2014 December 29, Christmas Guest Post

DECEMBER 29 – CHRISTMAS, etc.

           

            Hi, this is Delmarie, Leland’s sister.  We just came home from spending some time with Leland and Eileen.  I know many of you are wondering how things are going.  Since Eileen hasn’t had the time or emotional energy to write I thought I’d write a little from my perspective.

            December has been rough.  Not only was there the monthly trip to Los Angeles but there

were numerous doctor visits and appointments to make or reschedule.  Many days Leland was not feeling well – constantly plagued with nausea and pain in his knee/hip.  Then there was a general lack of energy and extreme weariness.  Leland is seeing an Oncologist in Vancouver now who is willing to work with the clinic in L.A.  They are hoping to be able to go to L.A. only every other month.

            Besides medical appointments to arrange and meet, there were some issues with the house that had to be dealt with.  A water leak under the kitchen sink played havoc with the floor, so they had new flooring put in the kitchen, dining room, utility room and main bath. They had a laminate installed.  It really looks nice!

            When Christmas came Leland was feeling somewhat better.  The radiation treatments to his hip have helped diminish the pain.  Then the Monday before Christmas he had a transfusion of red blood cells which helped to increase the energy level.  He has had a number of changes to the medications he takes.  I can’t remember what they are but some of them have made a difference for the better.

            Christmas Eve and Christmas day Leland and Eileen’s immediate family got together at Cherilyn and Todd’s and had a lovely time. On Tuesday before Christmas they went to the swearing-in ceremony for Grandson, Grant.  He is joining the Army reserves.  Next summer he will have to go to boot camp for twelve weeks. 

            Chuck and I spent Christmas with Ken and our grandkids and Great grands. Then we went to Leland and Eileen’s for the weekend.  The four of us went to church at the Vancouver Adventist Church.  We had never been there before.  It is a beautiful edifice and we enjoyed the service.

On Sunday Leland was feeling well enough to go do some shopping with us.  We then went to eat lunch at Sweet Tomatoes.  That evening Lorance and Judy came for a visit.  It was nice to see them and catch up on what their family is doing.

            Please continue to keep Leland and Eileen in your prayers.  Their trust in God is strong.  He will continue to walk with them through the “Valley of the Shadow.”  It is not easy, but their courage is good.

Addendum from Eileen:

Thank you Del, we appreciate your doing this!

We spoke with Dr. E. on the phone today. We will not go to LA in January, but instead will see the local oncologist, Dr. Liss, and Leland will get his monthly shots there. He is in a very fragile state right now; there will more blood tests done this next week. 

 We had an appointment with another radiation oncologist who would be the doctor to administer the Xofigo (liquid radium), but Dr. E. said today Leland is not a candidate for that right now, as his bone marrow is too compromised, and the Xofigo would make it worse.  Dr. E. would like to put him back on Chemo, a different and stronger one this time, Jevtana,  which is almost always administered by full dose, once every three weeks.  Dr. E. feels that would put Leland in the hospital as weak as he is right now, and said he has to get stronger before that alternative can be considered. He also hopes Dr. Liss will be willing to administer the Jevtana in Low Dose form, once weekly, saying that the condition of the patient must take precedence over standard medical protocol.    We will have to investigate that possibility. Leland is not willing to take full dose chemo, knowing how sick it would make him, being already in a compromised situation.

We really enjoyed Del and Chuck's visit over the weekend.  On Sabbath our kids came for dinner, including Chaunda's new boyfrined Matt whom we really like, except for Todd and Phoenix, who flew to Pennsylvania the day after Christmas to be with Todds family.  Cherilyn will join them tomorrow for several days. Ken and Skyler were also there, and we had a great time together around the dinner table and afterward.

We wish for each of you, our dear family and friends, a Blessed New Year filled with the blessings of knowing Jesus better each day, and always keeping in perspective that some day "Heaven will be cheap enough" that today's problems will pale into insignificance.

2014 12/22 What Now?

What Now?

Leland has been feeling sick and weak for several weeks now.  He finished the radiation back in November, seemed to have minimal side effects.  The full  beneficial effect expected has not yet materialized, although he says there is some reduction in the leg pain.

We saw one local oncologist whom we liked very much, but he is not willing to work with Dr. E.  We saw another one on Friday who is willing to work with him.  Her name is Dr. Michaelanne Liss.  She prescribed a blood transfusion for today, which we went and did this afternoon.  It was in the Cancer Center of Peace Health Hospital. Very well organized, good ratio of  very skilled and kind nurses to patients.   Dr. Liss said he would feel better immediately, but we are reserving judgement on that.  Leland has not only been very fatigued and sick, but has not slept for the last 3 nights.  Dr. Liss believes he needs to discontinue several of his meds, and Dr. E. agreed, so we will begin immediately and reassess his situation in a week or so.  I am certainly hoping all this will help him have more strength and a better quality of life.

With a local Oncologist now, we should be able to cut down on the trips to LA, maybe every other month rather than every month.  The trips are very tiring for Leland, even though we are now getting wheelchair escorts through the airports, and of course they are also very expensive.

We have become the old couple who need assistance with routine things, and are thankful for motorized carts in the stores and wheelchair assistance when needed. There are perks to this-people are mostly very kind,  doing little extras to help us out when needed. We will be getting a handicap parking permit in a couple of days, which will also make life a little easier for us, as it is really hard for him to walk across the parking lot these days.

We take one day at a time, sometimes an hour at a time.  Mark and Grant have been over helping us for a couple of hours at a time, which we really appreciate.

 We are looking forward to Christmas with our family. We will all be at Cherilyn and Todd's including Dawn and her daughter, Ena, whom some of you know. We wish for each of you a full measure of God's blessings on Christmas and throughout the New Year.

2014 November 15 Tattoos and Bones

2014 November 15  Tattoos and Bones

Wednesday this week was Leland's first visit to the radiation oncologist, Dr. Schneider.  We checked in a few minutes early, and waited in a large glassed in waiting room with a gas fireplace, emitting welcome warmth in a huge glassed in room which was rather cold.  The HVAC system is mal-functioning.

We were first seen by friendly nurse named Sandy, attractive, wearing  immaculately pressed scrubs with a turtle neck underneath.  She proceeded to explain the process of a treatment; so we would be able to ask the Doctor better questions when he came in.  Undoubtedly this also saves a lot of the Doctor's time. She showed us MRI pictures of a hip joint and explained that radiation does not "pinpoint" a tiny area or single metastasis, but  a wider field, so will also cover any other mets which are small or not yet  visible. She also told us Leland would have to be "mapped" for his treatments, which consists of a CT scan with complicated measurements and calculations for exact placement of his body for each treatment, so the radiation goes to exactly the same spot each time. We had no idea what to expect, so her time with us was really helpful.

Dr. Schneider came in after Sandy left, and went over the MRI with us again, his assessment was for 5 treatments rather than just one or two, saying that one or two might do the job, but there was a chance it would then be have to done over, and he prefers not to do that.

 He also pointed out very clearly the abnormal area of the bone, and when I asked him for his opinion on the percentage of abnormality, he said "at least 80%".  He also said this cancer is in every bone of Leland's body, and this treatment is palliative, not curative. He told us that Pca bone mets are different than Breast Ca bone mets, in that Pca builds bone rather than just destroying it entirely, so the bones are stronger with Pca than Bca, and not quite as likely to break, that Leland can do anything he has the strength to do, as long as it does not hurt.  Since he only has about 10% of his BC (before cancer) strength, he is probably not in much danger of a break unless he has some sort of accident. At least not right now.

We both liked Dr. Schneider and feel we can trust his judgement, so Leland told him to go ahead and schedule the treatments.

