Taking PV on the road.
by Moshe Leib
My name is Moshe, I am 53 years old from Florida and I was diagnosed with PV in 2000 after a gout attack. In May this year I flew to Colorado and Arizona for a 10 day vacation with my wife Lynn and teenager daughter Mel and spent three of those days in the ER (I really scared my ladies and myself). I had chest pain, shortness of breath, I felt helpless, fear for my life. I had panic and anxiety attacks.
It was horrifying and terrifying at the same time and it came from nowhere, no sign, no warning, nada!
I never had a panic attack before, I was your regular 2000 diagnosed MPN patient with 5-7 years to live and nobody in the world knew what I had. The only thing that I knew was that my grandfather died from a blood disorder two years before I was born. From 2000 on I was on phlebotomies for 3 years and then on HU which controlled my counts and my spleen size. I will let you know what I did in the past seven years in a different story I had tons of fun and I was ready for the end of my life, ready to “go.
‘ While on the way from the ER in Scottsdale Arizona to the airport, I started to ask myself some questions like, what changed? Why do I panic? What should I do about this? How is it affecting my family, me? Is it the end of the road for me? I needed help, I was confused, in pain with a huge spleen (37 cm last CT!), my brain was scaring me and I did not have any answers.
I finally boarded a flight back to Florida (they let me board first, I guess it was the way I was looking with the hospital tags attached to me, not shaving in days) and I went from the airport to my hematologist waiting room in Florida.
He did not have any answers that I didn’t know already. I did some research and I found some possible answers from the Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India. Here is the abstract for you to read (it’s not only call centers in India} :
Somatic symptoms can occur in disease-free cancer patients. The causes of such symptoms in cancer can be many and varied. These could be due to anxiety, depression, somatization or a manifestation of illness behaviour. Somatic symptoms can also arise out of treatments for the cancer like radiation treatment or chemotherapy. Cancer related somatic symptoms have cognitive, psychological, and physiological causes, each of which is amenable to treatment….Common somatic symptoms in cancer have been found to be pain, fatigue, anorexia, tiredness or exhaustion, weakness, reduced energy, lethargy, and tremors. Breathlessness, muscle pain, dizziness, and palpitation are common symptoms of anxiety and panic attack which have also been noted in cancer patients….symptoms in cancer respond to counselling and psychopharmacotherapy.
I also talked to a friend of mine who is a retired Dr. with 15 international publications (in a different field) and to quote him “It’s difficult for a scientist to demonstrate a connection between MPN and a panic disorder or anxiety but it is very possible”
So the simple answer is YES, Panic disorder, anxiety and depression can happen to us too. My hem suggested that I should talk to someone and referred me to a psychologist who diagnosed me with PTSD – Post-Traumatic Stress Disorder. (A simple Google search of PTSD & cancer will come up with good information),
In the next few months I learned how to handle and control my panic attacks. There are many different techniques how to fight and keep under control a panic attack and my psychologist helped me in every step of the way (I have her phone number on speed dial). Sometimes I was successful and sometimes not so much, however, I started Yoga classes and Qigong which I really enjoy, I also go to physiotherapy 3 times a week and I finally got a GP. I felt that it was time to put all my problems with one Dr. who can manage the “all around” aspect of MPN. (Ok, she made me walk with a cane, so what?), and the best result for me was that I did not go back to the ER again, this was huge success for me!
But there was one thing that really bothered me, it was the bad Colorado/Arizona vacation, I still had a bad taste in my mouth from it and I wanted to travel again. When I told my psychologist that I want to travel again, she first looked at me with this look of “no way!” But then she said something very interesting “Why not, a long trip is many short ones” and from here on we started to try and figure out different scenarios of what could happen and how I should react to it (needless to say, we did not cover everything).
My wife Lynn has a very stressful job and she needs to get out from time to time, simply push the off button for 2 weeks. We started planning a vacation. Lynn said she was never in Maine and she wants a fresh lobster, I had my own hidden agenda for this trip, if I will make it to the Lubec light house, I can erase another thing on my bucket list, that is to be in every spot connected to a road in the USA. I have been in south as Key West, FL, north as Perdue Bay, west as Mirror lake in Denali national park, and now I am going to the most eastern point in the USA.
We went to the library and got books and DVDs about Maine, maps, we bought camping equipment and tested it in the living room, a new GPS, and we got really excited and could wait to hit the road. It is about 1600 miles from Florida to Maine and we wanted to do it in 4 days times 400 miles a day, easy ride.
