Radiation therapy with Trilogy, a form of stereotactic radiosurgery, was completed this afternoon. I’ve had lots of questions from friends about the effects, after effects, and “Don’t you have to be in the hospital for that?”. Besides being highly effective, I wanted this mode of radiation because it all happens at one setting and there are minimal side effects. The most difficult part is that you have to hold still in one position (the dreaded hands over the head routine) for an hour or two – or more. My radiation oncologist and the technicians all commented that mine was the “smoothest” procedure to date in their lab. So the preliminary x-rays and whole treatment was completed in an hour. And I did not feel anything - other than stiff arms. So thanks to you all for your prayers!! I have some pills for nausea if needed and some others which inhibit stomach acid to prevent duodenal ulcers. But this form of treatment is notably more easily tolerated than usual radiation therapy.
As we were leaving the cancer center we also had a chance meeting of Iris, one of the doctors on the faculty. Iris was a regular member of our Christian Fellowship at the Stanford Med Center several years ago, when she was a resident and fellow in radiation oncology. Just recently she was promoted to Associate Professor! So it was great to see her, celebrate her promotion and receive her prayers for my healing. Iris had known from the other doctors that I was having treatment, but we just had not crossed paths.
News about my appeal of the Health Net/Medicare denial of authorization for the Trilogy treatment is still pending. Yesterday was the Administrative Law Judge hearing for which Dr Koong and I each gave written and verbal testimony by phone to the judge who was in Irvine, CA. My thanks to our fellow Albania Health Board member, Phil (and Lois) for their help in making my testimony short and to the point! The hearing results will not be known until next week, but both of us had the impression that we made a clear presentation and made a good case for reversal of the past denials. It turns out that the cost of Trilogy is less than half the traditional radiation, which they would have paid for! So particularly in the interest of future patients with similar needs, and may not have the means to pay for this improved mode of radiation, we are praying for judicial reason and justice.
With this week behind us, we are looking forward to having several of our family members arrive for the Hensleigh and Curry family reunions coming up next week. After the 4th , we will all be gathering at Camp Curry in Yosemite Valley to remember our family heritage and bond with the current generation. What a blessing we have, especially the Christian heritage of our forefathers and mothers. Just now I recall the inscription on the grave marker of my grandmother, Ida Curry Hensleigh, “ I know that my Redeemer liveth… “ Job 19;23. As we come together at the time of our country’s Independence Day, we indeed have so many blessings, and so much we owe to those who came before us.
While we know the dire percentage of pancreatic healings, we claim John 16:33 in which Jesus says, “I have told you all these things so that in Me you may have peace; In this world you will have trouble. But take heart, I have overcome the world.” So many friends have puzzled about why God would allow such an ugly cancer to afflict a ‘good’ person like me, who has given so much time and effort to help the disadvantaged women of the world. Our friend Sheri hit the nail on the head as she recalled this word quote from Jesus, “ ..in this world you will have trouble…but I have overcome”.
How thankful we are for His peace and thankful for your supporting prayers continuing for us, as after the family reunions, in two weeks, I begin chemo therapy with Gemzar once again. The rationale is to target wandering cancer cells that so often give rise to new tumor sites which emerge weeks or months later. Thanks for specific prayers for the success of this strategy.
Thursday, June 28, 2007
Friday, June 22, 2007
Stereotactic Radiosurgery (Trilogy) scheduled
Stereotactic Radiosurgery (Trilogy) scheduled Thursday, Wednesday legal hearing to see if insurance pays!
How quickly a week passes – and this was a full one. I have now scheduled the Trilogy treatment for next Thursday the 28th at 2:00 pm. In preparation for that treatment I was scheduled for a PET scan and CT on Monday, but the PET scanner was down. Tuesday I was NPO again for the scan and went through the process but the images were not adequate. So on Wednesday, I had my 3rd NPO day and finally got successfully scanned! And some people wonder why there is weight loss associated with this cancer!
Actually my weight is holding up pretty well, only 5 pounds off my regular. And I am still able to eat normal meals, just in smaller portions. And in spite of spending lots of hours in the clinic and hospital, I am keeping up with most of the regular meetings, hospital rounds, though still sleeping lots more than usual. The chemo schedule is interrupted for 4 weeks in order to have radiation without excessive side effects. And thankfully the pain intensity and frequency continues to diminish. My medical oncologist attributes the improvement to the chemo, I just know it’s an answer the prayers of many.
The final stage of appeal for the insurance to pay for my treatment is a hearing by an Administrative Law Judge in the office of Medicare Hearings and Appeals – which will take place by telephone on next Wednesday morning at 11:00. I just got the papers and instructions about that today, so I will have some homework to prepare my case and also to line up at least one of my doctors to testify as well. The issue is not how much it costs, as the cost of Trilogy is substantially less than traditional radiation. Rather it’s a loophole which says that the costs of “investigational or experimental” treatments or devices are not covered by Medicare and therefore not required coverage by insurance. So although Trilogy is an FDA approved medical device, and has been in use for a couple of years with improved results compared to standard external beam radiation, Medicare continues to consider this as experimental treatment. Ironically while this restriction is couched in terms of protecting the patient from being subject to unproven treatment, all the doctors I have consulted with agree that this is the treatment of choice for my particular situation! So possibly this is a case wherein reason can prevail through the hearing process. We are praying for God’s intervention is this because we feel that we and future patients with similar needs deserve t this treatment when it is preferred. The radiation oncologist says I just got the cancer 10 years too soon!
