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

 

Video of Mark's Radiation Treatment

For the people who are curious about radiation therapy and are wondering how each treatment looks like (I was!), here is what happens... First the technicians adjust the machine and settings to Mark's needs, then they position him on the table and leave the room. Mark previously picked a song he wants to listen to and stays put for a few minutes, while he gets "zapped"! Turn up the volume to hear the music he picked for his very first radiation experience. :-)

Nothing Else Matters

Change of Plans

Mark and I are taking hot, pressurized showers, doing laundry in a machine, driving a car to the grocery store and spending time away from Irie. I enjoy ice cream, almost every day. No, we are not on a holiday, even though we planned to treat ourselves to a week of vacation on Easter Island in May; it would be the first real vacation for us in over seven years (even though that is probably hard to believe). Instead, a very eventful May has passed and we are in Newburyport, Massachusetts, USA.  Not by choice, but very glad to have friends and family around. Mark has been here almost a month and I arrived two weeks ago. When we will be back on Irie is anyone’s guess. How plans can change fast and unexpected…

Just Like That…

In January, Mark fell with his torso on a winch. He was in a lot of pain. Two weeks later, he noticed a bump under his right nipple. It had to be a result of the injury. Taiohae does not have the right equipment for an analysis to check it out; we didn’t bother. A month later, the bump was still there, seemingly of the same proportions. It would have to heal soon. Apataki does not have a hospital. We dealt with crappy weather and a successful haulout. Another month later, we went to the infirmerie (clinic) in Fakarava. There is no doctor in the village; the nurse thought the lump was related to the injury, but recommended us to go to Tahiti to have it checked out. About two weeks later, we arrived in Papeete on a Friday and immediately went to the public hospital. An ultrasound was scheduled for the following Tuesday. No conclusion was reached, but the doctor managed to do a biopsy the same day to not delay any further investigations. The biopsy result arrived another two weeks later. “I have bad news for you. You have cancer!” The world around us collapsed.

Biopsy report of the hospital in Pape'ete

Are We sure?

The emotional roller coaster ride started and would last for a long time to come. We translated the French biopsy report and different doctors and surgeons had a look at it. It could be cancer. Or, it couldn’t. Is it? Or, is it not? We were shocked. We were relieved. We were in disbelief. We were confused. The diagnosis was a bit ambiguous, but all agreed that removing the lump would be the next step. Would we have that done in Tahiti? Or in the US? How about insurance? A few visits to doctors’ offices in Pape’ete followed. Four days after hearing the initial diagnoses, Mark was on a plane to Boston. Cost: $1800!

I stayed on Irie, still hoping the tumor was benign and that Mark would be back in three weeks. I could use a little personal time to work on a few projects and cruising friends kept my spirits up and had me over for dinner. Mark underwent a successful operation in Newburyport and another biopsy followed. Conclusion: he had, indeed, breast cancer… against all odds. He was a male of under 60 years old and – definitely – not obese, but… his sister had the BRCA1 gene mutation and passed away last year after a long fight against ovarian cancer. Everybody now assumed Mark had the bad gene as well.

A Hell of a Day

Once this news came to me, Monday afternoon (May 12^th), all hell broke loose on Irie. I spent hours on Skype, through a crappy internet connection, to secure a flight for Wednesday. I had one full day to prepare Irie and leave indefinitely (a scary thought in itself). To make matters worse, the swell was unusually high that night and the following day(s). Irie was pitching wildly during the rest of my stay in Tahiti. I didn’t sleep at night, and got up at 4am to start prepping the boat and communicating with Mark and friends. In between chores, every ten minutes or so, I had to rush outside and gag, losing a lot of precious time to let my stomach settle. The combination of stress, emotions, seasickness, heartache and adrenaline is not a good one. But, I survived and – with the help of good friends – got the task done before dark (6pm), when I really had to start packing. Another bouncy, sleepless night and I was picked up at 5am the following morning to get to the airport.

Massive waves created a very bouncy anchorage before I left

Our heartfelt gratitude goes out to Chris and his family on SV Iona, Leo and Gesina on SV Seluna, Cheryl and René on SV Gypsy Blues, and Lisa and Fabio on SV Amandla! More names will undoubtedly be added to this list based on how long we are separated from Irie. 

Invasive Papillary Carcinoma

It took a few weeks and a whole lot of appointments and opinions before we came to the point of knowing for sure what Mark’s cancer is all about. I will not bore you with the details or the array of emotions involved while waiting for results. We went from a suggested double mastectomy to a less drastic lumpectomy in combination with radiation, possible chemo and a predicted treatment period of 3-7 months. All pretty shocking, when just weeks before, you were planning on sailing in the Society Islands, looking forward to a scheduled visit from family in June and then slowly heading west to Fiji for cyclone season.  No more anticipation is to be had, however, and planning anything at this point is useless.

Waiting for a check-up by the surgeon

 The diagnosis of Mark’s cancer is invasive papillary carcinoma, a very rare type of breast cancer, but – apparently – a “good” one; one that is less likely to spread and that is responsive to treatment. 1 out of 1000 breast cancers is detected in men; less than 1% of all invasive breast cancers is papillary carcinoma! 10% of the breast cancers in men is caused by the BRCA2 gene, not the BRCA1… Mark is unique (nothing new there :-)) and presents an interesting case study. As of now, his suggested treatment consists of an operation to take out the sentinel lymph nodes (scheduled on June 3^rd) to make sure the cancer has not spread, 5-6 weeks of radiation after the results of the pathology report will be known and radiation mapping has taken place (all time consuming), and 5 years of hormone treatment. Things might change based on the lymph node report.

To Be Continued…

Mark is in the good, but busy, hands of Dana Farber in Boston right now. This is one of the world’s top cancer institutes and we are very happy and fortunate that he can be treated there. The downside is that everything takes a long time (according to our antsy minds and purposeful reason to be here), with a plethora of specialists involved and many patients needing treatment. Over the coming months, I will post updates about our progress fighting the cancer and – hopefully – about some fun (summer) activities in New England. Our sailing adventures and stories are on hold!

At Dana Farber to meet with the genealogist - patients are "branded" and can be tracked!

 

Meeting with the head of the radiation department at Dana Farber

After problems with the first BRCA1 test (for insurance reasons), Mark has to send another sample

A new spit sample is packed up and ready to go to the lab in California