In the Oct. 15th posting, I mentioned Jeanne's severe reaction to the chemo drug, Xeloda. Her hands and feet were very red and sensitive. As well, the mouth sores made eating difficult.
On Monday, October 22nd, Jeanne was scheduled for the next round of chemo. Although we guessed she would not be able to receive treatment, we went to the appointment anyway because we wanted the doctor to see her in person. (Living 80 miles from Portland, we tend to limit the number of trips.) As well, Sarah's 6 month follow-up visit was the same day.
At the visit, the doctor said it was not the worst case of hand-foot syndrome he has seen, but it was bad. He thought it would take another three weeks to heal. He also stated we were wise to discontinue the Xeloda when we did, and would not recommend starting back on it for awhile, and if so, at a reduced dose. As expected, he gave Jeanne the option of receiving Taxotere that day, but recommended she wait. We decided to wait.
So, instead Jeanne was able to go to Sarah's visit. Sarah had an x-ray and blood work, then we saw Dr. Malempati. He said she is looking great, and there are no areas of concern! YEAH! He instructed us on watching for warning signs of a recurrence, or a secondary illness. But, all in all, he, and we, were pleased with her health. Sarah was also glad to see the nurses and staff again, and many commented on how great she looks. (Yes, proud Dad talking here!)
Over the course of the next week, Jeanne improved to the point she could eat most solid foods, was up and about, and doing most things on her own, albeit at a slower pace. So, we went to OHSU to receive her chemo treatment on Monday, October 29th. The doctor stated the lab report showed her liver was improving. In other words, the Taxotere is having a positive effect! He even went so far as to say that if it continues, he may not prescribe the Xeloda again. Good news!
So, she recieved the Taxotere that day. She continued to improve for the next few days, and by Wed, she was making doughnuts, running errands, and seemingly on the mend. But, by Thursday, her hands began to become sore, and her feet were swelling and red. As of this writing, she has been fairly immobile, primarily because her feet are so tender.
Despite all of this, I continue to be impressed with her positive attitude. I personally am not pleasant when sick. Jeanne is a saint in comparison. She is very patient with my inept attempts to help, and my poor timing with humor. Its a bit of a role reversal for us: The nurturer, Jeanne, teaching the clod, me, to nurture.
So, why the title of this entry, "the woods?" We have used the saying "we are not out of the woods yet" to describe our state of progress through illness. It implies that being in the woods is not good, and that we are trying to get to a better place, i.e. a clearing/recovery. Being ill does not feel good, true, but is it bad? Hmmm? It makes me wonder if I just need to view "woods" differently.
Thank you to all that have helped by visiting, bringing meals, praying, and offering helpful tips for her recovery.
Pat
Saturday, November 03, 2007
Monday, October 15, 2007
Oct 2007, and the Announcement
We have not updated everyone for a long time, so we apologize if this entry leaves some gaps. But, be sure to read all the way to the end for the BIG family news.
Presently, (October 15th) Jeanne has been enduring much discomfort from the side effects of the chemo drug, Xeloda. She has developed redness on her hands and feet, so severe it is difficult to walk, and her hands are leathery. And, she has not been able to eat solid foods for a week due to extremely painful mouth sores and thrush. She has been taking some drugs (fluconosol and nyastatin) to treat it. We have seen a slight improvement with her mouth sores, in the last few days, but not yet with her hands and feet.
We appreciate your prayers and thoughts as she perseveres through this time.
Since the last posting in August, 2007:
In the last posting, Jeanne mentioned the chemo drug Doxil was showing good results. The scans in late September, however, showed it was beginning to lose its effectiveness. So, in early October, it was replaced with Taxotere and Xeloda. For those of you counting, this is her fourth chemo combination.
Taxotere is a heavy-hitter among chemo drugs, and the side-effects may be more pronounced as well. Xeloda is an oral drug, which Jeanne was on almost three years ago. The doc is hoping the cancer has not built an immunity to it if its combined with a different companion drug.
Everyone in the family is pitching in to help when Jeanne is not feeling good. One thing we are learning is the daily nature of a chronic disease. It requires us to plan ahead, and to be flexible when those plans need revisions.
The big news is (drum roll please!) ......
Our oldest daughter, Nicole, is engaged to be married! The big day is February 22nd, 2008. The lucky guy is Christopher Zimmerman. If I say much more, he and Nicole will be embarrassed for all the attention. So, I will leave it at that...for now.
Thank you,
Pat Hazleton
Presently, (October 15th) Jeanne has been enduring much discomfort from the side effects of the chemo drug, Xeloda. She has developed redness on her hands and feet, so severe it is difficult to walk, and her hands are leathery. And, she has not been able to eat solid foods for a week due to extremely painful mouth sores and thrush. She has been taking some drugs (fluconosol and nyastatin) to treat it. We have seen a slight improvement with her mouth sores, in the last few days, but not yet with her hands and feet.
We appreciate your prayers and thoughts as she perseveres through this time.
Since the last posting in August, 2007:
In the last posting, Jeanne mentioned the chemo drug Doxil was showing good results. The scans in late September, however, showed it was beginning to lose its effectiveness. So, in early October, it was replaced with Taxotere and Xeloda. For those of you counting, this is her fourth chemo combination.
Taxotere is a heavy-hitter among chemo drugs, and the side-effects may be more pronounced as well. Xeloda is an oral drug, which Jeanne was on almost three years ago. The doc is hoping the cancer has not built an immunity to it if its combined with a different companion drug.
Everyone in the family is pitching in to help when Jeanne is not feeling good. One thing we are learning is the daily nature of a chronic disease. It requires us to plan ahead, and to be flexible when those plans need revisions.
The big news is (drum roll please!) ......
Our oldest daughter, Nicole, is engaged to be married! The big day is February 22nd, 2008. The lucky guy is Christopher Zimmerman. If I say much more, he and Nicole will be embarrassed for all the attention. So, I will leave it at that...for now.
Thank you,
Pat Hazleton
Thursday, August 02, 2007
We Made It!!
Well, this July has passed, and not a serious crisis has occurred!! No cancer diagnosis, no car accidents, no family deaths. I don't tend to be superstitious, but it was getting a little weird for a while. I did have a little incident where some ribs were rotated strangely, and caused enough pain to warrant Vicoden for a couple of days, and it took almost the whole month before I could sneeze without pain. I e-mailed Pat at work about the first sneeze, I was so excited. You can see what he has to put up with!!
As far as health news goes, evidently this chemo regime is working better. I had scans done last week, we met with Dr. Chui up at OHSU on Monday, and he is VERY pleased. He had called down to leave a message on the answering machine that things were looking good-he wanted me to have a good weekend. Nice guy. My liver enzymes are continuing to come down, which is a positive thing. As for the ones that are still a bit high, he thinks the high amount of tumor die-off is the cause. The bones are relatively stable, and the brain had two maybe-enhanced-a little-bit spots, (they were spots that had previously been radiated) but Dr. C. says that they see that all the time after radiation-that it's an inflammatory response. I guess I'd be a bit inflamed if I'd been nuked to pieces. So that's the scoop.
