Saturday, April 28, 2012

What's Next & Food for Thought

Greetings Again, Friends and Family,

Note to Readers:  Because it pertains to lifestyle--ours and maybe yours--this is, perhaps, one of the more important posts we have written to date.  Over the past several months we have accumulated a lot of information about cancer in general, and prostate cancer in particular.  We are always open to sharing what we have learned with anyone who has questions or can benefit from the information.  We would also very much appreciate learning any information you would like to share with us.

So, while the following three paragraphs are more about our personal journey, the rest of the post is more specific about changes we have been making to implement an anti-cancer lifestyle.  We hope this healthy lifestyle information will be useful to you as well.

Now that we are back home, there is time to reflect a bit more on what we have gone through and what lies ahead.  On Thursday, April 26, I had appointments with my primary care physician and the lab, as I transitioned back to the Petersburg Medical Center for local care.  It is hard to express what a pleasure this experience was compared to dealing with the large size and complexity of the urban health care system.  I will receive a hormone blocker injection here in mid-July.  Beyond that, nothing is set in stone.  We will schedule appointments with my oncologist in Oregon for a routine follow-up visit sometime in late September or early October when we return south for our fall visit.  We will also schedule an appointment with my urologist in Oregon in mid-November for another hormone blocker--most likely a one-year implant. 

Since returning home I have been asked by several folks if I'm cured.  That is an excellent question to which I can honestly respond, "After what we have gone through, I certainly hope so".  However, the official answer is a bit more complicated, and we won't know for sure for at least two years.  The cancer I had was "highly differentiated".  Which means that the tumor was made up of cells that were very different from the prostate cells it had taken over.  Cancer can be very dangerous at that stage and, even though undetected by the scans, the probability of micro tumors having formed outside of the prostate is quite high.  That is the primary reason my treatment lasted so long, to treat both the prostate and the surrounding area.  We have faith that the radiation treatment of the margins got rid of any micro tumors that may have formed, but can't be certain at this time.

Most, but not all, prostate cancer cells require testosterone to reproduce.  As a result, I will remain on a testosterone blocker for the next two years.  This will greatly slow or stop the growth of any remaining tumors.  After that, I will discontinue the blocker, and they will closely monitor both PSA and testosterone levels.  An initial PSA "bounce" is expected as hormone levels return to normal.  A drop in the PSA level after the bounce will indicate that I'm cured.  If the PSA level stays high, or if it goes up, there will be more work to do.  If the cancer returns, the secondary treatment after radiation is called "salvage" and current methods of dealing with the return of prostate cancer after radiation have not been shown to be that effective.  However, new treatment methods are being developed all the time and in two years the cure rate for salvage treatment is sure to improve dramatically.  A logical question at this point is, "Why not just stay on hormone therapy forever?"  For one thing, that would entail a permanent life change and would take very careful consideration.  Also, because not all prostate cancer cells require testosterone to multiply, cancer could still grow, although it would likely take longer to become life-threatening.  Continuing hormone therapy for two years past radiation is the current method used to reduce the risk of the cancer recurring.  Stopping the therapy at that point provides a benchmark to evaluate the outcome of the treatments, and to determine whether additional treatment is necessary.

Is there anything I can do in the meantime to reduce the risk of the cancer returning?  Fortunately, the answer is yes.  Keep in mind that everyone has cancer cells in their bodies, but not everyone develops cancer.  If we avoid self-induced risk factors such as tobacco use, being around second hand tobacco smoke, or working around carcinogenic materials, there are six primary variables that determine whether or not a man develops prostate cancer.  These are race, genetics, age, diet, exercise, and stress.  Unintentional exposure to environmental contaminants can also be a factor, but the three main factors that a person can control are to eat a healthy diet, exercise regularly, and reduce stress. 
  
Diet:  I will have to admit that Kathy has been encouraging me to rethink my diet for a long time.  Much as a diabetic or heart attack victim finally wakes up to the need for a healthier lifestyle after-the-fact, it took the diagnosis of advanced prostate cancer to finally wake me up.  There is no way to know for certain if my penchant for sweets and fatty foods caused, or even contributed to, my cancer.  I do know that I wish I had taken diet more seriously starting at least 12 to 15 years ago, when the cancer most likely began to develop. 

