Saturday, July 26, 2014

Hope Lodge – “It’s Almost Worth It!”

Amazing. Incredible. Unbelievable. Generous. Indispensable. These are some of the words that come to mind when Mark and I think about the AstraZeneca Hope Lodge in Boston. The Lodge, an initiative of the American Cancer Society, offers 40 cancer patients and their caretaker a free place to stay during their treatment in Boston’s first rate hospitals. This way, the patients – who have enough going on in their lives – do not have to worry about (expensive) accommodation and can focus on what is most important: their health and recovery. One of the requirements for staying at Hope Lodge is that you have to live more than 40 miles away from Boston. Since our floating home is located 6000 miles away, we qualified!

Based on the staggering amount of people walking the hallways and occupying the waiting rooms in Dana Farber Hospital, cancer is very prominent and heaps of patients are being treated. With only 40 rooms, Hope Lodge is very popular and almost always full. Mark and I were on the waiting list until two weeks into his radiation therapy. We were able to drive into the city daily and start his treatments on June 25th, a very time consuming and arduous task, but it was an option for us, while most guests at Hope Lodge live too far away and can only start their treatments from the moment there is room availability. One day, we received a call that there was space, and we moved in for Mark’s last two weeks. What a relief, comfort and convenience it was to have our own living quarters and to be able to walk to Dana Farber for all the appointments!

Not only did we have our own suite (with bathroom, seating area and beds), but many common areas were at the guests’ disposal: from family, TV, and game rooms, to libraries, a small movie theatre and a couple of outdoor areas. The first floor contained four full size kitchens - where every couple had a designated locker and fridge and freezer shelf - and a massive communal seating area. Activities were organized daily and consisted of yoga sessions, grocery runs, game and movie nights, musical entertainment and free meals organized by volunteers. Free van transport to Boston’s major cancer institutes ran hourly. In the vicinity a big park with greenery and a pond lured us for strolls, and a Whole Foods supermarket was a 15-minute walk away.

Being at Hope Lodge meant that Mark’s treatments only took a 1.5 hour chunk out of every day, leaving more time to work, socialize and exercise. One afternoon, we said “hi” to the dogs at the Humane Society, a short walk away, one Sunday we explored Boston, and another afternoon our “old” cruising friends Cindy and Gray (who we sailed with in the Bahamas more than six years ago) came over for a visit. One evening I gave a presentation about our boat life and scenes from the Pacific. Everyone at the Lodge was courteous, friendly, helpful and caring and we met some great people. With everything going on the last months, our time at Hope Lodge was somewhat of a silver lining and we are very happy and appreciative we managed to stay there. As Mark and I joked with some people there: “It is almost worth getting cancer to be able to experience Hope Lodge!” Whenever we have money, we know where to donate…

Harvard University in Cambridge, Boston

Olmsted Park near Hope Lodge

Practicing with my new camera

Boston city center

Quincy Market in Boston

Feneuil Hall in Boston

Paule Revere house

Charles W. Morgan whaling ship in Charlestown, Boston

Hanging out with Mary at Hope Lodge

Communal living room (where I worked)

Schedule of activities, Hope Lodge

Garden at Hope Lodge

Mark and Liesbet with Shelley and Sharom; a great couple!

On the way from the hospital to Hope Lodge

Cindy and Gray coming for a visit at Hope Lodge and staying for a dinner made by volunteers

Wednesday, July 16, 2014

Fantastic Weekend in Uxbridge

Don’t let the name of this town fool you! Sure, Uxbridge is an in the “middle of nowhere” kind of place, and it sounds kind of funny, but at least seven of its inhabitants are really cool people. And that is reason enough for a visit! I am talking about two of Mark’s best friends from college and their families… Ryan, Denise and Jake welcomed us with open arms and delivered a great weekend. On Saturday, other college friends and their families came over for a fun and tasty BBQ and on Sunday, the five of us joined the other Uxbridge family (Holly, Kevin, Elena and Trevor) at a nearby pond and in the pool for another fun day.
Church in Milford on the way to Uxbridge

Jake and Mark playing with remote control cars

It was hard to recognize our hosts' house with the new addition!

Mark, Jake and Liesbet in front of the "doubled" house

Mark's new friend Elena

Summer means BBQ-ing in New England (and the rest of the USA)

Nice weather and nice company


Lou and Kim with daughter Emily

The twins are getting big: Liesbet with Arianna and Christopher

The kids are having fun in the pool

And that is why Americans need a big fridge and freezer - I have no idea how Denise manages to fit so much in this one... and find stuff back! Yes, they do have supermarkets in Uxbridge. :-)

Scary Mark with sweet Arianna

Elsa with Christopher

How is this for a Sunday breakfast?

Jake is getting ready to go fishing

Jake and Trevor on Pout Pond

Mark with some of the coolest people in Uxbridge


Jake next to his sandcastle

PS: These events happened almost three weeks ago. As of now, Mark and I are both pretty wiped out and are focusing on work, health issues, and some rest

Sunday, July 13, 2014

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 7th (getting back on Irie August 8th) 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 26th 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 4th 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