On Thursday, we went back to the clinic for the mapping.  I was not able to go back with him for this but Leland told me he undressed, and they had him lie down on a very flat surface with a "bag" sort of material underneath him.  When the tech got him positioned as he wanted him, they placed three medical tattoos, on on each side and one in the middle of his pelvis.  These can be seen on X-ray  and aid in positioning.  The tech then inflated the bag around him, so it made a perfect mold of his lower body; it hardened rapidly, and will be used each time he has a treatment.  We were gone from home only a little over an hour including travel time.

Treatments will begin on Monday and end on Friday of next week, and will take from 2-6 weeks before being noticeably effective.

We are processing all of this, adjusting to reality as best we can and leaning on God for peace and strength.  Our days pass quickly, we are still unpacking, still dealing with unforeseen issues in this house and learning patience with the slow pace we have to proceed- at least part of the time.

We have a leak in the guest bathroom skylight, which the inspector we hired missed, so he is refunding the cost of the inspection.  We also had a leak in the water filtering system under the sink, which has ruined the kitchen floor, so all that has to be repaired.  Hopefully, that will be the end of these issues and we can turn our complete attention to getting settled and caring for Leland's needs.

Cherilyn, Todd, Mark, Tina, and Grant have been wonderful visiting and helping us out even with their busy schedules.  It is great to take only a few minutes to get to the doctor's office, and of course we love seeing more of Phoenix.  We really miss Del and Chuck being so close, and miss the home we left, but this is where we need to be.  We are grateful for the blessings we have even now.

2014 Nov 6 10 Stories Above West LA

2014 Nov 6, 10 Stories Above West LA

The Infusion Room at Dr. Eshaghian's office in West LA is uncomfortably warm at 10:30 am in spite of the air conditioning.  The building, 20 stories or so, is constructed of steel and black glass and radiates the  sun's heat inside as though the windows were solar panels.  We switch on the extra fan;  the intense heat is dissipated, and we are more comfortable.  Leland is receiving 2 grams of calcium through his port, a process that will take two hours.  His calcium, platelets and red blood cells are all low.  Infusions, injections and oral meds are all being used to normalize his numbers, but they remain stubbornly low even as his PSA continues stubbornly high.

The staff here is great, and all of them work as a team to make our lives as easy as possible under these conditions.  The nurse Lydia, looking more like a China Doll than a nurse, Mary the PA, excellent at her job, are both Asian.  Tony the pharmacist is Filipino,  ramrod straight, short, takes care of all the meds, ordering and seeing that they are mailed to us at home.  Maria, assistant to the doctors, is Hispanic.  She was responsible for our quickly made first  appointment.  She called Dr. Leibowitz at home and told him he needed to call us "today", not in 4 days when he was back in the office and he did.  She shared with us on our first visit that she had developed cancer while pregnant with her last child, and been advised to abort and start chemo right away.  Dr. Leibowitz saw things differently and saved both her and the baby. We shared tears over that story. Dr. Eshaghian is young, olive skinned, jet black hair, practicing orthodox Jew,  intense, very frank and honest in his patient assesments. Dr. Leibowitz is also a practicing orthodox Jew, probably older than we are, white hair, suit, tie and tennis shoes.  All of them are friendly and willing to do whatever it takes to make treatments and travel coincide for their patients who come from all over the world.

We saw Dr. Bahn on Wednesday morning (after breakfast with Lorinda and Frank-what a pleasant interlude) for the prostate ultra-sound.  Dr. Bahn is also Asian, short, immaculate, does the ultra sounds himself-very specialized. It is hard to find that level of expertise, and so his patients too, come from all over the world.  After the procedure, he meets with us in his office, gives us copies of the pictures he took, explains what he saw and the implications.  He also immediately sends his reports to Dr. E. so they are available as soon as we arrive there for the appointment.

Wednesday after seeing Dr. Bahn, we drove from Ventura to Beverly Hills, where Mary had wrangled an unplanned appointment with Dr. Chris Rose, Radiation Oncologist, highly regarded. He squeezed us in, saying that Mary called him and told him he had to see us, since we could not change our flight times.  He was, like all the others, friendly, knowledgeable, and helpful.  His opinion is the leg pain is caused by a large metastasis in the hip socket, and can be alleviated by one or two radiation treatments.  He found a Radiation Oncologist for us in Vancouver, one of his former students, called him as we were sitting there, and made arrangements for Leland to see him immediately. We have an appointment for Wednesday the 12th.

Dr. Eshaghian is disappointed with Leland's response to treatment.  In spite of 16 treatments of chemo, the triple hormone blockade and "anti-angiogenic cocktail" plus other drugs, it is barely holding the cancer in check. There is one more strategy to try, a combination of Zytiga and Xtandi - at the same time.   He has been on both those drugs, one after the other, but not simultaneously. After that, it will be a matter of doing what is possible to keep the monster at bay, until Leland decides he has had enough-that the treatments are impacting his quality of life more than they are worth. I asked Dr. E for a prognosis, and he told us straight up that Leland had an 18 month life expectancy at diagnosis.  He has been blessed with an extra year over that, and another year might be possible. Of course, it is impossible to tell that for sure, but it is an educated guess.

We are dealing with this as best we can, our faith is undimmed. It is difficult at best, heartbreaking at worst, but we firmly believe God sees, understands all we are going through, and has promised to walk with us everywhere, including the "valley of the shadow of death". He has provided all that we really need in terms of medical care, finances, family and friends, and made our lives possible even though we did not choose this path ourselves.  We also remember reading that when someday we can see the end from the beginning, we would not have chosen any other path than the one we have been led upon.  In the meantime, the struggle continues.

2014 November 1 New MRI Results

2014 November 1 New MRI Results

October was a busy month for us, trying to get unpacked and settled, the trip to LA, and arrangements for home repairs.  We are functional and comfortable, but there are still a lot of boxes to deal with; more books, pictures and decor items.  The walls are still bare, and the curtains need to be changed,  and we need to paint the master bathroom.

We have a good storage room at the end of the carport, but it is not large enough for everything, so we are having a garden shed built by Zac Null, Chuck's nephew.  The frame is up, the roof is mostly on and he is doing a very nice job. There is a lot of mud to deal with, as it has been very wet the last couple of weeks.

We have had visitors, the kids, a friend Alice, from Goldendale, and then Ken and Ruth stopped by this last week for a good visit and dinner out together at Sweet Tomatoes.  Thanks Ken!

Leland has been having pain in his left knee and hip the last 2 months or so.  He had an MRI done on Tuesday this last week, and we found out Thursday that the hip has an "early fracture" caused by the bone mets.  It does not hurt him constantly, but when he has been on his feet for an extended period of time such as shopping or walking through the airport, it bothers him considerably.  So he will need to have a wheelchair in the airports when we travel to LA this coming week.  Dr. Eshaghian is recommending radiation to the joint. We have not yet been able to speak with him, but the nurse at the office highly recommended the wheel chair for the airports and one of those carts when we go shopping.

Leland is dealing with all this as usual, very calmly with total trust in God. Me not so much, so my verse for the month is:
 "Trust God from the bottom of your heart;
    don’t try to figure out everything on your own.
Listen for God’s voice in everything you do, everywhere you go;
    he’s the one who will keep you on track.
Don’t assume that you know it all.
    Run to God! Proverbs 3:5 and 6 The Message

I try to keep it all in perspective, realizing there are millions who would trade places with us and  that helps,as do the wonderful comforting verses in the Scriptures.

Happy Sabbath everyone.  I will post again when we return from LA.

2014 Oct 12- Clinic Day and Moving In- Part One

2014 Oct 12-Clinic Day and Moving In

Tuesday Oct 7 

I am sitting down the hall, away from the TV blasting out the morning cotton-candy-for-the-mind-shows.  We are here at Resolution Imaging in Santa Monica for an abdominal and pelvic MRI as well as a F-18 Bone Scan prior to this afternoon's appointment with Dr. Eshaghian. We have requested them to expedite the results and hopefully they will arrive at the office while we are still there.

