Hooray!! It's Over!!!!

Hello family and friends,

Just a quick update to let you all know that we successfully completed our 8-week course of radiation this morning.  I say "we" because I couldn't have done it without all the love, support, and encouragement from my family here and from all of you.  Kathy has been my champion throughout all of this and made it much less of an ordeal than it could have been. 

Celebrating the Completion

To celebrate, we went to Burgerville for lunch.  I had a  free-range beef -- http://www.countrynaturalbeef.com/story.php--deluxe bacon cheese burger with Tillamook cheddar cheese along with an order of rosemary shoestring fries and a northwest cherry chocolate milkshake. It was a real splurge, but, oh, so good!!  Not to worry.  This was a one-time diversion, and we'll get right back on our healthy diet.

After a few days of rest, I will post another blog providing more details about the short and long-term outlook, some reflections on the disease and the methods of fighting it, but I simply couldn't wait to pass on the good news.

By the way, I don't think we have ever mentioned it, but if you click on any of the blog pictures they will show up as an enlargement on a black background.  Blogs that have more than one picture will show up as a clickable filmstrip at the bottom. 

Shalom,

      Barry and Kathy

No News Is Mostly Good News

Hello again, Fellow Travelers,

Our new living room

There are several reasons it has been over a week since we last posted.  The main culprit is our gross ignorance of technology.  Another was the move into our townhouse over the weekend, and all that goes into relocating.  Friday (the 23rd) was our first night here in our new bed which, fortunately, was finally delivered before we actually needed it.  We have been slowly adding a few of our own items to the many we've borrowed from Erika and Brad, and it is beginning to feel like home. 

What does any of this have to do with technology, you ask?  Well, these homes come with a free internet port wired in.  It took us a day or two to muster the courage to contact the service provider and get Kathy's Mac directly connected.  During that time, I was totally offline.  Then we bought a highly-rated dual band D-Link wireless router.  We procrastinated another day or two before contacting the provider again so that they could make the adjustments necessary for their system to recognize that device.  In the end, after over an hour on the phone with D-Link technical support, we were informed that the router was defective and should be returned to the store.  We think this was their nice way of saying that we are the ones who are defective and way too stupid to set up their equipment.  Yesterday we returned the D-Link and replaced it with a Cisco Systems Linksys E3200 dual band router, which we were able to install and have functional in just a few minutes. We are now getting exceptional password-protected wireless coverage throughout the house.  Maybe it wasn't us after all.  Guess which company gets a 5-star vs a 1-star review from us.  The main thing is, both computers are back on line - as is Kathy's new iPhone that she got for her birthday.  Now we have no more excuses.

Last Tuesday, on the way back from radiation, we visited Rob and Susan Thomason at their Orenco home, where we stayed the past two months.  Their home was such convenient and comfortable housing for us during most of my treatment that we hated to leave.  Thank you so much, Rob and Susan, for providing us the opportunity to stay there!!  Good luck with your future rental venture.

We find that it takes us about fifteen minutes longer to get to the hospital from our new location, adding a half hour to our daily commute.  The good news is that there is now only one more radiation session to go--(Fri. 3/30)!  The bad news is that many of the side effects which made us decide to sit out for a week have returned.  With just one more session to go, we will get through the radiation treatment this time, but it doesn't end there.  I have an appointment with a gastroenterologist next Tuesday to see if we can find a curable reason for the severe pain and bleeding, which, at least to us, is obviously directly connected to the radiation and my unusual vasculature.  As part of that evaluation, I submitted what I thought was a correctly collected "sample" to the lab this morning only to be informed that the information I had been given on collection technique, number of samples needed, and timing was all wrong.  Now I find out that instead, I have to take several different samples over three days, label them in a specific manner, and refrigerate one of them before dropping them all off before my appointment next Tuesday.  Seems like there is always something to keep us entrenched in the Oregon medical system.  The ironic thing is that, try as I might, I have been unable to establish a primary care doctor here.  Instead, I just get referred from one specialist to the next and maintain close phone contact with the Petersburg Medical Center for my other medical needs.  They have been great!  Unless you have received treatment in a large urban area, you have no idea how much more convenient and personal our small-town medical system is for everyday care.

