DEALING WITH REMISSION
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Inspired by Neptune an NHL friend who is in battle
and for 7 hours we fought NHL together

Cancer is a rogue cell which multiplies without respect for normal systems of cellular control and develops into a mass that invades and destroys normal tissue and structures. It is a powerful, mindless beast that spreads, grows more rapidly than normal tissue and ultimately leads to the death of the host. When you're being remitted from this there is reason to be thankful. But as time goes by the reality of your situation sets in and you question what you are celebrating. My NHL is non curable. What now? You begin to wonder about relapse. So now you understand the hardship of cancer, "its lingering uncertainty," especially during remission. By achieving success you have more than likely also achieved a loss of focus and support and you still have to learn how to deal with the future. Again what now?

Years ago, when someone had cancer, there was little discussion of how he or she was "coping or dealing with remission." Coping is the attitudes and behaviors that you employ in order to maintain your emotional well-being. Each of us is different, so the goals and challenges you are facing are personal to you, and many of these are influenced by the nature of your illness and  treatments and depend on many individual concerns. Coping with NHL is a process that can go on for years (knowledge of 35 year NHL survivor) and patients use different strategies at different times, depending on their condition. In my 12 year battle with NHL roughly 9 have been in remission and only about 2 years of  walking wounded, hard times. Its no wonder I feel like a modern day gunslinger living life to the fullest while I still can because reality tells me the show down at the Big C Corral is coming. But as the fifth anniversary of my Stem Cell Transplant approaches and I know the definition of Cure (5 years) does not apply with My NHL, but I must hope that because I enter virgin territory like the gunslingers who caught a break, I too will find greener pastures for my efforts.

I

I try to find people just like me with the instant understanding, NHL, connection.
(found another one doing an Internet search the other day)

I prepare for the future by answering the wake-up call and change when need be.
(personal medicine is your ability to take care of yourself and it should be your chief objective)

I know in my heart that, if I relapse, I'm going to fight with every weapon available.
(can only do what you can do )

I stay realistically positive
(attitude is so important)

QUICK MEDICAL HISTOLOGY TO BRING YOU UP TO SPEED

I was diagnosed in 1990 with Low Grade-Follicular-Small Cleaved-Stage 3 NHL. Having always been an athlete and healthy, getting sick at 30 was something I definitely wasn't prepared for. In fact I didn't even have a family doctor and I had been living in this location for 7 years. Mass confusion (the complexity of medical jargon, procedures, schedules, and bureaucracy) and scared best describes the initial battle with NHL, I felt like the rookie gunslinger putting his live on the line not knowing what he was made of, or if he was good enough to move on. I was lucky enough to be treatment sensitive and even luckier that it was Leukeron (chemo pill). I lived with the physical presence of the node in my groin for about 6 months, slowly watching it grow until I finally found the strength to get it checked out, ironically after my first Old-timer Hockey Tournament. By treatment time it was in both groins, under my arm pits, on my neck and internally. Yuk!

Round 2 came 3 years later and the node was growing in all places the top of my mouth. Upgraded to the dreaded "recurrent" handle. Now that biopsy was fun. The first round with Leukeron didn't work and the specialist were suggesting heavy chemo. I knew I could handle the pills so I convinced the doctor to try it again at double the amount. It wasn't suppose to work but it did. Our gunslinger wasn't trading in his reliable relic for the latest technology and sometimes gut feelings can buy you time.

Round 3 came a half a year later. This is where I paid the piper. The hardest thing was getting use to the presence of cancer over time and monitoring it's growth and adapting the "well if it's not growing I'm safe attitude." I got involved with a Monoclonal Antibodies Phase 3 Clinical Trial with limited success and eventually had no choice (growth in spine severing nerves slowly) to agree to Stem Cell Transplant. Ironically once again the transplant occurred during the same Oldtimer Hockey Tournament and I remember promising myself that I would be playing in the following years tournament (symbolic gesture). I not only played I was the team MVP in the final in a close 3 to 2 lost, scoring a goal and assisting on the other. Talk about emotional, which probably describes the entire year after the transplant. The name for my web page "NHL Playing In The Wrong League" didn't evolve just for the National Hockey League reference but because for most Canadian boys the dream is to one day play in the NHL. I play 2 NHL related games but I'm indeed grateful to still be playing for our gunslinger knows that he is pushing his luck at the Big C Corral.

SEEKING KNOWLEDGE

Many believe that modern medicine will someday develop effective therapies. Those afflicted, their friends, family, lovers, pray that the breakthroughs will come one day soon. So we must as "Real NHL'ers" seek. Initially most of us go through the denial stage and don't want to face the reality of knowing what they need to know about NHL, sometimes as a positive coping mechanism. I was fortunate that my medical histology allowed me to get to the curious (Seek Knowledge) stage 6 years into my battle and to the hungry stage, because of the necessity of the Stem Cell Transplant, just as fast.