Back here in the hall away from the waiting room and the TV,  there are a couple of chairs, indirect lighting and undersea paintings on the walls. In front of me and slightly to the left is a huge concrete pillar painted a sea blue-green with images of jellyfish in varying degrees of resolution all around. 

We are on the lower level of the building, where all MRI machines must be due to their extreme weight. People in white coats hurry past, opening and closing doors changing the tone of the constant hum as they do so. 

 I am anxious today, but outwardly calm.  Leland has had left knee and hip pain, aching and fatigue for the last 2-3 weeks that has us both expecting less than good news. Our move has been hard on him, not so much physically, although that has been an issue too, but being unable to do his own work and watching others do it for him has been tough on his spirits. Being on his feet for many hours was hard on the leg even with all the incredible help we had on both ends.  We admitted to each other this morning we are both very worried about the leg pain.

Soon he will be finished with the MRI-the ear phones, the incredibly loud banging, and small tube he must lie in with his leg straight and hurting him.  We will then go the elevator, cross the entry street leading into this complex and go into the west building where the bone scan will be done. We were last here in July.  There was a family in the small waiting room there, tenderly caring for a husband and father who was clearly at the end of his life; stick thin, huge staring eyes, unable to speak more than a word or two in a whisper. I wish I could forget that image, the  pain, the courage, the caring, the desperate hope in their eyes, and the knowing that without a miracle, all of this is for nothing. I wish I could forget so many images of loss and pain in those we love.  I wish- no -I don't really wish to forget so much, as to be transported away from all of this to heaven, where none of this will be be a reality in any life again.

It is now 10:40.  We have been here since 8:30. Leland is checked into the second clinic for the bone scan.  He has to be rehydrated from his fasting for the MRI then have a radio-active injection. They will wait about 30 minutes for that to be effective, then the scan will take about another 45-50 minutes.

2:40 pm.  We arrived here at the clinic at 12:40 straight from Resolution Imaging with no time for lunch. Fortunately, they had ordered in a very nice assortment of Mexican food, some of which was meatless, and invited us to share; it was delicious, and especially nice for Leland as he had had nothing to eat all day except a granola bar after the last test.

The blood tests are good, hematocrit is low, caused by one of his medications.  He will get an injection to encourage more production which should help his fatigue. His MRI and Bone Scan both looked good, no new lesions and some decrease of the old ones.  PSA is down to 10, still too high.  Dr. E says if Leland were younger he would keep him on Chemo for a few more treatments, but at his age since the PSA is at least going in the right direction, he thinks it best to give him a break.  So for now, he is to continue on his current regimen and we are to go back to see him in another month.

Oct 12 

Our move in went very smoothly thanks to so much great help again from friends and family.  We are so very grateful for all the assistance, words are really inadequate here. A crew of 17 helping us move out with a great lunch supplied, then a crew of 14, again with another great lunch supplied for the moving in. There was also much help with cleaning and packing on the other end, and more supplied at this end.  The former owners had paid someone to clean here, but that person had not done the job, so we moved into a house that was not particularly clean. However the kitchen and frig was thoroughly cleaned by Del, Judy and Dottie who cleaned and unpacked while other things were being moved in, in addition to setting out wonderful food.  By the end of the day, the kitchen was functional, the beds were made, and we were all tired!  

Thanks to all who helped so graciously, and special thanks to Del and Chuck, Kathy and Dan both of whom helped so much on both ends, giving so unstintingly and lovingly of their time. And to our kids and Grant, who drop in and help with whatever needs to be done at the moment.

2014 September 23-Last Chemo in Yakima and New Home

2014 9-23-2014- Last Chemo in Yakima and New Home

Today was Leland's last chemo treatment-at least for right now.  He is handling it fairly well, but his body is getting a real assault, and it is time for a rest. His weight is going steadily down and his hair is very thin; I gave him the "Chemo Cut" several weeks ago.   His eyes are really reacting to the taxotere, watering constantly;  feeling dry and scratchy at the same time.  Dr. Brady said last week that he may need stents in his tear ducts, as taxotere tends to scar them.  We will check into that as soon as we get this move over with.

We have a new home!  It is one we had looked at earlier, and liked better than anything else we looked at, but the owners were not quite ready to put it on the market, and it was overpriced.  After the previous offer was retracted, this one was ready.  Negotiations are complete, the price was lowered, and then after inspection, lowered again, as we will have to re-plumb this one too. It is a Manufactured Home on its own 1/4 acre lot, very nicely manicured and landscaped with underground sprinklers, a covered patio, large carport and large shed attached to the end.  In addition to the plumbing we will have to put in a garden shed also, and replace a crystal chandelier which does not go with our style at all, but most of the rest that needs to be done is cosmetic. I guess the chandelier is cosmetic too, but it goes a little beyond that to me: ).Not that it isn't beautiful, it just is not our style.

Yesterday, Leland mowed the lawn for the last time, and we reluctantly emptied the hanging baskets and most of the flowerpots we wish to take with us.  We are glad we got the outside chores done before the rain came-the rest of the work is inside.  At least when it is raining, one is glad to have inside work.

Tomorrow we close on the new house, then will pack the household items we left out to use, then on Thursday the electronics-will be dismantled,  the beds taken down, bedding packed, and misc things still out will be boxed up or put in the travel trailer.  Friday we pack the trucks-with a lot of help, Sunday we clean the house, and Monday Sept 29, we head to Vancouver and move in.  Utilities are scheduled to be in our name by then, and a crew on that end to help unload.  Anyone in the Portland-Vancouver area who is not busy on Monday is welcome to our unloading party!

New address: 4201 NE 143rd Ave, Vancouver, Wa 98682

A special thanks to Kathy for help with packing, and garden goodies, to Del and Chuck for help with so many things, and for inviting us to stay with them over this long weekend while things are torn down and packed away. And to our great neighbors Pat and Chuck, who gave us a going away party last Friday night with excellent company and home baked pies.  Yes, the same ones who plowed us out of the snow so many times over the years we have been here. It is hard to leave Del and Chuck, Kathy and Dan, our church family and our neighbors.

Thanks also to our dear church family, many of whom will be here loading the trucks, helping with other things or bringing lunch to the crews. We love every one of you!

9/11/14 LA Trip and Treatment # 14

We are home once again from our 4th trip to LA for Leland's treatments.  The flights were smooth and on time, the hotel in our "Vacation" Package was the Hilton (!) .  Our room was on the 12th floor facing east with a beautiful view of the city, especially as the sun went down and the moon rose.

The flight home was in a brand new Boeing 737, in use for only 3 weeks.  In contrast to the day light view, the city lights are really beautiful at night, especially with a full moon riding overhead.

Leland's blood tests were good for where he is in the chemo journey, with the exception of his PSA, which  remains stubbornly high.  Dr. Eshaghian is not satisfied, and ordered one more chemo treatment making a total of 2 more to be done in Yakima. Next month, because of the high PSA,  he has ordered another F-18 bone scan and another MRI.  He would also order another Color Doppler Ultra Sound of the Prostate, but the Dr. who does those the best has opted out of Medicare, and the cost is 700 cash.  Dr. E. thinks we can wait on that, but he is concerned enough that he wants to see Leland in another month (usually when a patient is finished with chemo, they only need to go back every 2-3 months) to reevaluate his status and decide the next steps to be taken.

We thought we had found a new home, but our inspector informed us there was a leak under the house, which is plumbed with polybeutelene plumbing, used from the mid 70s until 1995 and the subject of billions of dollars paid out in damages for flooding. The seller first agreed to pay half of the re-plumbing job, then changed her mind, so we withdrew our offer.  We have a couple of possibilities, and are submitting an offer on a place today, but do not yet know where we are going.  We have to give possession by the 30th of this month, so without a miracle, we will have to store our house hold goods.  Cherilyn and Todd have graciously invited us to come stay with them,  so that is what we plan to do. It will be convenient to Vancouver, and of course we love being with them, and it should not be too long before we find our house.

