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.
Saturday, November 15, 2014
Sunday, November 9, 2014
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.
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.
Saturday, November 1, 2014
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.
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.
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