Monday, June 30, 2014

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. :-)

Tuesday, June 24, 2014

Boston, MA: Where Tahitian Cruisers Meet!

A funny and enjoyable coincidence just happened a couple of weeks ago. Our Italian friend Giorgio – who we met in Fatu Hiva and had a good time with ever since, each time we ended up in the same anchorage – has his sailboat Hua Motu in Taina Marina, not too far away from Irie. He gave us the last items out of his fridge, before he temporarily left his floating home in Tahiti, and Mark brought him ashore to catch the plane to Italy. Not two weeks later, ironically, I passed on his food and our cold items to other cruising friends and received my ride ashore to catch a plane to the US.

We knew Giorgio was going to fly through Boston to meet up with his best friend at some point, but, frankly, we had forgotten about it. So, it was a nice surprise when we received his email and the words of meeting up with us, two days in a row. First, he visited us here in Newburyport, where we went out for a walk along the waterfront and an evening at a local bar. Mark and Giorgio were delighted with the big selection of micro brews they offered on tap in “The Grog” (this was before Mark read and realized how bad alcohol is in regards to cancer and the prevention of it) and we enjoyed a nice dinner together.

The following day, after Mark and I saw the surgeon, we met up with Giorgio again and had a lovely day in Boston, despite the crappy weather. We went for a walk and – avoiding the chilly temperatures outside – watched the first game of the World Cup in a bar. Brazil played Croatia, the country where Giorgio was born. Afterwards, the three of us joined other Italian friends at an art gallery event, where we met a group of very interesting, smart and eclectic people. We all hit it off and gathered in a Greek restaurant for dinner. And that is how Tahitian cruisers met in quite a different setting, but with the same fun and social outcome!

The daily special at the Grog (breaded scallops) was "everyone's" favorite on the menu!

In Boston, we passed a "store for the home brewer"...

... with a lot of "goodies" to try out on our boats

Lunch in a Thai restaurant - we are living (read: spending) large!

Another interesting stop along Newbury Street: a 3D printer shop. Amazing what can be created with these portable machines!

Mark and I in front of special purple flowers, in the Public Garden

Massachusetts State House (capitol)

Small art gallery in Watertown, where we met an interesting bunch of Italians

Enrika, her daughter and I are trying to stay warm in the Greek restaurant, where the air conditioner is blowing full blast... for no reason

And, while we are being social, here is the picture of Stan and Carol's 57th anniversary lunch celebration in Ceia, a very good restaurant in the center of Newburyport. Mark's brother Tim and Kristen joined us for this tasty event! A nice family reunion.

Friday, June 20, 2014

Mark’s Cancer: The Next Step

A few weeks have passed since Mark had his last operation to remove a lymph node, in order to define whether his breast cancer has spread. Since he was diagnosed with invasive papillary carcinoma, a very rare, but encapsulated cancer, everyone assumed the lymph node would be clear. When we received the pathology report, however, 80 scattered cancer cells were found. Nothing to worry about, so the specialists said, because those cells don’t mean much (“We count this result as 0” – Hmm, we thought zero actually meant zero…) and they might have ended up in the lymph node system after the first biopsy “poking” in Tahiti. We also found out that Mark, as assumed, has the BRCA1 mutation, which is now generally believed as the cause for his breast cancer.

Other than that, Mark is healing well from surgery and we have come to the point, where we now have all the information we need about his situation. What we don’t have is results, statistics or accurate prognoses about his disease, because he falls in a category all by himself. Mark is a male of 43 years old, with the BRCA1 gene and a very uncommon type of breast cancer. Usually, when a man is diagnosed with breast cancer, they automatically do a mastectomy, since, usually, not enough breast tissue is in place to remove the tumor with clear margins. In Mark’s case, his surgeon from Newburyport did a great job and succeeded to remove the tumor with clear margins, meaning all the cancer would theoretically be removed just by this “lumpectomy”. Hence, the preferred follow up treatment would be radiation and hormone treatment.

