Hi Dave

Emile Lefebvre told me about your site and I had to have a look at it. You are truly an amazing guy, keep up the fight! I am going to give Paul Dupras your site address so that he can read it. I am not sure if you know that Wanda also has this dreaded disease. Dave you will be in our prayers as well as your dad.

Ernie

Wow!! Daver you've done a fantastic job. I read the whole site. Written with an easy style to understand. The occasional tidbit of humour adds an easiness to the page.  Mr. Taylor would be proud. Its obvious Dave that you are a special person.  Many people have
benefited from your outlook on life and the way you have lived yours.  I know going through my own battles and..realizing the attitude, strength, desire and example you have and show has helped me immensely with my situation.  They say that those who can handle tough situations and adversity are the ones who are faced with it.  Dave, best of luck.with
everything and thank you for the opportunity to read about your experience. It surely opened my eyes.  Now I understand. Take good care and keep in touch.

Your friend Kevin

Dave, Dave, Dave.....

 I just finally finished your web site on NHL, I had know idea what you went through none what so ever. I was in a daze actuallyspeechless (I know you find that hard to believe). Once it all sank in then I couldn't stop talking about it.I couldn't read it all in one sitting as time would not allow it, but it was like a really good book that you can't put down. I 've never had a hero, Daver but I do now......if that's ok? Your site must be an inspiration to so many people. The hours of work you must have put into it, I can only imagine!!! When I finished this letter I'm calling Paul to check this out (if he can finally figure out how to turn the puter on) ...just kidding.  Dave I knew you were ill for some time but I never knew how severe, every time I asked anyone they would always say "Oh he's fine" So for years I thought it was all behind you. Especially watching you come out to the hockey tourney's and play so well, your the picture of health as I've always seen you. Sorry now I didn't get to talk to you much at this past weekend tournament. I also didn't have the knowledge of your dads illness, I'm really sorry about that.... Well dave   HAT'S OFF TO YOU...... BRAVO TO A JOB WELL DONE KEEP UP THE FIGHT....YOU CAN AND WILL WIN ALL ROUNDS........

LOVE  your friend always
Marilyn

I was recently diagnosed with NHL. While searching for information on the Internet I stumbled across your site. It's nice to see a site with Canadian content. Your section on finding information makes it a little easier to find what I'm looking for even if its still all confusing. Thanks for the insight...............................

Jane

Hi, my name is Bill Wilson (no relation to the AA guy).  I just wanted to send you a quick note thanking you for your web page.  I was told on 6/21/99 that I had NHL and just found out on the Wed the 30th that it is low grade...blah blah blah (something about small cell blah, blah blah) stage 3. As you can tell I prefer things spoken in term I can understand easily, as I have the attention span of an earthworm.  Today I went back to my oncologist and had the pleasure of donating some bone marrow to see if it has the nasty stuff in it.  So it's hurry up and wait for now.  I really appreciate how openly you talk about the reality of your situation and your "sick" humor (pun intended).  I promised myself that I would never lose my sense of humor, no matter if it is often dark and could offend those around me. If you know of people that are in the same stages of treatment or diagnosis
that I am in and I can talk with them online, please let me know. I hope you are still doing well and once again, I thank you. 

Sincerely,
Bill

Hi David;

My husband John is currently undergoing testing for a definitive diagnosis for NHL - follicular lymphoma.  We have been going through this since April 15th this is when we were told of the mass surrounding his aorta and the enlargement of the lymph nodes in the diaphram.  He has had CAT scans, PET scans, bone scans, ultrasounds, bone marrow extractions both liquid and core samples, and the most intrusive of all a laparotomey to acquire a sample to biopsy.  The biopsy was
inconclusive because of the large of amount of scar tissue.  They will not do another biopsy because of the where the mass is located it is too dangerous. So we were sent to McMaster Univ. Hosp. in Hamilton for a second opinion and more tests.   We are currently awaiting the results of these latest tests and should get the results next week.

It has been an extremely frustrating and somewhat scary time.  We have right from the beginning tried to put a positive spin on everything so as not to scare our kids (we have four - 16-22) and other family members.  The stories of yourself and others have helped us put into perspective our situation.  I first found NHL Links while surfing looking for something that would inform me and provide me with an overview of John's disease.  I have to tell you it was like finding presents under the tree.  With the click of the mouse you can get any pertinent information you need without have to use search engine after search engine.  I have found the most touching and the most humbling the
personal stories of those who are either going through or have gone through some very rough times with NHL.   When I read about your Father's bout with cancer I was almost moved to tears by your observation that it is harder to watch someone you love go through than to actually go through it yourself.  I could identify with that.  I am routing for your Dad and hope that today's technology will help him win his battle.  My father passed away almost two years ago after suffering a cerebral hemarrage.  He still had a lot of life to live unfortunately it wasn't in the cards.  There was nothing they could do for him so even though your father has to suffer from the treatments he's undergoing at
least he has a fighting chance. 

