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.
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| 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 12th),
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.
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| 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.
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| 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 3rd) 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!
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| At Dana Farber to meet with the genealogist - patients are "branded" and can be tracked! |
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| Meeting with the head of the radiation department at Dana Farber |
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| After problems with the first BRCA1 test (for insurance reasons), Mark has to send another sample |
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| A new spit sample is packed up and ready to go to the lab in California |
