Mofungo

I must have started at least a dozen blog entries over the past few months, but as with many things in my life lately, they remain untouched and unfinished. I meant to post at least a brief entry to let everyone know that I (we) are all fine, just busy and distracted. I know how you worry when we go silent and for that I apologize. So, the good news is there is no bad news to report.

Since September I have been working almost full time. Pat has been working full time and overtime. He loves his job and they love him. He’s been with Trinity for over a year and during that time we had not taken a vacation – yes we had each taken trips, but not for long and more importantly not together (to us the definition of vacation is 5 or more consecutive days away from home, together). So we decided the time had come settled on spending Thanksgiving in Puerto Rico. We had been there briefly in 2002 over a weekend just prior to my 2nd surgery, but we never left the resort and hence never “saw” the country.

This time we decided to cover all our bases – we went to Vieques for a few days of sun, beach, and snorkeling; to El Yunque the rainforest, for a few days of hiking and climbing; to Ponce for a bit of culture; and finally back to San Juan for some history. Throughout it all I took over 1000 pictures, ate mountains of Mofungo, and we relaxed or at least tried to. Mofungo is mashed plantains combined with a meat (chicken, steak, shrimp) – a staple of the Puerto Rican diet and perfect for my digestive system. Unfortunately I did not leave my bathroom issues at home, and as I expected I had the same problems I do at home. Nothing worse which was good, but nothing better either, hence how I know that there is no poison ivy in Puerto Rico! (The woods in both the rainforest and surrounding the beaches on Vieques do have lots of trees with nice huge leaves that provide perfect cover!)

I enjoyed having a real camera back in my hands and took full advantage of it, filling up two 2GB memory cards. Pat is a patient travel companion and sherpa, he carried the camera bag for me, understood when I screamed “STOP!” that it wasn’t because he was about to hit something with the car, but rather that I saw a photo op (that one took a few misunderstandings to get us both on the same page) and most importantly, he made certain I kept both hands on the camera and the strap around my wrist when I was near water. When he left his snorkel fins too close to the edge of the water and the wave came in and started to pull them out, I let them go! No repeats of Costa Rica and no dives into the water with camera in hand. Now I need to find the time to go through all these pics and find the 1 or 2 that I like. I hope to post at least a few up on this site soon.

We enjoyed exploring and realized how much we missed doing stuff like this. It’ll never be like it was in the past, I’ll always have to chose the least daunting item on the menu; there will be places we can’t visit because of lack of facilities; my motion sickness will force us to either stay in one place or find a way to move between locales that does not involve a car, a bus, a boat or a teeny tiny airplane; But that doesn’t mean we can’t travel. It may take more planning, more energy and more time, but it’s something we love and we’ll do it together as long as we can, we won’t let CANCER take yet another thing away from us!

And speaking of the “C-word” - the medical update that I know you are all waiting for. I have a CT scan scheduled for next week (Dec. 10) and this will be followed by my check in with Dr. Lange on Dec. 17. It's been 4 months since my last scan and blood work and I have appreciated the break. This month however marks several milestones -IF my scan still shows no sign of tumor, this will be the longest period I have gone without a recurrence since my diagnosis 8 years ago December 15. There is a lot riding on these blood and test results so I'm doing my best not to stress (HAH!). This also will be my first attempt at a CT scan doing only the prep the morning of the test and not the night before. I really hope they are still able to get a good read and in the future I can get away with only 15 ounces of the yummy barium, instead of 30 and a sleepless bathroom trip filled night prior to the test. I promise to post the results as soon as I receive them, and not disappear for months on end leaving you all to wonder where and how I am.

Also on the medical front a brief update on my other "issue". My diarrhea is no better, the DTO and codeine no longer seem to have an effect and my doctor is out of ideas. It was manageable in Puerto Rico, but I still have good days and bad days. When they are good, they are very, very good and I am grateful and when they are bad, they can be very, very bad. Lately I have developed a new issue related to the diarrhea about which I am not going to go into gory detail. I’ll just say that I have been spending a lot of time using a sitz bath; got a prescription for the strongest hydrocortisone cream available, and botox injections may be in my future. I've talked with Dr. Lamont and he is at a loss, so it's back to the research. I am seriously considering making some major dietary changes, but will wait until after the holidays to research this.