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Thus, my new agenda after learning of the hearing next week, is to prepare my case and line up the testimony of my doctor. Believe me this will take most of the time available as the Medicare regulations are extensive and all new to me! Thanks again for keeping us in prayer for the hearing, as well as that the radiation will be guided by God and accurate in destroying the cancer cells yet not harming any of the surrounding organs or blood vessels. Even though the radiation is “stereotactic”, the tumor is lying adjacent to the duodenum and wrapped around the superior mesenteric artery!
How quickly a week passes – and this was a full one. I have now scheduled the Trilogy treatment for next Thursday the 28th at 2:00 pm. In preparation for that treatment I was scheduled for a PET scan and CT on Monday, but the PET scanner was down. Tuesday I was NPO again for the scan and went through the process but the images were not adequate. So on Wednesday, I had my 3rd NPO day and finally got successfully scanned! And some people wonder why there is weight loss associated with this cancer!
Actually my weight is holding up pretty well, only 5 pounds off my regular. And I am still able to eat normal meals, just in smaller portions. And in spite of spending lots of hours in the clinic and hospital, I am keeping up with most of the regular meetings, hospital rounds, though still sleeping lots more than usual. The chemo schedule is interrupted for 4 weeks in order to have radiation without excessive side effects. And thankfully the pain intensity and frequency continues to diminish. My medical oncologist attributes the improvement to the chemo, I just know it’s an answer the prayers of many.
The final stage of appeal for the insurance to pay for my treatment is a hearing by an Administrative Law Judge in the office of Medicare Hearings and Appeals – which will take place by telephone on next Wednesday morning at 11:00. I just got the papers and instructions about that today, so I will have some homework to prepare my case and also to line up at least one of my doctors to testify as well. The issue is not how much it costs, as the cost of Trilogy is substantially less than traditional radiation. Rather it’s a loophole which says that the costs of “investigational or experimental” treatments or devices are not covered by Medicare and therefore not required coverage by insurance. So although Trilogy is an FDA approved medical device, and has been in use for a couple of years with improved results compared to standard external beam radiation, Medicare continues to consider this as experimental treatment. Ironically while this restriction is couched in terms of protecting the patient from being subject to unproven treatment, all the doctors I have consulted with agree that this is the treatment of choice for my particular situation! So possibly this is a case wherein reason can prevail through the hearing process. We are praying for God’s intervention is this because we feel that we and future patients with similar needs deserve t this treatment when it is preferred. The radiation oncologist says I just got the cancer 10 years too soon!
-
Thus, my new agenda after learning of the hearing next week, is to prepare my case and line up the testimony of my doctor. Believe me this will take most of the time available as the Medicare regulations are extensive and all new to me! Thanks again for keeping us in prayer for the hearing, as well as that the radiation will be guided by God and accurate in destroying the cancer cells yet not harming any of the surrounding organs or blood vessels. Even though the radiation is “stereotactic”, the tumor is lying adjacent to the duodenum and wrapped around the superior mesenteric artery!
Wednesday, June 13, 2007
Good Kansas Visit
Both Bonnie and I had opportunities for 50th high school reunions this year. Mine was at the time of my cancer workup, so we had to cancel the trip for the Winchester (KS) High School alumni banquet and reunion, but we did get to attend Bonnie’s class reunion at Emporia last weekend. About 20 of the 23 surviving members, plus spouses, were there and it was a busy weekend of events and remembrances of high school days. The Lord even provided opportunity and blessing for Bonnie to visit her Frederiksen relatives, who had a recent loss of her cousin. And Sunday we attended the St Mark’s Lutheran Church where Bonnie was confirmed. Would you believe Rev Davis delivered a fitting sermon on healing!
We also spent a few nights with my brother Robb, Peg, John and Stuart who live on the farm where we all grew up. Kansas in the early summer is beautiful and green, but we did experience an awesome windstorm the first night with howling winds of 50 mph that made the plains sound like the seashore! Since I missed the Winchester reunion, a number of my classmates came by for an afternoon of visiting and sharing pictures from the recent event.
Another highlight was visiting and having lunch with my niece, Heidi, and nephew, Chris and their families – three cute kids each. Beforeefore returning to San Francisco on Monday evening, we had a chance to see my sister Joye and her husband David, who had been in Columbus, Ohio for their grand kids graduations and who had just returned a couple hours beforewe were leaving.
Returning to the land of our roots at a beautiful time of year and seeing friends of 50+ years plus lots of family members made for a great 6 day vacation. We are always struck by the wholesome authenticity of life in rural Kansas – where friends neighbors and entire communities are so supportive. And many of the houses don’t have locks on the doors even to this day! Of course at the end of 6 days it was also good to be back home in Stanford – definitely an easier place to cope when one is not quite feeling up to par!
