Posted on STOP NHL Message Board by Dave P. on 8/24/2001, 7:20 pm

This NHL thing it just plain takes over your life, like it, or try to like it, or not. Now Neptune fights and before her Shirls and Bruce had flair ups, all regular veterans to the STOP NHL board (Bruce through Trudi -demme choose-sorry bad French), who over the years have provided much needed positive example to the growing masses of NHL victims, that search for understanding of remission and the periods of contentment that comes with it. Sometimes life isn't fair because these folks are loving, caring, special human beings and should not have to have gone through or go through what they go through now. They are my inspiration my example and despite what they went through and go through they always find means to share and we barely had time to celebrate the latest victory and here we go again, full force. Not fair! No wonder I'm down.

I can't get over this feeling that my life has been in LIMBO since NHL entered my life at the age of 29, over a decade and 3 remissions ago and I'm sure they feel the same way. Who will tell us different? Nobody wants to realistically talk about a future or give us some bonefide escape clause from the contract that NHL bears. And when even the people I look up to for example are called back to active duty and when one fails to find remission, my heart is heavy and I think of her too often, much like I did when the other regulars fight. The board is becoming a bigger part of my life again and thus the need for the use of the Dictionary (posting with Reed) and sometimes when you search for understanding you find things to think about.

LIMBO: Middle English, from Medieval Latin, ablative of limbus limbo, from Latin, border Date: 14th century

1: often capitalized : an abode of souls that are according to Roman Catholic theology barred from heaven because of not having received Christian baptism
(well that doesn't apply to me because I have Christian baptism so it looks like my answer for Limbo is in # 2).

2 a: a place or state of restraint or confinement

(personal example - hooked up to KOBE Spectra version 6.0, first in Canada to be treated to the new software for harvesting Stem Cells in 1997. In fact over the three days I was hooked up to the machine for roughly 18 hours and saw my blood treated a cup at a time the equivalent of having all the blood in my body processed 9 times over. This procedure wasn't that difficult to do. The hardest thing was to stay still on the bed for that length of time ( 6 hours day 1, 8 hours day 2, 4 hours day 3 - all those times fishing with females paid off ).

Restraint and confinement but not my answer for Limbo.

b: a place or state of neglect or oblivion

(personal example- In January of 1996 I began receiving the monoclonal anti-bodies, once a week, for four hours, for four weeks. By this time two nodes in the groin had replaced the one removed in the biopsy and one was internally near my bladder, but all were localized, or in the same area. I arrived the first day not knowing what to expect. I had read up on all the side effects, and wore a big wool sweater because most patients had developed chills and shakes. The procedure went smoothly, with no side effects, not even any chills. However I did notice that my cat now looked at me funny, and I couldn't get enough cheese. Testing revealed little change and the doctors told me it was a wait and see process to give the monoclonal anti-body a chance to work. After the waiting period for the clinical trial was over, I was told that I would not be receiving a second dose. That's the shortfall with clinical trials, they follow set guidelines, and there are no options if you don't meet the standards. Medicine in general sort of fits that bill because procedures are usually based on average situations, and if you're not average
are you getting what you really need. What makes matters worse are that lawyers have at the same time handcuffed medical options, leaving them victims to our big brother is watching you system.

Oh I was testy back then and note the sense of humour but I still don't think that's my answer for Limbo.

c: an intermediate or transitional place or state

Now were getting somewhere.

d: a state of uncertainty

And then some.

No wonder I've felt in Limbo because dealing with everyday NHL is uncertainty, highs and lows throughout battle and remission times. However I favour the flexability of c : an intermediate or transitional place or state for its positive potential. When in doubt I think back to a time when I was forever portraying "the tough guy image" during battle long ago and to a visit to a long lost swimming hole and on sheer recelection, diving into a cloudy mist and meeting the horror of solid rock not an arm lengths away, that I had no memory of being there. Go through all this and hit by a bus mentality. Present state. Live for today but still pay attention.

I was feeling down earlier from the effects of ordinary life because having NHL lets you, if you let it, see so much potential in yourself and others and because of the Limbo effect take it more to heart when the disapointment involves others, even when you understand their cause. But that seems so minute (ordinary life) compared to what Neptune goes through now. Neptune needs us to be strong.

Transitional place or STATE needs to be the answer with the understanding that we are all different and each lead our own paths, but grow stronger from the experience of others, with the common goal to find greener pastures, who some say can't be found, but I and Trudi's find (35 year old NHL surviver who posted on her guest book - I'll take that STATE) beg to differ. It's been done so why not me or you? Have to believe in something. Right now Neptune needs alot of belief and I channel this new energy her way.

Take Care

Dave P.

Posted by Krista on 8/26/2001, 3:07 pm, in reply to "Life is not fair!"

All I can say is Thanks. You put what I feel to words that I cannot find to express myself. I've been going through some ups and downs lately. After being down I lift myself up because I don't want NHL to take any more pleasure out of my life. I want to embrace it and use it as a tool in my life to change me for the better. It may knock me down a little but not completely out!

Again....thank you.

Posted by Nicki on 8/25/2001, 3:06 am, in reply to "Life is not fair!"

Limbo - Dance Form As low as you can go then spring up quick step and salsa!!!

Posted by Jess on 8/26/2001, 2:09 pm, in reply to "Life is not fair!"

Dave. Wow. This board never ceases to amaze me. So many times, I am feeling or thinking things through my NHL lenses and it's just mulling around in my brain without enough cohesion. Then I come here and find a thoughtful post like yours, and I find myself nodding at my monitor "yes! exactly!" Thank you for sharing your thoughts, your strength and your perspective. I'm definitely saving this post.

Jess

Posted by Jen on 8/25/2001, 7:35 pm, in reply to "Re: Life is not fair!"

Nicki- I think I liked your definition best of all!!!  If those who live with Lymphoma are forced to live in a type of "Limbo" I think your description is very appropriate to how we live! Thanks!

Dave, I can sense that you are a bit down right now! I can sure relate to that - it ISN'T fair! But as I look around me, I see people in much worse situations then Mario and I, and many are facing them without the kind of support from family and friends that we have been blessed with! I am kind of a "Pollyanna" type who tries to look for the good in all and tries to maintain a positive attitude in all situations! Admittedly, sometimes I am more successful at it then at other times! Still, I find that by remaining positive and hopeful I am much happier and often times things go a bit more smoothly then when I let myself wallow in self pity (which we all do from time to time!)

You are right - life is not fair! But whoever said it would be? I would love it if cancer had never entered our lives, but it did! So we have a choice to make. I have had this same conversation with all three of my sons (ages 25, 23, and 9) at one time or another. Life is not always fair, but happiness is a choice! Some of the happiest people on this earth have very little, and some of the most miserable people have more money then they could spend in a lifetime! Some people blooming with good health spend an entire life in bitterness envying what others have, while a severely handicapped person barely clinging to life is a joy to all who know them. You can choose to be happy that, while you don't have everything you want, you have everything you need OR you can choose to be miserable because you are unable to see all that you DO have. It's your choice!

I don't mean to get on a soapbox or anything - obviously we are dealing with some pretty scary stuff here and we are bound to get "down" about it from time to time! But I think it is important for all of us to remain positive and, more importantly, to choose happiness! We, more then others whose lives have not been touched by cancer, should realize that life is precious and we need to make the very most of whatever time we will be given! And with the strides they are making in research there is every reason to hope that this may be longer then we dared hope for when we began!

So let's all Limbo - As low as you can go then spring up quick step and salsa!!!

(Tip: It's not the "How Low Can You Go?" that matters - it's the spring up - quick step and salsa at the end that's important!)