I've much more to say, but I'll sign off for now. I promise another post soon.

A funny thing happened on our way up Rt. 19

I feel we all could use a laugh, especially me after this past week, so humor has won out over potential embarrassment and I’m going to share the following story.

Background: This happened on Christmas Eve. Pat and I were in Arizona visiting my parents. Remember I had the smaller stent in and was taking pain medicine. It usually only bothered me if I was moving a lot and because it had been an exceptionally long day, I assumed it would bother me that night so I put my Demerol in my pocket before we headed out. We went to Tumacacori on Christmas Eve to see the luminaries. Route 19 is the highway that runs north from Nogales, Mexico to Tucson and is the road we took to Tumacacori. It’s pretty common for there to be a temporary border patrol station set up on the northbound side of Route 19. We passed it on the way down and commented that they’d probably shut it down before we headed home since it was Christmas Eve.

We got to Tumacacori where it was quite dark, except for the candlelight of the luminaries. It really was a beautiful sight like one we have never seen before. The sky was absolutely beautiful – more stars than we have ever seen. Someone pointed out this large, bright cluster and said it was another galaxy. As someone who can never find the Big Dipper, I took his word for it. We skipped the hot cocoa and cookies and headed for home. Since I had taken a single Demerol pill, I decided it would be best if Pat drove. I rode shotgun and mom and dad were in the backseat.

We begin our way north on Route 19 and soon see the bright lights of the Border Patrol station. They had not shut down for the holiday so we slowed down and got in line to go through. We were about 4 cars back when I noticed that one of the border patrol had a dog that was sniffing around the cars. Suddenly the dog charged back towards our car. We thought nothing of it and opened the window to talk to the guard. He looked in the car saw Pat and I and my parents asked if we owned the car. My dad said he did. Then the guard asked if the car had been in for service lately – my dad paused before answering and the guard continued with “because sometimes when your car is in for service the technicians may smoke marijuana in and around the car and that could be what the dog smells”. But dad’s answer was “No, hasn’t been in for service”. The guard asked that we drive forward a little to see what the dog would do. Pat nailed the gas pedal and the guard just about lost his arm as the dog lunged after the car.

We stop again and the guard asks us if we would mind pulling over. By this time we are all very confused and not sure what the dog smells, so we obey the nice man in the uniform with the dog with the big teeth and pull over. I can tell my parents are slightly upset by this and though it’s not a common occurrence for Pat and I to be pulled over we are starting to find it slightly amusing. A second guard has us all exit the car and asks some questions. “What medications do we use”, “Do we carry any medication in the car on a regular basis”, “Have we been down to Mexico lately”, etc. I see where he is going with the questions – he’s trying to find out if my parents buy their medications in Mexico. They answer “No” to all of his questions. Meanwhile the man and the dog are circling the car. When given a little leeway on his leash, the dog immediately jumps into the passenger seat – where I had been sitting. Suddenly all eyes on are on me because it’s apparent that the dog is not going to move. I sheepishly look at the nice officer, reach my hand in my pocket and pull out 2 Demerol pills.

Yes, I was carrying the Demerol lose in my pocket without the prescription or prescription bottle. Not my wisest decision. The officer asks what it is and when I tell him “Demerol”, he asks what kind of medication. “Pain medicine”. “Oh, that’s it then. That’s what the dog smells – it’s probably heroin based. Well, you all have a nice night”. I’m standing there thinking “that’s all??” No comments about carrying narcotics without a prescription? No “I’ll take those pills off your hands”? No “why are you taking this medicine?” So we all climb back in the car and continue the drive home.

Suddenly I find the whole thing very amusing. We start to wonder out loud, “how did that dog smell 2 pills?” “Did it really smell those 2 pills in my pocket or do my pores just emit so many different scents that the dog was just drawn to me?” When we stopped to think about it with the amount of chemicals running through my system – I’m sure I don’t smell like most people. Fortunately we didn’t have to explain this to officer. The rest of the drive home and vacation was uneventful, though we did avoid driving south for the rest of the trip. And as far as I know, none of my parents friends noticed us pulled over at border patrol.