A friend who has inflammatory breast cancer is trying out a new, non-FDA approved drug called DCA. She's combining it with Gemzar (the old chemo I was on), and has had a spectacular drop in her tumor markers evidently. (She's going to the Seattle Cancer Treatment Centers of America-she's not all on her own :D ) It only costs $45 for a two month supply, so I can't imagine that any big company is going to ever want to back it up, but you know, if it works, and if some other country has a few more resources, it would be great to take advantage of it. In "nude white rats" they've seen a 70% reduction in tumor growth in 3 weeks. Dr. Chui says that there have been a LOT of nude white rats cured of cancer, (they just sound so cold, lonely and helpless!!). So it's hard to know if it could produce an actual cure, could stave the cancer off for a while, or what. The human studies have shown it to be effective against some but not all types of cancers. Breast cancer is one they've had success with.
I think that's all for the health stuff. I'm a little more fatigued after this chemo, and we're going to see if I can avoid the Neulasta shot this month and still keep my white blood cell counts up enough for chemo next month. We're thinking that the Neulasta (causes bone pain) combined with the Zometa (causes bone pain) was just a little too extreme for my 'ole bod. So we're praying that Robert's sore throat/head ache, etc. is just a quickly passing cold that doesn't get spread around the entire house. He's trying to set a record and not miss any baseball practices or games, and he's on quite the roll. Still loving it.
Other family stuff...
Sarah is really enjoying photography...enough to win first place in the Corvallis Library teen competition. She won an i-Pod shuffle (whatever that is). She's trying to perfect her abilities, and has taken some fun shots. Now we just need to get them framed and up around here. She's also wanting to photograph people, families, etc. so, if you have a need or just want to give her the practice, give her a call or e-mail. Valerie is getting ready to leave for Mexico with the church youth group for a week. They'll go down, help build houses, befriend people, get filthy dirty, and return home. As soon as she gets back, she has a wedding rehearsal to attend, and the wedding to coordinate the next day. Sounds a little tiring to me, but I'm so glad she has this chance. The rest of us will stay home in the air conditioning, hold down the fort, and pray for a successful trip for all of the kids. Fervency in their love of God, and that they can all be reflections of his caring and grace.
Thanks for "listening". ~ We appreciate our friends so much. Thanks for the prayers and thoughts, and we hope you're having a wonderful remainder of the summer. Take time to have some fun, and love one another.
Love you all,
Jeanne
As far as health news goes, evidently this chemo regime is working better. I had scans done last week, we met with Dr. Chui up at OHSU on Monday, and he is VERY pleased. He had called down to leave a message on the answering machine that things were looking good-he wanted me to have a good weekend. Nice guy. My liver enzymes are continuing to come down, which is a positive thing. As for the ones that are still a bit high, he thinks the high amount of tumor die-off is the cause. The bones are relatively stable, and the brain had two maybe-enhanced-a little-bit spots, (they were spots that had previously been radiated) but Dr. C. says that they see that all the time after radiation-that it's an inflammatory response. I guess I'd be a bit inflamed if I'd been nuked to pieces. So that's the scoop.
A friend who has inflammatory breast cancer is trying out a new, non-FDA approved drug called DCA. She's combining it with Gemzar (the old chemo I was on), and has had a spectacular drop in her tumor markers evidently. (She's going to the Seattle Cancer Treatment Centers of America-she's not all on her own :D ) It only costs $45 for a two month supply, so I can't imagine that any big company is going to ever want to back it up, but you know, if it works, and if some other country has a few more resources, it would be great to take advantage of it. In "nude white rats" they've seen a 70% reduction in tumor growth in 3 weeks. Dr. Chui says that there have been a LOT of nude white rats cured of cancer, (they just sound so cold, lonely and helpless!!). So it's hard to know if it could produce an actual cure, could stave the cancer off for a while, or what. The human studies have shown it to be effective against some but not all types of cancers. Breast cancer is one they've had success with.
I think that's all for the health stuff. I'm a little more fatigued after this chemo, and we're going to see if I can avoid the Neulasta shot this month and still keep my white blood cell counts up enough for chemo next month. We're thinking that the Neulasta (causes bone pain) combined with the Zometa (causes bone pain) was just a little too extreme for my 'ole bod. So we're praying that Robert's sore throat/head ache, etc. is just a quickly passing cold that doesn't get spread around the entire house. He's trying to set a record and not miss any baseball practices or games, and he's on quite the roll. Still loving it.
Other family stuff...
Sarah is really enjoying photography...enough to win first place in the Corvallis Library teen competition. She won an i-Pod shuffle (whatever that is). She's trying to perfect her abilities, and has taken some fun shots. Now we just need to get them framed and up around here. She's also wanting to photograph people, families, etc. so, if you have a need or just want to give her the practice, give her a call or e-mail. Valerie is getting ready to leave for Mexico with the church youth group for a week. They'll go down, help build houses, befriend people, get filthy dirty, and return home. As soon as she gets back, she has a wedding rehearsal to attend, and the wedding to coordinate the next day. Sounds a little tiring to me, but I'm so glad she has this chance. The rest of us will stay home in the air conditioning, hold down the fort, and pray for a successful trip for all of the kids. Fervency in their love of God, and that they can all be reflections of his caring and grace.
Thanks for "listening". ~ We appreciate our friends so much. Thanks for the prayers and thoughts, and we hope you're having a wonderful remainder of the summer. Take time to have some fun, and love one another.
Love you all,
Jeanne
Monday, June 11, 2007
Sarah's Stats
FINDINGS
The superior mediastinal mass seen previously is no longer evident. The lungs are clear. The cardiac silhouette and pulmonary vasculature are now unremarkable. Regional osseous structures of the thorax demonstrate no acute change.
CONCLUSION
Superior mediastinal mass seen previously is no longer evident.
Interpretation is that Sarah is doing GREAT!! We just really really really like to be unremarkable in this way. We have yet to meet with the oncologist, but the doctor who refered us to get the initial CT scan called today to say the scans looked great. Aaaahhh.
Thanks for the prayers. Happy Day.
Jeanne
The superior mediastinal mass seen previously is no longer evident. The lungs are clear. The cardiac silhouette and pulmonary vasculature are now unremarkable. Regional osseous structures of the thorax demonstrate no acute change.
CONCLUSION
Superior mediastinal mass seen previously is no longer evident.
Interpretation is that Sarah is doing GREAT!! We just really really really like to be unremarkable in this way. We have yet to meet with the oncologist, but the doctor who refered us to get the initial CT scan called today to say the scans looked great. Aaaahhh.
Thanks for the prayers. Happy Day.
