#3047 07-20-2004 11:12 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | I always seem to post bitches & complaints, so I thought I better share my happy day & good feelings! I took my 3 daughters, 14, 10 & 8, to the biggest water/theme park in our part of the country, Wild Waves, yesterday!! We were there 8 hours!!!! What a blast! I screamed, laughed, played so hard I at times forgot I was "sick"! I recomend it to all!! The only thing I regret is the "Ring of Fire", an amusement ride that strained my neck a bit from the G forces!! Scared the crap out of me too! HAHA!! We really had a good time. You get a pretty good work out from climbing all the stairs for the big water slides too. Was able to eat a Subway steak & cheese sandwich for lunch & realized that was the first sub sandwich I've had since surgery with sensitive lower front teeth. Of course accompanied by a bottle & a half of water to wash it down. You know when I'm not wallowing in self pity & crap, life's not so bad! It's the simple things that elude us. I have to decide to live & things will get better. I have to see myself as the cancer survivor, not the cancer patient! I've been watching Lance Armstrong in the "tour" & that's what I'm talking about. That guy is a winner! He definitely is living life, huh? If you don't know his story, testicular cancer w/mets to the lungs & brain, waited way too long to get checked, beat the odds & came back to become winnner of the "Tour de France" 5 times & possibly 6 with this years race! I certainly don't need to give Lance anymore publicity, but I didn't know anything about him till I was dxed & somebody gave me his book "It's Not About the Bike". Very inspiring read. I didn't post this just because I'm doing so well, I'm weak from malnutrition, have been depressed, lost all the weight I'd gained since end of tx, my shoulder's screwed up permantly from neck disection, but damnit I won't & can't give up!! This disease brings with it so much sadness, but it will not overtake me! I hope I lifted someones day besides my own! Even if for just a moment.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
| | |
#3048 07-20-2004 11:59 AM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | Erik it sounds great that you were able to have what at least resembled a normal weekend, and could forget the whole cancer thing. A little over a year out now for me there's still the little "reminders" from the treatment, sore shoulders, aches and pains, etc, but they seem to be a normal part of life and unless I move a certain way that causes big problems I don't really notice it too much.
Eventually things sort of find their comfort level and you don't think so much of the battle you went through except at follow up time.
I find myself living life much more fuller now, spending less time sitting and more time doing. This whole experience was a wake up call, before I spent too much time just mucking about and not really getting anything done except day to day work stuff, then back in the doldrums.
Makes every day Thanksgiving Day in my life in a way, best thing I can do is to honor God and not waste the opportunity. Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
| | |
#3049 07-20-2004 01:00 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Erik, Theme parks must have been the perfect "medicine" for this weekend. My husband and I took our three youngest daughters (10, 12, 13) to Busch Gardens along with my 9 year old niece who was here all last week with us. I rode the Roman Rapids, and the LeScoot and have the pics to prove it, lol. The rest of the time I spent on the ground worrying over my daredevil 10 year old as she rode every horrifying ride in the park, talking attendants into letting her on if she was only an inch or so under the required height.......she's a very small 10 year old! Before cancer I would have sat on the bench wishing it would hurry up and be time to go home. I found out this weekend that I like the rides and I like laughing really, really loud.........and I especially like the way my kids look at me so excited when I get a little crazy. I perscribe a theme park at least once a month!
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | |
#3050 07-21-2004 03:24 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Erik, My "releases" have been to take the boys to Speed Zone, riding the karts and the dragsters. I let each of them win one run on the drags and then waxed them. I will always cherish the look on my 13 year old as he dusted dad down the under 5 second run for his first experience. His eyes were as wide as an owl and I could hear him screaming all the way down the track! I took my wife autocrossing a couple of times in her new Audi A4. We had a blast both times. A friend let me take the 13 year old out in his Honda S2000. I had the boy yelling through the corners and screaming as we spun out at over 70 mph. (It's pretty safe with no risk of objects, cars, etc., with helmets, in case you are wonderig at this point.) I am so glad you had the time of your (new) life! Nothing like a good fun time to take your mind off of what you've been through and what life truly has to offer! I am also excited for you, Minnie! I know you already live life to the fullest with all the competitions you get to experience with the girl but it sounds like you have yet found another wonderful thing to do! MAKE THE MEMORIES! Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | |
#3051 07-21-2004 08:55 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Erik, Great for you and your family! My husband and I went to Ocean City Sun-Tues. to stay with some friends...got to go cruising on there fun boat...I did a bit of tubing (which I had never done before)...Dan had to decline for now with the rad. neck dissection...might have caused more permanent damage...anyway watched the teens from our friend's family water ski, wafeboard, etc. We got to walk the boardwalk in the mornings and walk the beach at nite. It was truly the first time that I thought little about cancer in an year. As we all find out, it becomes the little things we are so thankful for now and it probably should have always been that way. Thanks for sharing your precious moments! God bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
| | |
#3052 07-22-2004 10:59 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | Congratulations, Erik. It's a great thing when you encounter a moment when you realize that you were so caught up in enjoying life that you forgot about being sick. May these be more frequent and shorter in between.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003. Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
| | |
#3053 07-22-2004 12:14 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | That's great Eric. I just returned from a trip to Maui, Hawaii with my girlfriend and her and my 2 teenaged sons. One day we zoomed down from the 10,000 foot high volcano on mountain bikes ( not uphill like Lance!) and another day we snuba dived, and my son and I played golf 3 times.
Believe me, at this time two years ago when I was in the middle of my radiation treatments, skinny, hurting and on a PEG tube, I never imagined that we would ever have good times like this again. Keep the faith.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | |
Forums23 Topics18,170 Posts196,933 Members13,106 | Most Online458 Jan 16th, 2020 | | | |