We left Clearwater Beach Florida with a fully loaded car (The only thing we left home was our cats, under supervision) on a Friday afternoon heading north to a place called Newry, Maine, 1600 miles away. The plan was to drive about 400 miles a day for 4 days and rest in motels along the way, it’s a good plan we thought.
After driving for couple of hours, we decided to stop for dinner and after that to drive for couple more hours and go to sleep. Needless to say, it didn’t work out for us as planned. We finished dinner and got into the car, the sun disappeared long ago and it started getting dark around us. It was my turn to drive and after a few short miles I got a severe panic attack that totally changed our plan (remember, with MPN you have to be flexible!).
What I think happened is that because I didn’t drive at night since my last big panic/anxiety attack about four months earlier in Phoenix, AZ, it just came back to me without warning or time for me to control it. I was holding the driving wheel with all the power that I had in me, I told Lynn “I am having a panic attack” which she answered “what do you want me to do?”, so I said “nothing, I will get over it, just watch the road”. After about 10 minutes I felt a little better and after about 20 minutes it was gone, however, this attack scared me pretty much and I was thinking about turning around and driving back home.
While all this happened in my head, the miles were rolling and we were making good progress. It felt good to drive and I didn’t want to stop. Lynn suggested to continue and see what will happen, we have a new GPS with a special feature “where am I” that will show us the nearest hospital immediately. I agreed and Lynn, after making sure that I was OK, took a nap and I continued to drive all night long, thinking about what happened and all the stuff that makes our MPN brain so crazy.
Latter on when I was at home and went to see my psychologist, she was of the opinion that I had a “flashback” to the time and place when I felt a panic attack at night driving to the hospital.
We continued to drive and finally stopped in Connecticut for the night, we were so tired that we crashed in no time. We knew that we had only a few hours left to drive, so we took it easy. The next morning we drove to Newry, ME (ok, we stopped for lunch at Little Jacks for a lobster roll) and set up a tent in beautiful camping grounds in the Maine mountains. I was able to start a camp fire and cook dinner, so we were happy campers. At night it started to rain and I didn’t feel comfortable in the tent, it was small and confining, not the best for someone with panic disorder like mine.
The next day the sun came out and we did some waterfalls hiking, the sign said 20 minutes hike but it took me an hour to get to the top. It was hard for me to climb up the mountain but the view was awesome. We went to a few waterfalls in the area and latter on came back to the camping grounds. I tried to start a fire so we could cook dinner but it was raining so hard that I gave up on the idea and went to eat in a restaurant down town a few miles away (yes, lobster again).
We came back and it was pouring rain outside, we couldn’t even talk to each other in the tent because the noise of the rain. The forecast was rainy for the next five days in the mountains, so we woke up in the morning, packed everything in the car, everything was wet, the tent, the bed, us. It took days to dry out all the camping equipment.
Now, you have to remember, I was determined to have the best vacation ever after the previous fail vacation. I wanted my wife to have fun and relax, have good time. I decided to drive to the east side of Maine, the forecast was sunny and it was only 3 hours away.
We arrived at Bar Harbor and Acadia National Park, this is really beautiful and a must for everybody. We rented a beautiful house on 4 acres of forest with a stream along the property line, fire place, grill, and 10 minutes from downtown. We unpacked the car and put everything on the lawn to dry. It was lunch time and we went for a lobster again. I would say that for 10 days we lived on 2 lobsters a day, we got them from the boat for about $4 each for soft shell lobster, we are experts now on how to steam a lobster and what kind of lobsters there are.
We rested in Bar Harbor for a week, taking some tours to parks and places as far as Eastport. We met many nice people with the opinion that Maine starts east of Bar Harbor which we agree with and they showed us around and told us where to go (that’s how I found the DNA sculpture).
I did not have a panic attack the whole week in Bar Harbor, Lynn enjoyed her lobster diet (she paraphrased on 2 lobster a day keeps the Dr. away!), rested and took some beautiful pictures of the area.
We even went to a pirate fest and a “bed race” which we have never seen before in our life. After a week in this area, a cold front was about to come in from Canada and we decided to start driving slowly south back to Florida. We stopped in Hampton Beach for a night and ate a double lobster at Ray’s which was fantastic and a good end for a beautiful vacation. All together it was a good trip, a good pay back for a previous trip going bad.
My conclusion is that if you have MPN, you CAN and SHOULD travel. Just plan your trip carefully, don’t drive more than a few hours a day, stop a lot along the way, don’t overdo anything, take your medication on time, put your medications in two different places if you lose it or it get stolen (insurance will not pay!) relax and enjoy, do not do camping, it’s not for us, don’t go alone and learn how to control your panic attacks. Eat lobster! And take along someone a lot like Lynn.