Diet is such a big factor in the cause of cancer that a review of all data on epidemiology shows that "the principal difference between populations with the highest cancer rates and those with the lowest was their food".*  Simply put, certain foods tend to either feed tumors directly or contribute toward building the ancillary blood vessels necessary to supply a tumor.  Other foods tend to have the opposite effect.  When I first became convinced of the connection between diet and cancer and we started on a primarily anti-cancer diet several months ago, I joked that the diet is very simple--if it tastes good, spit it out.  That turned out to be untrue, and it did not take long to lose my craving for highly processed, overly sweet, or fatty foods.

It is no coincidence that the recommended diets to prevent all four lifestyle-induced epidemics of the western world--cancer, heart disease, obesity, and type-2 diabetes are so similar.  In fact, if you were to overlay the recommended diets to combat these four diseases, in a lot of respects it would be difficult to tell them apart.  In a nutshell, we have minimized our consumption of foods made with white flour, sugars, and corn syrup; fatty foods (particularly those high in omega 6 fatty acids); highly-processed foods; most fatty dairy products (particularly bulk cheeses); all processed meats; as well as feedlot beef and mass-produced chicken.  We have maximized our consumption of whole grains (cereals, breads, brown/basmati rice, etc.), fruits and vegetables (organic when available), wild fish, legumes, fat-free organic yogurt, and much smaller amounts of organic chicken and free-range, grass-fed beef.  We stray from the diet occasionally, but we don't feel deprived in any way on the basic healthy diet. 

 There are several cancer "super foods", which have been shown to reduce incidence of cancer to almost negligible levels where they are staples in a healthy regional diet.  We try to add at least some of them to our diet nearly every day.  These include, garlic, cruciferous vegetables (broccoli, brussel sprouts, cabbage, etc), turmeric (a key ingredient in curry), pomegranate (100% juice), olive oil, highly-colored berries, green tea, most soy products, and red wine (in moderation).  Dark chocolate is also good.  It turns out that there are synergistic benefits when some of these foods are combined with other foods.  Examples are: broccoli is more effective if eaten with hot mustard, horse radish, or wasabi (wasabi itself has anti-inflammatory properties); turmeric is much more effective if used in an dish which also contains olive oil and fresh-ground black pepper.  I like to think that a square of 72% cocoa Belgian dark chocolate paired with a 4-oz glass of a good merlot has tremendous synergistic benefits, both for the anti-oxidant food value as well as a great stress reliever. 

I'm not saying that if I stick to any particular diet, my cancer will not return.  In fact, it has been shown that diet is more effective in preventing cancer in the first place than it is in keeping cancer from recurring.  I certainly wish I'd been convinced of that before hand.  Regardless, if I can reduce the possibility of recurrence by even a small amount, it is more than worth it to me.  If nothing else, our risk of developing diabetes and heart disease, or becoming obese will diminish greatly, and we'll feel a lot better doing it.
  
Exercise: Moderate exercise is recommended to help prevent and to reduce the risk of recurrence of all cancers.  For some reason, as yet unknown, it requires even higher levels of regular exercise to show positive benefits toward reducing the recurrence of prostate cancer.  Achieving high enough levels of exercise to be beneficial will be a major challenge for a while, at least until my stamina has increased.  You all have permission to remind me to get out there and "just do it".

Stress:  Avoiding stress is very important because the adrenaline produced, particularly during continuous high stress levels, can actually create pathways which promote cancer growth.  If you find that you can't avoid stress in your life (most of us can't), mindfulness meditation and other forms of meditation and relaxation (such as yoga) are highly recommended methods of reducing stress.  To date, I've been very slow at working toward this.  I know from the literature that the potential benefits are great enough that I'm very encouraged to check it out.  In the meantime, I'll be content to put on some soft music, break off a small piece of dark chocolate, pour a small glass of red wine, sit back, relax, and contemplate the many blessings in our lives. 

Keep in mind that these lifestyle changes are to be considered in conjunction with, not as a substitute for, professional medical care.  As pointed out above, these changes will provide great benefits even if you don't have major medical issues.

