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.
Saturday, July 26, 2014
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.
Saturday, May 24, 2014
2014 May 24 Home from 2nd Chemo Treatment
As I sit at my little desk overlooking the back yard, I can see our Clematis which has burst into full and glorious bloom. It is absolutely lovely-makes me glad every time I look out the window here or over the kitchen sink.
Del and Chuck took us to the clinic last week, we left on Tuesday afternoon, stayed over in "our" hotel, with treatment being Wednesday morning. We were there from 7:45 am until 1 pm. Leland has been feeling so low with continual nausea, they gave him an extra- long- working- anti emetic along with the usual one, in addition to some more prescriptions to take home. He has felt better since then, which has been a mercy since I have needed him to drive me to Doctor and PT appointments of my own on both Thursday and Friday, one in Hood River and the other in The Dalles.
Thank you Del and Chuck for the gift of your time-we will never forget all these trips and your cheerful acceptance of hours and hours of waiting for us.
We were given the results of the post-Provenge Circulating Tumor Cell Test. Not good at all. The number we hoped would be lower, had instead risen from 17 to 95. Less than 5 is optimal. Combined with PSA results of 107 and the CT report of innumerable new bone lesions, the prognosis is grim. However, there are still more treatments to try, including another chemo if this one does not work which will mean the cancer has mutated into a different form. It is very nasty and aggressive, but we knew that from the beginning. Dr. Chen will order the CTC and PSA tests again in 2 weeks after Leland has had 4 chemo treatments, and that should tell us whether or not we need to change horses in the middle of the stream.
We have a lot of surreal conversations about all this, conversations which we never dreamed of in the past. But it is good we can communicate, not all Pca patients and their wives have that ability as I read on a couple of websites and list-serves to which I subscribe. We are thankful for the many ways in which we can see God's blessings, that both of us have not been incapacitated at the same time-we take turns, that we have been given a grant that pays the thousands of dollars in co-pays and that our old car keeps running. As mentions above we are very thankful to Del and Chuck for all their help and support, and to our kids who help us as they are able.
We are also thankful for those of you who care enough to read this and pray for us-and let us know. Thank you!
Most of all we are thankful to understand that God know all about this, He cares more than we do and has promised to walk though the hills and valleys of life with us.
Del and Chuck took us to the clinic last week, we left on Tuesday afternoon, stayed over in "our" hotel, with treatment being Wednesday morning. We were there from 7:45 am until 1 pm. Leland has been feeling so low with continual nausea, they gave him an extra- long- working- anti emetic along with the usual one, in addition to some more prescriptions to take home. He has felt better since then, which has been a mercy since I have needed him to drive me to Doctor and PT appointments of my own on both Thursday and Friday, one in Hood River and the other in The Dalles.
Thank you Del and Chuck for the gift of your time-we will never forget all these trips and your cheerful acceptance of hours and hours of waiting for us.
We were given the results of the post-Provenge Circulating Tumor Cell Test. Not good at all. The number we hoped would be lower, had instead risen from 17 to 95. Less than 5 is optimal. Combined with PSA results of 107 and the CT report of innumerable new bone lesions, the prognosis is grim. However, there are still more treatments to try, including another chemo if this one does not work which will mean the cancer has mutated into a different form. It is very nasty and aggressive, but we knew that from the beginning. Dr. Chen will order the CTC and PSA tests again in 2 weeks after Leland has had 4 chemo treatments, and that should tell us whether or not we need to change horses in the middle of the stream.
We have a lot of surreal conversations about all this, conversations which we never dreamed of in the past. But it is good we can communicate, not all Pca patients and their wives have that ability as I read on a couple of websites and list-serves to which I subscribe. We are thankful for the many ways in which we can see God's blessings, that both of us have not been incapacitated at the same time-we take turns, that we have been given a grant that pays the thousands of dollars in co-pays and that our old car keeps running. As mentions above we are very thankful to Del and Chuck for all their help and support, and to our kids who help us as they are able.
We are also thankful for those of you who care enough to read this and pray for us-and let us know. Thank you!
Most of all we are thankful to understand that God know all about this, He cares more than we do and has promised to walk though the hills and valleys of life with us.
Friday, May 16, 2014
2014 May 16 Back to Chemo
As I mentioned in the last blog, Leland has not been feeling well for the last 3 months or so. He has been functional part of the time, but nausea, heartburn and heart palpitations sent us to the local clinic for a check. Our PA did a thorough check which included an EKG (slightly abnormal, but nothing to get too excited about right now) and spoke with the PA at the cancer clinic. I was pretty impressed by this, as no one else has taken the time to actually consult with them.