Fast forward to a couple of days ago, when Mark’s case was brought to the “tumor board” in Dana Farber, one of the top cancer institutes in the US. Mark and I were meeting with our radiation oncologist (and head of the radiation department) to set up the radiation plan and to see what the board had decided. Big – and unpleasant – was our surprise, when we heard that many people of that meeting felt that a mastectomy would be the best plan of action. What??? I thought we had passed that point already? Where the heck did this come from all of a sudden? Here we believed we had a plan and we could move on, starting with the treatment. Instead, we were offered an alternative again and, worst of all, after some more thinking and talking, this alternative (which was actually an old alternative that had always been on the table) started to make sense!

So, there we went again, thinking, talking, reading and researching (mostly in vane) our two options: mastectomy (= another operation, a few weeks recovery, a permanent scar and missing nipple, but that’s it) OR radiation (for four weeks) in combination with hormone treatment (for five years) with possible side effects. Both options had the same outcome and chance of recovery, but which one would be better to prevent any recurrence, which is now all that matters? It boiled down to a personal preference, and… Mark was “lucky” he had a choice!

It is June 20th today and Mark has been in the States for over a month and a half, about the same time we have known about his dreadful cancer verdict. As of this day, we finally have a plan and a schedule and that is good news. Yesterday, radiation technicians “mapped” his body for the weeks of therapy to follow, and on June 26th (after a “dry” run the day before) his 19 radiation treatments will start. Five days a week, he will have to lay in a machine and get zapped (the actual radioactive beam will only hit him one minute or so). Once all this is finished and we have met again with our wonderful, skillful and highly experienced medical team of Dr. Jeselsohn, Dr. Carter and Dr. Harris (all three are also professors at Harvard University), Mark will most likely have to take the hormone drug Tamoxifen for five years. This, with a personal choice of natural remedies and a healthy lifestyle should minimize bad cancer cells to linger around, multiply or recur. We sure hope so!

The CAT-scan machine for Mark's "mapping"
Mark's view from the CAT-scan machine. Looks familiar? :-)

The radiation technicians left some magic marker spots behind. Five tiny, but permanent tattoos will help line up the machine during treatment.

Friday, June 13, 2014

Pleasant Distractions while in New England

Since Mark and I have been here, in Newburyport, life hasn’t all been “bad and cancerous”. Friends have visited and family events have taken place. Not to the extent and with as much fun and happiness as during previous visits, but pleasant, nevertheless. The weather started out being very crappy and cold, but things seem to be improving now. We love the sun!!! While we avoid the heat and sunrays at all cost while running errands and hiking in the tropical climate of French Polynesia, we now choose the sunny parts of sidewalks and avoid shady benches when exploring the area and taking in the surroundings.

One day our friends Ryan and Denise and their quickly growing son Jake came by to see us. We had a nice time having drinks overlooking the river, walking along the waterfront and being treated to a good dinner in town. Twice now, our friends Scott and Lisa have picked us up and brought us to their house on a lake in Newton, NH, not too far away from here. They spoil us rotten, and there we have some welcome peace and relaxation in good company and a laid-back environment. The second time, right after Mark’s surgery, we returned to house and dog sit. We avoided our computers and the cold weather, by watching TV for days – quite the sensory overload experience, when you usually never watch anything like this. Did you know that on some US channels 4 minutes of a program is alternated by 3 minutes of commercials? And, to take all these convincing ads in on a 65” screen… Wow!! Two days of this was enough for many years to come.

Our brother-in-law Brian picked us up in Newton, but, before we returned to Newburyport to spend some days in his lovely company, he and I paddled Mark around the lake in a big canoe; good exercise and an enjoyable experience for all of us, despite all the other “redneck” activities going on on the water, like power boating, water skiing and jet skiing. Weekdays are much quieter there. And, then there are “the babies” of course! Mark’s brother Tim and his wife Kristen gave birth to beautiful twin girls about nine months ago. A lot of time is now spent watching and holding Cera and Lily on Plum Island, a 10-minute drive away!!!