 Peace and Love to all of you,
      Barry and Kathy

P.S.  We found the book listed below, and quoted in the text, to be very helpful to us.  It's easy to read, well-documented, contains encouraging anecdotal information, and has easy-to-understand color charts and graphs of the anti-cancer foods.  Take the opportunity to read the reviews on Amazon for a snapshot of the book.  We have purchased and/or recommended it to several of our family members and friends.  We will be ordering copies for the Petersburg Public Library.
* Anti cancer - a new way of life, by David Servan-Schreiber, MD, PHD, (p 106). 

Thursday, April 26, 2012

Home SWEET Home

Hello again, fellow travelers,

Our first view out our window.
We arrived safely back in Petersburg on the morning jet Tuesday, April 24.  After being away for 102 days (who's counting), to say it was great to be home is an understatement.  Being met at the airport by friends bearing flowers, escorted home by neighborhood friends, and finding more baskets of fruit and flowers on our doorstep, added to the wonderful feeling of relief at finally being home.  All of this reinforces our feeling that Petersburg is undoubtedly the most caring community on the planet.

That it was such a beautiful day to arrive home was the icing on the cake.  When we first looked out over the glassy-smooth sound, we saw a small pod of harbor porpoises cruising by.  On the first two evenings home, while eating dinner, we watched whales feeding out in front of the house.  This morning is a bit drizzly, but the clouds create a comforting tapestry of shapes and colors, much like a soft quilt, over the mainland.  The lingering mist of whale blows, much like little geysers, appear and disappear against the dark backdrop of Horn Cliffs.  To top it off, there is a beautiful, nearly transparent, iceberg on the beach.  Where else in the world could one enjoy all of that natural beauty in one location from the comforts of home?

The travel itself took more of a toll on me than I expected.  We had to leave Hillsboro at 2:00 a.m. (AK time) in order to catch our shuttle flight to Seattle to make the morning jet to Petersburg.  We had a ton of luggage plus a "fish" box, with some organic chicken and free range beef, to load and unload.  Lugging carry-ons up and down long concourses felt like a much bigger chore than usual.  I was totally exhausted by the time we got home.  The first order of business when we got in the door was a long nap, but after two days and two decent night's sleep, am still feeling tired.  I'm glad we waited three weeks to recover from treatment before making the trip home.  Perhaps it would have been better to have waited even longer.  

Our last visit with Rowan
The rectal pain subsided enough last week that, after a full month, I quit taking Vicodin all together in the hope that I would have time to adjust prior to the trip home.  I did not experience any withdrawal symptoms from the narcotic, as such.  However, as predicted by our son-in-law, quitting the pain killers allowed me to feel a lot more of my "normal" accumulated aches and pains, which had been masked by the narcotic.  I can see how someone could get "hooked".  I'm also beginning to be able to identify more with the old saying that if you are over 65 and wake up without feeling some pain, you are probably dead.  It will take some time to fully readjust.
At the Wooden Shoe Tulip Farm


Cozy with our grandsons

Spending the extra time in Oregon allowed us to watch Rowan grow from a premature baby into a happy, interactive little guy.  He looks a bit down in the mouth in this shot, which we like to think is because he is sad we are leaving.  We will miss our daily visits with him and his parents very much.  During our last week in Oregon, our son, Matt, and his family flew in from Massachusetts for a visit.  It was great to catch up!  Six-year-old Caden has become a master Lego builder and a very charming young fellow.  What a treat to have both of our children and their spouses, and both of our grandchildren together, even if it was for way too short a time.  While Petersburg is still "home", our hearts are now definitely torn.

This entire experience has helped to make us realize what is really important in life and to cherish the many wonderful people who have been with us every step of the way all that much more.  Thank you is just not a strong enough word to express our profound appreciation for all of your support, prayers, and love poured out to us in so many ways during this journey.

Shalom,
    Barry and Kathy


Oregon dogwoods in full bloom
     

Tuesday, April 17, 2012

A Minor (Positive) Change of Plans

Hi, Everyone,

We thought it would be a good idea to jot a quick post to let everyone know that we have cancelled the medical procedure scheduled for Friday.  The good news is that the reason we are cancelling it is that we no longer feel that it is necessary.  We bounced this off my radiation oncologist during our visit on Monday morning and he agreed that there would be no benefit to having the procedure, particularly since the symptoms that the gastroenterologist felt needed to be checked out two weeks ago are now so greatly diminished.

