We are back from the clinic again. It was a beautiful drive up and back, and we had a good book to read which makes the time go more quickly; The Forgotten 500. A riveting story detailing the bold and daring rescue of over 500 Allied Airmen shot down over Yugoslavia during WWII and cared for by the Serbs right under the German's noses. Another piece of history of which we were unaware.
Leland's blood work looks great, he needs to increase his vitamin D3 as it is low, and he is trying some Wisconsin Gensing on Dr. Sweet's suggestion to see if it helps his energy levels. I love the way she really pays attention to these matters, and always has good suggestions for solving problems we run into.
As I said on the last post, the bone scan is mostly good, however, there are two new metastatic bone lesions and while his PSA is down to 4.19, lower than it has been since this began, it is still high. I have been in e-mail contact with another cancer survivor who volunteers with PCAI, a Pca List-Serve I joined, and from which we have learned much more that one can ever find out in a doctor's office. Chuck is a volunteer, and a real researcher who loves sharing his knowlege. He pointed out a couple of things we need to check into, and when I asked Dr. Chen about it, he was not knowlegeable about it at all. Chuck then sent info about an Oncologist specializing in Pca who practices at OSHU at the Knight Cancer Center, and on the website they were discussing the very problem which Leland may have-adaptive pathways which allow Pca to grow in spite of hormone treatment. So on Monday I will make an appointment there for Leland, if they are accepting new patients.
We found out today that the Chronic Disease Fund will be unable to assist us with co-pays in 2014 due to lack of funding, but they suggested another place, which I called and applied to this morning. We will hear from them this next week, and find out for sure and what the amount of the grant will be. We will be very grateful for whatever they can help us with.
Earlier in the summer I went to have a small lump on the side of my nose near my eye evaluated. Three doctors and one CT scan later, it was determined it should come off, and was most likely benign. The pathology report came back malignant to everyone's surprise, a rare cancer called a Micro Cystic Adnexal Carcinoma. In 25 years of looking at all kinds of cancer I had never heard of this one; I am pretty sure the pathologist had his books off the shelf researching this one before settling on the diagnosis. It arises in sweat glands mid face usually, primarily on women and there are only 300 per year world wide. They spread locally, but are rarely metastatic. Now I have to go back and have the incision removed, the bone scraped, and all tissue surrounding it cut away until the margins are clear. There is no way to know how extensive it will have to be until they actually do it, but hopefully it will be fairly small. My surgeon is also trained in plastic surgery, so the scars should not be too noticeable after it all heals up. The surgery will be Monday the 28th, and we will be glad to have it resolved.
I will post again after my surgery and let you all know how it came out and how large the excision had to be.
In the meantime, we are really enjoying the beautiful fall weather and gorgeous colors, and thankful for all the blessing we enjoy.
Friday, October 18, 2013
Friday, October 4, 2013
October 4, 2014 An Anxious Day
Last Thursday, 9 days ago Leland went for his bone scan. We knew we would not get the results until at least Wednesday, but surely by Thursday. Thursday came and went with me carrying a phone everywhere, even out into the garden to harvest where we were working to clean it out and harvest the last of the tomatoes.
When I called the clinic this morning the girl who is the "gate-keeper" tried to tell me scans are not discussed until the next visit. I informed her that was incorrect, and I wanted to speak with someone who could help me, not leave another message which might not be answered until Monday. One just has to get assertive in the capacity of a patient advocate. I hope I was nice but firm; at least that was my intent. Anyway, long story short, I finally got to speak with a live person, who told me Leland's scan had been discussed in the team meeting and would be again today, and Dr. Sweet would call today by the "9 O'clock hour" 9 came and went, 10, 11 and 11:45. I called again, very anxious with my imagination working overtime. Another promise Dr. Sweet would call. I extracted a promise it would be TODAY; she promised me it would be.
Around 12:30 Dr. Sweet called, and told me the Bone Scan looks really good! The bone lesions are regressing (Yes!!) the Kidney Nephrosis has resolved (YES!) and there are no lesions in his right hip and leg which have been giving him pain. ( Yes!) There are two small very faint new lesions in his upper right arm, and they want him to have his PSA done earlier than usual to check on that., but she said they are just very pleased with his progress.
