Calmer and Visits with Friends   May 26th, 2012

from Linda

Only a short note today, the hospice was a good move. We all slept better knowing Jake was there and being well taken care of. And most important, Jake slept better.

Friends have started dropping by for short visits and long. Jake, my social butterfly, my cruise director of life, brightened up and enjoyed himself immensely catching up with all, drinking a toast, sharing a meal, and even enjoying music and song. I think a total of eight visitors today. We bought Jake a guest book to remember these moments.

Although Jake has not been reading all the blog comments or Facebook posts, I have been sharing with him all the people’s names and shown him the photos from the past. We had the smiling weepies a dozen times but that is all good. Jake is feeling the love and so are the kids and I. Thank you for the reminders of so many amazingly great times we have had together.

 

Another Day and Another   May 24th, 2012

from Linda

Jake is adjusting to the hospice well. I got to overnight with Jake Saturday night which gave us private time together . We’ve had lots of visitors and Jake keeps us hopping for various foods like Mexican, Brazilian and Sushi. Jake is doing better than I am in remembering the details of everyone’s lives. :-) And we have had several friends visit that go back almost 30 years, pretty impressive.

On Sunday, they started Jake on a new medicine to help him with word confusion/frustration – trying to find the right word. Although drowsiness is not a side effect, it seems to help patients relax so the first couple days they are sleepy and are able to catch up on some much needed sleep.

We are taking a leisurely morning (Jake is napping) as we are expecting an energetic visit from our niece and nephew today.

 

As I watch and listen to the royal wedding of William and Kate an hour after it happened, I am reminded that part of traditional wedding vows includes the phrase “in sickness and in health”. This phrase was part of my vows nearly 22 years ago and part of the vows of the royal couple today as well.

When we get married we mouth these vows without any sort of sense of what the “sickness” part entails, but if we are true to them (and sadly, wedding vows are too frequently broken), it’s situations like the one life has sprung upon me that put such vows to the test.

While it is the cancer patient’s lot to have cancer, the impact of the disease is not limited to just the patient – it affects all the people around them in myriad ways. And whether those people can cope with the news of the disease and its on-going treatment is a very individual and personal thing.

For family it’s a bit different though, as they have a something akin to an obligation to the patient – an obligation born of blood relations and/or vows. And on them falls much the burden of helping the patient through the difficult times, often without consideration for their own sacrifices.

In my case, the decision (and freedom) to get treatment in Boston resulted in total change for my wife and children. They had very little time to pack up what was needed back home on the island of Bonaire, shut down unnecessary things, and arrange to live for an indeterminate number of months in a new but temporary home. (And even as I sit here writing, all three of them are busy building a dozen pieces of IKEA furniture because I’ve been told by my doctor and wife to not stress my thigh skin graft any more than it already has been and that means staying away from furniture building. This past Tuesday I was told by the doctor that the skin graft was comprised, and things were not nearly as good or bad as they could be, but that I needed to be even more careful with it than I had been.)

I am fortunate in that I have the flexibility to uproot myself (and my family) and move to wherever is best for my survival, but for many that is not an option, and might involve regular long drives or settling for less than perfect treatment options closer to home.

While my physical suffering has yet to really start (and I don’t consider my initial biopsy surgery to have been onerous, although the lack of real mobility I have due the healing skin graft is very frustrating), I already don’t know how I would have been able to manage even some of the stupidly simply things, like being driven to appointments or getting supplies for our new apartment, if it weren’t for my wife and my in-laws (whose hospitality I relied on pre-biopsy as well as during the week my wife was back home getting the kids and cat ready for the move north).

 

The Richter Family at my father's 75th birthday party, three days before I was diagnosed with malignant melanoma. I'm the tall white/gray/blonde haired guy in the back left, and my daughter, wife, and son stand in front of me and to my left.