The even better news is that Dr. Hansen  has given us the go-ahead to return home to Alaska until sometime next fall.  He was so confident in continued improvement that he just told us to call and schedule an appointment for a follow-up when we are back in the area.  When we made our reservations back to Alaska a week or so ago, we were hopeful, but not certain that we would get a free pass.  

Leaving here is bitter-sweet.  We have so enjoyed watching Rowan grow and spending an extended time with Erika and Brad.  To say that we will miss them tremendously is a gross understatement.  It helps that our son, Matt, and his family are scheduled to arrive at mid-day tomorrow, Wednesday, for a short visit.  Cancelling the medical procedure on Friday will give us another full day to be together while they are here.  Our six-year-old grandson Caden will get to meet his cousin Rowan for the first time.  We are really looking forward to seeing that!

On the other hand, we have been away from home for way, way too long.  It will be so great to get back to Alaska, get caught up, and to see all of our Alaskan friends over the summer months.  Also, we won't be totally isolated from our kids and grand kids during the summer.  Erika's family is scheduled to visit over Little Norway and Matt and his family will be in Petersburg in August.  And, I'll be very surprised if "Nana" Kathy makes it through the summer without at least one trip south.  Anyone want to take bets on that?

Shalom,
      Barry and Kathy

Thursday, April 12, 2012

Blessed In So Many Ways

Hello again, 

It has now been nearly two weeks since my last session of radiation, and over a week since my setback.  I am slowly regaining strength and endurance, and have been feeling incrementally better most days.  While I still require prescription narcotics for pain management, I have gone from taking one tablet every 4 hours to taking one every 6 hours.  The pain, even at the at that lower dosage, is now less than half what it was when I started pain medication about a month ago.  Sometimes now I even go for several hours at a time with no pain.  However, I tried to skip a dose the other day, but found I'm not quite ready for that yet.  Bleeding and general discomfort have both subsided considerably.  I consider all of this to be a real blessing and a mark of progress toward healing.  One thing for sure, I have developed a lot more sympathy for those who endure chronic pain as a constant companion.  Even when it is successfully managed, you become a slave to pain management and the narcotics reduce your function to some extent. For example, I just resumed driving, and only for short distances.

Now that I'm feeling better and have learned that it will take some time for a full recovery, it is good to sit back and reflect on the many blessings we have received during this time of trial in our lives.  First of all, as we have said many times before, we have been totally blown away by the outpouring of support we have received.  We started this blog with the intention of letting our close friends and family know what we were up to while away from Alaska for an extended time, and to provide periodic updates during treatment.  It has turned out to be so much more.  The responses to our posts, whether as comments on the blog, e-mail replies to the notifications, or phone calls, have given us a level of comfort and a sense of being part of a big, wonderful, caring, family that I could not have imagined.  Undoubtedly, all of your prayer support has made this journey so much more bearable. What an incredible blessing.  Thank you all so much for being there with us, and for us, through all of this.

We expected we would retain some level of contact with friends, but, besides the many messages, we have been absolutely delighted by the number of our friends who have come by to visit us since we have been here.  What a blessing to see a familiar face walk through your door when you are far away from home and not feeling 100%.  It is always so good to see familiar faces, share a hug, and exchange stories. The visits have been a real blessing to us and especially welcome when I needed a boost.  Hillsboro isn't exactly the center of the universe, so we know it takes some effort to get here. We have posted information on previous visits in earlier blogs.  We have had several more visitors since the first of April.

Joyce, Rowan and William
On April 1, our very long-time friends from Petersburg, William and Joyce Bergmann stopped by  to say hello and to meet Rowan.  I knew the Bergmann's even before we moved to Petersburg permanently.  In fact, William gave me my first job back in Alaska after I finished college, and Joyce is Erika's Godmother.  Unfortunately, they were on a tight schedule and couldn't stay for dinner.  Joyce had been going through the life experience of relocating her mother to a facility in a nearby community.  We were so happy that they were able to get away for a few hours.  It was great to see them and we really appreciate that they made the effort to drive over to see us. 

Dave, Barry, and Sally



On Thursday, April 5, more long-time Petersburg friends, Dave and Sally Riemer, came over from their daughter's house in Vancouver for a visit.  We chatted  and showed off our new house and then headed over for dinner at Erika and Brad's house.  Sally made a beautiful quilt for Rowan and presented it to them while we were here.   Kathy cooked one of our favorite nutritious chicken soup recipes, which was perfect for a body on the mend.
 
