(Pat here, giving this update)
On Friday, March 29th, Jeanne’s bilirubin count was high again, so high the doctor told her to get to the ER right away. After an ultrasound scan, they were not able to find a blocked bile duct, or any apparent cause. So, they sent us home. We have an appointment on Monday, March 3rd, to see our oncologist. We ask for your prayers as to the next course we should take.
If you are like me, you have many questions. So, let me give you a bit more history, which will hopefully not create too many more questions.
A few weeks ago, Jeanne was hospitalized due to concerns relating to a high bilirubin count of 4.2. (Bilirubin is produced in our liver. When our body cannot excrete it properly, it overflows to our bloodstream. The physical effect is a person skin becomes yellow-ish. If you ever had a child with jaundice, you know the appearance.)
While Jeanne was hospitalized, the counts dropped without any intervention. We left the hospital more concerned about the fluid building up in her abdomen than the bilirubin levels. So, later that week, she underwent a procedure called a paracentesis to relieve the pressure in her abdomen. Jeanne nick- named it a “belly tap.”
Fast forward two weeks, the fluid built-up again, so she went in for another paracentesis. Less than an hour after the procedure, the doc called to say the blood tests from that morning indicated the bilirubin at 10.8. So, back to the hospital we go, only to be sent home after a few hours.
Usually, I am pleased when an emergency room doctor says to go home. In this case, Jeanne was leaving with no change in her condition, and no remedies offered, except for some pain medication. When I asked the ER doctor what the cause may be, he suspected the “tumor load” on her liver. He said our oncologist would take it from there, at our next appointment.
So, off to Portland tomorrow, Monday, March 3rd. We are not sure what he will say, but we do not feel anxious. No doubt because of all of your prayers.
Thank you,
Pat
Sunday, March 02, 2008
Monday, February 18, 2008
February update, 2008
A lot's been happening (as usual) around here. Robert and Daniel are both in basketball, they did another Gamma Knife treatment on my brain on January 23rd up in Portland, Sarah fell two stories out of a loft apartment, and the wedding happens this Friday night. We applied to become guardians of our son Daniel, who turned 18 on December 1st and also applied for Social Security benefits for him (lots of appointments and paperwork on the above.) That about covers it, except that I did land in the hospital this last Monday and Tuesday due to a high bilirubin count. Thankfully it came down on it's own, and we were able to return home after just a CT scan and an ultrasound. I had some fluid in my abdomen that the doctor thinks may be from the radiation to the brain, the steroids (to reduce the brain's swelling, post radiation), and the toxicity of this last chemo that I was on. All of that is pretty tough on the liver, and it evidently can make it put out some "I'm unhappy" fluid. I went to the hospital here in town to have them remove the fluid, and they'll run it through a bunch of tests to try to find out exactly what it was from.
The Gamma Knife went pretty well; they say they got everything again. They almost went ahead with the whole brain because they found more lesions, until Pat told them that Nicole was getting married soon, then they said to forget the whole brain, they'll just do the Gamma Knife due to the scheduling. I'm taking a break from chemo because my counts came down, and everything seemed to be normalizing, so Dr. Chui didn't want to create any more havoc. We'll wait until after the wedding, to get scans, then at the next appointment we will discuss options (again), and go from there.
As for our 9-lives Sarah, she and Valerie went skiing with friends two weeks ago. They were dropping some kids off at an apartment and leaned up against a wall that wasn't there. (Her words.) She fell down a story into their car garage, landed on their car (which is fine), and then into a pile of lumber. Valerie got her home, we iced things, gave here some homeopathic Arnica, took her to the ER, and she was dinged up a bit, but ok. They x-rayed her elbow, which had a puncture wound, but no breaks. Our saving grace seemed to be the two college guys waiting in the ER. As Pat and I grilled Sarah..."Now--HOW did you do this again???" They got to listen in and thought she was VERY cool, would have a great story to tell, etc. We laughed for a good 45 minutes. I think the endorphins helped us all a ton. Anyway, she's fine. Ice skating a week later she bit it a few times and it hurt some, but nothing was badly damaged. She had to have one big fat angel watching over and under her!!
Daniel, our 18 year old has Down's Syndrome, and is now is considered "emancipated" in Oregon. We thought it would be a good idea to be able to sign legal forms, documents, etc. for him as we always have, so we applied for guardianship. To do this, they appoint someone to come to your home, check out the people who live with the person, and evaluate whether or not you would be good guardians, whether he really needs it, etc. Now we are waiting for a judge's decision. Should get results in one-two weeks. No stress.