Mass confusion (this can't be happening), to
denial (knowing as little as possible is best), to
curious (becoming interested), to
hungry (need to know)

Initially I relied totally on the doctors and was embarrassed to have NHL. Why was this happening to me? What did I do that was so wrong to deserve this negative evaluation by society. The need to slowdown resulted in a new lifestyle and change. Try looking for new work when you have no idea of what's going on, so the success of finding a new job helped to eventually boost my esteem. After about 4 years I was becoming comfortable with NHL and began to truly communicate, document and create with NHL related material, especially when it came to the humanistic nature of living with cancer. It was almost as if I had crossed an invisible line where I began to feel good about myself. I listened to those who said "those who can handle tough situations and adversity are the ones who are faced with it" and learnt how to draw strength from their words. I learnt that it's not our fault that we have NHL but one thing is for sure, it takes a very special person to press on under these circumstances. Feeling good about yourself aids in the healing process.

Seeking knowledge is communicating and it's usually done most effectively on a need to know basis. Many studies have shown that patients who express their emotions and concerns enjoy a better psychological adjustment than those who tend to suppress their feelings or keep quiet about them, so you better learn how to reach out for support if you want to be here for awhile. I had to. Here is how I progressed:

denial (first 4 years)
collecting relevant information
organizing relevant material (next 2 years)
creating NHL documents
creating NHL manual (next year)
creating NHL web page (next year)
frequenting STOP NHL Message Board (3 years ago)

This didn't happen over night and there was a lot of reaching out to learn including HTML but after I had conquered most of the medical terminology I knew HTML didn't have a chance. Reaching out to learn how to take and share NHL knowledge allowed me to feel good about the decisions I had to make and will allow me to feel good about any future decisions I may have to make. The Support Networks and contacts I've made through on-line correspondence and paying attention, give me peace of mind. The hardest part of all this communicating was becoming a regular on the Message Board. Only a small fraction of the visitors to the site actually find the courage to post because it's a draining place and every once in awhile I need a sabbatical to regroup and recharge. Where does communication take me from here? Funny after all that communication it still bears down to hope but at least I truly believe there is reason to hope!

PREPARE FOR THE FUTURE

Every once in awhile during remission something takes you off your perch and reminds you of the reality of your situation. Appearances of strange growths, blotches, pains or phantom pains fill you with the same old anxieties and fears and those nagging questions of what to do during this wait and see process. Being athletic and staying in shape also have pains of their own but they still bring with them doubt and I haven't even introduced the natural aging component yet (my knees tell me different but my energy level says no). I usually use if I can't live with the pain or wait 2 week philosophy. NHL uncertainty will be a part of my life forever.

I find peace of mind in knowing that I have done all that I could do in regards to trying to understand my situation and how it effects others and how in turn they affect me. When ever I'm feeling down all I need do is visit the Main Page of my web page and instantly I'm rewarded with what others have said. How can that not touch my heart and give me strength. I also know in my heart that, if I relapse, I'm going to fight with every weapon available. The necessary network is established, so that if decision time comes again I will still be able to walk the walk and talk the talk. On day 18th after my transplant I was at the day treatment desk checking up with my favorite nurse about my blood work. We were waiting on a particular type of blood cell to rise to safe levels (can't remember cell type now but I knew it back then) to get discharged and be able to go home. My specialist doctor was listening in the background when my favorite nurse read me the particular cell type reading and I immediately responded "quit teasing" because it had risen dramatically over night and I wasn't expecting to get out." Later my favorite nurse told me that the specialist doctor had asked her if I knew what the blood count readings meant. From that point on she has been a lot more liberal in answering questions including the talk about being discharged.

POSITIVE ATTITUDE

Technology is progressing so fast and my flame of hope grows brighter each day as new means of treating the disease are tested and approved and the news of more and more success stories find my ears. Being informed makes you more comfortable at the decisions at hand and the understanding of repeated remission shows you the true value of a simple breath of fresh air. Statistics show that patients who are hopeful and optimistic show a better adjustment to their illness than patients who are pessimistic. This is all common sense but how does one keep a positive attitude, when the seriousness of NHL causes psychological stress that varies with the perplexity of the disease. Trudi best described how I do it with a special posting that I treasure.

What an incredible way of looking at it!! As I read your response early this morning,  the word "pleasure" jumped out at me! I've heard so many nasty things about radiation, that I would NEVER have associated it with pleasure! Your message reminded me of something though - it's not what happens to us that counts, it's how we react to what happens to us that's important. You have chosen to react to NHL & the treatments you've had, with gratitude and a "the glass is 1/2 full" outlook. Not only has this attitude probably helped YOUR life to be happier than it would be if you had a "Poor me! I've been through so much!" attitude, but it also affects the happiness of OTHERS! I was feeling down this morning, but now I honestly can't even remember why! After I read your message this a.m., I did an about face in my negative attitude & I started smiling. And I've been smiling ever since! Thanks to you, my day has been a happy one. Thank you!!

Easy to stay positive after statements like that and it is a source of strength often. Thanks Trudi! From day one I always said I was prepared to go ten rounds with the big guy. After I learned how to use humour and exercise to rid me of stress I slowly came to terms with me having NHL. I've learned to harness the love from family and friends support and quit trying to ever portray the tough guy image. I've learned through my Dads experience that I 'm not afraid to die but I am afraid of dying from the pain of cancer. But most of all I've learned that if it does come back it's not FINAL and I've already proven that. All I know is that being positive and feeling good are vital parts of the getting better process. However, I still need to work on not falling in to the same environment that got me in trouble in the first place, invincibility. Years ago it was youthful exuberance but today it's from remission bliss.

TAKE CARE