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!