I probably will not post again until after we move, or the next trip to LA which will be in early October. In the meantime, we are relying on God's promises to fill our needs, and we remain grateful for your prayers.

2014, August 25 Treatment # 13-Yakima

Leland's treatment was in Yakima today with Washington Hematology-Oncology Clinic.  It was our 3rd time there. It is not easy to change treatment facilities in the middle of a chemo course.  There is the matter of communication between the clinics which the patient or advocate must monitor to make sure all is as the prescribing doctor has directed.  Then there is the subtle feeling that we do not really "belong" there, the same feeling we had distinctly the 2 times we went back to Renton after we began going to LA.  It is a little uncomfortable, and when we know the amounts of medication are different than the local clinic is wanting to give and insist on calling the clinic in LA for clarification, it seems to be rather an irritant. Its not really overt, but there none the less.  We will both be glad when this round of treatments are finished.  Then we will be finding an oncologist in Portland who will work with the LA clinic. Hopefully, we can fit in there and feel comfortable that we "belong" and that our doctors are communicating well.

One issue that has me scratching my head;  how  does a huge infusion room with 15 recliners for patients, all of them occupied, at least 15 or more  straight chairs for companions and everyone able to hear all conversations across the room,  pass the HIPPA people??  In that type of situation, one could find out one's neighbor, friend or family member has cancer when that person may have wished to keep that information private. Just wondering with all the privacy inconveniences HIPPA has caused,  how this one works. I often read to Leland while we are there, but we are quite often distracted by the medical conversations between nearby patients and their nurses or the doctor, and we can hear it all.

Leland's eyes are being affected by the chemo or one of the other drugs and are rather uncomfortable in spite of a couple of medications he got a couple of weeks ago. He has two or three more treatments in September with a break next week, so we are hoping the eye irritation will resolve when the chemo is finished.

We will sign papers on our home on Friday this week, then will be renters for a month while we search for our next place.  We have quite a lot of packing done-and quite a bit more to do, but bit by bit and box by box it is coming together.  Our buyers are coming tomorrow to help us move the boxes which Mark helped us stage in the garage to the other side.  We are going to allow them to use half of the garage for the month we have left, and in return, they will allow us to leave a few things to be picked up later that will not fit on the truck. They really wanted possession on closing, (naturally)  but have been very accommodating of our situation.  We seem to be able to work well together which is a blessing indeed.

We had to have the septic tank pumped last week.  The tank is an oblong shape with two access lids, one of them underneath the bank in front of the house.  We had to hire the digging done, and when the contractor came to do the job, decided it was too deep for a shovel, left and came back the next day with his backhoe.  It was too large to fit though any of the gates, so Leland had to undo a section of the deer fence to let him in.  He did a very good job, coming right up to one of the water lines for the underground sprinklers, but did not break anything. The tank was pumped on Friday while we were gone to town.  Sabbath morning Leland looked out the kitchen window, and there was an adult doe in the back yard.  First time that has happened since the fence went in.  The guy who pumped the tank had left the gate open in the front side yard next to the driveway and we had not noticed it.  We were able to herd her out and close the gate before she discovered the roses and made a meal from them. When we got home today, the front gate was open again-this time the guy with the back hoe left it open when he came to fill in the hip deep hole and get his equipment.  This time we noticed it, and closed it before any deer came calling.

We have our next trip to LA booked for Sept. 8 and 9.  I did some searching last night for one day round trip tickets, thinking that after chemo is finished, we would not need to stay overnight, as the treatments will not take as long as chemo does.   Imagine my surprise to find it costs 400 dollars less to buy a package "vacation" which includes a hotel and rental car for one day than to fly back the same day!

2014 August 14, Glad to be Home Again

We are always very glad to return home from the truly big city and the expenses of staying there.  We had gotten a "vacation package" which included flight, hotel and rental car. However we are naive to the expenses of travel and staying in a huge hotel-the airport Sheraton. We were glad to find the hotel much better than the dump we stayed in last time, where the parking was free, but the place  smelled like smoke, and made one feel unsafe to put  bare feet on the floor or sit on the bedspread.

   We had to pay 19 dollars to park the car at the Sheraton for one night-no choice-there is absolutely no where else to park.  Then 18 dollars to park in the basement of the skyscraper where the clinic is on the 10th floor. But the trip was good, the doctor's visit and the chemo went well.  Leland's PSA was down to 13 from 19 the last time, which was at least a drop, but not as much as Dr. Eshaghian wanted to see. He however, cautioned us to think of the glass as half full, not half empty. He had been concerned that he would have to make a radical change in the chemo if the Psa did not go down any further. But since there was a drop he is leaving things as they are, with the exception of a change in one of chemo drugs to slightly more next time, and adding another drug to the hormone blockade to block the estrogen receptors for estradiol since that number is too high.  He also  prescribed a shot to encourage the hemoglobin to come up, as that has been low.

Dr. E. also said radiation to some bone spots might be necessary in the future, if the lesions present a fracture risk, as breaking a bone filled with cancer really presents a problem. He also mentioned using alphradon, which is an oral  radioactive  medicine, but said they hesitate to use it because the side effects are difficult to cope with.  Another case of balancing risk versus benefit.

When we asked for a prognosis, he said it is way too early to tell, that it is like calling in the decorators to begin work on the house before the walls are up.  Dr. E. loves explaining complicated medical situations by using analogies, which really does enhance our understanding.  We also asked how long we would need to continue a monthly visit, and he said as soon as chemo is over, we can see an oncologist in Portland and not need to go down there so often.  They are so good, I wish we could have all his appointments there, but I am sure we can find someone in Portland who is willing to consult with them; we can then fly down every 2 or 3 months to be seen.

We stayed Saturday night with Cher and Todd, just arrived home from their annual summer visit with the Bertges family in Maryland.  They were tired and Phoenix was sound asleep way too early, but his little body was still on east coast time.  When we got up at 3:45 am to catch our 6:40 flight, Phoenix was up and ready to go.  Poor Mommy and Daddy!  Todd graciously insisted on taking  us to the airport, then on our return our flight was delayed an hour and a half, so Cherilyn picked us up an hour later than planned, so we did not get back to the house until after 11.  She had to go to work the next day; Phoenix was up at 4:00, slept 15 minutes or so snuggled in their bed, then was awake and ready to be up and have breakfast.  Poor Cherilyn was pretty sleep deprived all day.

We met with our realtor in Vancouver, who in one of those "small world" instances turned out to be Chuck's ex sister in law, highly recommended by a former realtor with whom we had worked and has since retired.  She took us to view 5 or 6 houses, which was instructive, but not very encouraging, as the prices have shot up 20 to 30 thousand dollars in the last 3 months. We did not find anything that we felt we could live with, but are going back tomorrow afternoon to see some more.

Mark came home with us and has been helping us with our packing.  He also took Leland to the hospital yesterday for an emergency Ultra Sound on his lower left leg and foot as it is grossly swollen and does not go down at night. Our PA and Dr. E. were concerned about a blood clot, and told us to get him down immediately with his leg higher than his heart until he could get the Ultra Sound, which seemed to be normal, so it seems to be the chemo, or the hormone blockade, so now he will need to wear support stockings to try to keep it under control.  I hope when chemo is over it will resolve.

I have had a very painful knee for the last 2 weeks, so went to my ortho surgeon yesterday while Leland and Mark were at the hospital. He said it is either arthritis or a torn miniscus, and gave me a cortisone shot in the joint.  Also recommended 800 mg of Ibuprofen 3X per day.  It is feeling a little better, but painful after being on my feet for some time.  If not markedly better by next week, then he wants to do an MRI to check for a tear.  Hope that does not need to happen.

Mark has been such a blessing to us this week.  We got almost all the paintings, the framed family pictures, my elephants and vases and candles and their bases down and mostly packed today.  Also, all the books in the living room bookcases are packed,  as are most of the table linens and cloth napkins. The house is looking pretty bare and forlorn, but progress is being made.  The garage is mostly done, with the exception of some of the tools, two loads have been sorted out for the school yard sale and delivered, with more accumulating to be taken next week.

