Friday, May 30, 2014

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 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.

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 RenĂ© 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 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!

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

7 comments:

Mike B. said...

Sorry to hear this. Glad you were able to get treatment quickly and my best wishes for a speedy recovery and clean bill of health in the future.

-Mike
ThisRatSailed

Liesbet said...

Thanks, Mike! I'm glad you are sailing now and living the "good life"! don't worry too much about the June 1st "deadline" for hurricane season. The first month is still pretty safe. Deltaville is a great area to work on your boat! Good luck.

Anonymous said...

Sorry to hear about all this. What a change of events. It's hard to believe. Wishing Mark and you all the best through this so all gets well again and you are back cruising Pacifica !

lisa dorenfest said...

Hey there! Sending good vibes your way! Have asked my friends to do so too! Lots of love! Lisa and the Captain

http://lisadorenfest.com/2014/06/03/nothing-else-matters-reblog/

Liesbet said...

Thank you Anonymous and Lisa!

Lisa, you are just the sweetest and most thoughtful person! You are great in so many ways... xx

lisa dorenfest said...

Awww��. Love you guys!

Sailing LunaSea said...

Hang in there, guys! I'm about 2 years ahead of Mark and it gets better. Treatment will end. Scars will heal. Energy will return. And, eventually, you'll go for hours, and then days without even thinking about it. While Mark is certainly the patient, be sure and take care of yourself, as well. In some ways it can be even harder on the caregiver. Hope to run into you guys one day on a warm, sunny beach in a place far away from hospital rooms. :)