Today I had my 4th chemo treatment. However, the denials of authorization for the radiation treatment (and appeals) go on. I’m not sure where this will end, but then there is no particular pattern for chemo/radiation treatment for this particular stage of pancreatic cancer anyway. An alternative that is becoming more likely is to pay for Trilogy out of pocket and then start a new review process to get reimbursed. My pancreas pain seems less intense and less frequent now and I’ve been able to cut back on Vicodan and get away from some of its adverse effects. So, thankfully, the last couple of days I have been feeling pretty normal most of the time.
Just to make things interesting, I had a horse accident a week ago with Jackson. He is about recovered from a broken pelvis and has had 6 months of stall rest to achieve that. The result for him is muscle atrophy, but also lots of excitement when he does get to go “outside”. The vet suggested working him in a harness to pull some weight and muscle up his legs – which went fairly well the first day, tho it was apparent that harness driving was something new for Jackson. But the second day it was gusty and a little too exciting, causing him to bolt and me to perform a “face plant” in the sand. When I woke up with a mouth full of sand, Jackson had fled back to the safety of his stall and I had lost skin off my left side of my face and scraped both little fingers. Jackson had no ill effects but a few days later I began having red strobe light flashings when I would move my head in the night. Today I saw the ophthalmologist who determined that my retina was not torn nor detached – just stretched – Whew! I’ve determined that Jackson and I are too old to take on harness driving.
Some years ago I carried the NIV version of Jeremiah 29:11 on the back of my personal business card. Today I read the paraphrase from the Message by Peterson:
This is God’s word on the subject… (God’s people in exile in Babylon) … “I’ll show up and take care of you as I promised and bring you back home. I know what I’m doing. I have it all planned out – plans to take care of you, not abandon you, plans to give you the future you hope for.”
In this exile of cancer treatment, I’m so thankful for God’s promises – not to mention the prayers of so many of you.
Thankful indeed!
We also spent a few nights with my brother Robb, Peg, John and Stuart who live on the farm where we all grew up. Kansas in the early summer is beautiful and green, but we did experience an awesome windstorm the first night with howling winds of 50 mph that made the plains sound like the seashore! Since I missed the Winchester reunion, a number of my classmates came by for an afternoon of visiting and sharing pictures from the recent event.
Another highlight was visiting and having lunch with my niece, Heidi, and nephew, Chris and their families – three cute kids each. Beforeefore returning to San Francisco on Monday evening, we had a chance to see my sister Joye and her husband David, who had been in Columbus, Ohio for their grand kids graduations and who had just returned a couple hours beforewe were leaving.
Returning to the land of our roots at a beautiful time of year and seeing friends of 50+ years plus lots of family members made for a great 6 day vacation. We are always struck by the wholesome authenticity of life in rural Kansas – where friends neighbors and entire communities are so supportive. And many of the houses don’t have locks on the doors even to this day! Of course at the end of 6 days it was also good to be back home in Stanford – definitely an easier place to cope when one is not quite feeling up to par!
Today I had my 4th chemo treatment. However, the denials of authorization for the radiation treatment (and appeals) go on. I’m not sure where this will end, but then there is no particular pattern for chemo/radiation treatment for this particular stage of pancreatic cancer anyway. An alternative that is becoming more likely is to pay for Trilogy out of pocket and then start a new review process to get reimbursed. My pancreas pain seems less intense and less frequent now and I’ve been able to cut back on Vicodan and get away from some of its adverse effects. So, thankfully, the last couple of days I have been feeling pretty normal most of the time.
Just to make things interesting, I had a horse accident a week ago with Jackson. He is about recovered from a broken pelvis and has had 6 months of stall rest to achieve that. The result for him is muscle atrophy, but also lots of excitement when he does get to go “outside”. The vet suggested working him in a harness to pull some weight and muscle up his legs – which went fairly well the first day, tho it was apparent that harness driving was something new for Jackson. But the second day it was gusty and a little too exciting, causing him to bolt and me to perform a “face plant” in the sand. When I woke up with a mouth full of sand, Jackson had fled back to the safety of his stall and I had lost skin off my left side of my face and scraped both little fingers. Jackson had no ill effects but a few days later I began having red strobe light flashings when I would move my head in the night. Today I saw the ophthalmologist who determined that my retina was not torn nor detached – just stretched – Whew! I’ve determined that Jackson and I are too old to take on harness driving.
Some years ago I carried the NIV version of Jeremiah 29:11 on the back of my personal business card. Today I read the paraphrase from the Message by Peterson:
This is God’s word on the subject… (God’s people in exile in Babylon) … “I’ll show up and take care of you as I promised and bring you back home. I know what I’m doing. I have it all planned out – plans to take care of you, not abandon you, plans to give you the future you hope for.”
In this exile of cancer treatment, I’m so thankful for God’s promises – not to mention the prayers of so many of you.
Thankful indeed!
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