It was determined he needed to be seen up there, so we took an unscheduled trip to the clinic, and again Del and Chuck went with us, Chuck doing the driving. Leland's PSA shot up from 11 to 100 during the time he was on the Provenge treatment. That fact plus his unwell state convinced Dr. Chen the cancer is very active and he ordered a CT scan to confirm, and told us to make an appointment to begin Chemo again the following week.
So we returned to the clinic on the 14th; the CT scan confirmed Dr. Chen's diagnosis, and Chemo was begun that morning. It was the first of 12 weekly treatments. As before, Leland also received an infusion of 25,000 units of vitamin c, B-5, magnesium and calcium as well as an anti emetic then the two chemo drugs, Carboplatin and Taxotere and finally Zometa for his bones. All of which took most of the day. Our friends, Mike and Joan took us up this time; were very kind and patient with all the waiting we had to do.
The CT scan showed the involved lymph nodes resolved, but the bone involvement had increased extensively, to include ribs, sternum, scapula, pelvis, and spine. Not what we were hoping to hear. It appears at this point the Xtandi and Provenge did nothing for him at all. Dr. Chen and Dr. Sweet both told us that he should begin feeling better in a week or two. Yesterday was probably the best day he has had in months, but today he has been sick again, and his his chair most of the day, except for doing a little painting on the Hidden Pines sign which Todd made for us and filling our supplement boxes for the week.
We do not know what to expect from one day to the next, so it is hard to make plans with others and then have to cancel. Lorance and Judy were coming this weekend to visit and get the video Leland created of Kevin and Lucy's wedding. But we had to cancel because he is feeling too sick for company.
All the kids were here last weekend for Mother's Day, which was really great, then Mark stayed on for the whole week since he is out of school for the summer now. It has been good to have him here, as he has been helpful catching up with the outside work, plus we enjoy his company and he makes us laugh with his quirky humor.
We made the difficult decision to put the house on the market as we just cannot keep up with the outside work except for the mowing. If the house sells, we will be moving back to the Vancouver area, to be closer to medical care and the kids, although I don't know how we will get along without Del and Chuck nearby.
Of course we struggle with all this, but have faith that God knows our needs, and will be there for us in the future as He has been in the past. We have asked Him to open and close doors in the matter of selling the house and choosing a new one if this one sells, so rest in faith that His will will be made clear to us.
It was determined he needed to be seen up there, so we took an unscheduled trip to the clinic, and again Del and Chuck went with us, Chuck doing the driving. Leland's PSA shot up from 11 to 100 during the time he was on the Provenge treatment. That fact plus his unwell state convinced Dr. Chen the cancer is very active and he ordered a CT scan to confirm, and told us to make an appointment to begin Chemo again the following week.
So we returned to the clinic on the 14th; the CT scan confirmed Dr. Chen's diagnosis, and Chemo was begun that morning. It was the first of 12 weekly treatments. As before, Leland also received an infusion of 25,000 units of vitamin c, B-5, magnesium and calcium as well as an anti emetic then the two chemo drugs, Carboplatin and Taxotere and finally Zometa for his bones. All of which took most of the day. Our friends, Mike and Joan took us up this time; were very kind and patient with all the waiting we had to do.
The CT scan showed the involved lymph nodes resolved, but the bone involvement had increased extensively, to include ribs, sternum, scapula, pelvis, and spine. Not what we were hoping to hear. It appears at this point the Xtandi and Provenge did nothing for him at all. Dr. Chen and Dr. Sweet both told us that he should begin feeling better in a week or two. Yesterday was probably the best day he has had in months, but today he has been sick again, and his his chair most of the day, except for doing a little painting on the Hidden Pines sign which Todd made for us and filling our supplement boxes for the week.
We do not know what to expect from one day to the next, so it is hard to make plans with others and then have to cancel. Lorance and Judy were coming this weekend to visit and get the video Leland created of Kevin and Lucy's wedding. But we had to cancel because he is feeling too sick for company.
All the kids were here last weekend for Mother's Day, which was really great, then Mark stayed on for the whole week since he is out of school for the summer now. It has been good to have him here, as he has been helpful catching up with the outside work, plus we enjoy his company and he makes us laugh with his quirky humor.
We made the difficult decision to put the house on the market as we just cannot keep up with the outside work except for the mowing. If the house sells, we will be moving back to the Vancouver area, to be closer to medical care and the kids, although I don't know how we will get along without Del and Chuck nearby.
Of course we struggle with all this, but have faith that God knows our needs, and will be there for us in the future as He has been in the past. We have asked Him to open and close doors in the matter of selling the house and choosing a new one if this one sells, so rest in faith that His will will be made clear to us.
Sunday, April 27, 2014
2014 April 27 Provenge Treatment Completed
Leland's second Provenge treatment began on April 7 with the aphoresis procedure in Vancouver. Again, Mark and Tina were able to come and entertain us for much of the three hours Leland was in the chair. As before, Del and Chuck drove us there and back.