Barry and John Dewing
On Monday, April 9, a friend from way back (I don't want to say old friend), who I went to high school with in Valdez about a 100 years ago stopped by with his wife, Judy.  I've only seen John a couple of times since we graduated.  We have close bonds as two of only seven members of the last class ever to graduate from the old Valdez High School.  Our school was condemned the year after the Great Alaska Earthquake destroyed much of the old town and killed many of our friends.  The most recent visit I had with John was in Washington D.C. several years ago.  He and his wife Judy now live near Bellingham, so it was quite an effort for them to get here for a relatively short visit.  We had a lot to catch up on.

Barry, Bruce (with Rowan), Sue, and Kathy
On Tuesday, April 10, Bruce and Sue Rauch came over from Vancouver to visit and for dinner.  Bruce and Sue lived in Petersburg a number of years ago when Bruce worked for the phone company there.  We try to see them at least once a year when we are in the area.  We usually visit them at their house or another rendezvous because, in the past, we have not had a place to invite them to.


Based on my experience, I would encourage anyone who is in close proximity to a friend or family member who is receiving medical attention away from home to make the effort to pay them a visit.   The anticipation of the visit, the visit itself, and the fond memories of fun times together that the visit brings are all very uplifting to a person in ill health.  If the person does not want visitors, they will tell you. 


We hope that by having a place of our own down here for part of the year, friends and family will continue to drop by regularly.  When I'm feeling better, we can plan to get out and show off the area a lot more.

 Spring finally arrived in Oregon the first week of April.  Getting out into the warmer fresh air and enjoying the incredible flowers has been a blessing for us as well.  The adjacent photo was taken in one of the public areas within our well-landscaped subdivision.  What's not to like?  We get to enjoy the flowers and other decorative trees and shrubs, don't have to worry about deer, and don't have to do any of the work.

Easter dawned as a spectacular spring day.  We felt blessed to be able to share Rowan's first Easter with him and Erika.  Unfortunately, Brad was working and not able to join us until Monday.  Some of the pictures in this blog were also posted on FaceBook, but are worth showing again.  On Saturday, we helped Erika make a bunny carrot cake in order to continue a long-time family tradition.  Easter morning resting with my snuggle buddy prior to a ham (organic) and egg (also organic) brunch was a wonderful way to celebrate such a special day.

Just being close and watching Rowan grow has been a blessing.  If it weren't for the treatment, we would not have stayed in the area nearly as long and would likely have missed his first charming little smiles, happy cooing sounds in response to play, and how alert and responsive he has become.  It makes me feel better just to be around him. 

On Easter afternoon we went to Rood Bridge Park, which is close by.  It was such a pleasure to wander through the rhododendron garden in 70 degree weather!  I spent a good portion of the time sitting on a bench while Kathy, Erika, and Rowan strolled through the rest of the park.  That was just fine with me.  I was surprised to see so many small animals from my perch in the partially-shaded woods.  All of the animals I saw, birds, mammals, and reptiles, seem to be less frightened by human presence than the animals at home. 


Out of necessity, we have adapted well to life down here, but it just isn't home.  My last (scheduled) Dr. appointment is April 20.  We made reservation to fly back to Alaska as soon as possible afterwards.  Kathy is flying mileage and I needed a reduced fare ticket on the same flights.  The soonest we could travel together is Tuesday, April 24, on the morning flight, leaving Portland at the ungodly hour of 5:30 a.m.  We have a lot to do between now and then and a lot more to catch up on when we get home.  

We are getting close to the end of our journey and hope this isn't the last post.  I'm sure we will have more adventures to share.  Also, there are a lot of things about the disease and treatment options we have learned during this journey that I would like to post.  We will be very busy up until the time we leave Oregon, so it may be awhile before I can get back to it.  So, I will leave this post saying, again, how very much we appreciate all the support, prayers, feedback, visits, etc.  Even writing the posts has been very therapeutic as it has allowed me to put into words exactly what I am feeling.  Thank you all so much for being part of it!!