The Richter Family at my father's 75th birthday party, three days before I was diagnosed with malignant melanoma. I'm the tall white/gray/blonde haired guy in the back left, and my daughter, wife, and son stand in front of me and to my left.

 

Considering how much more challenging the times ahead are going to be, the burden on my family and friends will only increase, and I fear at times during my treatments I may not be as gracious about appreciating their efforts and sacrifices as I should be. So, in advance, let me express my thanks to you and all caregivers and loved ones of all people dealing with cancer.

I would like to close this post with a few references that might help those who have been diagnosed with cancer or find themselves with loved ones or close friends who are diagnosed.

First, Lance Armstrong’s LIVESTRONG foundation offers a free guidebook and planner/journal set to anyone who requests it – all you have to do is pay shipping. The contents of both volumes is incredibly informative and helpful, and offers both the cancer patient and his or her caregivers information on all the various phases of cancer – from diagnosis to treatment to being a cancer survivor. If you learn of a friend or loved one who has been diagnosed, get them a copy. (Angie – thanks for pointing me to this as well!) More details at http://jake.me/Z879. The LIVESTRONG web site (which can be reached via the previous link or at http://www.livestrong.org) also offers one-on-one support for cancer patients and caregivers, including counseling.

Next, if you or a loved one have been diagnosed with Melanoma, a good foundation for understanding the cancer and its treatment can be found in Dr. Steven Q. Wang’s “Beating Melanoma: A Five-Step Survival Guide”. There’s not a lot of in-depth detail, but when you’re in the initial throes of coping with a melanoma diagnosis, it’s quite useful in helping set priorities. As a companion to the book, I also suggest the web site http://www.aimatmelanoma.org, which addresses all the basics of melanoma.

Another book I am reading is “The Emperor of All Maladies: A Biography of Cancer” by Dr. Siddhartha Mukherjee, which I am about a third of the way through. The book provides an absolutely fascinating – and terrifying – history of cancer and how people have perceived cancer and come up with treatments to combat cancer over the ages. Mukherjee is an oncologist at the Dana Farber Cancer Institute here in Boston, and interleaves his own modern-day observations of treatment with the historical approaches to cancer treatment (or lack thereof). The part I find disquieting is how new cancer treatment really is, and how much still is unknown. But I believe it is better to have a realistic understanding than an incorrect one, or worse yet – no understanding at all.

I also have several textbooks on cancer biology that I plan to delve into early next week. More on those once I have digested them.

Finally, for friends and family of cancer patients, you may want to take a look at “Help Me Live: 20 Things People With Cancer Want You to Know”, by Lori Hope. I have just started reading the book, and while the focus is on the author’s own experience with breast cancer, and interviews with other breast cancer patients and survivors, I find that a lot of the issues that Hope addresses apply already to those with other forms of cancer. That’s because even though various cancers can be radically different from one another biologically, the emotions and physical aspects of treatment share similarities. Interestingly, one of the first things that Hope addresses is what she has learned is the number one fear of cancer patients – namely abandonment.

And the topic of abandonment brings me to my summary today.

A lot of the external worry and concern is about the cancer patient’s well being, but one should never forget the family and close friends who provide the immediate support network for cancer patients. It is quite possible for such caregivers to feel unappreciated and possibly even abused or scared and sickened during the later stages of a loved one’s cancer treatment. Some people will not be able to deal with someone they care for having cancer, possibly being terminal, and/or suffering for extended periods of time. And that is perfectly understandable, but one way to help those that provide care is to make sure they have a support network of their own. If you wonder what you can do for a friend or loved one with cancer, check in on their family and caregivers separately and provide them whatever support you can.

And, I should add that “support” does not mean getting sad around the caregivers and offering sympathy, at least not while the cancer patient is alive and reasonably well. Those sorts of empathic gestures, while well intended, only raise the specter of unhappy endings. Do something positive and life affirming instead, even if it’s something as simple as letting caregivers that you are there for them too.