I have been reading a book by Joyce Myer called Battlefield of the Mind.  It has been really helpful in dealing with the stress caused by this upheaval in our lives.  It is biblical and very spiritual, and has given me some new tools to give my mind some peace, rest and trust. It is a call to consider the thoughts we are entertaining and encouragement to allow the Holy Spirit to work in our minds to transform us into healthy positive  people. I am finding it a real blessing.

2014, August 7 Another Bend in the Road

We will be heading to LA again this weekend for treatment #11 of 15-or possibly even more.

 Yesterday, we had to see an ophthalmologist in The Dalles to check Leland's eyes.  He has Macular Degeneration in both of them now.He can see well enough to drive and do most things, but his central vision is markedly deteriorated.  In fact his vision is very poor in his right eye; 20/200- better in the left 20/50 but still not great.  His eyes have been weepy, red and crusty on the edges, and quite uncomfortable, most likely a side effect of his treatments.  He was given some drops and an antibiotic ointment, which has not had much of an effect yet, but perhaps in a day or two it will.  We are hoping so.

In other news, we sold the house this week.  We had asked God to open and close doors for us;  for His will to be done, and also for this to be a blessing for any potential buyer. We met our buyers today for the first time, and it is a perfect match!  They love our home, and plan to keep up the yard and garden and all the flowers.  We chatted like old friends, showed them some of the details of the plumbing and drip watering systems, and how to clean the glass window in the wood stove with a damp paper towel and ashes which works better than anything else we ever tried.  Thanks, Norm, for the tip : )

We spent last week after chemo on Monday in Yakima camping with Norm and Judy, Del and Chuck, Lorrance and Judy, after which we all went to the old home place in Redmond for family reunion. Nick and Jan keep the yard in great shape, and it was great to leave the dust of the campground for the clean green of the yard.  The best part however, was all the family who were there, getting to visit and catch up on each other's lives.

We came home on Monday and Mark's family came to visit.  They were wonderful, giving us a great kickstart to our clearing out of too much stuff and beginning the packing. We plan to keep at it every day we are home, and hopefully to have most of it done within a couple of weeks. We are hoping to find a new place quickly, and move straight from here to there.  This is such a huge change, and so far from what we planned when we moved here, it is a little difficult to adjust, but we absolutely believe God is leading, so that does help calm the anxiety and the second guessing. It is a relief to know we will not have to deal with all the undone outside work  any more, that we will have a place small enough to care for, be closer to medical facilities and closer to Mark and Tina, Cherilyn and Todd and of course our darling grandsons.

Yesterday on the way home from The Dalles, Leland pulled off the road to check something on the car, opened the door only to have the howling wind grab it out of his hands and slam it so far open that it bent the hinge and did other damage.  Fortunately, he could close it; but when we took it to a body shop today, we were told the bill will be $200 to fix it properly!  That is a few seconds we wish we could do over!

I plan on posting again after this next trip.  We are hoping to have answers to several questions  regarding prognosis and post chemo plans, which I will share here.

2014 July 26 LA and Yakima Treatments 8 and 9

This is rather late in coming; we have been gone so much of the time and had so many new medical appointments to meet that when we are home, I usually lack the mental energy to condense all of this enough for these pages.

Our trip to LA went very smoothly, flights were good, and we liked Virgin America Airline.  TSA was even good, no body scanners this time.

  We went to Ventura on the first night in order to be in Dr. Duke Bahn's office first thing Monday morning for a Color Doppler Ultrasound and expert disease staging.  Dr. Bahn is the the doctor on the west coast to which the Prostate Oncologists send their patients for more accurate staging. He was very thorough, and followed the test with a consultation in which he asked many questions and explained what we were seeing on the ultra sound pictures. When told Leland had recently been through Provenge, he completely dismissed that by saying he has not seen a single patient helped by that treatment.  For certain Leland was not. He also told us there was evidence his tumor had been larger and extending into the bladder neck, but looked as though it has been shrinking, due to the chemo.

We then drove to LA, and found our motel-a less than satisfactory place- then to the clinic for chemo and a consultation with Dr. Eshaghian.  I began feeling nauseous while there, and by the time we got back to the motel, I was sick.  Spent the night sleeping between bouts of vomiting.  It must have been food poisoning.  I still did not feel very well Tuesday morning, but could not bear to send Leland off by himself for the next round of testing-a Pet 18 bone scan and MRI.  I knew there would be another bunch of paperwork to fill out for which he really appreciates my help, and I could hardly stand the thought of being in that depressing motel room all morning alone.

The testing went fine, and we received the reports last weekend. His disease is advanced, which we already know, but now we know the extent.  The cancer has spread throughout his skeletal system,  however we do not know when it reached his skull, because no one has monitored that before.

On Tuesday of this week, Leland had an Echo Cardiogram done, then yesterday went met with the Cardiologist.  This was done because these treatments are hard on the heart, and many patients die of heart disease caused by the treatment.  They will be monitoring him very closely, with these appointments being repeated every 12 weeks or so-something else which has not been done before. The Dr. here was very friendly, very informative, looked over Leland's drug list quite closely, and remarked that he is on some very state of the art medications.

The trip to Yakima on Monday went well, and they administered the chemo per Dr. Leibowitz's orders.  It only takes us 1.5 hours to get there, which is better than the 4 it took to Seattle.  We had hoped to be able to do this at the clinic in The Dalles, but they were not willing to work with Dr. Leibowitz apparently, as they did not bother to return the phone calls from LA.

Leland gets his blood drawn and tested each week before the chemo is administered, and his other medications are adjusted once per month in LA, or sooner if we call with symptoms.  He is getting welts on his  abdomen from one of his daily shots, and we talked to Dr. E about it and sent him pictures, but he feels the benefit is bigger than the minor discomfort caused.

He is feeling reasonable, still low energy, but spending a lot less time on the couch. The treatments are having effect, and his PSA is down to 13.8 from 107.  Best of all, the Circulating Tumor Cells are down to 2-from 95.  We were hoping for under 5 the first time before Provenge, when they were 17.  They then shot up to 95 the second time post Provenge..  So 2 is an excellent number and Dr. E was very pleased.  Said he would take a low CTC score over a low PSA any day. He also remarked that Leland's treatment in Seattle was good as far as it went, but was only "half assed."  I asked what he meant by that and he said the Anti-angiogenic Cocktail is extemely important, as it prevents new blood supply from forming for new lesions.

 We are grateful for good insurance which pays most of the medical bills and most of the drug costs. We are also grateful for good medical care which allows a decent quality of life even in the midst of a ravaging disease.  Once again, we are also grateful for your prayers in our behalf, and for the love that comes our way.  And a big thank you to Del and Chuck for rescuing us in The Dalles this week, we feel loved and cared for.

2014 June 15 Home From LA

We arrived home safely tonight right around 5 pm.  It was a long trip, and we are glad to be home.

  Dr. Leibowitz and his team  were very kind, very thorough and spent a lot of time with us.  He has changed the protocol quite a bit from what Leland was on when we arrived there, added several new medications, both oral and injections in addition to the chemo infusions.  We also saw Dr. Leibowitz's colleague, Dr. Eshagian, a younger oncologist working as part of the team.  Dr. Eshagian asked us if anyone had told us that Leland's initial diagnosis meant that he had about 18 months to live at that time, and that Dr. Chen had done well to keep him going as well as he has for over two years.  He also said there is more that needs to be done, and they both told us they have every reason to believe this new treatment will put him into a more durable remission. Dr. Leibowitz has been doing this for many years, with the bulk of his patients being prostate cancer victims.