Mark's mom Carol with Lily

Mark with the other baby, Cera

Denise, Mark, Liesbet, and Ryan along Newburyport's waterfront

Mark's parents Carol and Stan allowed us to "move in"

A wonderful sushi dinner, thanks to Scott and Lisa

Ueli, Mark and Jasmine on the couch
Comfy Jazz on Liesbet's lap
"Our" Lake in Newton, New Hampshire
Scott, the grill master
Liesbet and Lisa; it's not quite summer yet!

Ueli and Jazz playing in the yard

The bigger, the better!??

Putting part of the dock in the freezing lake water
Brian and I row Mark around the pretty (and warmer) lake
Kennebunkport, Maine

A few old cars drove through Kennebunkport that Sunday

Maine is famous for its lobsters

Parker River National Wildlife Refuge on Plum Island

Walk in the Wildlife Refuge

The beach on Plum Island, Newbury - not quite like the South Pacific

Sharon, Mark and Brian, walking the "wild" beach

Tuesday, June 10, 2014

Movie Time: Spinner Dolphins in Tahuata, Marquesas, French Polynesia

A long time ago, I promised to post some (wildlife) videos on my blog whenever we had good enough internet. That time has come and I hope to keep that promise now, starting with this movie of some happy dolphins in Tahuata. This acrobatic pod cheered us up every morning and we cheered them on from the dinghy or Irie's deck!

Friday, June 6, 2014

Cancer Update: The Operation

As we are living day by day and getting through a whole array of “cancer curing” procedures in a slowly manner, Mark and I can check one more thing off the list: the operation. On June 3rd – a week earlier than initially scheduled (thank you, Dr. Carter for understanding our situation) – we drove back into Boston and endured the two hour traffic jam once again. This time, our destination was Brigham and Women’s Faulkner hospital, a good mile “down the road” from Dana Farber. Even though the operation wasn’t until 1pm, we had to be there for pre-op arrangements at 10am. The sun was shining brightly, while we spent all day in an icy cold sterile environment. Of course, this was the least of our worries.

 What's wrong with this picture?
After the mandatory paperwork was filled out, we waited. At 11am, I joined Mark to the nuclear medicine department. He was pretty excited about this part… A doctor injected him with a radioactive material, which was supposed to flow into the sentinel lymph node(s). This would enable the surgeon to find the right node(s) with a Geiger counter, before removing it/them for another biopsy. It is the only way to find out whether the cancer has metastasized (spread); the fluid would “follow” the same path the cancer cells would follow. Precautions were taken and while a radiation technician assisted the doctor, I watched the clear material being injected into my husband, who was reprimanded for trying to help hold the blood stopping gauze down on his chest. “Don’t touch this stuff with your hands!” Hmmm. I guess it is only safe to have radioactivity inside oneself? At least Mark didn’t seem to be glowing! Of course, it was not dark enough to really tell…

After the radioactive injection
More waiting followed and around noon, Mark went into the pre-surgical area to be hooked on an IV. I joined him later and together we waited for a couple of hours more. The surgeon was running late, but we didn’t mind. We were happy the procedure would take place that day and did not want her to rush on anyone. Around 3pm, I left Mark in the good hands of nurses, anesthesiologists, and Dr. Carter. She found me an hour later and reported that everything went fine. The operation had been a success and one lymph node (as opposed to two) was removed for further investigation. It took “dopey” Mark a little while to wake up (apparently, he is a “light weight” :-)), before we got into the car for the slow ride back to Newburyport, where we arrived twelve hours after leaving. Now, he is slowly recovering without too much pain and discomfort, and we are waiting for the lymph node report.

Nuclear Medicine Department

Filling out yet another consent form

"I am radioactive" sticker - a piece of memorabilia