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 |
2 comments:
I am sorry to hear that Mark is feeling the effects of radiation but happy that he is half way through the treatments and that you got a spot at Hope Lodge. Thank goodness. Love the photos, especially the one of the lone house, the fireworks and the children. My favorite is of the girls encouraging Belgium in the early stages :-)
Thank you, Lisa. You are always so positive and encouraging, and I love you for that! xxx
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