Our last three meetings with the oncologists have been most interesting.  They keep saying, "In all my years of radiation treatment, I've never experienced anything like this."    Dr. Hanson said he had a "one-in-500,000" patient once, but this is a very different situation.  Talk like that makes me feel just, oh, so special despite the pain.  We just hope and pray that either the symptoms will go away shortly after treatments end, or we can find a curable cause and deal with it.  Although I am able to function OK with pain medication, I'd very much like to get back to a more normal, pain-free life ASAP.  A decent night's sleep without getting up every 45 minutes to attempt to drain my bladder would also be a welcome change. I'm especially anxious to get off my prescription pain meds so that Kathy will let me get back behind the wheel again.  Kathy is doing a great job as chauffeur, but I have to admit I'm a bit of a Nervous Nelly as a passenger.

Greater Scaup

Spring is coming very slowly to Oregon this year.  It has been damp, chilly, and windy most of the past two weeks.  We even woke up to 2" of fresh snow last Wednesday.  Unheard of!!  There are flood warnings through tomorrow and rain is forecast to continue through the weekend.  We got out for a short walk with Erika, Brad, & Rowan at Dawson Cr. Park on Monday afternoon.  The main change from our previous visit was that the migrating waterfowl are moving through in large numbers.  The ponds were absolutely full of birds.  Besides the expected mallards and Canadian geese, we saw a wide variety of other species I'd never seen in park ponds before, including the ones shown here. 

Northern Shovelers

Rowan reached his eighth-week birthday yesterday and weighed in at 10 pounds even.  His medication dosage was increased slightly to compensate for his added weight.  He is just so much fun to be around.  The idea of putting Rowan in a stroller and walking over to Nana's house is now a reality.  We are just getting used to the idea of living in the same neighborhood with an adult child and her family, being close, but trying not to intrude too much in their life.  It's very convenient to be able to walk over to their house or vice versa.  And, it makes it that much easier to help Erika out if she needs a break while Brad is at work.   

Rowan @ 8 weeks

Despite the cool weather, the flowering trees continue to impress us.  The ornamental fruit trees are in full bloom and the tulip trees are just starting to open. So far there has been only one day over 60 degrees, but it hasn't seemed to effect the timing of the flowers as much as I'd thought it might.  I'll admit it would be nice to experience some really nice Oregon spring weather before we return home.  The photo below is on the main entrance street to our subdivision.  It would look even better with blue sky behind it.

11th Avenue Entrance to Arbor Roses

In spite of some setbacks, we really are doing quite well.  We continue to stay very busy, perhaps even too busy at times (Kathy keeps telling me I need to rest more).  We are anxious to get the daily commute to the hospital behind us. That will add a full morning each weekday back into our discretionary time allotment.  We are hopeful that our next post will be all about how much better I feel after radiation treatment ended and about all the fun things we are doing prior to our long-awaited return home to Alaska. 

Thank you for hanging in there with us!  We are so blessed to have your thoughts and prayers coming our way!

Shalom,

     Barry and Kathy

Single Digits!!!!

Hello from cool, damp, breezy Hillsboro.

This past week has been a roller coaster of good and bad days.  The week's break from radiation did allow my body to recover considerably.  On the other hand, the realization that taking time off meant that I was not getting any closer to the end of my treatments  seemed to magnify the low points.  By week's end both the swelling and bleeding had subsided a great deal.  So, I went in to the lab Monday morning and, after meeting with the oncologist, decided to resume radiation.  After today, there are only eight treatments left to go!  I felt better after treatment Monday than I had in several days.  We even took a fairly long stroll that afternoon followed by a long nap.  We'll continue with the treatments as long as my body lets me, hopefully this time we can go all the way to the end.