Jeanne
Friday, June 08, 2007
scan results from May 31 '07
Well, this report was a little mixed. It sounds like there is a bit of bone involvement again in the spine (lumbar region), but there is also some sclerosing going on, which means healing. Same in the liver...there are some old spots that appear shrunken a bit, and some new spots that the oncologist thinks were actually there before but are just now appearing on the scans. This opinion is based on the very visual photo that they took of the liver when they took out the ovaries. So, since there was some new growth, and the other chemo was only moderately effective, we switched on Monday to Doxil. This has a better reputation for dealing with breast cancer cells than the Gemzar, so hopefully we'll see lots of tumor reduction. Complete would be nice. Monday we were at OHSU for treatment, (they also added Zometa back in for the bone mets), Wednesday I was at Ambulatory here in Corvallis for a Neulasta injection (keeps the white cell count up so you don't have to miss any chemo. Mine have been quite good so far, but I think he's erring on the side of caution.) Thursday I went to Salem for IV vitamin C, and today is quiet at home. Both the Zometa and the Neulasta have bone pain as a side effect, and yeow. I was side lined in the evenings for a couple of nights. Thankfully this regime is once per month and not weekly. I have an appointment with the herbalist this Tuesday, so we can get a tincture specific to this treatment plan up and running, and revise the other supplements I'm on.
Sarah is going in for her chest x-ray today to make sure things are still shrinking and not active. We do not yet have an appointment set with her oncologist, so we'll not have results back right away. Probably in another week. She's doing well-she's been picking berries at OSU in the mornings, and is enjoying the thought of a good paycheck. She's also wrapping up her "Pillowcases for Pals" project with her 4-H leadership group. They collected lots of donations, stuffed pillowcases with fun things and will take them to the hospital to give to children who need to be there for a length of time.
Robert got Player of the Game in his baseball game Wednesday night, so that was exciting. He'll be playing daily for Parks and Rec. this summer.
Everybody else is doing ok...working, doing music, taking care of the rest of us :D
Take care, love you, and thanks for the prayers!
Jeanne
Sarah is going in for her chest x-ray today to make sure things are still shrinking and not active. We do not yet have an appointment set with her oncologist, so we'll not have results back right away. Probably in another week. She's doing well-she's been picking berries at OSU in the mornings, and is enjoying the thought of a good paycheck. She's also wrapping up her "Pillowcases for Pals" project with her 4-H leadership group. They collected lots of donations, stuffed pillowcases with fun things and will take them to the hospital to give to children who need to be there for a length of time.
Robert got Player of the Game in his baseball game Wednesday night, so that was exciting. He'll be playing daily for Parks and Rec. this summer.
Everybody else is doing ok...working, doing music, taking care of the rest of us :D
Take care, love you, and thanks for the prayers!
Jeanne
Thursday, May 31, 2007
Scans Today
Hi everybody:
Today is (Oh Boy-Can't Wait) scan day again. I'll begin drinking my Barium Smoothie at about 10 am, report to the Brain MRI arena for an hour of brain hammering thrills, then go to radiology for a follow-up with the guys to scan the torso for signs of spread, stability or regression of the cancer in the liver, chest wall, spine, etc. This is a little unnerving, as the last scan indicated I needed the Gamma Knife treatment again. As kind and skilled as those folks are up there, I'd really prefer that trip to Hawaii we've been talking about!! Results from today's tests should be available this next Monday when I go up for chemo. It has been a really busy couple of months with the Gamma Knife (then recovery), next the ovaries out (and recovery), followed with chemo every two weeks. So far it's going ok-much better than months ago when I was reacting harshly to it.
We have switched our medical oncology team to OHSU (Oregon Health Science University) in Portland, and have been pleased so far. The communication between people is very good, and it's nice to have a fresh start. Dr. Chui, the oncologist, is supportive of trying things to optimize my chances at a longer life span and is looking at things along that thought pattern. He has someone going through her 12th chemo and doing very well, which is (believe it or not) encouraging. When there are mets in the brain and liver, the options can seem a little narrow. So every day, we just put one foot in front of the other, and like a little kid, wait for God to direct our path. Sometimes we do the little kid dance, and try to run ahead or lag behind, but He has been there to pick up pieces when we mess up, so we have to focus on that and not beat ourselves up.
Pat went to Virginia to be with his siblings and parents for an extended weekend, and had a great time. The kids and I went to Foster Lake on Saturday with the inflatable kayak (we really need a hard body one to get up some speed) and it was a blast. Not too crowded, wonderful weather, and it was so nice to be with all of the kids-nobody at work, recitals, etc. We came home and just hung out all weekend and took it easy. Very nourishing.
Sarah bought herself a couple of new lenses (!) for her Nikon D80 that she got through the Make-A-Wish foundation. One is a nice zoom lens, so as she does photography for Robert's baseball team, she should be able to get some closer shots. She is still very infatuated with photography as a whole, and loves this camera. She is also due for scans, and we're just waiting for the heads up from the doc. to set up her app't. with radiology. It should be within the next week.
A family from church came out and put up a beautiful shed in the back yard so we can get a bit more space options around here-they did a fantastic job, and only have a bit left to finish up. The quality of it makes me wonder if we should just move some people out there, instead of "stuff". Thanks, guys-we appreciate it a LOT!!!
Everybody else is hanging in there, doing the regular stuff-work, play, Special O. track for Dan is finishing up, Baseball for Robert is coming to an end soon...then comes summer which we need to organize for a bit.
Love you all, thanks for praying and for your support.
Jeanne
Today is (Oh Boy-Can't Wait) scan day again. I'll begin drinking my Barium Smoothie at about 10 am, report to the Brain MRI arena for an hour of brain hammering thrills, then go to radiology for a follow-up with the guys to scan the torso for signs of spread, stability or regression of the cancer in the liver, chest wall, spine, etc. This is a little unnerving, as the last scan indicated I needed the Gamma Knife treatment again. As kind and skilled as those folks are up there, I'd really prefer that trip to Hawaii we've been talking about!! Results from today's tests should be available this next Monday when I go up for chemo. It has been a really busy couple of months with the Gamma Knife (then recovery), next the ovaries out (and recovery), followed with chemo every two weeks. So far it's going ok-much better than months ago when I was reacting harshly to it.
We have switched our medical oncology team to OHSU (Oregon Health Science University) in Portland, and have been pleased so far. The communication between people is very good, and it's nice to have a fresh start. Dr. Chui, the oncologist, is supportive of trying things to optimize my chances at a longer life span and is looking at things along that thought pattern. He has someone going through her 12th chemo and doing very well, which is (believe it or not) encouraging. When there are mets in the brain and liver, the options can seem a little narrow. So every day, we just put one foot in front of the other, and like a little kid, wait for God to direct our path. Sometimes we do the little kid dance, and try to run ahead or lag behind, but He has been there to pick up pieces when we mess up, so we have to focus on that and not beat ourselves up.
Pat went to Virginia to be with his siblings and parents for an extended weekend, and had a great time. The kids and I went to Foster Lake on Saturday with the inflatable kayak (we really need a hard body one to get up some speed) and it was a blast. Not too crowded, wonderful weather, and it was so nice to be with all of the kids-nobody at work, recitals, etc. We came home and just hung out all weekend and took it easy. Very nourishing.
