Showing posts with label AstraZeneca Hope Lodge. Show all posts
Showing posts with label AstraZeneca Hope Lodge. Show all posts

Monday, August 11, 2014

Mark’s Cancer – What We Learned

Synopsis

In January 2014, Mark fell on a winch on our boat in the Marquesas. His chest hurt way more than expected, but the pain eased after a few days. Then, he felt a bump, which he attributed to the injury of the fall. Two months later while we were in the Tuamotus, the lump was still there, and we started to worry, so we sailed to Tahiti for a check-up. Upon arrival, we immediately rushed to the main hospital in Pape’ete, with subsequent visits. The ultrasound didn’t conclude anything, a biopsy suggested cancer, and in the beginning of May, Mark jumped on a plane to Boston. The tumor was removed in Newburyport, breast cancer was diagnosed, Mark was referred to Dana Farber in Boston and the fight against cancer started.  Another operation removing the sentinel lymph node followed with lots of talks to doctors and four weeks of radiation. After months of heavy emotions, meltdowns, disbelief, fear, anger and treatments, Mark should be cancer free at the moment, but there is no way of telling.

Male Breast Cancer Awareness!

MEN CAN GET BREAST CANCER. It is not something we ever thought of or imagined happening to Mark. Usually, male “victims” notice the bump themselves. We hope with Mark’s story, we have pointed out the possibilities of male breast cancer to our (male) readers. Although the chances are very small (1 out of 1000), or as Mark says “With me being the one guy to have breast cancer, none of my friends should have to worry about it anymore!” – be aware! As for women, and this is a shocking fact to me as well, the chance of having breast cancer at some point in your life is 1 out of 8; that is 12.5%!!! The breast cancer reoccurrence rate is 20%.

BRCA Gene Mutations

When Mark’s sister Dru passed away a year ago, after a long and brave fight against ovarian cancer, we knew she was a BRCA1 carrier. But, knowing that this gene mutation presented a higher risk for breast and ovarian cancer – both female diseases, so we thought – we were only worried for Dru’s daughter, who, fortunately, does not have the BRCA1 gene. Little did we know that Mark was a carrier of the gene mutation as well and a year after his sister’s passing, it would cause havoc in the family again. If you have a lot of breast and ovarian cancer in your family, it might be wise to look into the BRCA1 and BRCA2 history. The statistics are horrendous. Women carrying the BRCA1 gene have a 50 – 85% risk of developing breast cancer (and > 50% chance of a second one) and a 20 – 40% risk of developing ovarian cancer (which has a high mortality rate, because by the time it is diagnosed, it is usually a stage 4 cancer!). For men with the BRCA1 gene mutation, the risk for breast cancer is 1% (yes, Mark is a rare case) and there is an increased risk for prostate and skin cancer. Men and women with this “gene” also have a higher chance of developing pancreas cancer.

The Importance of Healthy Food

It is common sense that eating healthy is important, but we didn’t realize just how important it is – in relation to breast cancer - to cut certain foods and drinks out of our diets. In Dru (who ate incredibly healthy vegetarian and organic food for most of her life) and Mark’s case, the bad genes ignored the healthy food approach, but Mark and I still believe that eating healthy might decrease the risk of (breast) cancer reoccurrence or of the development of new cancers, as it would in the general population. The big no no’s are sugar (which “feeds” cancer cells), fried food, processed meat and alcohol. But, non-organic and genetically modified food are also not good for you, and one should be careful with certain oils (especially palm oil, which is awful for the health and the environment), red meat and canned goods. 

Unfortunately, following this advice is basically impossible with the current attitude of the food companies and with what is available on the market. The only way to live a healthy life in this culture and this time is to grow your own food, which is only partly doable for most, or buy all organic produce, which more and more grocery stores offer. The GMO foods are a toughie for everyone (yell at the FDA!). And, if you add living on a boat in the middle of the Pacific with limited food availability to that tidbit of information, following a certain diet becomes hard. But, we will do our best and try to stick to chicken (with no added hormones, and ideally antibiotic-free), vegetables (especially cruciferous ones: broccoli, cabbage, bok choy, spinach, sprouts …), olive, canola and peanut oil, fruit, whole grains and tea. Phytonutrient-rich foods and anti-oxidants are recommended.

The Experts

Mark and I cannot thank our medical team of Dana Farber and Brigham and Women’s hospitals enough for their knowledge, help, time, understanding and compassion. Thank you to medical oncologist Dr. Jeselsohn, radiation oncologist Dr. Harris with nurse Mary, and surgeon Dr. Carter. We also appreciated the professionalism and care of Newburyport doctors Dr. Jackson and Dr. Bentley.