On Thursday the 10th, the four of us left again for Seattle Treatment and Wellness Center and the 2nd infusion. Afterward, we met Chaunda, and went to dinner together, then took the Bainbridge Ferry across the Sound to stay at Raspberry Cottage until Monday. We had a great time, seeing part of the Skagit Valley Tulip Festival on Friday, attending church in Paulsbo on Sabbath, and exploring Bainbridge Island on Sunday. On Monday we cleaned the house, and left for home. We got only as far as Bremmerton before it became very obvious Del and Chuck's car was not going to make it any further without a major transmission repair. We got a tow, they gave us a loaner car, and we returned to the Cottage until Thursday morning.
Not wanting to waste any vacation time, even though it was forced on us, on Tuesday, we again took a ferry to Seattle, this time as foot traffic. The streets going uptown from the ferry are extremely steep, but Leland had the idea of riding the escalators in the buildings on the corners to the next level, so we did that for 3 of the blocks then walked about 10 more blocks, caught the monorail and spent the rest of the day at the Seattle Center, where among other things we saw a 3-D movie about Madagascar and Lemurs. Very interesting and fun. And we love the ferry rides.
On Wednesday, it was back to Seattle on the Ferry again, this time for Leland to return to the SCTWC and have his central venous cathether flushed and the bandage changed. Then the ferry took us to Bremmerton and we picked up the car, now running very well, went back to the Cottage for the evening and then home on Thursday with a stop in Portland for a doctor's appointment for Chuck. We had Friday at home,then Sabbath after church we drove to Portland to spend Easter with our families. Cherilyn and Todd put up the 4 of us very graciously, and hosted a family dinner for both extended families, with a fun easter egg hunt and egg toss. It was great to see the cousins and babies together and get caught up with the news, as well as meet Ken's new and lovely girl friend, Bryn.
On Monday, we headed to Vancouver for the 3rd and last aphoresis procedure. Home again for Tue and Wed, then Thurs back to Seattle for the last infusion, then a drive to Portland to spend the night and be at Portland Adventist Hospital by 9am to have the central venous catheter removed. Leland is happy to be rid of the nuisance of having to cover it with plastic wrap for a shower, and taping it to his chest so it would not flop around when he moved.
Del and Chuck have been so wonderful to us during this time, giving so much of themselves to drive us to our appointments, always making us think they are happy to spend the time with us. I don't know what we would have done without them and their loving caring ways. We are truly blesssed with family and loved ones who are helping us through this time.
We will have another Circulating Tumor Cell Test done on the 9th of May, and get the results on the 15th when we go to the next appointment. Leland has not been feeling very well, very low energy and a lot of nausea. We hope that the medication he just discontinued was the cause and he will feel better soon.
On Thursday the 10th, the four of us left again for Seattle Treatment and Wellness Center and the 2nd infusion. Afterward, we met Chaunda, and went to dinner together, then took the Bainbridge Ferry across the Sound to stay at Raspberry Cottage until Monday. We had a great time, seeing part of the Skagit Valley Tulip Festival on Friday, attending church in Paulsbo on Sabbath, and exploring Bainbridge Island on Sunday. On Monday we cleaned the house, and left for home. We got only as far as Bremmerton before it became very obvious Del and Chuck's car was not going to make it any further without a major transmission repair. We got a tow, they gave us a loaner car, and we returned to the Cottage until Thursday morning.
Not wanting to waste any vacation time, even though it was forced on us, on Tuesday, we again took a ferry to Seattle, this time as foot traffic. The streets going uptown from the ferry are extremely steep, but Leland had the idea of riding the escalators in the buildings on the corners to the next level, so we did that for 3 of the blocks then walked about 10 more blocks, caught the monorail and spent the rest of the day at the Seattle Center, where among other things we saw a 3-D movie about Madagascar and Lemurs. Very interesting and fun. And we love the ferry rides.
On Wednesday, it was back to Seattle on the Ferry again, this time for Leland to return to the SCTWC and have his central venous cathether flushed and the bandage changed. Then the ferry took us to Bremmerton and we picked up the car, now running very well, went back to the Cottage for the evening and then home on Thursday with a stop in Portland for a doctor's appointment for Chuck. We had Friday at home,then Sabbath after church we drove to Portland to spend Easter with our families. Cherilyn and Todd put up the 4 of us very graciously, and hosted a family dinner for both extended families, with a fun easter egg hunt and egg toss. It was great to see the cousins and babies together and get caught up with the news, as well as meet Ken's new and lovely girl friend, Bryn.