Sarah bought herself a couple of new lenses (!) for her Nikon D80 that she got through the Make-A-Wish foundation. One is a nice zoom lens, so as she does photography for Robert's baseball team, she should be able to get some closer shots. She is still very infatuated with photography as a whole, and loves this camera. She is also due for scans, and we're just waiting for the heads up from the doc. to set up her app't. with radiology. It should be within the next week.
A family from church came out and put up a beautiful shed in the back yard so we can get a bit more space options around here-they did a fantastic job, and only have a bit left to finish up. The quality of it makes me wonder if we should just move some people out there, instead of "stuff". Thanks, guys-we appreciate it a LOT!!!
Everybody else is hanging in there, doing the regular stuff-work, play, Special O. track for Dan is finishing up, Baseball for Robert is coming to an end soon...then comes summer which we need to organize for a bit.
Love you all, thanks for praying and for your support.
Jeanne
Monday, April 16, 2007
April's News, so far...
I hadn't put out another blog telling everyone about the latest stuff, as it all happened kind of quickly, and I wasn't sure exactly what to expect. Like I EVER know what to expect these days?!? Pat and I went up to OHSU to see the oncologist and discuss chemo regimes on April 2nd. Instead we ended up discussing the disadvantages of having "ovaries of steel" that have evidently endured two years of chemotherapy. This typically doesn't happen, and is (while I'm proud of my buff little "girl friends") not considered acceptable when you have an estrogen driven cancer. He recommended that I get them removed-that week. We met with a lovely OB/GYN on April 3rd and she drew labs, etc. that indeed confirmed that my estrogen levels were surging, and that she could take them out, but not until the next week. Wednesday the 11th she did the deed, and while she was in there, found the liver, invited another surgeon in who took out a piece of tumor, and they shipped it down to CA to Dr. Weisenthal's laboratory to see if he could give input as to an appropriate chemo regime. Dr. Chui at OHSU has a plan of his own, and maybe we can combine heads a bit here to see what will be the most effective next step. This is a procedure that I've been wanting to do for a long time, but the risk of anesthesia, surgery recovery, etc. etc. plus the fact that insurance didn't want to cover the tumor removal and assay, have until this time been insurmountable. Wow! Two surgeries for the price and healing of one!! What a deal. (A tumor assay is when they remove a kidney bean piece of tumor, put it in a special medium to preserve it, then test it against different potential chemotherapy drugs to see which are the most, the least, and midline effective toward killing the cancer cells. It's not evidently as refined a process as testing bacteria against antibiotics yet, but can increase the odds of getting an appropriate chemo by 7 to 1. Jonathan Treasure and his co-horts have used this lab frequently, and again, while it's not 100%, they've seen some remarkable things happen. If I'm going to work to really fight this stuff, I feel like I'll take any extra tricks that are available.)
This week I've been laying very low obviously. We were originally going to begin chemo today, which would've been just 5 days post-surgery, but decided to post pone until Thursday, giving me a few extra days which I think will be a good thing. I know I need to get back on it though, as the liver photo was a little ugly. (They took pictures of all the important organs and gave them to us. What a keepsake!) There is never a super clear cut path through timing of what you do and when you do it, as everyone responds so differently, and my system has had to deal with so much over the last 2 plus years that we weren't sure how it would heal up. Stopping the estrogen is deemed a partial treatment though, and I hope that in the long run that this will be a good move. So that's it for my stuff for now. I feel confident that the Lord will allow me to be on earth as long as I have a purpose that is to be fulfilled, and so my trust continues to lie in Him. His orchestration of things is more than I can comprehend, and this life for any of us is such a delicate balance to walk out. What we do with our fear, our doubt, lack of trust or belief...and how we love one another is the stuff of what it's truly made of. All temporal things will (by definition) pass away, but He and those who are His will not. I'm excited for a new heaven and a new earth, without the effects of sin and pain. (Not enough to forgo treatment, or jump off a cliff, mind you, but to live in that promised peace is a wonder to me!!)
The rest of the family is hanging in there...Valerie turned 22 on April 4th, and once again we've had to post-pone her party. Aargh. She and Nicole came down with colds in the middle of all of the surgery/recovery time, and now Pat's got it. Daniel has a touch of it, but it's not extreme yet. Sarah sewed a skirt for a 4-H fashion review, modeled it, etc. and gets to go to State with it this summer. Robert is loving baseball still, and has two practices and three games this week. So glad we have extra drivers for this stuff. Th' th' th' that's all folks!
Thanks for those of you who found out about the surgery and brought flowers, meals, cards and books to read. It was (is) nice to have some visual beauty and encouraging words to read in the house when you lose some body parts whether it's wanted or not. Thank you.
Love you bunches,
Jeanne
This week I've been laying very low obviously. We were originally going to begin chemo today, which would've been just 5 days post-surgery, but decided to post pone until Thursday, giving me a few extra days which I think will be a good thing. I know I need to get back on it though, as the liver photo was a little ugly. (They took pictures of all the important organs and gave them to us. What a keepsake!) There is never a super clear cut path through timing of what you do and when you do it, as everyone responds so differently, and my system has had to deal with so much over the last 2 plus years that we weren't sure how it would heal up. Stopping the estrogen is deemed a partial treatment though, and I hope that in the long run that this will be a good move. So that's it for my stuff for now. I feel confident that the Lord will allow me to be on earth as long as I have a purpose that is to be fulfilled, and so my trust continues to lie in Him. His orchestration of things is more than I can comprehend, and this life for any of us is such a delicate balance to walk out. What we do with our fear, our doubt, lack of trust or belief...and how we love one another is the stuff of what it's truly made of. All temporal things will (by definition) pass away, but He and those who are His will not. I'm excited for a new heaven and a new earth, without the effects of sin and pain. (Not enough to forgo treatment, or jump off a cliff, mind you, but to live in that promised peace is a wonder to me!!)
The rest of the family is hanging in there...Valerie turned 22 on April 4th, and once again we've had to post-pone her party. Aargh. She and Nicole came down with colds in the middle of all of the surgery/recovery time, and now Pat's got it. Daniel has a touch of it, but it's not extreme yet. Sarah sewed a skirt for a 4-H fashion review, modeled it, etc. and gets to go to State with it this summer. Robert is loving baseball still, and has two practices and three games this week. So glad we have extra drivers for this stuff. Th' th' th' that's all folks!
Thanks for those of you who found out about the surgery and brought flowers, meals, cards and books to read. It was (is) nice to have some visual beauty and encouraging words to read in the house when you lose some body parts whether it's wanted or not. Thank you.