I get my CT scan results today along with an Erbitux treatment and will also be making some decisions about how we will proceed with my ureter issues so it’s going to be a busy day. I’ll post again when I know more.

Happy Belated Thanksgiving!!

This also marks the one year anniversary of this blog (or at least of my writing of it). I let the one year anniversary of my surgery pass by quietly earlier this month. As most of you know, every recurrence I have had occurred between 12 and 18 months after a surgery. My last CT scan was clean and I don’t have another scheduled until January, so now starts my nervous period. I feel fine and we all (me, Pat and Dr. Lange) agree that the Erbitux is doing something so we are hopeful the next 6 months will pass by without a hint of trouble. July 2006 will be celebration month for me, but I’m getting ahead of myself so I’m going to change topics. I have so much to catch you all up on!

Apologies for the lack of an entry last week, but I have a good excuse – I had no internet access, no telephone service, television, and very little electricity. No, you didn’t miss the anything in the news about a insert catastrophe here (hurricane/earthquake/tornado/etc.) in Boston. Pat and I were on vacation and for security purposes did not mention this in previous blog entries. However if you happen to be one of my lucky friends you did get to hear me chant “I’m going to Costa Rica…I’m going to Costa Rica” for the week before the trip. Sorry about that. But now I can shout it out here – we went to COSTA RICA for Thanksgiving, specifically the Osa Peninsula region of Costa Rica to an eco-tourism lodge called Bosque del Cabo. It was amazing. We went with two other couples (thanks to Steph & Tom for allowing us and Mark & Yvonne to crash their vacation). It was incredible. The lodge is located at the edge of the rainforest; so much of the property is actually rainforest. Our “cabana” sat on a cliff overlooking the Pacific Ocean and we awoke each morning at 5:30 AM to the sunrise and the howler monkeys and macaws outside our doors. We actually slept with all doors open, mosquito netting down, and had no problem arising at this hour (though in Boston its hard for me to get out of bed at 8AM).

Our days were filled with hiking, kayaking, eating (not one bad meal the entire time), watching the wildlife we saw all 4 types of native monkeys – howlers, squirrel, spider, and cappuccino (ok, so they are actually called capuchin, but they are just so cute you want to drink them up like a good cup of cappuccino…) toucans flew over our heads and feasted in the trees next to our hammock (where I spent a total of an hour relaxing the whole trip) 5 books and only 1 got read, but I’m not complaining. It was awesome (did I already mention this?) It rained some too apparently a hurricane was hitting Honduras at one point and we got 2 days of rain from it, but that didn’t stop us from hiking and when we got too wet and tired we sat at the bar and learned Spanish from Marvin our bartender and new best buddy. He made us yummy banana drinks and mango drinks and coconut drinks (we let him use our allotment of electricity to run the blender that day…)

Pat has a great story about his sighting of a rare Harpy eagle that we’ll share if you want to hear. And I have a story about how my camera lost its battle with some huge waves in the Pacific Ocean, but I saved Pat’s $30 Teva sandals… However everyone else took lots of pictures that I will share when I have a chance and we bought some disposable cameras so we have pics too (we hope – they got wet too, but I think they are less temperamental than a digital camera, but we’ll soon find out).

Physically I held up just fine. Had to take some breaks now and then, but for the most part I kept up with everyone and didn’t have to miss out on any of the fun. My rash cleared up then re-appeared mid week on my eyes again, but this is nothing new. Even though I had a 3 week break from treatment the drugs are still in my system and so I still feel their effects at times. I had my usual diarrhea issues, but was able to keep it somewhat under control though we did manage to get the cabana whose septic tank was clogged with tree roots, so there was a tense day of no toilet, but fortunately we had friends in the next 2 cabanas so I was able to use their facilities rather than the surrounding trees. I was careful with what I ate but didn’t have to pass on anything – except the bean half of the rice and beans we saw at almost every meal. All in all I was pleased with how I felt health wise and how my body and stamina handled this trip.