Part of the mid-week setback was the result of receiving my hormone blocker, Eligard.  These injections are given every four months (or as an annual implant).  I received my last shot in November, before we returned to Alaska from our fall trip.  With all that has happened since then, that seems like it was ages ago.  The shot is a mixture of Lupron and a polymer which is injected into the fat layer of the stomach.  It forms a time-release capsule which is designed to meter out the drug uniformly over the four-month period.  The fresh injection dramatically increased the frequency and severity of the hot flashes and night sweats and causes a bit of a headache.  I'd almost forgotten how much fun they are. Thankfully, the rash from the hives is nearly gone, so at least that doesn't light up with the hot flashes.  The nurse who gave me the Eligard injection looked like she came out of a British World War II filmstrip.  She even wore a starched white uniform.  Looks are deceiving because she was very, very good.  These shots can be quite painful and, so far, I've had no problem at all with the injection site.  She suggested using good, old-fashioned Double Strength Gold Bond Medicated Body Lotion (the stuff in the ugly green bottle with the red cap, not the modern fancy Gold Bond varieties) for the remaining rash.  She was spot on and, after using it for just a couple of days, there is hardly any sign of rash and very little residual itching.   

On Friday morning I felt good enough that I attempted to forgo the Vicodin and just took a couple of Tylenol.  That turned out to be a big mistake, and I was miserable until I could safely take another Vicodin four hours later.  Kathy had been after me to "keep ahead of the pain", now I get it!  It is likely that I'll need to continue on the narcotics at least until the treatment is complete.  One of the biggest draw-backs of taking Vicodin is that I can't drive.  Well, I suppose I could drive, but would you want me on the same road with you?   Turn-about is fair play, and now Kathy has to listen to me telling her how to drive in the big city, on freeways, and in parking lots.  I can be quite liberal with my advise (Kathy's words).

Jeanne and Rowan

Let's see.  What else happened during this past week.  We had the townhouse cleaned, bought a bed which is scheduled to be delivered Wednesday afternoon, and set up a borrowed futon as a temporary couch.  Until time allows, the townhouse will be mainly "furnished" with Erika and Brad's cast-offs.  With some essential items we're buying, and some small appliances we already bought for our stay here, we'll manage to camp out comfortably.  We'll move over there this weekend.

Last Thursday our long-time friend (we counted 34 years), Jeanne Roth and her husband Greg, stopped in for a visit.  It was great to see them and to catch up.  Erika and Rowan joined us for lunch.  Friday was Kathy's birthday.  Erika and Brad came over and we grilled a side of coho we were saving for a special occasion.  They brought some decadent dessert treats from the New Season's Market.  This was the first seriously sweet dessert either of us have had in quite some time.

Jay and Rowan

On Saturday Jay and Susan Kittams, friends (29 yrs.) who had lived in Petersburg,  drove over from their home in Molalla.  We went to see the townhouse, stopped by to meet Rowan, and then they joined us back here for a traditional corned beef and cabbage St. Patrick's Day dinner.

Frequent visits with Erika, Brad, and Rowan, either here or at their home continue to be highlights.  Rowan is still packing on the weight and is now well over 9 pounds. He is becoming much more interactive and fun.  He sure is a snugglebug!  He doesn't seem to care who is holding him, just as long as he is being held.

Flower Petal Ground Cover

 

 

Flowering trees are in various stages of bloom all over the area.  With the cooler weather and wind, some areas of the ground are literally pink with their petals.  The later-stage rhododendrons and the azaleas are starting to bloom.  We just wish it would warm up a few degrees so that it felt more spring-like again.  On the other hand, we really can't complain, especially when we hear weather reports from our friends up north.

Sheila and Rowan

 Kathy's sister, Sheila, arrived Monday afternoon from North Carolina.  She is providing moral support and will get to experience our area until Friday.  Erika and Rowan were over for an early dinner Monday evening--grilled salmon again, king this time.  If we plan it right, we will run out of our fish just in time to return home.  All and all, life is good!

As we go through these final two weeks of treatment, your continued prayers and support for the ability to withstand the radiation are even more important to us.   We simply couldn't do it alone.

Shalom,

      Barry and Kathy

HAPPY SPRING!!

R&R Update

Warm greetings to all of you,

It sounds like our blog address was passed around a bit during the past week.  If you are new to the blog, welcome aboard.  If you would like to have your name added to the list of those notified when there is a new posting, please send your e-mail address to Kathy at seanana49@yahoo.com.  Otherwise, check back often as we try to post at least once each week. 