Anyway I just wanted to thank you for putting together your web page and the Links it has proven to be a God send to us and I am sure for many others.

Jill

My name is Debbie, I was diagnosed with low-grade nhl in oct of 1996...Like you, I had never been seriously ill with anything.  My experiences all started in 1994.  I was starting to feel very fatigued and started having an abundance of  integestion.  I went to my medical doctor with these complaints.  At the time my doctor ran a complete blood workup and gave me some pills for my stomach. My doctor also examined me and noticed that my groin lymph nodes were slightly swollen.  She asked me if my nodes were always like that, she said for some people that slightly swollen nodes were normal.  Of course I didn't know if they were or weren't.  Needless to say all my blood tests came back normal and my doctor said the integestion was probably due to stress. These symptoms persisted for the next two years and new symptoms appeared, itching, bruising, dizziness, and flank pain.  I finally went to the drs with the flank pain.  The doctor ordered an ultrasound and found that my spleen was enlarged and that my blood levels had reached very low levels.  Needless to say my doctor sent me to an oncologist and that's when all my fun egan!!!!.........

I had all the usual tests, and found out that I had stage 4 low-grade nhl. I immediately started chemo in Nov. 96 and took the normal regiment of chop. I completed the chop at the end of feb. and was told that I was in partial remission.  This was due to the fact that my bone marrow test came back with lymphoma cells.  At this time the drs did not know if the cells were still reproducing. In September of 97 I relapsed with full blown lymphoma!! joys 

So, right away they admitted me into the hospital to under go cysplatnin.  I had two cycles of that and completed the chemo in dec. of 97.  In Feb. of 98 I received the rituxin to help clear my blood of those bothersome cancer cells!! It worked! Since March I have been cancer free!...

Next week Sept. 15th I will be going to fred hutch cancer center for stem cell collection.  I am so glad that I don't have to under go the high dose chemo for this! Just one more hurdle to get over. I really like your web pages, and can identify with them completely! I commend you for your fight and your high spirits.  Some times I still have those dark days, but I guess that's normal! I am always looking for more information on our disease, so if you hear or see any please pass it on!!.
Thanks Sincerely  Debbie Nickell
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Recently I was diagnosed with low grade NHL. I'm still in the confusion stage but having resources like your web page make finding information and understanding easier. I still really can't talk about how I feel but at least now I know I'm not alone.

Thanks. Paul..
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Dave, I read your website.  You should be commended for such a great job explaining something very scary and complex.  This is a great example of how someone should live their life.. So many people I know dont live life the way you do and they are perfectly healthy.

hats off to you!

Best of luck.
Ken McFarland.

Just got done reading most of your site. Loved the humor, chronology, and anecdotals. Cant wait to show my husband the fart lighting graphic too. I wasdiagnosed with nhl during my pregnancy last November. Still in watch and wait (worry, wonder, etc.). Hope all continues well. I will put this in the favorites file as a reference. Thanks for the hard work with the site!...................................................
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Laura Cleveland
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I never in a million years believed that I would find myself in this predicament. Having NHL has totally changed my life. I fight on with every breath knowing that each day could be my last. I however remain optimistic because without hope one has nothing. You think that after four years of fighting one would get tired of pushing on but I seem to be getting stubborn as time progresses. It is .
nice to be able to relate to others who are fighting a similar battle. Good luck!....

Randy.

After I was dx'd w/NHL just before Thanksgiving this year, I started Web searching and found your site.  Like others, it's given me a lot of insight.  While the uncertainty is a bit scary at times, it's good to know that others have gone through similar trials to what I'm in the midst of.

I'm scheduled for my third chemo of CHOP this week, but with a nasty cough, I'm not sure what the doc will think.  Ah well, I've been taking each day at a time.  Spent Christmas week from Wednesday through Saturday in bed with a drug reaction to an antibiotic I was given for a slightly infected Groshong cathether (I think it's kinda like the Hickman you had).  Stopped the drug after 2 days, and got better in two more. Go figure.