Love you bunches,
Jeanne
Saturday, March 24, 2007
Recovery Time
Today, Saturday, is 3 days out from the GK treatment. I can now wiggle my eyebrows up and down almost all the way with hardly any pain from the screw holes in my temporal areas. It still hurts a bit to lay down on the back of my head and the very top of my scalp still feels numb. Nicole put some antibiotic ointment on a couple of raw spots last night, and it helped-that stuff is pretty gnarly to get out of your hair though. The doctors kept telling Pat that it was obvious that he didn't give me many martinis, judging from how quick I reacted to the pain meds. Evidently I giggled through the bulk of the procedure. Except for when I woke up and they were screwing something tighter and my hair was getting screwed into the mix, and when they would rotate my head certain directions and manipulate the table I was on in another direction. Yuck.
Today a physical therapist did some cranial sacral work on my head and Wow. Gentle touch is especially meaningful after physical trauma. After being held in a vice grip for so many hours, plus the general stress of this new development it was wonderful to have some kind, focused time to just rest and heal a bit from Wednesday with no interruptions. This afternoon I took a bike ride through campus to Monroe street and back. It went ok...told Pat I'd take the cell phone in case I tipped over-which made him nervous. Never know how well my balance will be after a couple days of being drugged and nuked. The only problem was on the path past the OSU cow/sheep barns where there are a lot of bumps. It felt like some of the craters where either screws were, or radiation was focused didn't quite know what to do with themselves. I was hoping I wouldn't come home with concave spots whether visable or not. Campus is MUCH more smooth. . Yeow. So, still taking it moderately easy, increasing activities daily. Repotted a bunch of tomatoes today, still have a ton more to go. It'll happen. Pat's recuperating too. He came home from work at about 6 pm yesterday, went to bed with no dinner, and woke up at about 6:30 this morning.
Sarah's having a blast with her new Nikon D-80 camera. Yeah-Make-A-Wish Foundation!! Not only was planning and reading up on photography a great distraction from a cruddy situation, she's got some fantastic equipment, and is taking some fun photos. We practically have to pry it out of her hands at bedtime. Very fun. Not bedtime...the camera.
So-that's about it. Thanks, those that have sent cards and e-mails, etc. It helps a LOT to know you're rooting for us. This is NOT a solo road.
Jeanne
Today a physical therapist did some cranial sacral work on my head and Wow. Gentle touch is especially meaningful after physical trauma. After being held in a vice grip for so many hours, plus the general stress of this new development it was wonderful to have some kind, focused time to just rest and heal a bit from Wednesday with no interruptions. This afternoon I took a bike ride through campus to Monroe street and back. It went ok...told Pat I'd take the cell phone in case I tipped over-which made him nervous. Never know how well my balance will be after a couple days of being drugged and nuked. The only problem was on the path past the OSU cow/sheep barns where there are a lot of bumps. It felt like some of the craters where either screws were, or radiation was focused didn't quite know what to do with themselves. I was hoping I wouldn't come home with concave spots whether visable or not. Campus is MUCH more smooth. . Yeow. So, still taking it moderately easy, increasing activities daily. Repotted a bunch of tomatoes today, still have a ton more to go. It'll happen. Pat's recuperating too. He came home from work at about 6 pm yesterday, went to bed with no dinner, and woke up at about 6:30 this morning.
Sarah's having a blast with her new Nikon D-80 camera. Yeah-Make-A-Wish Foundation!! Not only was planning and reading up on photography a great distraction from a cruddy situation, she's got some fantastic equipment, and is taking some fun photos. We practically have to pry it out of her hands at bedtime. Very fun. Not bedtime...the camera.
So-that's about it. Thanks, those that have sent cards and e-mails, etc. It helps a LOT to know you're rooting for us. This is NOT a solo road.
Jeanne
Thursday, March 22, 2007
Gamma Knife, the sequel
Jeanne had the Gamma Knife procedure performed on Wed. March 21. The Gamma knife radiated the small cancerous tumors that had formed in her brain. We will not know if the procedure was completely successful until follow up scans are done in the months ahead. But, the doctors are confident that they got all of them.
And, "all of them" actually totaled seven tumors, not four, as previously thought. The reason for the difference is the MRI scanner used just prior to the procedure, at the Providence Hospital, is better-suited for brain scans than the MRI used here in Corvallis.
Jeanne is recovering well. The discomfort she feels today is not so much due not to the radiation, but to the metal frame that was pinned to her head for 6 hours. (Yes, metal!) She is very tired, but resting comfortably.
Next up, we will go back to the oncologist in early April to determine what chemo drugs and other therapies to begin.
Thank you for your thoughts and prayers for Jeanne.
Patrick
And, "all of them" actually totaled seven tumors, not four, as previously thought. The reason for the difference is the MRI scanner used just prior to the procedure, at the Providence Hospital, is better-suited for brain scans than the MRI used here in Corvallis.
Jeanne is recovering well. The discomfort she feels today is not so much due not to the radiation, but to the metal frame that was pinned to her head for 6 hours. (Yes, metal!) She is very tired, but resting comfortably.
Next up, we will go back to the oncologist in early April to determine what chemo drugs and other therapies to begin.
Thank you for your thoughts and prayers for Jeanne.
Patrick
Wednesday, March 14, 2007
PS to yesterday
I just spent some time re-reading a lot of the last blog postings. I know that this started as a way to keep you updated on what was going on cancer-wise, etc. with our family as it is often hard or feels intrusive to ask, and for us to repeat everything numerous times dries out our mouth. :D (If only I could learn to condense!!)
I was a little struck however, that one thing I would like for this to be is somehow an encouragement. Laying in bed last night, I reflected on our friends-how deep and wide our friendships with you have become. How much the Lord has allowed some of our lives to intertwine. I was so thankful. Reflecting lately on relationships, and what God wants from us, I thought that this blog is not really about "the cancer". It is about how much we love you all. How much all of us long to be included. How much potential we have as humans to grow spiritually-closer to God, closer to one another, living up to our potential in every area. Watching Robert get to play ball, Sarah get to learn photography, the other ones grow in every single area of their lives. The creativity in which we have to express joy, gratefulness, love, compassion, peace, forgiveness, even frustrations and learning to grow past those. The myriad of ways we are each given to reflect beauty and life is astounding. I guess I would like to encourage you to live that out to the fullest potential. As we choose to be filled with the spirit of God and create in the ways of our creator, whether it involves writing, athletics, loving service, music, art, even accounting or marketing :D (Pat and Nicole) it is such a blessed gift! Walk in it, revel in it. That is a form of worship. I believe it is pleasing to God. Our thoughts can be turned toward those things that are pure and holy, noble and of good report from those reflected in the morning paper, or from the tough individual circumstances each one of us face. Many of you see our lives right now as a monumental struggle, and to some degree they are. What is more of a struggle for each one of us is how to live each day intentionally, full of purpose and kindness. It would be a shame for the only focus of these postings to be on "the cancer". That would give it such power, which is doesn't deserve. What if the entire focus of my life was this disease, and my life was cut short by some calamity today or tomorrow? I wouldn't want to be known as this cancer victim, but instead by the other things that I've been able to bring to life-not death. Anyway, just needed to ramble some more. Thanks for taking the time. I encourage you today to bask in goodness. The breath of life. Plant flowers (my baby peas are up, as are the tomato starts!) Draw, play or listen to good music, look at the clouds (easy enough), eat good food. Live simply, but fully. Don't let anger, apathy, or anyone else's "downer day" turn yours into one. Choose joy. We love you all so much. Thanks for being a huge part of our lives.