Based on the comments we received on the last post, it appears that I may have unintentionally lead many to believe that I am not receiving good cancer care.  Nothing could be further from the truth.  The radiation oncologists of the Oregon Clinic who operate the Radiation Oncology Lab at Providence St. Vincent Hospital in Portland are among the best in the nation.  Their record of successful outcomes is outstanding.  The problem is that the congenital vascular anomaly I have, which has caused the unusual and undesirable side effects, occurs in about one out of every one million births.  Given that the odds of encountering that situation in a patient with metastatic prostate cancer makes the odds against ever treating a patient with my condition even greater.   If I find any fault, it is with the way my side effects were downplayed until they got so bad I could no longer function.  On the other hand, I'm sure it would have been very difficult, if not even more dangerous, to change the radiation plan once it was in place.  Perhaps I should have taken a break when it was offered earlier in the process.

It has now been four full days since my last treatment and I am feeling much better.  Having the full week off should work wonders and gives me hope for a speedy recovery once the treatments are complete.  Kathy and I worked at the townhouse for a couple of hours this afternoon and I still feel pretty darn good.  I'm confident that we will be able to develop a treatment schedule that will allow me to receive the remaining ten treatment sessions in my plan while minimizing additional trauma.  

Over dinner tonight we each expressed how thankful we are and how important it is to us to continuously feel your prayers and support as we go through the final weeks of this journey together.  

Spring is just around the corner.  

 Shalom,

     Barry and Kathy

Another Slight Detour

Hello to our Amazing Support Team!

How we felt on Friday

Well, we survived another week of radiation, barely.  In our last post I mentioned that perhaps the more-focused radiation would result in less collateral damage.  Unfortunately, it had the opposite effect.  Previously, I was receiving 2 Gy of radiation over a broader area in two rotations of "The Beast" (see post from 2/10).  The more-focused beam, begun Monday, delivered 1.8 Gy of radiation to just the prostate in one rotation.  I was in so much pain during and after treatment on Friday that I made an unscheduled appointment to see the oncologist immediately afterwards.  I was maxing out the daily dose of Tylenol, and it just wasn't doing the job.  He finally realized that my congenital vascular anomaly (one reason for radiation rather than surgery in the first place) was creating a situation he had never seen before in his treatment experience.  He also expressed concern, for the first time, about the bleeding I've been telling him about for weeks.  He assumed (incorrectly) that I had hemorrhoids, and when he determined that the problem was internal, he appeared to be somewhat shocked at the realization of what I have been going through during much of the treatment.  He prescribed Vicodin for the pain and told me to take a week off radiation to recover.  I will see another oncologist to assess the situation before resuming treatments on March 19.  He assured me that this delay will not effect the overall outcome in any way, but should make the remaining treatments more tolerable.  We are prepared to go the distance even if it takes even longer.  

Dawson Creek Park

The downside is that this will delay our return to Alaska by at least one week.  We are thinking now it may be even longer between the end of treatment and when I can travel comfortably. On the plus side, we continue to enjoy the Oregon spring.  Thursday was absolutely gorgeous, reaching the mid-60's.  We took a stroll in Dawson Cr. Park, near the new Hillsboro library.  It's a beautiful area for walking, and very close.  Kathy brought along the title papers for our new house and her passport (proof of "residency"/tax-payer) to secure her Hillsboro library card.  When she looked into getting a card previously, she learned that it cost $100 for a non-resident.   I'm convinced that this is one of the reasons she wanted a home here.

Ornamental Cherry Blossoms

Friday was somewhat cooler, but still very nice.  Now we start into another week of more typical cool, wet Oregon spring weather.  The long rows of flowering trees are just beginning to bloom and they will be spectacular during the next stretch of good weather.  Here is a sneak preview of one growing between us and our neighbors.  Some of the earlier, typical spring flowers are already starting to fade.

Another positive aspect of the revised schedule is that we will have more time to watch Rowan grow.  The little guy had three minor SVT episodes in the 24 hrs. he was  on a heart monitor last week, so an additional medication has been prescribed for his heart condition.   Thank goodness the beautiful spring weather continued into Friday to help to lift everyone's spirits in spite of all the bad news.  

New Exercise - Rowan Lifting

The "kids" came over for dinner Friday night, a gourmet smoked salmon pizza.  With Kathy's blessing, they decided I need more upper body exercise and should start a new routine called, "Rowan lifting".  Both Kathy and I had great snuggle time with Rowan on Saturday, and gave Erika a break, so she could get out for a run.  We took dinner over to have with her Saturday evening.  Brad is back working full time.