The Support

And, while we are at it, we would like to show gratitude to all our friends and family for their support by emails, phone calls or in person. We are very fortunate and grateful to have found a personal retreat in the house of Mark’s parents Stan and Carol and in AstraZeneca Hope Lodge in Boston during this ordeal. And, last but not least, we thank our good cruising friends Leo and Gesina of SV Seluna, Fabio and Lisa of SV Amandla, and Birgit and Christian of SV Pitufa for keeping an eye on and taking care of our floating home Irie in Tahiti during the last 3.5 months!

The Future

Who knows about our future? Who knows about any future? In the short term, Mark and I will go back to Irie and spend more time in French Polynesia (Societies). As of now, Mark’s chest is still red from the radiation and a lot of the hair has to grow back. He will take the hormone drug Tamoxifen for 5 years (depending on possible side effects) and needs a check-up every six months. We will never know whether the breast cancer is totally defeated, or whether it will reoccur, or whether another cancer will develop. Cancer is part of our lives now and forever, but so is our love for each other and the realization that medical discoveries and cures will keep improving…

One of the "bridges" between Dana Farber and Brigham and Women's

Walking through one of the "bridges" between the main hospitals

Mark and his surgeon, Dr. Carter

Mark and the helpful Darlene of Dr. Carter's office


Weekly check-up with Dr. Harris and nurse Mary

Thank you to all our friends and family for their support

Saturday, July 26, 2014

Hope Lodge – “It’s Almost Worth It!”


Amazing. Incredible. Unbelievable. Generous. Indispensable. These are some of the words that come to mind when Mark and I think about the AstraZeneca Hope Lodge in Boston. The Lodge, an initiative of the American Cancer Society, offers 40 cancer patients and their caretaker a free place to stay during their treatment in Boston’s first rate hospitals. This way, the patients – who have enough going on in their lives – do not have to worry about (expensive) accommodation and can focus on what is most important: their health and recovery. One of the requirements for staying at Hope Lodge is that you have to live more than 40 miles away from Boston. Since our floating home is located 6000 miles away, we qualified!

Based on the staggering amount of people walking the hallways and occupying the waiting rooms in Dana Farber Hospital, cancer is very prominent and heaps of patients are being treated. With only 40 rooms, Hope Lodge is very popular and almost always full. Mark and I were on the waiting list until two weeks into his radiation therapy. We were able to drive into the city daily and start his treatments on June 25th, a very time consuming and arduous task, but it was an option for us, while most guests at Hope Lodge live too far away and can only start their treatments from the moment there is room availability. One day, we received a call that there was space, and we moved in for Mark’s last two weeks. What a relief, comfort and convenience it was to have our own living quarters and to be able to walk to Dana Farber for all the appointments!

Not only did we have our own suite (with bathroom, seating area and beds), but many common areas were at the guests’ disposal: from family, TV, and game rooms, to libraries, a small movie theatre and a couple of outdoor areas. The first floor contained four full size kitchens - where every couple had a designated locker and fridge and freezer shelf - and a massive communal seating area. Activities were organized daily and consisted of yoga sessions, grocery runs, game and movie nights, musical entertainment and free meals organized by volunteers. Free van transport to Boston’s major cancer institutes ran hourly. In the vicinity a big park with greenery and a pond lured us for strolls, and a Whole Foods supermarket was a 15-minute walk away.

Being at Hope Lodge meant that Mark’s treatments only took a 1.5 hour chunk out of every day, leaving more time to work, socialize and exercise. One afternoon, we said “hi” to the dogs at the Humane Society, a short walk away, one Sunday we explored Boston, and another afternoon our “old” cruising friends Cindy and Gray (who we sailed with in the Bahamas more than six years ago) came over for a visit. One evening I gave a presentation about our boat life and scenes from the Pacific. Everyone at the Lodge was courteous, friendly, helpful and caring and we met some great people. With everything going on the last months, our time at Hope Lodge was somewhat of a silver lining and we are very happy and appreciative we managed to stay there. As Mark and I joked with some people there: “It is almost worth getting cancer to be able to experience Hope Lodge!” Whenever we have money, we know where to donate…

Harvard University in Cambridge, Boston

Olmsted Park near Hope Lodge

Practicing with my new camera

Boston city center

Quincy Market in Boston

Feneuil Hall in Boston

Paule Revere house

Charles W. Morgan whaling ship in Charlestown, Boston


Hanging out with Mary at Hope Lodge

Communal living room (where I worked)

Schedule of activities, Hope Lodge

Garden at Hope Lodge

Mark and Liesbet with Shelley and Sharom; a great couple!

On the way from the hospital to Hope Lodge

Cindy and Gray coming for a visit at Hope Lodge and staying for a dinner made by volunteers