#92391 03-23-2009 12:32 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Friends, Like many of you, I go nowhere without my water bottle. In fact, when playing golf I even take it with me from the golf cart to the putting green in fear that I may get dry mouth and need a sip before the foursome finishes putting and I can get back to the cart. At the airport, I wait until the last moment in the security line before I discard my bottle, and then I hurry to the first little store to buy a new one. I am back to work as a criminal defense lawyer and because I cannot speak for long without taking a sip,of course I carry the bottle into every courtroom I enter. Occasionally I have run into judges or bailiffs that tell me that no drinks are allowed. I always explain that it is for medical reasons, and that is usually enough to satisfy the judge, and I am allowed to keep my water. Ironically I can go into a big, impressive federal court, and it is usually no problem, because they often have pitchers and glasses on the tables and expect people in court to drink. Usually the less important the court, the bigger the problem with water. Anyway, about a month ago, I appeared in a court in a suburban county a half hour away from Houston. This judge runs a particularly authoritarian courtroom. As I sat in the benches waiting for docket call, a bailiff came up and told me to take my water outside. I explained that I needed it for medical reasons. Once again, he ordered me to take the water out. I even pulled out a letter from my oncologist at MD Anderson stating that I needed water to function. At this point the guy rudely ordered me out of the courtroom in front of defendants, other lawyers and my client, making it pretty clear that he would forcibly remove me if necessary. I had to wait in the hall until my client's case was called. When I approached I told the judge that I needed the water for medical reasons and he just kind of shrugged.
Well, later I decided to do a little research on the Americans With Disabilities Act and I wrote a letter to the judge and the sheriff of the county, explaining that the Act applies to state and local governments and that if they ever messed with me again, I will file a civil righs complaint with the United State's Department of Justice under the act. After all this is a legitimate disability and I am sure that they would not tell a person with a cane to leave the cane outside. When I next appeared in that court and went to the judge's office before court to make sure there was no problem, I was told by the judge's secretary that " the problem has been taken care of. " A couple of days later I got the nicest letter from the chief deputy of the sheriff's office apologizing for the behavior of his bailiffs and assuring me that next time they will know how to properly deal with the situation, ie. if someone tells them that he has a medical problem...they will let the judge know rather than kick them out.
Oh well, a day in the life of a trial lawyer with the dry mouth!
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 216 | LOL! You may be in TX and I may be in IN, but I just know this would happen in some of our smaller county courts here. Good for you for educating them
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | You don't need to discard the water bottle at airport, just the water -- Empty bottle goes through security OK and you refill from drinking fountain inside security zone -- I have a favorite bottle and that's what I do.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Danny:
Thanks for the interesting post. Some people just like to throw their weight around. You are correct about the Americans with Disabilities Act, making it ok for you to have the water bottle. There are all kinds of disabilities out there. Some we see and many others we cant always identify. Glad everything turned out ok and you got a nice letter of apology.
I dont carry a water bottle but do take a McDonalds sweet tea with me to many places. One time I carried it into the movies without thinking. The manager asked me to discard it. I quietly told them I was a cancer patient and needed it, they said "sorry, no problem, go right ahead and take it in with you". They were very nice about the whole situation.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Now if you can just get us through the stupidest of all possible encounters- the airline TSA ban on bottled water. I have to throw my water away on the way into the line (which can take 30 min + to get through at LAX), then when I have my shoes (another stupid thing) back on and my stuff all put back together, rush to a store for the privilege of paying 3.50 for a new bottle of water.... which I might add is delivered in cases to the store without any inspection process at all. A terrorist could have an accomplice put a bottle of whatever it is they are afraid of in the shipment to the terminal store, and have the terrorist buy that bottle once in the terminal and carry it on the plane. No letter of necessity has ever allowed me to get past TSA and the micro brains that are inspecting children, old ladies and me. I even wear my ATP Pilot tarmac pass on my shirt (I am a commercial pilot) and I can't past this BS.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Maybe when they are asking you to dispose of the water, you could accidently TRIP and get them a nice fresh shower Brian.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | My water bottle has a place beside my feet at church on sundays. I just sip it to keep moist. They all know why I do it . Nice people and all like to talk to you. Then that gorgeous one comes in and makes the morning.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Brian, The same letter that refers to the water also says that I need Boost for nutrition. TSA won't let me on with water since I can buy some in the airport, but TSA just about always lets me on with a couple of bottles of Boost, after they read the letter. Once or twice they wanted to test it and I refused to allow it, before a supervisor let me pass. My punishment one time was to be hand searched...which made no sense at all.Another time I brought up the American with Disabilities Act and they let me pass. Most times, however, the TSA person just reads the letter, looks at the Boost and lets me go without a problem. Unlike many of us who have had to drink nutrition drinks, I still like the taste of Boost and I keep it in my office and in my golf bag for a quick, easy to swallow snack when I feel hungry.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | well... I am not sure if they still confiscate laser pointers. First time that happened (BC) to me I was pretty flabbergasted, to put it mildly. Slice the plane in half? Cauterize a bunch of Ewoks, eh passengers? Probably they have seen too many Starwars reruns... (Luke come over to the dark side). To be honest I would, not want that job!!