Wedding plans are all made, and now it's the last minute stuff that needs to finally get done. Nicole has this week off, so hopefully it'll all be set for the big day! We're all very excited, especially her fiancee, who is SO happy to not have a curfew anymore. We'd boot him out at 8:30 or 9 PM so we could get the other kids to bed, plus with all these dr. visits, we were often up until 2 AM or so, and we needed to get to bed!! We're getting like really old people around here.
I think that's the latest~ that's plenty anyway.
Love you all very much. Thanks so much for your prayers and notes in the mail, for the offers of help, the meals, etc. We couldn't make it through this season quite so intact (if that's what this is) without you!!
Jeanne
The Gamma Knife went pretty well; they say they got everything again. They almost went ahead with the whole brain because they found more lesions, until Pat told them that Nicole was getting married soon, then they said to forget the whole brain, they'll just do the Gamma Knife due to the scheduling. I'm taking a break from chemo because my counts came down, and everything seemed to be normalizing, so Dr. Chui didn't want to create any more havoc. We'll wait until after the wedding, to get scans, then at the next appointment we will discuss options (again), and go from there.
As for our 9-lives Sarah, she and Valerie went skiing with friends two weeks ago. They were dropping some kids off at an apartment and leaned up against a wall that wasn't there. (Her words.) She fell down a story into their car garage, landed on their car (which is fine), and then into a pile of lumber. Valerie got her home, we iced things, gave here some homeopathic Arnica, took her to the ER, and she was dinged up a bit, but ok. They x-rayed her elbow, which had a puncture wound, but no breaks. Our saving grace seemed to be the two college guys waiting in the ER. As Pat and I grilled Sarah..."Now--HOW did you do this again???" They got to listen in and thought she was VERY cool, would have a great story to tell, etc. We laughed for a good 45 minutes. I think the endorphins helped us all a ton. Anyway, she's fine. Ice skating a week later she bit it a few times and it hurt some, but nothing was badly damaged. She had to have one big fat angel watching over and under her!!
Daniel, our 18 year old has Down's Syndrome, and is now is considered "emancipated" in Oregon. We thought it would be a good idea to be able to sign legal forms, documents, etc. for him as we always have, so we applied for guardianship. To do this, they appoint someone to come to your home, check out the people who live with the person, and evaluate whether or not you would be good guardians, whether he really needs it, etc. Now we are waiting for a judge's decision. Should get results in one-two weeks. No stress.
Wedding plans are all made, and now it's the last minute stuff that needs to finally get done. Nicole has this week off, so hopefully it'll all be set for the big day! We're all very excited, especially her fiancee, who is SO happy to not have a curfew anymore. We'd boot him out at 8:30 or 9 PM so we could get the other kids to bed, plus with all these dr. visits, we were often up until 2 AM or so, and we needed to get to bed!! We're getting like really old people around here.
I think that's the latest~ that's plenty anyway.
Love you all very much. Thanks so much for your prayers and notes in the mail, for the offers of help, the meals, etc. We couldn't make it through this season quite so intact (if that's what this is) without you!!
Jeanne
Monday, January 21, 2008
January's trails
The latest update on scans is that I am scheduled for a Gamma Knife treatment in two days, on January 23rd. They thought I would need whole brain, but decided that since the spots are tiny and accessible via this treatment and that I'd responded well to it twice prior, that I was a "good candidate" again. If I had a lot more, or bigger spots I could still need whole brain (WBR). So, here we go again, but Praise the Lord that this technology is available, and that our insurance ok'd it once more. As per chemo, I'll stay at the 60% dose every two weeks for a while to see if that is both tolerable and effective. At this time, my nails and hair are growing back, and the skin on my feet is peeling only very minimally. It doesn't hurt at all, I have no mouth sores... life's so good!!
Wedding prep is coming along, the date is coming up FAST, and we are in awe of how things are coming together, thanks to so many of you. We've had people volunteer to feed us prior to the wedding, help with hair, dresses, "candid photography", etc. etc., and not only is the practical help appreciated, but the thought and caring is treasured. Thanks. And Thanks, Aunt Lucille, Greg and Kristy for paying for the Mother of the Bride dress, and for Claudia helping to choose it. Shopping for clothes (or anything else) is SOO not the first thing on my mind right now, and I really needed the booster!!
Off to bed-we'll leave Tuesday afternoon, stay in Ptld. overnight and be at Providence at 6 AM, bright eyed (ha) and as ready as possible for this next round of GK. Pat's group from work will be in Portland Tuesday for a couple of days of meetings, so we get to have dinner and go bowling with them Tuesday night.
