* Login   * Register * FAQ    * Search
It is currently Wed May 22, 2013 12:50 pm

All times are UTC - 6 hours


Post new topic Reply to topic  [ 6 posts ] 
Author Message
PostPosted: Wed Jun 29, 2011 7:33 am 
Offline
Director of Support & Advocacy, LUNGevity
User avatar

Joined: Thu Jan 09, 2003 11:09 am
Posts: 14986
Location: Texas
http://blog.lungevity.org/2011/06/28/a- ... riathlete/

A Tale of a One-Lunged TriathleteJune 28th, 2011 - by Kathy Smith
So I am not exactly sure where this story begins but here is what you need to know:

I lost my left lung to a rare and aggressive cancer in 2005.

Nope, I never smoked.

I was DX a month after my 29th birthday.

And most importantly, Strong is the New Skinny!

SO most people get cancer and lose a ton of weight. The chemo diet is the most effective weight loss plan on the market but not me! No I get cancer and GAIN 80 lbs. As if that wasn’t bad enough, the maintenance meds are making it impossible to lose the weight now that I am cancer free. So I am in my early 30’s, down a pretty important organ and up way too much in weight! I would say to you the word frustrating, but it is a bit too mild. I would say it isn’t fair, but that would be whining. So I will simply say fat is better than dead. I don’t worry about the number on the scale. It isn’t all that important. What I do worry about is being healthy enough to run around with my niece and nephews, about being able to help my friends move, about playing inner tube water polo at the Y in the winter and about being able to climb the stairs at Gillette Stadium to watch my Patriots win. So I figured I better get the heck off the couch and start doing something.

I will be the first to admit that “doing something” and doing a triathlon is not necessarily the same thing, but I figured why not… I won’t win but at least I will TRI..(Get it? TRI?) The idea came to me about a year and a half ago. A friend was training for her first TRI and was having a blast. I have always enjoyed cycling and pretty much grew up in the water so swimming and biking seemed like a good fit. I thought if I ignored the fact there was a run at the end of the race that everything would be fine. I hate running. I really, really hate it. It is definitely a TWO lung sport! The O2 your body needs to keep pushing forward while running is amazing. The fact that anyone can do it is one of the miracles of the human body.

I attempted to do my first event last summer. It was a disaster. It was 95 degrees with 97% humidity. I threw up a couple times and have no recollection of the run, but they tell me I finished. I decided that didn’t count. I want to enjoy a triathlon not just be in it. So the Minuteman Sprint Tri in East Freetown MA became my new goal. I am not going to worry about time. I am not competing with anyone but me. (Okay and maybe the Doctors that said I couldn’t). I just want to jump in the water and enjoy the day.

I have been doing a lot of cardio work this winter. Combat Cardio to be exact. It is like kick boxing on crack. We work our butts off. Literally. I love it. I can’t keep up with everyone, but I love it. They have fancy functioning respiratory systems and don’t have to chart the meds they take. So I don’t worry about keeping up. Sometime I worry about standing up but not keeping up. Most of the women in this class have lost an average of 40 lbs since they started. I have only lost 15 lbs, but I am stronger than I have ever been. Not sure that being able to throw a mean left hook will come in handy, but I will put it in the tool belt.

Race day is June 18, 2011

It is the middle of May and I feel STRONG. My legs are solid and I can ride for hours without looking back. I love being in the pool. Swimming is far from easy, but it is fun. I am still ignoring the run, because I just can’t do it. I run for 200 yards and gasp for air. I can feel my heart beating in my ears. I try to run a couple times a week, but I don’t get very far. The cardio classes are helping. But running hurts, and I am bad at it. So I am staying in denial. I am okay with that.

It is now June 5th. Less than two weeks until race day. I woke up this morning dizzy and shaky. My throat is nearly swollen shut. I can’t swallow ice cream. I have a fever. I know that when I get sick I normally go all out. Not colds or sore throats for me. I get strep and pneumonia. My doctors tell me this time it is strep with both ears infected. My lung is clear but tight. There are 13 days until the Tri, and I am given 10 days of antibiotics. Antibiotics make it tough for me to keep food in. When I can’t keep food down, I always get a chest cold. I am going to do everything I can to sleep and rest and eat, but it is going to be a long 10 days!