Jeanne
I was a little struck however, that one thing I would like for this to be is somehow an encouragement. Laying in bed last night, I reflected on our friends-how deep and wide our friendships with you have become. How much the Lord has allowed some of our lives to intertwine. I was so thankful. Reflecting lately on relationships, and what God wants from us, I thought that this blog is not really about "the cancer". It is about how much we love you all. How much all of us long to be included. How much potential we have as humans to grow spiritually-closer to God, closer to one another, living up to our potential in every area. Watching Robert get to play ball, Sarah get to learn photography, the other ones grow in every single area of their lives. The creativity in which we have to express joy, gratefulness, love, compassion, peace, forgiveness, even frustrations and learning to grow past those. The myriad of ways we are each given to reflect beauty and life is astounding. I guess I would like to encourage you to live that out to the fullest potential. As we choose to be filled with the spirit of God and create in the ways of our creator, whether it involves writing, athletics, loving service, music, art, even accounting or marketing :D (Pat and Nicole) it is such a blessed gift! Walk in it, revel in it. That is a form of worship. I believe it is pleasing to God. Our thoughts can be turned toward those things that are pure and holy, noble and of good report from those reflected in the morning paper, or from the tough individual circumstances each one of us face. Many of you see our lives right now as a monumental struggle, and to some degree they are. What is more of a struggle for each one of us is how to live each day intentionally, full of purpose and kindness. It would be a shame for the only focus of these postings to be on "the cancer". That would give it such power, which is doesn't deserve. What if the entire focus of my life was this disease, and my life was cut short by some calamity today or tomorrow? I wouldn't want to be known as this cancer victim, but instead by the other things that I've been able to bring to life-not death. Anyway, just needed to ramble some more. Thanks for taking the time. I encourage you today to bask in goodness. The breath of life. Plant flowers (my baby peas are up, as are the tomato starts!) Draw, play or listen to good music, look at the clouds (easy enough), eat good food. Live simply, but fully. Don't let anger, apathy, or anyone else's "downer day" turn yours into one. Choose joy. We love you all so much. Thanks for being a huge part of our lives.
Jeanne
Tuesday, March 13, 2007
Plans...March '07
Ok, so we're not done yet. The brain MRI showed four new spots, so the Gamma Guy in Portland said we'll just zap 'em right out of there. That procedure is scheduled for March 21st, which is the earliest they could get me in. Evidently there are a bunch of people in line for this carnival ride. Pat and I will go up the 20th, meet with the micro-neuro-surgeon (Can you say "My Mom's proud of ME?") and a couple of other extreme doctors, make sure this will all fly, then get to the hospital at 5:45 or 6 am next day for the drugging and screwing on of the really really tight metal frame that will (please God) keep them from radiating the wrong part of my already challenged mental gray, white etc matter. Gray is kind of a dull color for something that's so amazing as the brain. Maybe chartruese or that purpley-orange-red color of a sunset? Even chrome?? Anyway, that's the brain.
The liver is not yet perfect. It has a few spots that grew together, and some new stuff. So, that means that after I'm done with the Brain Blaster, I wait two weeks and get a new chemo regime as per what they deem I can handle at that time. His (Dr. Chui, the breast cancer specialist at OHSU) prediction at this point is that my liver is not near failing (thanks, that's good) and he will assess me at the 2 week post radiation mark, then start me on some new stuff. If I'm looking/feeling strong, he'll have more options to work with. I'm thinking-Yeah-me too! He wants me to be done with any side effects of the radiation, and give my immune system a chance to recover.
Bones at this time look ok, but there is one small spot on the right posterior chest wall that looks suspicious for malignancy.
So here we go. The good part is that I expected actually a little more stuff in the liver if it were to be growing. I've been off of chemo for a long time, (appreciating every minute), so the liver could have had a worse showing. Could've been better, too, but it is what it is, and we have to deal with that.
In preparation, a few of us are going through colds, so our bodies can experience the normal winter wonder that comes with Oregon. It almost feels good to have something that anybody else can relate to, and you know will go away. We will also need to alter our once altered already vacation that a lot of you so lovingly planned for us. It WILL get done. We just have to refigure out when, reorganize work schedules, tickets, etc.
Prayers could include healing, scheduling, endurance, all the communications with everyone that need to take place do so in a timely matter so all the details are taken care of, that the kids and Pat can keep up with their mom's "stuff" emotionally as well as physically. This is the marathon of marathons for them.
That's it on this end. Never a dull moment. Sure would be nice???
Love you!
Jeanne
PS: Thanks again, Travis and Staff at Great Harvest. You guys are wonderful. Blessings. Susan, John and Alice-you guys represent the good part of this. Would've been nice around more pleasant circumstances, but...oh well. Thanks for the friendship.
The liver is not yet perfect. It has a few spots that grew together, and some new stuff. So, that means that after I'm done with the Brain Blaster, I wait two weeks and get a new chemo regime as per what they deem I can handle at that time. His (Dr. Chui, the breast cancer specialist at OHSU) prediction at this point is that my liver is not near failing (thanks, that's good) and he will assess me at the 2 week post radiation mark, then start me on some new stuff. If I'm looking/feeling strong, he'll have more options to work with. I'm thinking-Yeah-me too! He wants me to be done with any side effects of the radiation, and give my immune system a chance to recover.
Bones at this time look ok, but there is one small spot on the right posterior chest wall that looks suspicious for malignancy.
So here we go. The good part is that I expected actually a little more stuff in the liver if it were to be growing. I've been off of chemo for a long time, (appreciating every minute), so the liver could have had a worse showing. Could've been better, too, but it is what it is, and we have to deal with that.
In preparation, a few of us are going through colds, so our bodies can experience the normal winter wonder that comes with Oregon. It almost feels good to have something that anybody else can relate to, and you know will go away. We will also need to alter our once altered already vacation that a lot of you so lovingly planned for us. It WILL get done. We just have to refigure out when, reorganize work schedules, tickets, etc.
Prayers could include healing, scheduling, endurance, all the communications with everyone that need to take place do so in a timely matter so all the details are taken care of, that the kids and Pat can keep up with their mom's "stuff" emotionally as well as physically. This is the marathon of marathons for them.
That's it on this end. Never a dull moment. Sure would be nice???
Love you!
Jeanne
PS: Thanks again, Travis and Staff at Great Harvest. You guys are wonderful. Blessings. Susan, John and Alice-you guys represent the good part of this. Would've been nice around more pleasant circumstances, but...oh well. Thanks for the friendship.