Pray that this will be a "no brainer" for the radiation oncologists, be VERY effective, and that when they attach the frame to my head, they don't leave behind any "loose screws". Seriously...for even more endurance, peace of mind and the ability to trust the Lord more deeply through this journey. It's been amazing. We continually see His hand through so much. We are entering the fourth year of this, and are in awe that He has seen us through my Dad's cancer and death, Sarah's cancer/healing, my own illness/healing-in process, and that we are still able to cry out to Him and know that in His faithfulness to us, He sees our needs before they arise. We can feel His love for us, and even though it's extremely hard at times, each breath we take is ordained of Him and there is purpose in all of this.
Love you,
Jeanne and the herd.
Wedding prep is coming along, the date is coming up FAST, and we are in awe of how things are coming together, thanks to so many of you. We've had people volunteer to feed us prior to the wedding, help with hair, dresses, "candid photography", etc. etc., and not only is the practical help appreciated, but the thought and caring is treasured. Thanks. And Thanks, Aunt Lucille, Greg and Kristy for paying for the Mother of the Bride dress, and for Claudia helping to choose it. Shopping for clothes (or anything else) is SOO not the first thing on my mind right now, and I really needed the booster!!
Off to bed-we'll leave Tuesday afternoon, stay in Ptld. overnight and be at Providence at 6 AM, bright eyed (ha) and as ready as possible for this next round of GK. Pat's group from work will be in Portland Tuesday for a couple of days of meetings, so we get to have dinner and go bowling with them Tuesday night.
Pray that this will be a "no brainer" for the radiation oncologists, be VERY effective, and that when they attach the frame to my head, they don't leave behind any "loose screws". Seriously...for even more endurance, peace of mind and the ability to trust the Lord more deeply through this journey. It's been amazing. We continually see His hand through so much. We are entering the fourth year of this, and are in awe that He has seen us through my Dad's cancer and death, Sarah's cancer/healing, my own illness/healing-in process, and that we are still able to cry out to Him and know that in His faithfulness to us, He sees our needs before they arise. We can feel His love for us, and even though it's extremely hard at times, each breath we take is ordained of Him and there is purpose in all of this.
Love you,
Jeanne and the herd.
Sunday, January 06, 2008
Happy New Year!
It's been an eventful Christmas season for our family...we were able to go to Hawaii finally with the plane tickets that were provided for us a year ago from friends. Unfortunately, we were there in early December when the same storm hit the Northwest. We were able to experience it long distance in Maui. The home that we stayed in had a papaya tree blow down, along with numerous palm fronds, etc. The wind blew the rain so hard it seeped under the master bedroom sliding door/windows. It got so wet, it required pulling out a section of carpet, cutting out the padding underneath, and setting up a dehumidifier and wet/dry vac. to dry the place out. The beaches were closed during the storm, and even a few days afterward. So we spent some time driving around the island, checking out the boats blown up on shore, and doing a little bit of shopping. This was intermingled with putting lots of beach towels down to collect water in that bedroom, and rotating them through the laundry. The home we were in was incredible though. Lots of space for all of us, a large kitchen, pool, outside dining area, a barbecue and a really nice view of the golf course, (wind-swept) ocean, and when the clouds cleared, other islands in the distance. It was great to have the space while it was stormy so everybody could sprawl. The family who let us stay there was incredibly generous-they'd never met us before, and through friends of ours told us it was ok for our entire family to stay there for no charge. Thank You!! Before the storm hit, we were able to swim, snorkel, and boogie board a little, and Sarah drew the wrath of a Puffer Fish that chased her around baring his teeth and looking quite threatening!
We got home from Hawaii, got settled, then began getting ready for Christmas and getting more wedding preparations underway. Christmas day began early, with a few eager beavers wanting to get a jump on things early (6 am) and was very peaceful. New Years was also pretty laid back, with Nicole's fiancee and a couple of other friends coming over to share in it. We actually stayed up until midnight and shot off some fireworks.
As far as health issues go, it's been a bit of a challenge to see what's coming next. A few months ago I was given Taxotere as an IV, and was on Xeloda, an oral chemo drug. This combination gave me mouth sores and thrush which eliminated solid food for a while (liquid diets REALLY aren't as enjoyable.) The skin on my hands and feet peeled off, and left me pretty tender, so I did a lot of couch time. Walking was tough. The doc and we agreed to delay the next scheduled chemo treatment, to give a bit of extra recovery time.
At the next treatment, the doc. tried me on a full dose of Taxotere only, with no Xeloda. We were all filled with great expectations. These hopes were dashed when the mouth sores reappeared, the skin on my hands and feet began to re-peel, and then to top it off my hair came out (after 3 years of chemo, I should have expected this maybe???) and my fingernails and toenails all came off. A true lizard! While I was again on the couch, all the girls spent time trimming my skin with tiny scissors. I left quite a few nails in Hawaii and all over.