Race week

Monday:

Still on the antibiotics but I am starting to feel human. I am nervous that my lung isn’t going to be ready for Saturday. The infection traveled to my chest at the end of last week. No pneumonia, but breathing was slow and stressful.

Tuesday:

In the water for the first time in 2 weeks and the last time before the race. My time is 2 minutes slower than it was last time, and I am weak and exhausted when I get out of the pool. Ugh!

Wednesday:

My nephew came by the house tonight and dropped off a special trikathlon (as he says) wrist band. I think it is one of those titanium things, but he told me it would help me stay strong while I raced. I needed that. I forgot this was supposed to be fun. I forgot having strep throat wasn’t the worst thing that had happened to me. I forgot there are a couple of amazing 6 year olds cheering me on. I got stuck in my own head for a few days and it took Jack about 2 seconds to knock me right out of that… Thanks buddy.

Thursday:

Last day of the drugs! A good night sleep and an excuse to carb load!! Bagels for breakfast. Pasta for dinner. I am feeling excited. Not ready but excited. The weather is looking great and the water is reported at 70 degrees.

Friday: What was I thinking? Whose idea was this? A triathlon? I. HAVE. ONE. LUNG.

I am traveling to the race site tonight with 3 friends that are doing a relay team. Thankfully, they are equally excited and nervous. Woo-hoo…


Kathy Smith
Saturday: GAME DAY!

I slept for less than 3 hours last night. There were a couple of drunks in the hallway around 2 am that almost got to see that left hook! I am feeling pretty good this morning. The hotel started serving breakfast at 5am. Funny to see a room full of spandex clad strangers inhaling food and scoping out the competition. I am scoping out the waffles. The competition doesn’t concern me.

At 6:10 we pull out of the hotel and are on the road to the race site. I am in race mode now. I am nervous, excited and still trying to figure out if there is enough time in transition for a nap. I set up my transition area like everyone else around me. At least I look like I know what I am doing. I need to get in the water before I start. I don’t own a wet suit. Thus, I am not wearing one. 70 degree water sounds great, but it is still cold at 6:30 in the morning. I jump in to discover that my assigned swim cap is defective and isn’t cut open. I scurry back to the registration tent to replace it and then back into the water. Some of these people are pretty serious. I hope I don’t get in their way. I am fully aware this is only a .25 mile swim, but looking at the buoys I am suddenly thinking we are swimming the English Channel. We are 15 minutes behind schedule. I don’t like late. I don’t like it one bit… They finally call the waves into place, and we prepare to hit the water. The ankle timing chips beep as we walk over the start mat. I guess it is official. I am doing a triathlon. As I am standing in the water waiting for the go, I feel something touching my back. I turn my head and there is a woman touching my scar! I pulled away and she looked at me like I was crazy. I said “excuse me.. Do you need something?” She looked at me like I was the one out of line and said “just wanted to know what happened to you.” I was annoyed yet suddenly grateful all at the same time. “I had lung cancer. Lost my left lung 5 years ago”. Saying it out loud as I stood there knee deep in the water felt awesome. I HAD LUNG CANCER, I LOST MY LUNG, BUT I AM STANDING HERE READY TO DO A TRIATHLON!! I want to scream it at the top of my lung but there wasn’t time. The clock beeped, and we were off! I let the crowd pass and started my swim. About three strokes in, I remembered that I hate fresh water lakes. They are dark and you can’t see the bottom. Panic set in quickly as I was instantly convinced that there were snakes in the lake and they were after me. Gasping is frowned upon when your face is in the water. Laughing while you choke on lake water makes swimming hard. The idea of one snake quickly turned to a pack of snakes and those snakes suddenly became cotton mouths. The pack was simultaneously chasing me and fleeing from an alligator. Let’s say that my breathing wasn’t exactly rhythmic. I was moving through the water but form had gone out the window. I could feel every breath in my lung. I focused on inhaling and tried to remind myself of the days when inhaling wasn’t a given. I could feel the muscles in my back pull as I extended past the surgical site. It took me a lot longer to get out of the water than I had hoped but I did it, I got out of the water. I ran into transition excited and still moving. Time to hop on the bike. This is my strong leg. I will relax while I pedal and regain my breath. I watched people fly through transition. I kind of laughed. I grabbed a quick granola bar and dried off my feet and got myself together before I took off. Once I started riding, I immediately felt better. I started to pass people. I started to talk with folks on the course. I had on my Lungevity T-shirt and people starting asking questions. How are you doing this? YOU had lung cancer? I was suddenly a rolling PSA. “Yes I am lung cancer. I ride for the parents you lost, for the friends that have passed and for those who are yet to know this battle.” I only grabbed the inhaler once and came into transition feeling like I was invincible. I hopped off the bike and switched to my running shoes, lost the helmet and grabbed my hat. A quick drink of Gatorade and I was on my way out of the transition area. Just about the time my chip beeped to let me know I was on the third and final leg I realized I had a 4 mile run ahead of me. So much for invincible. Denial is a great place to visit but a tough place to leave. I jogged. Then I walked. Then I jogged. Then I walked. This was going to be a very long 4 miles. One by one all those folks I passed on the bike ran by me. I was getting frustrated. I would try to run for 2 minutes and then walk for 2 then run again but it wasn’t working. I couldn’t get my breath and my heart was racing. A quick look at my wrist and I remembered that my niece and nephew didn’t care about my time. They didn’t care if everyone else on course was eating cheese burgers before I got in. I started to think about friends I have lost to cancer and to the pain this stupid disease has caused so many I love. I flashed back on the days when climbing a flight of stairs was a team effort. I thought about what I was asking my body to do and marveled at how well it was doing. I suddenly found myself at the mile 3 water station. The timing chip had started to cut into my heel and there was a nasty blister forming on the ball of my right foot, but I was almost there. I cheered for the cyclists flying by on the half iron man course and talked to the photographers and course marshals as I made my way to the finish line. I ran the last 150 yards. I crossed the finish line and was soon wearing my medal and grabbing a drink. I had done it. I finished a triathlon. I had fun. I didn’t pass out. I didn’t puke! I was pretty tired but really proud. The heavens didn’t open and there wasn’t a parade, but I did it.