I'm feeling lucky that my cancer was caught fairly early, where it seems to have been only in my neck, and the growths are responding well to the drugs.  In less than six weeks, two have disappeared, one is nearly gone (from nearly walnut-sized), and the last is about1/5 or so of its original size.  I can only hope progress continues like this. 

I've said to a lot of people that at least I had to get sick now, since now is the best time to get sick.  Of course, a few years from now would be better, and more time even better, since medical progress is getting better over time.  I also tell people that if we can get my disease trimmed down for only a few years, I'll be in better stead, since, again, progress keeps on going.

I remember the time my aunt had with chemo 20 years ago.  She had blown veins in her arms, severe nausea, almost debilitating weakness for days after each chemo, and a lot of weight loss.  I've had none of that.  Zofram is a wonder...I've had no nausea at all from the chemo (any nausea I've had I've caused myself, thank you).  I've only had fatigue and mild constipation.  From the message boards I've read, it may tend to get worse, but let's face it.  Feelin lousy for the duration of the treatments is better than the alternative, and I'm not ready to go shopping for a box.

Thanks for the site, the links, the boards, and so on.  It's been a help and a comfort.

bill baxter

Hi Dave,

I just re-visited your site. Wow! You've really added a lot since my last visit to it! I'm really impressed with all the thought, caring, and hard work you continue to put into it. Thanks for being such a great inspiration for so many people! Also, a HUGE thanks for all your valuable contributions on the NHL Message Board!

Trudi

I was diagnosed in October with follicular small cleaved cell NHLStage II. Found in my neck and scalp. 20 Radiation treatments just ended last week. I really appreciate you organizing "The Best of the NHL Message Board". It's a wonderful site and very inspirational. I have a nasty cold and had to miss church this morning. My throat feels nasty and isn't healed yet on the inside. This site really cheered me up. Thanks for helping others.

      Kim - Western Michigan

I hope you don't mind me emailing you directly having found your site through links from the Lymphoma Resource Pages on the web.

My consultant has told me I've between 2-10 months to live following a year of unsuccessful treatment for NHL, and I'm finding it difficult to know what to do next..

It has been strongly suggested that I look at options for making the most of the time I have left. So now I'm trying to get my brain into gear to deal with all this. I have a zillion unformulated questions to ask myself and I don't know how to answer them.

The medics have confirmed my gut feelings, but I guess I'm not sure whether it has sunk in yet as I feel calm and collected (mostly), but my brain feels like a wheel stuck in the mud and spinning at 10000 rpm - whirling like mad but going nowhere. I'm working through the practical things like life insurance, finding a humanist funeral etc. so I'm doing something.....................................................

I really find it hard to believe that stage 2 lymphoma (two small sites in my neck & chest) in October 97 can lead to a death sentence a year later and an expectation/prediction of death by August next year. It seems ridiculous. It also makes it more difficult to think about what to do with what might be 2, 10 or 1000 months. Because it seems unreal I'm reluctant at this stage to chuck away everything I have to sit under a tree in Goa, yet the last thing I want is to get to the end having wasted/not made best use of the time I have.

This is surreal, heavy shit. Any advice or observations you have would be gratefully received.

Thanks in advance

Matt Molloy.
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Congratulations on your web site!! It is great, I have spent almost two hours in it! I am a Canadian resident, but now I am spending sometime in Spain after a year of being in remission of low-grade NHL. I hope that we all soon get the good news that they have found the cure for this and other types of cancer.

I admire your strengh, and I hope and pray that you go on to full remission, you deserve it!!.

God bless you!! Maria

Dear Dave,.

I have just spent over an hour reading through your website.  I lost my dad just a few days ago (June 11th) to NHL.  It had been a four year battle but like you, he dealt with it...not suffered from it.  He made me so proud.  So did my mum.  Information...truth and open, honest communication helped us all understand and support.  At 65, he was less physically capable of dealing with some of the treatment.  It certainly seemed that the cure was worse than the cancer sometimes.  I cried as I read and remembered the heartache of. watching him go through the stem cell transplant...and others...but he was a remarkable man full of fighting  spirit..

I recently married (A Canadian from Toronto) on my Dads birthday..and he walked me down the aisle.  The treatment gave us all that. Unfortunately, we also just found out that my brother in law has NHL too.  He is younger and fitter...a sporting guy like yourself..and I will pass on this.................
website to him and my sister to go through.  Their battles are just beginning. Thank you for your courage and witty wisdom.   Good luck with your treatment and I will check in periodically to see how you are doing. ..

My thoughts are with you Andrea Waddell Adelaide, South Australia