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.
Thursday, September 11, 2014
Monday, August 25, 2014
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!
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!
Thursday, August 14, 2014
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.
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.
Thursday, August 7, 2014
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.
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.
Saturday, July 26, 2014
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.
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.
Sunday, June 15, 2014
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!
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!
Thursday, June 5, 2014
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.
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.
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