Leland had to take the truck into The Dalles this morning to have some work done on it, and was gone all day. We had had a new steering mechanism put in-very expensive- and it did not work properly, when he took it in to have it checked they determined the part was defective, so at least we did not have to pay again, which was a relief. It was just as well he was gone because I was not very good company waiting for that phone call!
After imagining the worst all morning, I felt much better, and very grateful. Leland usually works outdoors a lot during the summer months, and is stronger by the end of summer. Last summer of course was very different, but this summer he has done a lot outdoors and accomplished a lot. However, rather than getting stronger, he has less endurance than he had at the beginning, and back pain which he has not had before. Now, just a little bending over causes pain, and he tires more easily than 2 or 3 months ago. We have been concerned about this, which was one of the reasons I was so anxious this morning.
I think perhaps the weakness is the price he is having to pay for the Zytiga and Lupron. Fatigue is one of the side effects of Lupron and muscle weakness is one that comes with Zytiga. So we will have to adjust our expectations accordingly, and he will have to pace himself more gently. Perhaps we will just have to hire out some of the jobs he does. Otherwise, he feels well, just needs to rest more.
We have a pleasant weekend ahead, Jerri and Leslie are here, staying with Del and Chuck. We are invited there for Sabbath dinner, and they will all come over here for Sunday brunch. We always love spending time with family and getting caught up on each other's lives.
Our next appointment with the clinic is the 15th, and I will post again after that.
The above picture is one of the projects Leland worked on this summer, just after we finished putting in the bark dust. I don't seem to be able to control where it gets placed.
When I called the clinic this morning the girl who is the "gate-keeper" tried to tell me scans are not discussed until the next visit. I informed her that was incorrect, and I wanted to speak with someone who could help me, not leave another message which might not be answered until Monday. One just has to get assertive in the capacity of a patient advocate. I hope I was nice but firm; at least that was my intent. Anyway, long story short, I finally got to speak with a live person, who told me Leland's scan had been discussed in the team meeting and would be again today, and Dr. Sweet would call today by the "9 O'clock hour" 9 came and went, 10, 11 and 11:45. I called again, very anxious with my imagination working overtime. Another promise Dr. Sweet would call. I extracted a promise it would be TODAY; she promised me it would be.
Around 12:30 Dr. Sweet called, and told me the Bone Scan looks really good! The bone lesions are regressing (Yes!!) the Kidney Nephrosis has resolved (YES!) and there are no lesions in his right hip and leg which have been giving him pain. ( Yes!) There are two small very faint new lesions in his upper right arm, and they want him to have his PSA done earlier than usual to check on that., but she said they are just very pleased with his progress.
Leland had to take the truck into The Dalles this morning to have some work done on it, and was gone all day. We had had a new steering mechanism put in-very expensive- and it did not work properly, when he took it in to have it checked they determined the part was defective, so at least we did not have to pay again, which was a relief. It was just as well he was gone because I was not very good company waiting for that phone call!
After imagining the worst all morning, I felt much better, and very grateful. Leland usually works outdoors a lot during the summer months, and is stronger by the end of summer. Last summer of course was very different, but this summer he has done a lot outdoors and accomplished a lot. However, rather than getting stronger, he has less endurance than he had at the beginning, and back pain which he has not had before. Now, just a little bending over causes pain, and he tires more easily than 2 or 3 months ago. We have been concerned about this, which was one of the reasons I was so anxious this morning.
I think perhaps the weakness is the price he is having to pay for the Zytiga and Lupron. Fatigue is one of the side effects of Lupron and muscle weakness is one that comes with Zytiga. So we will have to adjust our expectations accordingly, and he will have to pace himself more gently. Perhaps we will just have to hire out some of the jobs he does. Otherwise, he feels well, just needs to rest more.
We have a pleasant weekend ahead, Jerri and Leslie are here, staying with Del and Chuck. We are invited there for Sabbath dinner, and they will all come over here for Sunday brunch. We always love spending time with family and getting caught up on each other's lives.
Our next appointment with the clinic is the 15th, and I will post again after that.
The above picture is one of the projects Leland worked on this summer, just after we finished putting in the bark dust. I don't seem to be able to control where it gets placed.
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