Thursday, March 08, 2007
Jeanne's scans
If cancer is weird, treatment is weirder. Today I went into my scans-an hour long brain MRI followed by two jugs of "citrus" flavored barium slime. It kind of tastes like a great grandmother's cheap metal-icky perfume that takes your breath away as your throat closes. At 2 pm I got the lovely experience of yet another CT scan. No, we don't have results. I have no idea when we will, and I am vascilating between caring very deeply, and being so exhausted from the last two years and feeling so free from the medicalized part of this that I really don't give a rip. I've been feeling very good, very whole, and am NOT anxious in the least to begin chemo again. I'm not anxious to begin dealing with another clinic of any kind. Or begin with any other doctors. For someone who gave birth to her five kids at home, and just wants to live a simple life, this is the ultimate high-tech, high-drug NOT wanted life style. A little Grande Vente with foam.
Pat and I both had good feelings about going into this scan. I've been doing so well, recuperating from the last years of chemo, basking (almost-this will take some time) in Sarah being done with her treatment, and it feels like the tide is turning. No crises, no trauma, no drama. Aaah. So I'm kind of vibrating thinking that this could turn again, and possibly mean starting over with all the medical interventions. But maybe it won't. But maybe it will. The head games are almost as bad as the drugs.
I guess that one of the issues too, is that a friend just passed away a short time ago in Hawaii from a brain tumor, another is going to be entering hospice, and another just had surgery on a brain tumor. It feels heavy around here, and so it's hard to look at the bright side sometimes. I don't remember all this cancer when I was growing up. Anybody want to look into an environmental epidemiologist? Something? I long for the words "No Evidence of Disease".
Tomorrow we'll call to set up an app't to review scans. They should be ready by Monday. Pat's got a screen saver that says "You cannot stop the waves, but you can learn to surf". Yep. I'm still learning.
Been talking to God a bit-you know how they say people start bargaining, looking for signs, etc. I take consolation in a potential sign...in the scariest restroom in the hospital, the automatic flush toilet designed to save water truly only flushed once not thrice. Awesome. And then, to further confirm that grace was with me, the automatic towel dispenser worked without doing any Tai Chi or even smacking it. Things must be turning around.
When we got back from the hospital, Daniel ran outside, gave me a big hug and asked where I'd been. I told him "The hospital", and he immediately checked out my port to give it some attention as it typically has a cotton ball taped to it each Wed. and Fri., and the occasional Thursdays for IV treatments. He's extremely compassionate. Maybe after heart surgery he really gets it, or maybe he's just been wired that way from the start. Whatever it is, it makes me want to stick around for the guy. The kids are what can really ignite a passion for life. They understand and draw things out from us that we never ever thought we would or could on our own.
Enough ramblings for the evening...Peace and rest to you, and many hugs from lots of kids-especially those that radiate an extra measure of God's compassion. Make friends with some of these special ones. It's So worth it.
Jeanne
Pat and I both had good feelings about going into this scan. I've been doing so well, recuperating from the last years of chemo, basking (almost-this will take some time) in Sarah being done with her treatment, and it feels like the tide is turning. No crises, no trauma, no drama. Aaah. So I'm kind of vibrating thinking that this could turn again, and possibly mean starting over with all the medical interventions. But maybe it won't. But maybe it will. The head games are almost as bad as the drugs.
I guess that one of the issues too, is that a friend just passed away a short time ago in Hawaii from a brain tumor, another is going to be entering hospice, and another just had surgery on a brain tumor. It feels heavy around here, and so it's hard to look at the bright side sometimes. I don't remember all this cancer when I was growing up. Anybody want to look into an environmental epidemiologist? Something? I long for the words "No Evidence of Disease".
Tomorrow we'll call to set up an app't to review scans. They should be ready by Monday. Pat's got a screen saver that says "You cannot stop the waves, but you can learn to surf". Yep. I'm still learning.
Been talking to God a bit-you know how they say people start bargaining, looking for signs, etc. I take consolation in a potential sign...in the scariest restroom in the hospital, the automatic flush toilet designed to save water truly only flushed once not thrice. Awesome. And then, to further confirm that grace was with me, the automatic towel dispenser worked without doing any Tai Chi or even smacking it. Things must be turning around.
When we got back from the hospital, Daniel ran outside, gave me a big hug and asked where I'd been. I told him "The hospital", and he immediately checked out my port to give it some attention as it typically has a cotton ball taped to it each Wed. and Fri., and the occasional Thursdays for IV treatments. He's extremely compassionate. Maybe after heart surgery he really gets it, or maybe he's just been wired that way from the start. Whatever it is, it makes me want to stick around for the guy. The kids are what can really ignite a passion for life. They understand and draw things out from us that we never ever thought we would or could on our own.
Enough ramblings for the evening...Peace and rest to you, and many hugs from lots of kids-especially those that radiate an extra measure of God's compassion. Make friends with some of these special ones. It's So worth it.
Jeanne
Thursday, March 01, 2007
Are we done yet???
Things have been a little crazy, trying to keep up with everybody's "stuff" around here...as Pat posted in January, Sarah had her next to last chemo on her 14th birthday. We had to wait until February 4th until we could celebrate with a party, so we had the "done with chemo, turned 14" party at the church. Between 90 and 100 people came, so thanks everybody for helping Sarah to feel such a part of the community, and get loved on a bit. It was a LOT of fun for us.
That following Thursday, the 8th, we went to the Children's Cancer Association's 3900 square foot "cabin" for a 4 day get away. Some wonderful friends came over on Friday, and we played pool, air hockey, games, ate good food, and kept saying "WOW" every time we went in another room and looked at the incredible art, beautiful decor, and provisions of every kind. (Things like a huge gas fireplace in the master bedroom, leather couches in the main room, wonderfully thought out kitchen area, etc. etc.) We took the boat onto the lake, roasted hot dogs on the private beach, and just spent time together. If anyone has a child with a life threatening illness, it's a great place to go. There are no doctors, nurses, needles, scans, appointments to keep, or toxic drugs there. It could have been a yurt and been a delight, but the CCA has done an incredible job of spoiling the folks who have to endure these treatments.
Next, on the 24th, the owner of Great Harvest Bread here in town spurred on by our friend Susan Heinz, put on an incredibly fun fundraiser for our family. We got to invite a few friends to work the bakery with us, and along with Travis, the owner, two of his young boys, and his awesome staff, we made bread and treats and got to work the counter all day. They sold out of all bread at 2:34 PM, and called folks to claim their reserved items, or they might run out the door. Every muffin and cheesestick was gone, and there were some lonely shelves at the end of the day. Susan has been working hard to arrange for a trip away for our family, and we were able to easily finish covering the final arrangements for this, plus put some into the Medical Account to cover more trips to OHSU and other appointments. Oh boy oh boy!! Thank you to all those who contributed, participated, and who have silently continued to do so over the last two plus years. You are incredibly faithful.
On February 27th, we went to OHSU for Sarah's scans. She was to do a PET, a CT scan and a chest x-ray. Evidently the PET and X-ray were done, but somehow the CT scan got lost in the shuffle. The doctor isn't sure why this didn't get done. This coming Monday we'll go up again and redo it. The preliminary tests look ok, but we still need the CT scan to determine if the mediastinal tumor mass has shrunk the required 70%, and the CT scan is the only one that accurately measures the exact size of the mass. Rats.