Being in the rainforest and having it rain every day- most days it was a brief shower or it rained at night (we did have a cabana that tended to flood when it rained too much, but we didn’t even notice it since we were wet most of the time anyway…) meant that everything we brought with us was slightly moist at its driest time – even clothes that never left the suitcase. Our bathing suits and shorts took on a lovely moldy smell, but so did everyone else’s so it wasn’t that noticeable. Those other 4 books I didn’t get around to reading, well the pages are stuck together so they didn’t come back to Boston with me. We spent our first day home doing lots and lots of laundry, and soaking everything in bleach to kill the mold, but it was worth it. We went to COSTA RICA and we had a GREAT TIME!!!!

Now for something completely different

A special treat for all of you dedicated readers. No litany of side effects this week, no complaints about rashes or discussions on my bathroom habits (though this will factor in to the story I am about to tell). Instead I am going to post an entry from my travel journal. As you know I am currently traveling through the Baltics right now. The trip is going well in terms of the business aspect. It hasn’t been without its challenges however, but I have gotten through them and did not hop a plane home as I would have liked to do after yesterday.

Greetings from Tallinn – that’s in Estonia in case you were wondering. It’s my 3rd country in 4 days – 4th country if you count my 4 hour layover in Frankfurt, Germany on Sunday morning. This was the 2nd time I had a lengthy layover in Frankfurt airport on a Sunday morning. The last time was 1991 when I was enroute to Russia for Spring Break. Back then I (along with Heather and another friend) spent the whole layover (it seemed like 7 hours, but I can’t recall exactly how long it was) watching the departure board flip as flights took off. (think Wheel of Fortune before they went modern) When we got there, our flight to Russia was not on even on the board (and this board could list about 100 flights – told you it was a long layover). The reason I digress to this story is that I wanted to report that the same board is still there!! Guess it works better than any modern technology. Anyway, this time my flight was on the board, albeit about ½ down the list. I found other ways to occupy my time rather than watching the board – ate some breakfast, found a comfy lounge chair and walked around. I caught my flight to Riga without any problems.

Riga is a very interesting city – I was able to explore a bit on Sunday afternoon while the sun was shining. I took some pictures which I will try to link here later. Having not slept since Friday night (it now being Sunday evening) I figured I would crash hard. Oops – forgot about that jetlag stuff. I slept great for about 3 hours, then wide awake and playing solitaire for the next 3 hours. Back to sleep for a little while so I was slightly rested for my meetings. Work stuff was good. Busy, interesting, yada yada…Fast forward to Monday night.

The local publisher is putting the magazine to bed (going to the print house) so they are all tied up with that and don’t have time to entertain me. I don’t mind – figure I will eat a light dinner (having had a huge Latvian lunch – yummy picture lots of meat and horseradish), read my book and mind my own business in the hotel bar. All was going well until I turned around to glare at the obnoxious man behind me. Oops again – my mistake. I made eye contact and next thing I know he and his companion are forcing me to join them. We make some small talk (he is Swedish and his much quieter and nicer friend is Lithuanian). I am polite for a little while, but for some reason every time the Swede wants to make a point, he hits me. I have a black and blue on my arm to prove it. Once the conversation progresses to his view of homosexuality I am finally able to escape having lost about 45 minutes that I will never get back. I run as fast as I can back to my room. I have to get up at 4:30 to catch my flight to Vilnius, Lithuania, and I am looking forward to a bit more sleep. Now the story gets funny….

I fell asleep around 11pm (had to pack, shower, etc…so that I can get up, get dressed and leave). I set 3 alarms – 1 with hotel reception, 1 on the TV, and 1 on my cell phone. I’m always afraid of oversleeping and missing my flight. I wake up for a typical bathroom trip around 1AM. This isn’t unusual and I do my usual routine of not actually opening my eyes and doing everything by feel for fear of actually waking up. It was no use - I don’t fall back asleep this night! I try and try without success. I won’t take anything to help me because I can’t risk sleeping through my alarms so I read, play solitaire, go online, etc. I’m dressed and ready to go by 5AM and .in a cab enroute to the airport by 5:10. I’m first in line for check in as the airport isn’t yet fully awake. I go through security, set off all the alarms, and practically get strip searched. (Note to self, new shoes are NOT airport friendly). I spend my last 5 Latvian lats on chocolate bar and water. This will later prove to be the smartest thing I did all day.

