30-year Survivor

[CurlyBoy]

Hi - For the purpose of this forum, I'll call myself a Weggie. But in real life, I'm just Dwight, married 30 years, father of two adopted sons, and grandfather of six. I'm a foodie and an enophile (wine lover). I've survived this disease for over 34 years because I embrace life. My most healing times have been when I’ve taken control of my treatment and fired doctors who had insensitive and arrogant attitudes. Now I expect a partnership.

My heart especially goes out to newly diagnosed members. This forum has alot of support and information for all of us.

I started to write my extensive medical history, then decided to keep it simple Here are the facts:

1975-1978 Sick with sinus symptoms and nose structure change
Nov, 1978 Double Caldwell-luc biopsy sent to Armed Forces Pathology Institute
Jan, 1979 Diagnosis of Wegener’s Granulomatosis
1979-86 Cytoxan and Prednisone
1993 Reconstruction of nose and tear ducts
1994 Bladder cancer surgery (from extensive Cytoxan treatment)
2001 Sinus surgery for biopsy and staph
2002 Kidney failure, hospitalization, Cytoxan and later Methotrexate
2004 More Cytoxan
2004 Heart attach and three stints
2004 Hospitalized two more times for pericarditis and chest pain
Apr 2006 Hospitalized for hypertension
May 2006 Stroke – partial left eye blindness and right arm numbness
Nov 2006 Stroke – lost 90% vision in left eye
2008 Second heart attack and more stints
2008 Second bladder cancer surgery
2008 Severe pain over right eye, temporary right eye blindness controlled by Prednisone
2008 Skin cancer surgery
2009 Tubes in both ears to control fluid
2009-2010 Retuxan every six months

[elephant]

Wow Dwight you have been through so much but maintain a great attitude through it all. How is the Rituxan working for you? Do the tubes help control the fluid, I ask because I am in the same predicament ....starting to wean off prednisone and the ear/sinus issues come back.
Thanks so much for sharing ...you are a survivor!

[Sangye]

What an amazing list, Dwight. I'm so happy to have you as a member of this group. You've been through so much and yet you maintain a wonderful outlook.

[Natalie]

Hi Dwight you have been through so much but couldnt keep you down if it tryed , thumbs up ! this might be a silly question but what day in January were you diagnosed? .

[Lightwarrior]

Nice to meet you...I was diagnosed in December 2009, encouraging to meet a long term survivor with such a great attitude.

[Nancy]

Hello Curly Boy -
Wow.... I admire your tenacity - but your list also makes me wince just a bit..... I know a lot of new people always ask about the potential for a "real" life as if there were another option... Bless your soul!! Welcome to the group... Glad to hear your insight and wisdom as well as those really "sucky" moments if you need to talk out... I have been diagmosed for about 14 years in August of this year... Just started a new job ( working a 6 week contract position in a post anesthesia recovery unit) trying out the old legs and energy factor... I will hopefully be starting the Retuxan soon... Discussion about IV cytoxan again - I refused stated preference for oral form - Doc says that a NIH stiudy showed NO improvement with PO form and better outcomes with IV form.... That seems to be in direct opposition to the frequent statements about oral cytoxan is better...
Curly - I have been on cytoxan ALOT through the years and worry about both hemmorhagic cystitis as well as bladder cancer... to be treated twice - what a kick in the tail end... Glad you are here and proving again tonew folks and supporting the "old" folks... Life goes on - it's just a matter of attitude!!! I welcome you to the craziest/funniest bunch of people around...
Nancy

[jola57]

hi CurlyBoy, great to hear from another real survivor. I think we all (the newbies) want to know what awaits us in 5, 10, 15, 20 and 30 years. Knowing what can happen gives us the courage to face it when it comes and know that we will get thru it. I will always remember what you went thru and so what ever is in store for me will always be far less than could be. Thank you.

[Doug]

Hi, CurlyBoy! Long-term survivability is a question in the back of my mind. I have no fears about death. Life can be scarier! Ha! But one does wonder about quality of life issues, duration. Long term survivors like you help fill out the statistics one always sees in the descriptions of the disease. If 92% survive two years after diagnosis, fine, but I never came across real people like you until I found this website (thanks again, Andrew!). It encourages me, a survivor of nearly 6-1/2 years.