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!
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| The babies encouraging Belgium in the early stages |
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| Lily watching Belgium defeat Russia |
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| After Belgium's win against the USA |
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| Jo and Suzy visiting for lunch on July 4th |
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| Going for a boat ride on the lake (July 5th) |
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| Ueli on Scott and Lisa's boat |
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| Looks like fun... one day! :-) |
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| Kids and adults tubing on the lake |
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| Appropriate 4th July dessert! |
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| Camp fire at dusk |
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| Shooting off fireworks is legal in New Hampshire |
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| And, they do a good job of it in July! |
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| Passing the local airfield on our walk to Plum Island |
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| Lonely, abandoned house along the walk |
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| Beach across the street from Tim and Kristen's house |
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| Petting Oliver, our sweet and hairy friend |
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| Lily being cute with a hair brush |
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| Lily and Cera |
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…
