I had a direct DELTA flight from Frankfrut ($405 RT!), which was great.....However, I had just enough pain killer to get me through, with Excedrin and with a xanax.
Pain was tough, 10 hours sitting down, and add another 1.5 prior to flight in waiting area and another 1.5 waking up and shower and getting to taxi etc.
The wheelchair my daughter had order from Delta was not waiting for me in Frankfrut a/p so for others, call prior to leaving hotel and confirm it will be there.
The counter person had no idea how to call for a wheel chair person so I walked, bags in tow.
Not for comparison, but I think I know how it must of felt when you are marched to death!
Pain in every step. Remember, I had been taking oxycotin 60 mg a day to control pain in liver and belly mets and everywhere else. I had nearly run out, so on Monday, I had 30 mg remaining, and knew I could not take it on Monday and fly on Tuesday without it for 10 hours.
So Monday, I went through my personal detox in the hotel room. I am going to meet with my MD about a plan to get off the meds......Although I may need it (perhaps not with prrt?), the effects are terrible if you ever run out......I now know why people rob drug stores to get the meds. Its incredible! And all it does is make me feel "normal" and take the edge of the pain. And you have to take more to get the same effects.
So I made a decision to save the last of the meds for the Tuesday flight, and spent Monday in bed, sweating, vomiting, in more pain and more sweat. I knew if I went in the airport looking that way I would be arrested as a suspected terrioist, and then with a body is full of radiation from the PRRT LU 177 radiation treatment, oh yea, I would have never gotten out of there without the strategy of suffer and hold on Monday.
And then the other trick was, the flght was ten hours, in coach, sitting in full plane in the back. Luckily, I had aisle seat and the good lord made it where the middle seat was empty! Otherwise, I would have gone through the equivalent of a "waterboarding" for those hours.
Net, I wanted to wait to take the meds until I was on the plane and ready, if not the effects would run out in flight and I would be feeling really bad in the air. But after a day of sweating, fever, like and in bed in a hotel in germany (a lot of it I believe also was from the prrt, post hiroshima treatment, I think)
I got up at 8am (flight at 12pm), took a shower and prayed I would make it home in one piece......
I called for bag help and started my way down the aisle. As I waited for the elevator, I noticed I was sweating and in bad shape. "The hell with it" I said to myself and took half the dose to help my pain and get rid of the effects of the body craving the darn meds. It worked, after 20 minutes and at least when I got to airport, I could walk without feeling my teeth on every step!
Walked to delta counter, 15 minutes with a nice gentleman asking security questions for Delta and then to ticket counter. Asked for gal for a free upgrade to first class. I told her about my treatment, that I use to be "golden medallion" ff member, flown a lot of miles, told them I would eat coach food,.,.,,......NOTE! C card does not work on Delta in Frankfrut either.....
So coach I went! Asked about wheel chair my daughter had order a week prior?
"waz vheel chair"???? asked the pretty heartless counter German lady? And for the next 15 minutes she begain asking and looking up and trying to find a number to call to ask for a vheel chair. I look at name tag of nice German unfriendly counter Delta gal. It says "Trainee"..... I make a judgment call. I either will wait 45 minutes for heartless trainee to find out what she is doing, and wait for the damn chair to arrive or start walking. I left and walked......Delta counter lady relieved!
Slow walk to plane, no issues through customs, actually very nice, and then bought 3 bottles of water, and on to waiting area.
The plane was on time, take a seat, takes off, read about AIR FRANCE, not fazed at all, and take the rest of the meds to control the pain. It was just a general overall body pain but what bothered me most is a back pain that when I breath, and I still have it, it hurts! Not sure what that is about.... The liver and belly are in not so good shape either....combination of the trip and the treatment and pain med running out.....KEY LEARNING- if taking oxy or whatever meds, bring enough to last the trip ++. I had some bad days (in pain) during my stay and took more than 60 mgs therefore issue with running out...
Flight
I am not sure how one makes it to China or Australia on one of these 20 hour flights. This one was 10 hours and it was take off, then drink cart, snacks cart, water. I asked the steward an hour+ into the flight, is there anything but a map going to be shown on the many screens on the plane? They were not sure what the problem was with the video but would look into it....then they bring food cart (its free if you fly overseas!) finally fix tape player over ireland! I know, because all they had was map of where the plane was. Finally a movie, terrible, but at least something to take mind off pain, then another drink cart, then another movie, another drink and water carts, movie #3, more food, more drinks and water coffee, now TV shows on screen....Finally, 0 hrs or so into this thing, a message about landing! Made it to the USA, by god!
