Radiation Update: Over Halfway!

Once Mark and I found out about his treatment plan after the last operation, we did two things: we booked our return ticket to Tahiti with a tentative date of August 7^th (getting back on Irie August 8^th) and we called Hope Lodge - the American Cancer Society’s accommodation center – in Boston. The plane ride had to be scheduled, since August is a very busy time for (European) vacationers visiting French Polynesia, but our trip will depend on how Mark is doing. Calling Hope Lodge resulted in our names being put on a waiting list. The center offers only 40 rooms and there are MANY “out of the area” cancer patients receiving treatment in the high class institutes of Boston. Without solid plans (we are getting used to that), Mark started the first of his 19 radiation treatments on June 26^th and is now over halfway.

The treatments

Every workday, we make our way to Dana Farber in Boston, where we usually don’t have to wait very long before Mark meets “his” machine and crew of technicians and receives his radiation therapy. I stay in the waiting room without him for no more than five minutes, while he gets zapped for about two of those. Then, we are done in the hospital. Once a week, a technician takes an X-ray of his chest, and on Tuesdays, we meet with Mark’s oncologist, Dr. Harris. Sometimes, the machine is delayed and once it has been “out of order”, causing a longer wait and Mark being directed to a different machine. The waiting room in the radiation department, albeit cold, is pretty comfortable and offers free drinks and snacks.

Mark’s side effects so far are relatively benign. He gets very tired every afternoon (“fatigue”), has a tingly sensation in his mouth, once in a while his chest hurts, and sometimes his throat feels a bit “coughy”, as if his asthma is acting up. The last few days, his chest area has turned red; it looks sun burned, and the surgery wound under his arm is painful because of a skin infection.

The transportation 

Thanks to his insurance plan, Mark can use a transportation service to bring him (us) to his daily appointments in Boston, 43 miles away from Newburyport. We have to book our trips three days in advance and two (!) hours before the appointment, we get picked up at home for the drive into the city. We scheduled Mark’s treatments around noon, to avoid rush hour traffic either way. We get to Dana Farber way too early and call the service when we are ready. Then, we are picked up directly, or after more waiting, and brought back home directly or after waiting for other customers and some detours. We appreciate the service, but it results in 4-6 hours of (uncomfortable and tiring) time loss, every day, for a five minute appointment in the hospital! The drivers of the contracting company (Nurse Care) are friendly, courteous, caring and respectful; the main female phone operator of the organization CATA on the other hand, has made our life harder and more stressful than it should be right now…  Let’s believe in fate! :-)

Carol and Stan have been great letting us use their car whenever they don’t need it, so that has become our preference of transport, almost half of the time. The drive into the city takes about an hour without traffic. We have a free parking spot reserved for radiation patients in the hospital garage, hop inside for a 1 minute walk to the right department and – usually – “quickly” follow the return procedure. This way – even though we spend two hours in the car which is quite tiring - we only lose about three hours a day dealing with this “cancer nuisance”.

The lodging

Halfway through Mark’s treatment, we were still staying in the separate room above Carol and Stan’s garage, going on two months of being there. It is not always easy for parents to have their adult children back into their close quarters, or for those middle aged kids to live with their parents again, but we have all adjusted well and so far everything has worked out splendidly. So, I hereby wish to thank Mark’s parents again for letting us stay with them and being their “live in help” as Carol says it so fondly, and for letting us borrow their car.

Then, a couple of days ago, we received the good news that there was a room available at Hope Lodge. Excitement is probably not the best word to describe it, but we felt some relief and joy to be able to live in Boston for these last ten days. It will make our lives so much easier and less annoying, especially not having to deal with the transportation vans (or phone lady) anymore and putting our “extra’ time to good use. We can walk to the hospital, a nearby park and a grocery store and the place is really well set up for our (and the other patients) needs. More about Hope Lodge in a next blog!

The entertainment

Two weeks ago, we had a wonderful weekend at Ryan and Denise’s place (another blog and more pictures to follow about this event; I guess I am a bit behind with my news here - life has been busy…). Lately, Mark has not been feeling great, so we haven’t been socializing or doing fun stuff except for 4^th of July weekend. We had lunch at home with Mark’s nieces Jo and Suzy, we watched Belgium lose to Argentina in the World Cup, we spent a day with our friends Scott and Lisa at the lake and we went for a long walk to Plum Island that Sunday to get some exercise and see brother Tim’s family.

Now, our time here is winding down, but for some reason, we cannot think about what is next for us and our future quite yet… Other than ordering a lot of stuff for the boat!

The babies encouraging Belgium in the early stages

Lily watching Belgium defeat Russia

After Belgium's win against the USA

Jo and Suzy visiting for lunch on July 4th

Going for a boat ride on the lake (July 5th)

Ueli on Scott and Lisa's boat

Looks like fun... one day! :-)

Kids and adults tubing on the lake

Appropriate 4th July dessert!

Camp fire at dusk

Shooting off fireworks is legal in New Hampshire

And, they do a good job of it in July!

Passing the local airfield on our walk to Plum Island

Lonely, abandoned house along the walk

Beach across the street from Tim and Kristen's house

Petting Oliver, our sweet and hairy friend

Lily being cute with a hair brush

Lily and Cera

 

Food and Entertainment

The weather has cleared up a bit, here in Hanamoenoa, Tahuata, but a decent swell is still rolling into the bay, making landings with the dinghy on the beach quite challenging. The manta rays have not come back (yet) and the weather has been too crappy to go for a snorkel or a dinghy excursion. This means that our time had to be filled with other entertainment.