I go to the gate and see the sign that says boarding is at 6:30AM. By 6:15 I am still the only person at the gate. I begin to wonder if I going to be alone on the plane. I make a bathroom stop and when I come out about a dozen people have shown up for the flight. We get on the bus, drive to our plane (seats about 30) and I soon realize that am alone in the front of the plane. I have about 12 seats to myself. The flight attendants do the usual spiel and I close my eyes and hope to sleep on the 55 minute flight to Vilnius. After about 10 minutes the pilot announces that there is some engine trouble and we’ll be delayed. I notice that every time they turn the engines on only 1 of the 2 propellers starts spinning. This can’t be good. 20 minutes later they have us “temporarily” deboard the plane. We sit in the bus and look at our plane. I notice they take the luggage out from underneath. OK, there are lots of other planes on the tarmac; they’ll just shift us to one of those. Nope, the Air Baltic rep boards the bus and says, “flight cancelled – go see ticket counter for refund.” No big deal to me, I’ll take the next flight. Oh, there isn’t another flight today. Hmm…this could be a problem.

Back in the terminal, we must re-clear customs because we had already been marked as departing the country and even though we never actually left. I am apparently the only non-European Union resident on the flight, so I have to traipse all around the airport with the customs agent to get my passport stamped for re-entry into Latvia. Once I am allowed back in, I realize I have no idea how to get to Lithuania and the travel department who booked my ticket last month no longer exists. I see a bunch of the people from my flight at the Air Baltic counter and manage to find the 1 who speaks English. He tells me that they are going to provide a bus to take us to Vilnius. It’ll be here in 5 minutes and should take about 3 hours. After about 20 minutes we finally convince Air Baltic to give us some food vouchers since most of us had planned on getting breakfast in Vilnius and now it looks like we won’t be there until lunch. They give us each a voucher good for 2 lats. I have spent the last of my local currency on a chocolate bar so I have to make my 2 lats stretch.

As I’m standing in line at the buffet figuring out how much I could get for 2 lats, I realize that I am about to go on a 3 hour bus ride and I don’t know what the bathroom facilities will be like. Eating a big meal suddenly doesn’t seem like a good idea. I play it safe and have orange juice and cereal and give my coffee, which they made me take to bring my full bill up to 2 lats, to someone else. After another 45 minutes the bus arrives. It’s a small thing, seats about 15. Our numbers have dwindled to 9 hearty souls who have to get to Vilnius that day. I settle into my seat, pop on the iPod, close the eyes and am ready to drift in and out of consciousness as we drive. It was a good idea, but not going to happen. I remember, a little too late, that I get car (specifically bus, ask anyone who went to Ireland with me) sick. I can’t handle any seat but the front seat. Guess where I’m sitting? Not the front seat. I move forward on the bus, but it doesn’t seem to make a difference. Fortunately with my eyes shut, it’s not as bad. This just means I don’t get to see any of the Latvian or Lithuanian countryside. I never actually fall asleep though because it seemed to me that the road we were traveling on was not paved. It certainly was one of the bumpiest rides I’ve ever taken. I’m grateful to have my water and chocolate bar to soothe my stomach. But I don’t want to eat/drink too much not knowing if the bus is going to stop for a potty break.

We cross into Lithuania and once again my passport is the one that holds us all up. Not long, but enough that it’s noticeable. Soon enough I’m stamped and approved and we are on our way to Vilnius. After another hour the driver miraculously stops at a rest stop. I have my iPod on so don’t really know if he was asked to stop or how this comes about, but soon enough the 6 women on the bus are forming a “queue” for the ladies room. Everyone buys some food and drink, but I am lacking in Lithuanian currency and not knowing how far the next bathroom is, so I refrain. Besides I still have my duty free chocolate bar to eat. (Not to mention the codeine and DTO to keep it with me for awhile).

We are soon back on the road and finally, it appears we are on highway, or at least a paved road. No more kidney rattling roads – thank heavens! I am able to keep my eyes open for small pockets of time (thanks to the drugs in my system I assume) and the countryside, well it looks a lot like countryside in rural Massachusetts, or New Jersey or just about anywhere there are cows, fields, trees, and the occasional horse. Really nothing that screamed out “You are in the Baltic Region of Europe”. Not sure what I was expecting, but it certainly wasn’t a view that looked like Route 2 in MA.