My body has officially gone from the brink of death to the finish line of a triathlon. Who knew!


Top
 Profile  
 
PostPosted: Wed Jun 29, 2011 9:25 am 
Offline
Senior Member
Senior Member
User avatar

Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Who knew indeed! Kathy, what an amazing story. But then, I met you in Washington DC and already knew how amazing you are. I got goose bumps reading this. Tears in my eyes. Joy at your triumph! You rock!!!!!!

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25


Top
 Profile  
 
PostPosted: Wed Jun 29, 2011 4:03 pm 
Offline
Legacy Member
User avatar

Joined: Sat Jan 17, 2009 1:00 pm
Posts: 1070
Location: Seattle
Oh Kathy,
You need to go on the road with the Kathy show. Your talk in DC was riveting as was this story. Just realized, you made me late, but that is a-okay!
Stephanie

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice


Top
 Profile  
 
PostPosted: Thu Jun 30, 2011 8:33 am 
Offline
MODERATOR
User avatar

Joined: Fri Sep 19, 2008 6:08 pm
Posts: 1422
Location: Crowley, Texas
Good job, Kathy!

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com


Top
 Profile  
 
PostPosted: Sun Oct 02, 2011 1:06 am 
Offline

Joined: Sun May 22, 2011 3:47 pm
Posts: 4
Kathy sent me this story before she submitted it to the blog. Words simply cannot explain how inspired I am by Kathy's story. I feel that Kathy's story is one that can relate to many people, and in many different ways. I feel very lucky to know Kathy.

**She is also a very good 'Words With Friends' player!! ;-)**


Top
 Profile  
 
PostPosted: Sun Oct 02, 2011 8:16 am 
Offline
Legacy Member

Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
Tears in my eyes too. Awesome story, awesome spirit. You go Kathy!

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 6 posts ] 

All times are UTC - 6 hours


Who is online

Users browsing this forum: No registered users and 1 guest


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.504s | 11 Queries | GZIP : Off ]