This time a Wheelchair was waiting in the airport! Got on and wheeled to customs. Passed the passport control w/o issues, then as I was going for my baggage, customs guy comes straight up to me in stern voice and says "sir, stop!, Have you been exposed to radiation, or treatment with radiation recently"? Amazing! I said "yes", and fortunately, Dr Baum had given me a letter on the treatment and about the potential radiation to have with me in case. And in this case, I needed it, or I would have been in serious trouble......
tip#2 make a bunch of copies. He asked for a copy to keep, and I let him have it as I had two others. I had put one in my luggage, on top, in case they opened it, the had another on me.
I showed him paper, the files, xrays, then he talks to me in German! I said, "sir, I wish I knew German these last 3 weeks"! He asks me "why did I go to Germany then"?????????
I then had to explain the issue of PRRT, carcinoid, etc in summary from. Not too bad really, and just doing his job, but main thing here is, if u r doing this treatment, make sure you get a letter and all the treatment files and papers are with you at all times, the other is a letter in your check in baggage. The customs guys have like a beeper type instrument they click onto their belt, which lights up red if someone is detected with radiation,
And it goes red far away. In my case the guy stated "this thing flashed as soon as you walked into the room"! And baby, I had the big one explode in me so I guess thier technology works. And I still have it inside me, I guess. The half life of Lu 177 is 6.5 days and I got "Y90" type uptake.
I then got stopped another time, this time by a different customs agent further away, and had to show him the same thing....I now see the person pulling the wheel chair, now getting a bit uneasy about me, and the load she is carrying, and I can see her "moving away from me".
I asked the customs guy if I was safe? And he said this just detects if you have any exposure to radiation, didn;t mean I was harmful . That made the person pulling me more at ease!
Got out bags, and put them back through to get through to the baggage claim which in this airport is 2 miles away from where I am about....or so! We started the trek with the chair to the tram, that was working thank god...,typically that multi million dollar machine is out of order.
I got to the baggage claim area, and there, waiting for me was Lis and her good friend Sue! My dream, when I left, had finally arrived! Hugs all around and go to pick up the bags. I was so excited, I walked to the parked car. I gave the wheel chair lady who pulled me, and now very worried, 10 euros (no us change) and advice to see her MD ASAP! >)
Got to car and had a driver (Sue! thanks)! Home in about over an hour or so due to traffic and distance! Started washing clothes quickly, and took pain med after shower......dinner at home for first time in 3 weeks! Then went to bed at 830pm as I am 6-7 hours ahead.....issue is I woke up at 4am this morning, Wednesday, June 3! Will be a while until I get into this time zone!
And I am in some overall pain, and not feeling so good. But I am home, in bed, in my house, which looks great, and now need to start on a 100 things I need to do, but may just need to wait a day or so, for me to recover, maybe 2. Its rainy and cool so that is good.
So that is story of trip....talked to daughter and son and son in law which made me smile.
Will talk to the third today in the pm.
Ohhhh baby, it feels so good to be in your own home from this.
Lets just hope I recover without incidents!
Thank you Dr Baum for taking me in and treating me when I was in desperate shape and in no where to run....
btw, still waiting for Humana Insurance to give me permission to be seen and treated by carcinoid specialist nearby! I got a letter from them while I was gone that said "my case for not serious or life threatening" so therefor, it would not be expedited! Its been 6 weeks since I asked and still no answer. This generally means a DENIAL. Unless you have someone in the company you work for in high rank pulling for you and helping you out, forget about it. Engaging an Attorney is the only way to work with insurance companies....."not serious enough" and 6 weeks of waiting......what the hell! And by now I know the outcome, it will be denied. Its the way the operate. Denied Denied Denied and go take a hike......no back up no nothing.
Jesus, even the US government gave me disability in a expedited manner with my disease status! Therefor, note my title on my the blog......I was told to "go home and relax" but it is difficult with this going on! I never saw the extent of the games and how they play it within the insurance business when you;re in this situation coming. I thought it was going to be something else. But folks, this area is full or unfair, and profit cost containment people that don;t give one dime about your health or anything else. Its too bad and now I know why so many people are bankrupt, even with insurance. The business is structured to put on in this situation, and as I stated, unless you have company pull or have access and can find a competent, ethical and inexpensive lawyer that is savvy in this world, you don;t stand a chance.
If anyone has any ideas to work with insurance conpanies such as Prudential Insurance and Humana, re: appeal to see an out of network hospital with a MD that specializes in my type of disease, and and understands for PRRT treatment.
Does anyone have any ideas or anything to help me please???? Write me please! I need it and fast. I have no idea what I would have done without Dr Baum FROM GERMANY coming into my life to help me. I would be waiting, with my feet as your saw them, infested with tumors squeezing the life out of me, as I am now aware after the thorough scan and readings at Bad Berka. Where in the heck would I be???
But today, I will lay down and try to rest, and try to feel better. Still seething from the letter a clerk in Humana that wrote which tells me my issue is "not that serious or life threatening"! help me someone, please!
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