Our additional time in Oregon also gives us an opportunity to make the townhouse more-livable before we head north.  We received the keys and final paperwork on Tuesday, have started some minor projects, and will continue as time and energy allow.  The sun shining through the west-facing window into the open "flex-area" is incredibly inviting!  We are anxious to start making it a home.

 Sunlit Flex-Area - 2nd floor, Townhome

Another bright spot in our week was some exciting news from our east-coast family.  Our son, Matt, a marine ecologist and assistant professor at Northeastern Univ. in Boston, had some of his recent break-through research recognized.  It will be published in Ecology Letters (publication of peer-reviewed, novel scientific research).  His university gives a brief synopsis of the research in their online news:

http://www.northeastern.edu/cos/about/news_items/Spring2012/rarespeciesecologyletters.html

"We plan.  God laughs."  Following the R&R from the RADs this week, we should be ready to "spring forward" to the finish line.  It would be very lonely going without all of you and your thoughts.   We appreciate your support for us and our family via comments on our blog posts, emails, phone calls, Facebook, prayers, and all the thoughts and vibes we feel.

With thanks in our hearts, we wish you Shalom,

Barry and Kathy 

The Boost

Good evening family and friends,

I received a bit of a surprise this morning when I went in for my radiation session.  One of the technicians casually informed me that the remaining sessions would be booster sessions.  This was news to me, or perhaps I'd forgotten, but apparently they have completed the treatment of the "margins" and are now focusing only on the prostate itself.  The only difference is that instead of two full rotations of the radiation head, I now only receive one.  So the remaining 14 sessions will be just a bit shorter and apparently more focused.

It is with incredible relief that I report that the hives are almost gone.  There are still large areas of somewhat itchy rash and an occasional mini hive will crop up, but nothing like last week.  Slowly but surely I am adding foods which are known to cause allergies back into my diet and so far, so good.  Wheat, peanut butter, tree nuts, and milk are all know allergens, but none of them seem to be the culprit.  More than anything, I am very relieved to discover that dark chocolate wasn't responsible.  I'm back to suspecting the chemical cocktail of supplements, prescription medicine, and herbals coupled with the compromised immune system as creating the perfect storm.  If I never have to go through that again, it will be too soon.

Rowan getting ready for the walk

Yesterday was an absolutely perfect Oregon spring day.  The official temperature was only in the mid to upper 50's, but without a breath of wind, it seemed much warmer.  Better yet, it was one of my better days in quite some time so I was able to get out and enjoy it.  Kathy and I took three short walks in the morning and then and went over to visit Erika and Rowan.  Rowan seems to have responded well to his medication and has not had a known episode of SVT for several days.

Eagle nest in the Jackson Bottom Wetland

Before dinner we got out for another walk, with Rowan in his Baby Bjorn carrier for the first time.  We walked to our new house, although we hadn't officially closed so we could only peek through the windows.  We had several stipulations written into the contract--to service the furnace and clean carpets--and were curious if any work was being done.

On the way back we walked on the trail above the wetland.  It is a very busy place this time of year.  The air was full of the trills of red-wing blackbirds and other wetland birds.  The waterfowl are pairing up and the resident eagles are getting their house in order.

Typical of Oregon spring weather, today was just the opposite - cold, rainy, and blustery.  Generally crappy weather.  This morning was kind of  a downer for me as well.   I really wish I could put a finger on what triggers how I feel from day to day, so that I could control it better.  By mid-afternoon the weather started to improve and I began to feel much better as well.  I think a power nap helped a lot.

The other major news of the day is that we signed the final papers with the title company after the radiation treatments this morning.  There are only a couple of minor formalities until we officially own a second home.  We were able to walk through it late this afternoon and found that the cleaners did a relatively reasonable job, considering there was a lot of cleaning that had to be done.   Gradually finishing that job to our standards will be chore number one, once we get the keys.   Then, over the next few weeks we can start to make it our own.  I just hope and pray for the energy to be an active part of the preparation.

We can think of so many things to be thankful for over the past week, both in our lives and in the lives of those we know and care about.  We also send heartfelt thoughts to those who are facing significant health challenges. 