We will be changing from the clinic in Seattle to an Ocologist in Yakima for the local part of the treatment, a Dr. who works with Dr. Leibowitz.  We hate to leave the Seattle Clinic, they have been great, but both of us think we need to move on, and Yakima is much closer for the weekly trips.  We will still need to go back to LA next month for assessment and more testing and treatment.

We feel a little overwhelmed with all the changes, and have a lot of work to do to get it all organized, but they were very helpful with that at the clinic, and have made it easier with their system of patient care.

We called  Ed and Dana on Friday afternoon on our way back  and asked if they would be home on Sabbath afternoon; they graciously invited us for dinner and to spend the night.  We met some of their friends and had a very enjoyable time with them.  What a nice change it was from driving all day long and a hotel!  Our drive today was shorter, and we were able to stop in Redmond for an hour or so to visit with Nick, Jan and Vonnie. It is good to be home, in the peace and quiet and off those California Freeways!

2014 June 5 4th Treatment Finished

After Leland's third treatment on the 29th of May, some adjustments were made in his medications and the time schedule, to alleviate the nausea which was nearly constant.  He had a much better week, with more energy and almost no nausea at all. Mike Payne drove us up; Thank you Mike!

Treatment # 4 went well, the blood work looks fairly good, medications were tweaked a little more; PSA and CTCs were drawn again.  Dr. Sweet called us today;  Psa had gone down from 107.6 to 73-a very nice drop and a good sign  the chemo is working again. CTC results will take several more days.

We visited one of the newly legal medical dispensaries to buy some CBD oil, an interesting experience.  Dr. Sweet believes it can only help, so we are trying it.

In the meantime between my own PT appointments and Leland's appointments,and attempting to get our yard in some kind of shape again, I have been reading a new book by Dr. Edward Friedman regarding hormone therapy, cancer and Alzheimer's.  I contacted the author just this morning by e-mail and asked him if he could recommend any doctors practicing by his protocols.  He gave me a name and phone number within the hour, I called the office, spoke with a patient coordinator there, and Dr. Leibowitz called us tonight.  We had been thinking to finish the chemo, go for another opinion and have the two doctors consult. Dr. Leibowitz wants to see us next week!  (He is the pioneer of the current chemo regimen being used by Dr. Chen, Low Dose Taxotere, Carboplatin and Emcyt. He began using it in the 90s with very good success.  It was finally approved by the FDA in 2004) Dr. Leibowitz practices in Los Angeles, so we are busily planning our trip, Leland mapping it out, I working on medical forms and records which will be needed for the visit.  We also have to have his original biopsy slides sent there, for review at Johns Hopkins.

He will have his chemo infusion for next week down there, the next two in Renton, and a week off.  Then one more in LA and the rest of them up here. Then the treatment will change for a few months, before changing again.  Dr. Friedman emailed me that the death rate for patients nationwide with Leland's level of disease is 90% within 5 years. Dr. Liebowitz has 70% of his patients still alive and doing well at the 5 year mark, quite a difference!

 I am so thankful he is feeling well enough to do this.  We will be driving.  Leland has figured the trip will be about 15-16 hours, not including breaks every couple of hours. I feel a little overwhelmed, as I said, I did not expect this so soon.  But Dr. Leibowitz had compelling reasons why we should come sooner rather than later.

Delmarie very kindly sowed my Zinnia seeds for the back yard and planters, then sprouted them.  To top all that off, she also came over and helped me get them in the ground and in the planters. Would never have happened without her- thank you so much Del, and Chuck too for helping with some other chores, like shoveling barkdust out of the pickup and other things too.

 This spring has been especially challenging with Leland sick, and my arm still recovering, not to mention that we are hardly ever home to get things done.  When we are, there is so much to get caught up on, it is hard to get outside. My shoulder is improving a little every week, I have graduated from just passive exercises to more muscle building which seems like a real milestone to me.  The weight is only 1#  at home but it is a start. In the gym with my therapist, I was doing 5# for some of it, but he does not want me doing that without his supervision. I felt pretty wimpy working out in the gym beside a guy who was lifting 100# weights!

Thank you for the caring emails some of you sent,  I intended to answer all of them personally, please know they were appreciated so much.  I will blog again when we return home from the LA trip.  I believe this is an answer to our prayers for guidance and open doors for more advanced treatment, so we have peace, and will do the best we can to do our part.

2014 May 24 Home from 2nd Chemo Treatment

As I sit at my little desk overlooking the back yard, I can see our Clematis which has burst into full and glorious bloom. It is absolutely lovely-makes me glad every time I look out the window here or over the kitchen sink.

Del and Chuck took us to the clinic last week, we left on Tuesday afternoon, stayed over in "our" hotel, with treatment being Wednesday morning. We were there from 7:45 am until 1 pm.  Leland has been feeling so low with continual nausea, they gave him an extra- long- working- anti emetic along with the usual one, in addition to some more prescriptions to take home. He has felt better since then, which has been a mercy since I have needed him to drive me to Doctor and PT appointments of my own on both Thursday and Friday, one in Hood River and the other in The Dalles.

 Thank you Del and Chuck for the gift of your time-we will never forget all these trips and your cheerful acceptance of hours and hours of waiting for us.

We were given the results of the post-Provenge Circulating Tumor Cell Test.  Not good at all.  The number we hoped would be lower, had instead risen from 17 to 95. Less than 5 is optimal.    Combined with PSA results of 107 and the CT report of innumerable new bone lesions, the prognosis is grim.  However, there are still more treatments to try, including another chemo if this one does not work which will mean the cancer has mutated into a different form.  It is very nasty and aggressive, but we knew that from the beginning. Dr. Chen will order the CTC  and PSA tests  again in 2 weeks after Leland has had 4 chemo treatments, and that should tell us whether or not we need to change horses in the middle of the stream.

We have a lot of surreal conversations about all this, conversations which we never dreamed of in the past.  But it is good we can communicate, not all Pca patients and their wives have that ability as I read on a couple of websites and list-serves to which I subscribe.  We are thankful for the many ways in which we can see God's blessings, that both of us have not been incapacitated at the same time-we take turns, that we have been given a grant that pays the thousands of dollars in co-pays and that our old car keeps running. As mentions above we are very thankful to Del and Chuck for all their help and support, and to our kids who help us as they are able.
We are also thankful for those of you who care enough to read this and pray for us-and let us know. Thank you!
Most of all we are thankful to understand that God know all about this, He cares more than we do and has promised to walk though the hills and valleys of life with us.

2014 May 16 Back to Chemo

As I mentioned in the last blog, Leland has not been feeling well  for the last 3 months or so.  He has been functional part of the time, but nausea, heartburn and heart palpitations sent us to the local clinic for a check.  Our PA did a thorough check which included an EKG (slightly abnormal, but nothing to get too excited about right now) and spoke with the PA at the cancer clinic. I was pretty impressed by this, as no one else has taken the time to actually consult with them.

It was determined he needed to be seen up there, so we took an unscheduled trip to the clinic, and again Del and Chuck went with us, Chuck doing the driving. Leland's PSA shot up from 11 to 100 during the time he was on the Provenge treatment. That fact plus his unwell state convinced Dr. Chen the cancer is very active and he ordered a CT scan to confirm, and told us to make an appointment to begin Chemo again the following week.

So we returned to the clinic on the 14th; the CT scan confirmed Dr. Chen's diagnosis, and Chemo was begun that morning. It was the first of 12 weekly treatments.  As before, Leland also received an infusion of 25,000 units of vitamin c, B-5, magnesium and calcium as well as an anti emetic then the two chemo drugs, Carboplatin and Taxotere and finally Zometa for his bones. All of which took most of the day. Our friends, Mike and Joan took us up this time; were very kind and patient with all the waiting we had to do.