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I do a few court appearances a year as an expert witness and 2 years ago when I was very dependent on my water bottle especially when I have to talk a lot, I got all the way to the court room with my water bottle (the entrance guards did make me empty the bottle but let me carry the empty in and I filled it up at a water fountain). Once inside the court room I was told that I couldn't take it with me to the witness stand. I then had to apologize or explain my dry mouth speech as I didn't want that to be interpreted as nervousness. Wish I had known about using the ADA. To this day I remember how embarrassed they made me feel, not to mention how ineffective I felt with my DM testimony. My client prevailed so na na na naaa.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | On our last trip to Puerto Vallarta, before cancer, I bought a bottle of water at the duty free shop and they still wouldn't let me bring it on the plane. That could be a real problem now.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Dec 2008 Posts: 20 Member | Member Joined: Dec 2008 Posts: 20 | I have a little bottle cover like the ones to keep beer cold, or as we say in the south a "coooozie" that I keep on my water bottle, Dasani, or whatever I have that day. That way I can tell it's mine from others at work. I was wondering if OCF could put the logo on some, for us to order. That would make for good conversation when people ask, help tell our story: why we carry water everywhere, and keeps it cold if you like it cold ( I like mine room temp) and raise funds also! I know at the OCF walk in Nashville, everyone commented on the bottle cover. I tried putting one of the stickers on my cover but it wouldn't stay. Thanks, Kat
59 yr old female Rad Tech T2N0M0 lt tonsil IMRT x 35, no surg, no chemo. Last treatment 11/18/08. Dealing with L'Hermittes sign presently. Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That is a very good idea Kathi.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | We don't have the money to do this right now. But we do have some bullet proof you can put them in the dishwasher on your car windows stickers that you can have for free if you just contact Megan at OCF and ask for them. Please stick them on anything that you think will raise awareness. I have them on my lap top hard case, my rear window of my car, my plastic Starbucks coffee mug that I take to get refilled every day etc. The batch that we have right now are our logo, the batch that is being printed right now as we are running out of these, also has the web address around them.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | David, Your story is even crazier than mine. Most courtrooms provide a cup of water for witnesses, if necessary, not to mention a box of tissue for the weepy witnesses.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I had one Baliff that wouldn't allow me to bring my bottle in but had no problem with me walking in and out to drink. Those guys are on serious steroids. lol Man I just wish I had thought of the ADA thing. Owning a restaurant I have had many encounters with ADA related issues and I just never thought that I now could invoke those rules to my benefit. See lawyers ARE good for something!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I find the large waterbottles cumbersome when traveling, shopping etc. and since the small pint bottles of water are only available in bulk, I have purchased a .5 liter collapsable water bag from a sportsgood store. I refill it from a water fountain or with sink water after going through the line. The same is available on line from platy.com. I see that they also have a neoprene cover with a 1 liter bottle. I think I will order one and just not fill it all the way until I am ready to get on the plane. I will stick on one of the bullet proof OCF stickers.
I also carry a collapsable water cup in a small zip lock. These are available where travel accessories are sold. This is good for rinsing out your mouth and for taking medicine (there is a small compartment in the lid for pills.
Has anyone had experience getting past TSA with tubes of Biotene toothpaste? They don't make travel size. I can see this being a problem because I also use sodium floride toothpaste an hour before eating, the Bioteen after breakfast and other times in the day and MI paste before bedtime. The other 2 come in less than 3 oz tubes and are RX. Do they really beleive that anyone needs 3 different toothpastes??
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I just save a tube when it is almost finished, rolled up neatly and clearly less than 2 oz. A technical violation, but so far not a problem.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Have you all noticed how thin the new bottles are?? When you try to remove the lid, damn thing squeezes together and you get a shower and wet clothes .It's even hard to stand one up without it buckling.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | They are probably child proof packaging. Which tends to mean that I can not open it but a 6 year old child can.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | LOL How true that can be.I think these botles can be torn like paper.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | from TSA website at http://www.tsa.dhs.gov/travelers/airtravel/specialneeds/index.shtmwe are continuing to permit prescription liquid medications and other liquids needed by persons with disabilities and medical conditions. This includes: All prescription and over-the-counter medications (liquids, gels, and aerosols) including KY jelly, eye drops, and saline solution for medical purposes; Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition; However, if the liquid medications are in volumes larger than 3 ozs each, they may not be placed in the quart-size bag and must be declared to the Transportation Security Officer. A declaration can be made verbally, in writing, or by a person's companion, caregiver, interpreter, or family member. Declared liquid medications and other liquids for disabilities and medical conditions must be kept separate from all other property submitted for x-ray screening. For more information on these measures, please read our letter outlining this policy -- Changes in Allowances for Persons with Disabilities at Airport Security Checkpoints (pdf, 101Kb)
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Sep 2009 Posts: 2 Member | Member Joined: Sep 2009 Posts: 2 | Wow! The posts are helpful and humuorus. I drink constantly too, but seem to have less difficulty with the water bottles than the result of all that liquid and timing restroom breaks with meetings and such at work.
Latest of 4 TX 1/08 - never used tobbaco - very light drinker - going to ENT every 4 months and keeping the fingers crossed.
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | As far as Biotene toothpaste, they let me go through with the regular size tube just last week.
When we were flying out of Seattle after my surgery last month, they had no problem letting me in with the Ensure that was in my purse. I just told them I had it and I needed it so I could have something when I took my pain pills. They were actually quite nice to me, but made my husband throw out his coke.
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I posted the above before my trip a few months ago and am sorry that I did not print out the info from the TSA website.
I had a note on my dr's rx form that I needed to drink frequently because of a medical condition. I was carrying several pint bottles of water and making connecting flights. The first flight out the agent asked her supervisor who said the call was up to her. On the return flight the TSA agent was horrid and made us take apart our carry ons. We almost missed the flight. My recommendation: Rx note fr4om physician plus copy of the TSA regulations.
I put the Bioteen mouthwash in several 3 oz small bottles(enough for 2 days just in case the checked luggage got lost or the flight was delayed) plus packed a big bottle in a zip lock in my checked luggsge. I had a hard time finding 3 oz bottles with screw on caps. If I had used the flip ups I would have put tape across the top of the cap.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
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