On Monday, we headed to Vancouver for the 3rd and last aphoresis procedure. Home again for Tue and Wed, then Thurs back to Seattle for the last infusion, then a drive to Portland to spend the night and be at Portland Adventist Hospital by 9am to have the central venous catheter removed. Leland is happy to be rid of the nuisance of having to cover it with plastic wrap for a shower, and taping it to his chest so it would not flop around when he moved.
Del and Chuck have been so wonderful to us during this time, giving so much of themselves to drive us to our appointments, always making us think they are happy to spend the time with us. I don't know what we would have done without them and their loving caring ways. We are truly blesssed with family and loved ones who are helping us through this time.
We will have another Circulating Tumor Cell Test done on the 9th of May, and get the results on the 15th when we go to the next appointment. Leland has not been feeling very well, very low energy and a lot of nausea. We hope that the medication he just discontinued was the cause and he will feel better soon.
Monday, March 31, 2014
2014, March 31 First Provenge Treatment Done
A week ago to day, March 24th, we went to Vancouver for the first part of Leland's first Provenge treatment. We caught a ride with the Mt Adams Senior Transportation, had a very nice and friendly driver who came to our door and delivered us to the Red Cross Center in Vancouver. It is the only one between California and Seattle which does the aphoresis treatment. Within moments our nurse had him attached to a very sophisticated machine with a lot of tubing; she told us that during the 3 hours he would be hooked up, his entire blood supply would be run through the machine twice. We could see the the progress being made as the white cells and plasma were withdrawn into a gas permeable bag. The nurse told us the cells would be able to give off carbon dioxide and take in oxygen as well as be nourished by the plasma en route.
He handled the treatment well, and we returned home later that day; our driver had waited for us.
On Thursday, the 27th, we went to Seattle in the morning, this time with Del and Chuck to do the driving. Leland's re-infusion was scheduled for 12:45 pm. He had to have pre-meds infused first, then the main infusion of his newly activated immune cells, all of which took about 3 hours. Then we went to a division of Quest Laboratory in the same building and he had his blood drawn for Circulating Tumor Cell Test as benchmark. They will order another one a short time after the Provenge is completed; it should assist the dr. in the determination of how well this worked and what the next step in his treatment will need to be. We ent to dinner at the Spaghetti Factory, and stayed overnight in our hotel, rather than make the round trip in one day.
My shoulder is slowly progressing, and I am able to do a little more with my right hand, such as dress myself and again, and cook. I am still unable to drive, and still in PT which is still quite painful at times. I was certainly not prepared for the all the ramifications of this surgery, but am so grateful it is done, and healing even though it is very slow, and still quite uncomfortable a good deal of the time. I am able to key board with both hands again, although it is a strain-makes my right hand and entire arm ache.
We went to Portland on Sabbath the 28th for Phoenix's first birthday. What a wonderful time we had with all our family except Grant there, as well as many of Cher and Todd's friends and their little ones. Cherilyn had made a beautiful cake with fondant frosting and jungle animals on it. Phoenix took it all in stride, and seemed to enjoy every moment. We got to see him take some toddling steps on his own, and spend some great play time with him. He is a darling little man, and we are very much in love with him. Cherilyn and Todd are such good parents, it does our hearts good to see them all together.
He handled the treatment well, and we returned home later that day; our driver had waited for us.
On Thursday, the 27th, we went to Seattle in the morning, this time with Del and Chuck to do the driving. Leland's re-infusion was scheduled for 12:45 pm. He had to have pre-meds infused first, then the main infusion of his newly activated immune cells, all of which took about 3 hours. Then we went to a division of Quest Laboratory in the same building and he had his blood drawn for Circulating Tumor Cell Test as benchmark. They will order another one a short time after the Provenge is completed; it should assist the dr. in the determination of how well this worked and what the next step in his treatment will need to be. We ent to dinner at the Spaghetti Factory, and stayed overnight in our hotel, rather than make the round trip in one day.
My shoulder is slowly progressing, and I am able to do a little more with my right hand, such as dress myself and again, and cook. I am still unable to drive, and still in PT which is still quite painful at times. I was certainly not prepared for the all the ramifications of this surgery, but am so grateful it is done, and healing even though it is very slow, and still quite uncomfortable a good deal of the time. I am able to key board with both hands again, although it is a strain-makes my right hand and entire arm ache.
We went to Portland on Sabbath the 28th for Phoenix's first birthday. What a wonderful time we had with all our family except Grant there, as well as many of Cher and Todd's friends and their little ones. Cherilyn had made a beautiful cake with fondant frosting and jungle animals on it. Phoenix took it all in stride, and seemed to enjoy every moment. We got to see him take some toddling steps on his own, and spend some great play time with him. He is a darling little man, and we are very much in love with him. Cherilyn and Todd are such good parents, it does our hearts good to see them all together.
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