Be sure to let those that are dear to you know how much you care about them!

Wishing you spring-like days!

Shalom,

Barry and Kathy

Perspectives: a Baby's Heart and his Grandpa's Fresh Start

Good morning and welcome to March!

Where we live at the moment, March is coming in like a lion.  Those pretty little spring flowers are covered with a very unexpected layer of white.  One perspective--it made for a very bright morning.

At every turn in the road we readjust our perspectives based on experiences.  We thought a quick update would be in order...

Any of you who've read our daughter, Erika's, Facebook posts over the past couple of days will already know this, and we hope you'll bear with the repetition.   Darling, precious Grandson Rowan just became more darling and more precious.   He was born with a congenital heart condition with a name longer than he is--supraventricular tachycardia (SVT), which causes episodes of very rapid heartbeats, sometimes self-correcting, sometimes not.  Here is Erika's short version...

Erika's Posts: (Monday)"Rowan decided that since tomorrow's (28th) his due date, he wanted to go back to visit a hospital. We're home now, stable, and will see the pediatric cardiologist tomorrow. They get you into the ER fast when you have a newborn with SVT...and the ER room gets swarmed with people. On the bright side, we got to see Emanuel's (Portland) new pediatric ER on its opening day... not my idea of a fun evening, though... :(

(Tuesday) We met with the pediatric cardiologist today, Rowan was a trooper and just watched his momma as he had his echo cardiogram done. He has Supraventricular tachycardia (SVT) (310 beats-per-minute in the ER on Mon.), which we have known about since I was 34 weeks pregnant ( Rowan was born at 36 wks). However, he didn't have any SVT episodes after delivery until 6 days ago (we'd hoped that it had corrected during the birth process). Of the SVT he has, it is one of the "better" types. There is a 70% chance he will grow out of it by one year of age. He will be on digoxin (a cardiac medication) until at least one year of age. We will be going in Friday to get a portable halter monitor for him so that they can monitor him for 24 hours. He's a trooper and it breaks my heart that he's going through this, but I keep reminding myself that he won't remember and he is the most precious little guy a momma could ask for! Again, your thoughts and prayers mean the world to us!!!"

**That, my friends, totally changes a parent's perspective!

Kathy accompanied the Probst family to the ER.  There is nothing quite as frightening and traumatizing as watching your grandson (and his parents) as he is attended by a rapid-fire ER team of about 8 - 10 medical professionals, unless you are the parent.  Try that on for perspective.   Great news is that he has gained two and a half pounds in the four weeks since leaving the hospital at birth--from 5#3oz to 7#12oz, is progressing very well, and is such a snugglebug! 

Barry monitored the ER progress from "home" via frequent phone calls.  As we approach the end of the fifth week of radiation, we continue to focus mostly on trying to find some relief from the hives.   At the oncologist's suggestion, he has quit taking all non-food items--including vitamins/food supplements--except his blood thinner, benadryl and acetaminaphen.  This has reintroduced some side effects, but nothing compared to the discomfort of the allergic reaction.  The rate of spread has slowed dramatically, and we feel that we are making progress.  This side effect put all the others in perspective.  The best relief comes from taking a bath with oatmeal "milk" and baking soda followed by a good slathering of aloe vera gel.  As usual, Kathy has been making lemonade out of  lemons.  She found a wonderful scone recipe to use the cooked oatmeal that is left over from making the oatmeal "milk".   Through all this we are incredibly thankful that our "digs" are so cozy and convenient and for the continued prayers and support of all of you.

The townhome passed it's inspection, and we have some idea of what minor issues might need to be dealt with as we move forward in the process.  All of a sudden, having a little place of our own a few blocks from Erika, Brad, & Rowan has become very important to us.

The weather this week has been downright miserable, even by Oregon standards.  Today was the second day we have awakened to see new snow on the ground.  The daily commute to and from the hospital in these conditions kind of reminds me of a scene from "Groundhog Day".

Not to despair, the weather wizard is calling for a return to partly cloudy and low 50's by the weekend.  Let the flower parade continue!

We hold in our hearts those special friends who, we have recently learned, are facing new challenges, and wish them strength and the blessing of being surrounded by love and support.  And we thank everyone for lifting us up in your thoughts.

Shalom,
Barry and Kathy