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


Lisa Dorenfest said...

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 :-)

Liesbet said...

Thank you, Lisa. You are always so positive and encouraging, and I love you for that! xxx