The CT scan showed the involved lymph nodes resolved, but the bone involvement had increased extensively, to include ribs, sternum, scapula, pelvis, and spine. Not what we were hoping to hear.  It appears at this point the Xtandi and Provenge did nothing for him at all.  Dr. Chen and Dr. Sweet both told us that he should begin feeling better in a week or two.  Yesterday was probably the best day he has had in months, but today he has been sick again, and his his chair most of the day, except for doing a little painting on the Hidden Pines sign which Todd made for us and filling our supplement boxes for the week.

We do not know what to expect from one day to the next, so it is hard to make plans with others and then have to cancel.  Lorance and Judy were coming this weekend to visit and get the video Leland created of Kevin and Lucy's wedding. But we had to cancel because he is feeling too sick for company.

All the kids were here last weekend for Mother's Day, which was really great, then Mark stayed on for the whole week since he is out of school for the summer now. It has been good to have him here, as he has been helpful catching up with the outside work, plus we enjoy his company and he makes us laugh with his quirky humor.

We made the difficult decision to put the house on the market  as we just cannot keep up with the outside work except for the mowing. If the house sells, we will be moving back to the Vancouver area, to be closer to medical care and the kids, although I don't know how we will get along without Del and Chuck nearby.

Of course we struggle with all this, but have faith that God knows our needs, and will be there for us in the future as He has been in the past. We have asked Him to open and close doors in the matter of selling the house and choosing a new one if this one sells, so rest in faith that His will will be made clear to us.

2014 April 27 Provenge Treatment Completed

Leland's second Provenge treatment began on April 7 with the aphoresis procedure in Vancouver. Again, Mark and Tina were able to come and entertain us for much of the three hours Leland was in the chair.   As before, Del and Chuck drove us there and back.

  On Thursday the 10th, the four of us left again for Seattle Treatment and Wellness Center and the 2nd infusion.  Afterward, we met Chaunda, and went to dinner together, then took the Bainbridge Ferry across the Sound to stay at Raspberry Cottage until Monday.  We had a great time, seeing part of the Skagit Valley Tulip Festival on Friday, attending church in Paulsbo on Sabbath, and exploring Bainbridge Island on Sunday. On Monday we cleaned the house, and left for home.  We got only as far as Bremmerton before it became very obvious Del and Chuck's car was not going to make it any further without a major transmission repair. We got a tow, they gave us a loaner car, and we returned to the Cottage until Thursday morning.

Not wanting to waste any vacation time, even though it was forced on us, on Tuesday, we again took a ferry to Seattle, this time as foot traffic. The streets going uptown from the ferry are extremely steep, but Leland had the idea of riding the escalators in the buildings on the corners to the next level, so we did that for 3 of the blocks then walked about 10 more blocks, caught the monorail and spent the rest of the day at the Seattle Center, where among other things we saw a 3-D movie about Madagascar and Lemurs.  Very interesting and fun. And we love the ferry rides.

On Wednesday, it was back to Seattle on the Ferry again, this time for Leland to return to the SCTWC and have his central venous cathether flushed and the bandage changed.  Then the ferry took us to Bremmerton and we picked up the car, now running very well, went back to the Cottage for the evening and then home on Thursday with a stop in Portland for a doctor's appointment for Chuck.    We had Friday at home,then Sabbath after church we drove to Portland to spend Easter with our families. Cherilyn and Todd put up the 4 of us very graciously, and hosted a family dinner for both extended families, with a fun easter egg hunt and egg toss. It was great to see the cousins and babies together and get caught up with the news, as well as meet Ken's new and lovely girl friend, Bryn.  

On Monday, we headed to Vancouver for the 3rd and last aphoresis procedure.  Home again for Tue and Wed, then Thurs back to Seattle for the last infusion, then a drive to Portland to spend the night and be at Portland Adventist Hospital by 9am to have the central venous catheter removed.  Leland is happy to be rid of the nuisance of having to cover it with plastic wrap for a shower, and taping it to his chest so it would not flop around when he moved.

Del and Chuck have been so wonderful to us during this time, giving so much of themselves to drive us to our appointments, always making us think they are happy to spend the time with us.  I don't know what we would have done without them and their loving caring ways. We are truly blesssed with family and loved ones who are helping us through this time.

We will have another Circulating Tumor Cell Test done on the 9th of May, and get the results on the 15th when we go to the next appointment.  Leland has not been feeling very well, very low energy and a lot of nausea.  We hope that the medication he just discontinued was the cause and he will feel better soon.

2014, March 31 First Provenge Treatment Done

A week ago to day, March 24th, we went to Vancouver for the first part of Leland's first Provenge treatment.  We caught a ride with the Mt Adams Senior Transportation, had a very nice and friendly driver who came to our door and delivered us to the Red Cross Center in Vancouver.  It is the only one between California and Seattle which does the aphoresis treatment.  Within moments our nurse had him attached to a very sophisticated machine with a lot of tubing; she told us that during the 3 hours he would be hooked up, his entire blood supply would be run through the machine twice.  We could see the the progress being made as the white cells and plasma were withdrawn into a gas permeable bag. The nurse told us the cells would be able to give off carbon dioxide and take in oxygen as well as be nourished by the plasma en route.

He handled the treatment well, and we returned home later that day; our driver had waited for us.

  On Thursday, the 27th,  we went to Seattle in the morning, this time with Del and Chuck to do the driving.   Leland's re-infusion was scheduled for 12:45 pm.  He had to have pre-meds infused first, then the main infusion of his newly activated immune cells, all of which took about 3 hours.  Then we went to a division of Quest Laboratory in the same building and he had his blood drawn for Circulating Tumor Cell Test as benchmark.  They will order another one a short time after the Provenge is completed;  it should assist the dr. in the determination of how well this worked and what the next step in his treatment will need to be. We ent to dinner at the Spaghetti Factory, and stayed overnight in our hotel, rather than make the round trip in one day.

My shoulder is slowly progressing, and I am able to do a little more with my right hand, such as dress myself and again, and cook.  I am still unable to drive, and still in PT which is still quite painful at times. I was certainly not prepared for the all the ramifications of this surgery, but am so grateful it is done, and healing  even though it is very slow, and still quite uncomfortable a good deal of the time. I am able to key board with both hands again, although it is a strain-makes my right hand and entire arm ache.

We went to Portland on Sabbath the 28th for Phoenix's first birthday.  What a wonderful time we had with all our family except Grant there, as well as many of Cher and Todd's friends and their little ones.  Cherilyn had made a beautiful cake with fondant frosting and jungle animals on it.  Phoenix took it all in stride, and seemed to enjoy every moment.  We got to see him take some toddling steps on his own, and spend some great play time with him. He is a darling little man, and we are very much in love with him.  Cherilyn and Todd are such good parents, it does our hearts good to see them all together.

2014 MARCH 8

Another month has flown by. We returned from Seattle on Wednesday this week and we are facing another bend in the road.  Leland's PSA jumped to 11 which indicates positively the Xtandi is not working. Dr. Chen says to discontinue and has ordered him to begin a new treatment called Provenge; which is an immune system assault on the cancer.  It will consist of three treatments two weeks apart over six weeks.  His blood will be withdrawn after a catheter has been placed, his immune cells will be separated out and the rest of his blood will be returned to the other arm.  The removed dendritic immune cells will be sent to a specialty lab in California, exposed to prostate antigens, sent back to the Seattle clinic and infused back into his blood stream three days later.  This hopefully will encourage his immune system to fight the cancer and give him more quality time.

Since I am still unable to drive and Leland is unable to stay awake long enough to make the trip, Del and Chuck came with us to Seattle to help drive.  We stopped in Kelso to see  Karly and Tristin.  Karly looks good and Tristin is adorable.  Our visit had to be short because it was a long day.  Upon reaching Seattle we met Chaunda and got a tour of her warehouse apartment, an interesting experience!

We had a great dinner at an Indian Restaurant; went to our hotel and turned in.  Wednesday while Leland and I were at the clinic Del and Chuck took the car, went to the mall, did a lot of walking,a little shopping, and a lot of waiting.  Leland was not feeling very well--head cold, sore throat and Dr. Chen ordered a vitamin infusion which took another hour and one half in addition to the regular two and one half hours we usually spend.