Three days after we got home from Hawaii, I had chemo, but this time only received 60% of the regular Taxotere dose. This seems to be very tolerable. All of the stuff that I was doing before-the salt water mouth rinses, two other special mouth sore preps a couple times/day, and slathering up with lotions of all kinds- helped me tolerate the reduced side-effects. The acupuncture treatments twice per week also are helping. I felt like I had more energy than I'd had in a year!!
Despite all of the side effects, the big question is: is the chemo working? I had scans this last week, and will get them interpreted tomorrow (Monday, jan 7th) at our appointment with the medical oncologist. As per my non-trained "how to read the scan report" eye, it looks like there was just a little bit of cancerous growth in my liver. The bones are doing pretty good, but there are more spots in the brain. The doctor may suggest either the Gamma Knife again or whole brain radiation. Of course there's the option of none of the above.
I believe there is a new drug combination that can be fairly effective against brain mets, but I don't know how long it takes to kick in, and as with any chemo combo, it's not possible for me to know if it will be effective. These are questions we'll kick around with the medical onc. as well as the radiation oncologist, the acupuncturist, and hopefully Jonathan, the herbalist. Toward the end of the year, the med. oncs. have a big conference where they review all the new and improved treatment options, so maybe the oncologist will have some other tricks up his sleeve.
Hope you all had a great Christmas, and that the New Year will bring blessings, grace, and peace to you all. Once we have a more concrete plan of action, and a more definitive interpretation of the scans, we'll let you know-as always, keep those prayers a comin', and treasure each day with one another.
Thanks for being a part of our lives. Lots of love to you all,
Jeanne
We got home from Hawaii, got settled, then began getting ready for Christmas and getting more wedding preparations underway. Christmas day began early, with a few eager beavers wanting to get a jump on things early (6 am) and was very peaceful. New Years was also pretty laid back, with Nicole's fiancee and a couple of other friends coming over to share in it. We actually stayed up until midnight and shot off some fireworks.
As far as health issues go, it's been a bit of a challenge to see what's coming next. A few months ago I was given Taxotere as an IV, and was on Xeloda, an oral chemo drug. This combination gave me mouth sores and thrush which eliminated solid food for a while (liquid diets REALLY aren't as enjoyable.) The skin on my hands and feet peeled off, and left me pretty tender, so I did a lot of couch time. Walking was tough. The doc and we agreed to delay the next scheduled chemo treatment, to give a bit of extra recovery time.
At the next treatment, the doc. tried me on a full dose of Taxotere only, with no Xeloda. We were all filled with great expectations. These hopes were dashed when the mouth sores reappeared, the skin on my hands and feet began to re-peel, and then to top it off my hair came out (after 3 years of chemo, I should have expected this maybe???) and my fingernails and toenails all came off. A true lizard! While I was again on the couch, all the girls spent time trimming my skin with tiny scissors. I left quite a few nails in Hawaii and all over.
Three days after we got home from Hawaii, I had chemo, but this time only received 60% of the regular Taxotere dose. This seems to be very tolerable. All of the stuff that I was doing before-the salt water mouth rinses, two other special mouth sore preps a couple times/day, and slathering up with lotions of all kinds- helped me tolerate the reduced side-effects. The acupuncture treatments twice per week also are helping. I felt like I had more energy than I'd had in a year!!
Despite all of the side effects, the big question is: is the chemo working? I had scans this last week, and will get them interpreted tomorrow (Monday, jan 7th) at our appointment with the medical oncologist. As per my non-trained "how to read the scan report" eye, it looks like there was just a little bit of cancerous growth in my liver. The bones are doing pretty good, but there are more spots in the brain. The doctor may suggest either the Gamma Knife again or whole brain radiation. Of course there's the option of none of the above.
I believe there is a new drug combination that can be fairly effective against brain mets, but I don't know how long it takes to kick in, and as with any chemo combo, it's not possible for me to know if it will be effective. These are questions we'll kick around with the medical onc. as well as the radiation oncologist, the acupuncturist, and hopefully Jonathan, the herbalist. Toward the end of the year, the med. oncs. have a big conference where they review all the new and improved treatment options, so maybe the oncologist will have some other tricks up his sleeve.
Hope you all had a great Christmas, and that the New Year will bring blessings, grace, and peace to you all. Once we have a more concrete plan of action, and a more definitive interpretation of the scans, we'll let you know-as always, keep those prayers a comin', and treasure each day with one another.
Thanks for being a part of our lives. Lots of love to you all,
Jeanne