagine the joys and sorrows of a True Blue ( : the high for me - finding the strength to communicate and fight through morphine induced release and truly say good bye to my dad - the low for me - crying at old movies and knowing you never cried when you saw them before ) :

When I'm in a down cycle and we all have them, I practice the fine art of WWYSNN (Watch What You Say No Negative) as the norm. Transformational Vocabulary: if you eliminate a negative word in your vocabulary, you will begin to eliminate negative beliefs and negative experiences and you stay warmer than you would be with a totally negative attitude.

I learned that I am in charge of how I think and feel. I needed to be in harmony with my spiritual and physical self before NHL became somewhat peaceful.

No color is left out when change occurs and my Green Temperament was no exception and here are the weaknesses that I worked on:

I learned how to properly search in a focused, analytical approach for medical information. Knowledge is divine it allowed me to walk the walk and talk the talk. Doctors (majority are of high green temperament) usually wait for clues from the person with cancer. They need to know what the patient wants to know and when. Whether you like it or not, it is usually up to you to take the first steps towards open communication with your doctor and I learnt the best approaches to hear what I needed to hear. Proof in point - standing at check out desk with my favorite nurse on day 18 of my stay in hospital, waiting results of a complex blood cell type, that I can't remember now, but I knew back then - when my favorite nurse read me the result I said "quit teasing" because it had risen dramatically and wasn't expected too and my oncologist overheard - I found out later that she asked my favorite nurse if I really knew about the blood counts - I went home that day with an enlightened level of communication with my oncologist.

I learn the green trait of asking for clarity. ‘If I've got that right, you’re saying…’ This gives the doctor the opportunity to explain anything you’ve misunderstood.

I learned the green temperament that medically I was unique (no two patients alike) - for the cause I talking my oncologist into letting me use Leukeron again at double the amount that worked the first remission - against the norm - it worked and bought me more time.

I developed the green attitude to strive for improvement with high expectations and in the early days it meant working independently. Just because you can't find what you're looking for doesn't mean it's not out there and involved alot of questions and exploring ideas and differentiating and reasoning the findings to make sense for me. When you are helping to lead the charge in medical progress of what works and what doesn't, there is a lot of green happening and I'm sure glad I had Trudi, Reed, Neptune and many others around in my early hungry for knowledge days.

Emotions can be harmful to the body but they can also be helpful in the healing process.
Research in the new science of Psychoneuroimmunology shows that the immune system is affected by various attitudes and emotional reactions in the human body. Evidence shows that our emotions and thoughts "talk" with the billions of defense cells in our immune system. The pioneering work to understand how this communication between mind and body takes place is just beginning.

Mind/body links play a major role in determining a person's ability to survive and mind/body therapies are employed to alleviate these psychological factors. Emotional intervention is an important addition to standard medical therapy which often focuses on "killing the cancer cells." We are now seeing that messages from the brain not only can directly influence the immune system to kill more cancer cells, but also as importantly can influence correcting abnormal cellular memory. The mind is very powerful in the treatment of cancer. In fact, an important enhancement in healing seems to occur right when the patient makes the decision to get well. I believe that what your brain pays attention to helps to determine your outcome! Being positive or even trying to stay positive really does help, but some with NHL are dealt cards right away that leave little to be optomistic about and I was so grateful to have 6 full years to charge my body and soul, before I felt the full force of Mr C.

More and more patients are searching for alternative choices outside of traditional medicine.
Cancer is but one nasty plague that is eating away at our core as a society - it is there to show us that something is not working. We have to seek for more as individuals in order to create the changes in the systems around us. I remember Reed opening my/our eyes to this concept years ago on the STOP NHL Message Board.(http://members4.boardhost.com/nonhodgkins/)

The "New Age Medicine" of mind and body working together to harness mental powers that will help heal the body is not new. The placebo effect - which says that if patients believe that something will help them, it will - has been well documented as a source of healing. The purpose of psychotherapy is to help people with emotional difficulties learn ways to feel better. There is great variation in the quality of support groups, and some people find them useful. Scientific studies, however, have failed to show measurable benefits. On the other hand, studies with patients with serious illness have documented that substantial improvements in quality and duration of life can be achieved with Specialized Psychotherapy programs.

The STOP NHL Message Board is one of the earlier versions of a Specialized Psychotherapy Web Page that has blossomed in time to where it stands today, providing guidance, support and hope for so many caregivers and patients. So many including myself owe Trudi dearly for her having the wisdom and strength to make it happen and to continue to make it happen through crashed computers, changed providers, etc... Bruce has been so lucky to have you as his caregiver and you've provided inspiration and guidance to the so many that follow in your footsteps.

I've always felt and continue to feel that STOP NHL Message Board has always been and will always be ahead of the game, because there is always someone there unfortunately, presently in battle and still at the hungry for knowledge stage. Along with a strong core of NHL veteran, sophomore, junior and rookie Stop NHL Family Members providing the support and healing and dipping into the cauldron once in awhile for a slug of regrouping and recharging themselves, the board is NHL. According to experts Specialized Psychotherapy therapy only works with a trained facilitator, but we have our own method of facilitation, all taking turns facilitating integrity and unity, through our posts and advice and our schooling comes from the greatest source of knowledge "the hands on approach of living the life than NHL brings".

STOP NHL Message Board has become my anchor. Anchoring is a created association of thoughts, ideas, feelings, or states with a specific stimulus. Emotional bonding is stronger than any legal contract and it is part of the reason I come back so often to visit and post when I make time, six and half years into this 3rd remission. Emotional bonding is based upon trust. Emotions are strong driving force in the immune system and other healing systems. Our beliefs and attitudes influence our emotions thereby affecting our health and healing systems. Harmony is central to health right Reed. These skills and insights also change our relationship with death by lessening our fear and pain, and freeing more energy for getting well and living life more fully today. At my last 6 month check up my longtime oncologist and I had a lively discussion on what to do about having NHL, live! Jess I'm so proud of you for living your life and not letting NHL Limbo swallow you up. I wish I would have known better 13 years ago.

We are fortunate to live in a society driven by the dollar to find ways to make things easier for us medically. Research is blossoming new ways to help us live longer. I can personally speak for the Canadian Medical System to whom I owe my existence. As a patient and a caregiver I don't recall one instance where I was disapointed with the service provided, when you look at the big picture, not little things like waiting 2 hours longer than usual for a check up. There were 2 instances where I questioned decisions at the time, but as time goes by I realize they were made in my best interests. I feel lucky to have been blessed with a profesional, caring medical team. We in Canada are fortunate and most Canadian's don't realize it. I do and thanks for giving me this trust as a patient and as a caregiver. The medical aspects I leave in your capable hands, but I need to take care of "My Personal Medicine".

Bonding is a biologically based need. "With other survivors we are able to articulate our fears, anger, and sadness." Over time the process of posting helped me crystallize my thoughts and size up my emotions. The board over time rid me of the perception that I was in danger when I was not. I learned how to activate healthy beliefs! Excitement overrides fear. Getting well with cancer requires the energy that can best be produced from a balance of relaxation and excitement (or as I like to refer to regrouping and recharging). Others on the board taught me this wisdom.

They also taught me that a spiritual being
knows that we are powerful, because of our mind and soul.

A spiritual being believes in the ability to manifest miracles:
"as you think, so shall you be, not only in yourself, but also in others".

Wise wise words right Shirls and Neptune and you two have the spirit for life itself.

The names listed above are " My NHL Heroes "

VISIT NHL HIGH FIVE

For their story and more information to try to guess their True Color

NHL CHANGED ME
A TRUE COLORS PERSPECTIVE