The trip home was long but thankfully the roads were bare.

Since I am still in my sling and still experiencing a fair amount of discomfort Del kindly offered to type this for me.  So this is a joint effort.  My surgery went very well--at least according to the doctor.  I feel like I've been ruined!  Seriously though, I am slowly progressing with the help of my excellent physical therapist.  Leland has been a wonderful nurse and literally my right hand man.

We remain, as always, very thankful for the many blessings we enjoy.

We really appreciate Del and Chuck's help.

2014 February 5 More Adjustments

We returned home from Seattle an hour and a half ago to the most unwelcome sound of the fire alarms going off yet again.  We had the same situation on Monday night when we returned home form Portland.  We had attended Kevin and Luci's lovely wedding, then spent Monday caring for Phoenix, as he was sick with Pneumonia; had been running a fever even while on antibiotics, and could not go to his daycare. Both Cher and Todd had important business to do; we were free and delighted to spend more time with him even tho he was not feeling well.  At least he could stay home in his own environment.

We could hear the fire alarms going off as we got out of the car in the garage, as I said, a most unwelcome sound!  Leland got them turned off; we proceeded to unload, unpack and repack for the trip to Seattle the following day.  I was right underneath one when it went off again with an earsplitting screech, which startled me rather violently.  I involuntarily clapped my hands to my ears.  In doing so, I further tore the already torn muscles in my right rotator cuff, making my right arm almost useless,  and making it impossible for me to drive. 

Chuck was willing to come along with us and help with the driving, as Leland is getting increasingly fatigued and unable to stay awake long enough to make a long drive without help. It was not easy for Del and Chuck, because she came home from the wedding sick, but felt she could manage without him for one night.  Thank you both so much; we could not have done it alone!

The news at the clinic today was not what we wanted to hear, Leland's PSA went up by almost 50%, and several other elements of his  blood tests were outside the normal range. Dr. Chen put him back on Lupron, ordered a shot for his low white count and an infusion for his bone strengthening medication. That took an extra hour and a half or so because we were one day too early for Medicare to pay for the regular shot.  We had moved his appointment up one day to accomodate my surgery scheduled for tomorrow, not realizing the implications.

Dr. Chen wants Leland to stay on the Xtandi for one more month, and if his PSA continues this rapid rise, is suggesting Provenge would be appropriate for him.  It is a new therapy which is an immune therapy-blood is withdrawn and treated with some substance which I can't remember, then returned to the patient, which then encourages the immune system to attack the cancer.  There are 3 shots, each two weeks apart, and the cost is 100,000 dollars!  Medicare does pay for this, so our insurance will pay also.  We are hoping our grant from the PAN foundation will pay the enormous co-payment. 

We are grateful for every good day, grateful for insurance which pays these high medical bills and the foundations which help with the high co-payments. We are taking one day at a time, trusting that God will continue to lead us in the decisions we need to make.     

2014 January 20 Through the Snow

Leland's last appointment was January 9.  We traveled through quite a snowstorm on Snoqualmie Pass.  We were very glad to drop out of the snow zone and into the rain on the other side.  We met Chaunda for supper, and spent the evening with her, which we always enjoy. It was good to relax after so many hours in the car.

Leland's PSA has continued the slow rise, but Dr. Chen says he was not on the X-tandi long enough to see a difference when his blood was drawn, only about 10 days.  Otherwise, his labs looked good, and treatment stays the same for now.  Next month will give us a better picture of the PSA trend, so we will have to wait on that to draw any conclusions as to the effectiveness of this new treatment.

After we finished at the clinic on Thursday, we drove to Portland-in more rain-and spent the weekend with Cherilyn, Todd, Phoenix and Cierra, my great niece who is staying with Cherilyn and Todd this year. We had a wonderful time as always, and got to see Phoenix climb the stairs-so cute!  His parents allow him to climb as long as someone is right there to watch him, and catch him if he falls.  Otherwise, there is a gate which is kept closed so he can't crawl over there when no one is watching.

Leland is a little low on energy, and has trouble staying awake if he is not actively doing something, so he spends a fair amount of time with his computer and a train layout that lets him be very creative while keeping him awake.  He also makes little videos of the pictures we take of Phoenix, and we all enjoy those.

We stay busy with our various appointments and seeing friends and family.  Today my doctor who did the endoscopy told me the biopsies were negative for Helicobacter and one other thing which I can't remember. So I will not need to take antibiotics for the ulcers, for which I am grateful.  I will need another biopsy on the esphogeal ulcers in April to check healing or lack thereof.  I am doing all I can to handle my stress more healthfully, meds, exercise, counseling, and avoidance of irritating foods,   so hopefully, those ulcers will look a lot better in April!  

Lorance and Judy came on Sabbath, and spent the night.  We were all able to spend some time together with Del and Chuck on Sabbath evening, then for Sunday morning breakfast.  I felt a little handicapped because our cooktop died last week, so everything has to be done in a crock pot or the oven. Breakfast will better next time you come, I promise! In spite of that, we had a wonderful time being together. We are looking forward to Kevin and Lucy's wedding February 2, where we will expect to see many of you.

Our next appointment is February 6; we will spend Leland's 68th birthday traveling to the clinic, then go to supper with Chaunda somewhere.  She will have just moved into her urban loft warehouse apartment, so we are looking forward to seeing what her artist soul will do with that space; something entirely unexpected I am sure!

January 6, 2014 Back Again

I have not posted here since October 18; the time has gone by very quickly.  Thanks to Google and Wild Blue and their "improvements" somehow my e-mail and my blogger accounts were merged.  I was unable to figure out how to separate them and/or get into my blogger account.  Leland was also unable to figure it out.  Mark was able to ferret through though, so thanks to him, here we are again.

Leland's PSA has continued a slow rise, so at his appointment in December, the Dr. changed his medication from Zytiga to X-tandi. He is not tolerating it quite so well, has had some nausea and some joint pain, both of which are common side effects. However, he is still functioning and feeling fairly well.
 He went outdoors on Sunday afternoon late when the temperature had risen to 36 and cut down a few trees for next year's firewood, then cut up several small ones which had been down for a couple of years.  We brought them in with the small tractor and trailer and stacked it in the breezeway, as we had not put up quite enough this last fall. He did pretty well, but that was enough for one day.  He is exercising every day and walking on the treadmill doing all he can to stay as strong as possible.

We did get the grant from the Patient Access Network; Praise God!  It is for $7500 with another 7500 if needed.  That is very good as X-tandi costs $60 per pill; Leland takes 4 of them every day, and the co-pays are very high.

My surgery results were good, no additional cancer was found, and the scarring is almost impossible to see, although there is scar tissue under the skin.  Dr. says it will diminish with time. The stress chickens have come home to roost in my body this winter resulting in a sinus infection that refuses to disappear despite intensive treatment.  Also this morning I underwent an Endoscopy resulting in a diagnosis of Ulcers, Hiatal hernia, Gastritis and Duodenitis. No wonder I had heartburn!  The treatment is not too onerous, Omeprozole, and avoidance of irritating foods such as tomato sauce, citrus and spices. I had already decided I needed to start walking every day for stress reduction as well as weight control, so have a head start on that. We would rather walk outside, but when the weather is cold or wet, the treadmill is a good alternative.

We had a great Thanksgiving here with all the kids, Del and Chuck, Kathy and Dan and Cierra who is my great niece. The kids all stayed for the whole weekend, and we enjoyed every moment.  Phoenix is crawling and  all over the house-very cute and busy.

We spent Christmas in Portland at Todd and Cherilyn's. It was busy,  fun, and filled with family plus friends dropping by every day. We are so blessed with our family and extended family! We are also blessed and grateful for this extended time Leland has with the good medical care he is receiving to manage the beast attempting to control his body. New Year Blessings to each of you.