Shalom,
    Barry and Kathy

A trillium blooming on the shaded forest floor on Easter Sunday


Saturday, April 7, 2012

On The Mend

Hello again, fellow travelers,

Thank you so much for the outpouring of support, the many kind and wise comments, and prayers!!  We had a wake-up call, and I feel that recovery is now finally underway.  I started feeling considerably better by Thursday afternoon and was up most of the day Friday.  I even walked the short distance to Erika's house Friday afternoon for a visit (Kathy was already there, and I rode back).  This morning we were up with the sun, surprised to see frost on the ground, but very thankful to feel well enough to get out of bed at a decent time.

In hindsight, we think that I just way overdid it the first few days out of therapy.  I was euphoric that the long ordeal was finally over, and I was over-anxious to get back to my normal life.  Unfortunately, we found out that it may be some time before we are able to determine the new "normal".  We also think that I allowed myself to become severely dehydrated.  Ever since this started, I have been balancing between keeping enough fluid on board and controlling the urge to "go".  I think I may have gone way too light on the fluids Tuesday morning knowing that I had a long ride to the hospital and some waiting time when I got there.  Our breakfast was also fairly light because we were in a hurry, and I was already starting to feel a little puny before we left.  The main thing is we have learned that I have limitations.  I feel much better now and will do all that I can to be able to keep it that way.

Notes to self: 

1.  Drink plenty of fluids. It is better to have to get up to "go" frequently than to not be able to get up at all.

2. Your body has been through a lot--even though it's invisible to us.  Relax and take it easy.  All the chores you see around you will still be there when you feel better.  The most important have been dealt with. Take short walks and rest often.

3.  Eat several light meals each day rather than trying to go right back to three squares.  Keep the food nutritious and you will likely live much longer.  

4.  Listen to your wife.  She has done an excellent job keeping you in line during your treatment.  Let her do the same during your recovery.    
 
Thank you again so much for your prayers, thoughts  and notes of support.  We honestly feel that all the positive energy kept me going during treatment and contributed greatly to my quick recovery from the latest setback.  Please keep us in your thoughts and prayers.  We have discovered that we still have a long way to go. 

HAVE A BLESSED AND HAPPY PASSOVER and EASTER!!

Shalom,
    Barry and Kathy 

Wednesday, April 4, 2012

Humbled :-(

Hello, dear friends and family members,

Perhaps we started celebrating a bit too early.  I had a very good weekend and Monday dawned as an absolutely glorious spring day.  I may have overdone it with several walks and some shopping that day.  By Tuesday morning I felt miserable, so much so that the lab techs at St. Vincent's were trying to get me to take a wheelchair out to the car after a routine lab visit.  It wasn't the blood draw itself, because I was fading fast during the wait and they could tell.  They brought me water and offered to let me lie down for the draw.  Besides being in a lot of pain, I felt light-headed, weak, shaky and generally crummy all over.  We finished the blood draw and went ahead with our visit to the gastroenterologist, who's office is in a medical complex just down the street from the hospital.  From there we came home and I went right to bed.  I am still in a lot of pain and it seems like the narcotic is no longer doing its job.  Anyway, I spent most of yesterday afternoon and, except for trips to the bathroom and a light breakfast, all of today in bed.  This is the first time that I have actually been bedridden since treatment started.  It may be something unrelated, but it seems to be a composite of all the minor symptoms I felt at one time or another during treatment.  The doctor warned us that it would take some time to recover and he may be right.

The visit with the gastroenterologist went well.  He was the most straightforward and compassionate doctor I've seen since we've been here.  He had obviously read over all the notes from Dr. Hansen, my radiation oncologist, and was very familiar with my case history.  Unfortunately, he had no immediate solution.  He is waiting on the results of a three-day bowel sample and has scheduled a flex sigmoidoscopy for April 20.  That is the earliest that he is available to do the test at the same time there is space in the Medical Procedures Unit  at the hospital.  Because of the level of pain, the procedure also   needed to be coordinated with the availability of an anesthesiologist.  What was that I said a couple of blogs back about big-city health care?

I bring all of this up not for sympathy, but because all of the prayers and positive vibes worked so well during the treatment, I wanted to let you all know that we are not out of the woods yet and that they are still very much needed.  Obviously what I thought about a short recovery and what my body is telling me are two very different things.  Please keep us, and little Rowan, in your prayers until we get our respective medical conditions sorted out.

Thank you all so much!!

Shalom,
     Barry and Kathy