Two more hours to Vilnius according to the driver, but judging from the previous time conceptions I am expecting 3 or more hours. There are times we are speeding along and suddenly the car in front of us stops – I still haven’t figured out why – maybe the driver saw something I couldn’t see. I seem to be the only one on the bus who will actually be on time for my meeting in Vilnius. Mine was set for 3pm and if all goes well, I should be at my hotel by 3. However this means the 5-6 free hours I was expecting to have for work, and more importantly sight seeing in Vilnius are now dwindling. I begin to rationalize and consider the bus ride between Riga and Vilnius, my “mental souvenir”. Oh yea, there’s a picture I’m drawing in my head, but not one I will share with anyone.

Well, I’m pleasantly surprise to discover that the bus driver was right and we pull into Vilnius at 2pm – 4 hours after we left Riga and 6 hours after we were supposed to get there. I get dropped off at the airport, find my way to my hotel, have time to log on, check email, and then get a call from Bronius that he is in the lobby. I am glad that I made it here before him – if only just barely. I tell him about the bus ride and he laughs – apparently it is a joke with Air Baltic that their planes do not work a good portion of the time. I’ll keep this in mind with my next trip! The rest of the afternoon/evening pass quickly with work related activities – and a very delicious dinner that more than made up for my chocolate bar lunch. I got back to my hotel with enough time to shower, answer email, and pack up for my next 4:45 AM wake up call and airport experience. (Actually I slept till 5AM, and my flight between Vilnius and Tallinn went off just fine – but I will still chalk up the previous 24 hours to “experience”).

And now, it is the end of the day in Estonia – my day has been uneventful and I am grateful. I am looking forward to a solid night’s sleep and one that lasts past 5AM.

Hope you all enjoyed this little escape from the mundane!!

Silence can be a good thing

We just returned from 6 gorgeous sun filled days in Curacao. It was paradise – we snorkeled, relaxed on the beach, indulged in a few happy hours, watched the sun set, and had a great time. It was a much needed escape and I was thrilled to feel well enough to take the trip. We chose Curacao because its part of the Netherland Antilles, is known for its snorkeling, and is far enough south in the Caribbean to guarantee warm temps. We were not disappointed. You can see our pictures here.

I had concerns about snorkeling – after 4 surgeries, I have many adhesions. They can be removed surgically, but that just creates new ones. Pain meds don’t really work either, so I decided to take a slightly different approach. I’ve been receiving reiki treatments over the past 2 months to ease some of the pain from the incision and the surgery, so I asked if it would work on adhesions. Reiki is a holistic healing technique. The body's energies are balanced to loosen blocked energy and promote deep relaxation creating equilibrium and harmony on all levels. It’s very calming.

My fears were quickly put to rest – one toe in the warm turquoise sea and I forgot all about my surgery. The reiki treatments seemed to do the trick as well. I had very little pain from the adhesions – even after hours of snorkeling.

I have an appointment later today with Dr. Nauta, my surgeon. I wasn’t supposed to follow up with him until later this month, but I decided that the 20 plus pounds I have lost since the surgery, without dieting is cause for concern. I’m hoping we can find a reason for my problem without any invasive procedures. I’m rooting for a pill. I’ll keep you posted.

Ireland

Jean's photos from the Ryan tour of Ireland are now available!

You can view the photos as:

1. A Gallery. Scroll through each page of the gallery and click on the photos you want to see enlarged. You can comment on the photos, by clicking on the picture, and clicking the Add Comment button beneath the photograph.

2. A Slideshow. The slides will automatically load and scroll through all the pictures. With a fast Internet connection, it takes approximately 10 minutes to go through all of them. With a slower Internet connection, it will take longer. (You can't write comments on the photos when it's in a slideshow.)

Bangkok

Finally, we have pictures from Bangkok ready to view! We were in Bangkok from March 18 thru March 23, 2004.

There are two ways you can look at the photos:
1. As a series of galleries. You can scroll through the galleries and click on the photos you want to see enlarged.
2. As a slideshow. The slides will automatically load and scroll through all the pictures. With a fast Internet connection, it takes approximately 10 minutes to go through all of them. With a slower Internet connection, it might take twenty minutes.

You can also comment on the photos, by clicking on the picture, and clicking the Add Comment button beneath the photograph.