One evening, Valentine and Thor on SV Yum Yum, who we briefly met in the Galapagos months ago, invited everyone in the bay over for "movie night". Loaded with popcorn and drinks, we all gathered in the cockpit of their roomy catamaran. Thor had installed a massive screen and soon we were enjoying the movie "Chocolat" with superb quality, movie theater worthy! Only, we were in an uninhabited bay in the middle of the South Pacific. The only disappointing part was that, while looking at the giant representations of chocolate, candies and scrumptious food of a massive variety, we only had homemade popcorn and oven-baked cake, while we all craved more.

About every other day, someone decided to make dinner or lunch, so the eating was still good. It's amazing how creative one can be with a small selection of vegetables and staples. At least, Mark and I still had
vegetables. Plus, we started a new "green" experiment: sprouting beans. Fruit was another story. So, one afternoon, we bit the bullet and decided to go ashore with our dinghy to find vitamins. During a lull in the swell, we revved the engine, hit the beach, quickly jumped out and pulled as hard as we could. We avoided getting swamped, and, other than a wet bum for me from pulling the boat too strongly and not backing off quick enough, falling to the ground, we remained unscathed. Together, we set out exploring inland a bit and discovered a plethora of fruit trees. We collected pamplemousses (big, sweet grapefruits), oranges, mangoes, lemons and coconuts until we couldn't carry any more. Once back on the beach, the sea had "grown" substantially, massive breakers rolling and crashing onto the yellow sand. We decided to play safe (avoid getting flipped over by the foamy waves) and walk the dinghy out, past the rollers, pushing and swimming a bit more, before climbing - or slithering - back inside the tubes. Fully loaded with unripe fruit, we arrived back at Irie in one piece.

On Tuesday, the sun was back and the ocean seemed to be a bit more agreeable. Mark and I motored the dinghy along the southern shore of Tahuata, to visit its main town Vaitahu. Hopping ashore was a bit tricky, but we had a nice little walk. The town is very small and quiet, but it has a pretty, interesting looking church and a decent store with fresh French bread. Nothing too special, really, but it was a pleasant excursion and we got rid of our garbage, while obtaining some more food. In the afternoon, Irie was the only boat left in Hanamoenoa Bay and we truly enjoyed the peace and beauty all by ourselves. That was until our "dish washing bucket" broke after filling it in the sea and carrying it back into the cockpit. Gallons of salt water flooded our four plants, which were just starting to recover after previous incidents like falling in bleach, dealing with salty air during passages and waves entering the cockpit. Our snorkeling trip was rightfully delayed, while we tried to save our garden with lots of fresh water.

Back to the Old Days

February 5^th, 2012: a normal Sunday in the rest of the world; Super Bowl Sunday in the United States. My husband happens to be an American, not being in (t)his country of American football. Instead he is in the middle of nowhere and –for once- not very happy about it. Where to watch the Giants and the Patriots play the most important and popular game of the world and the year? There are no bars, no restaurants and no ex-pats living nearby. We don’t have TV, let alone fast internet; the radio stations are Panamanian…

Mark thinks about making an announcement on VHF #72, the channel most cruisers in the San Blas islands stand by on. “Does anyone have satellite TV to watch the Super Bowl tonight? We will bring rum and popcorn in return for watching the game!” For some reason, he doesn’t think this will work out. In the meantime, we hear other cruisers make plans for Super Bowl parties on their boats, while we are wondering “How the heck are they going to watch this event?” We somehow find out those Americans will listen to the Super Bowl on their SSB radio.

With difficulty, Mark discovers the right channel for the game and when the clock shows 6:30pm our small SSB receiver is wedged between a top hatch, the antenna leaning against a metal shroud. We turn the wind generator and the fridge off, to avoid interference. On this cool February evening, we are snuggled up in bed and listen to a radio voice broadcasting Super Bowl 46: the New York Giants against the New England Patriots. The radio station is called AFN: Armed Forces Network. I feel like we are living in the 1930s, when radio was basically the only form of entertainment and news source. While the broadcaster’s monotone voice talks faster and slower, depending on the developments in the covered stadium, some ads are thrown in, and I doze off, while Mark follows the game. Even when I watch a football game on TV, I don’t understand the rules, so how could I ever know what’s going on without even seeing the field and the players?

It is an exciting game, where both teams score well and before we know it, half time arrives. We skip Madonna, because it is quite important that we turn the fridge back on, before the evaporator (and our little “freezer”) defrosts and the whole inside is a watery mess. We can also use the power from the wind generator, so our intermission is used well.  After half an hour, we turn the SSB radio back on and the other systems back off. We get comfy in bed again and wait for the soothing voice. All of a sudden… there is total silence. The batteries died. We don’t have extra AA batteries anymore and scramble a couple from a camera and another two from a flash light. Mark realizes it is more important to follow the weather predictions on the SSB radio instead of the football game and saves the battery power to be able to sail safely to our next destinations. Therefore: game over and Super Bowl Sunday has us going to bed early and leaves us hanging about the second half of the battle and the final score…