I am still off of chemo. We spoke with the insurance company, and they've ok'd a six month time frame for me to transfer to OHSU for my care. It's taken a long time to organize all this! Now Dr. Chui's office will call to tell us when we can either go up there for scans, or get them down here. It's been so great being off chemo. My body has done some serious detoxifying, and I've been reliving a lot of 24-36 hour chemo reactions as stuff flushes out. Very sore toenails, tender scalp, major nausea, bleeding gums--it's weird, because I was so intent on getting the cancer to go away that I tried to not pay too much attention to the side effects. Now as I go through each one I think "Oh yeah-I remember this!" At least my fingernails and the skin on my feet didn't fall off. After each detox "symptom" I feel a higher level of well-being. The plan as we spoke with the OHSU med. onc. at our last visit, was that if things were to remain stable I could decide whether to stay off of chemo a little longer. If the cancer has grown, then we'd need to decide what cocktail to try next. Still hoping for a miracle-this is the longest I've been off of chemo since I started this-the last of November was the last infusion. I'm still on IVC, so I'm not escaping needles and long appointments, but at least I feel good!!
The rest of the family is doing well. Nicole's still working M-F in Albany, Valerie has about 12 things going at once all the time as well as stepping in to care for the young ones during appointments, the boys are each on their own basketball team and Dan has Saturday Speech camp, Sarah is picking up activities as she can-primarily beating up her father since she got her PICC line out. Wrestling has become a way of life!! She is due to get a Nikon D-80 camera from the Make-A-Wish Foundation very soon, so she's "self-studied" at probably a college level photography class for the last couple of months, and is interested in it as an art form, a potential business, and just for a lot of fun. She and I are at opposite poles with techie stuff. It's nice to have some people around who can get me out of my jams on the computer. Pat's hanging in there with all of us, still going to every appointment (except the IVC), and working long hours to keep up with his job, which he still likes a lot.
So---we're all still enjoying being alive, and there have been no crisis situations as of late!! Yahoo! Thanks, God!
Thank you all again, and many blessings to all of you!!
Jeanne
That following Thursday, the 8th, we went to the Children's Cancer Association's 3900 square foot "cabin" for a 4 day get away. Some wonderful friends came over on Friday, and we played pool, air hockey, games, ate good food, and kept saying "WOW" every time we went in another room and looked at the incredible art, beautiful decor, and provisions of every kind. (Things like a huge gas fireplace in the master bedroom, leather couches in the main room, wonderfully thought out kitchen area, etc. etc.) We took the boat onto the lake, roasted hot dogs on the private beach, and just spent time together. If anyone has a child with a life threatening illness, it's a great place to go. There are no doctors, nurses, needles, scans, appointments to keep, or toxic drugs there. It could have been a yurt and been a delight, but the CCA has done an incredible job of spoiling the folks who have to endure these treatments.
Next, on the 24th, the owner of Great Harvest Bread here in town spurred on by our friend Susan Heinz, put on an incredibly fun fundraiser for our family. We got to invite a few friends to work the bakery with us, and along with Travis, the owner, two of his young boys, and his awesome staff, we made bread and treats and got to work the counter all day. They sold out of all bread at 2:34 PM, and called folks to claim their reserved items, or they might run out the door. Every muffin and cheesestick was gone, and there were some lonely shelves at the end of the day. Susan has been working hard to arrange for a trip away for our family, and we were able to easily finish covering the final arrangements for this, plus put some into the Medical Account to cover more trips to OHSU and other appointments. Oh boy oh boy!! Thank you to all those who contributed, participated, and who have silently continued to do so over the last two plus years. You are incredibly faithful.
On February 27th, we went to OHSU for Sarah's scans. She was to do a PET, a CT scan and a chest x-ray. Evidently the PET and X-ray were done, but somehow the CT scan got lost in the shuffle. The doctor isn't sure why this didn't get done. This coming Monday we'll go up again and redo it. The preliminary tests look ok, but we still need the CT scan to determine if the mediastinal tumor mass has shrunk the required 70%, and the CT scan is the only one that accurately measures the exact size of the mass. Rats.
I am still off of chemo. We spoke with the insurance company, and they've ok'd a six month time frame for me to transfer to OHSU for my care. It's taken a long time to organize all this! Now Dr. Chui's office will call to tell us when we can either go up there for scans, or get them down here. It's been so great being off chemo. My body has done some serious detoxifying, and I've been reliving a lot of 24-36 hour chemo reactions as stuff flushes out. Very sore toenails, tender scalp, major nausea, bleeding gums--it's weird, because I was so intent on getting the cancer to go away that I tried to not pay too much attention to the side effects. Now as I go through each one I think "Oh yeah-I remember this!" At least my fingernails and the skin on my feet didn't fall off. After each detox "symptom" I feel a higher level of well-being. The plan as we spoke with the OHSU med. onc. at our last visit, was that if things were to remain stable I could decide whether to stay off of chemo a little longer. If the cancer has grown, then we'd need to decide what cocktail to try next. Still hoping for a miracle-this is the longest I've been off of chemo since I started this-the last of November was the last infusion. I'm still on IVC, so I'm not escaping needles and long appointments, but at least I feel good!!
The rest of the family is doing well. Nicole's still working M-F in Albany, Valerie has about 12 things going at once all the time as well as stepping in to care for the young ones during appointments, the boys are each on their own basketball team and Dan has Saturday Speech camp, Sarah is picking up activities as she can-primarily beating up her father since she got her PICC line out. Wrestling has become a way of life!! She is due to get a Nikon D-80 camera from the Make-A-Wish Foundation very soon, so she's "self-studied" at probably a college level photography class for the last couple of months, and is interested in it as an art form, a potential business, and just for a lot of fun. She and I are at opposite poles with techie stuff. It's nice to have some people around who can get me out of my jams on the computer. Pat's hanging in there with all of us, still going to every appointment (except the IVC), and working long hours to keep up with his job, which he still likes a lot.
So---we're all still enjoying being alive, and there have been no crisis situations as of late!! Yahoo! Thanks, God!
Thank you all again, and many blessings to all of you!!
Jeanne
Saturday, January 20, 2007
Sarah - one more to go!
Sarah had her last Portland chemotherapy treatment on January 18th. She has only one more to go, here in Corvallis, on January 25th, then she is DONE!
Due to the ice and snow that hit Oregon on Jan 16th, her original appointment had to be re-scheduled. Her Dad had the insensitivity to schedule it on Jan. 18th, her 14th birthday. But, we tried to make the best of it. She was able to take a friend along. The staff brought her a cake, and many of the nurses and doctors sang Happy Birthday to her. Then, we took her out for dinner on the way home. While we were gone, her 4H buddies (and their parents) decorated the house entryway and mailbox with streamers, glitter, balloons and bows, and also left a stack of cards. Lastly, her brothers and sisters decorated inside the house, so it was a nice homecoming.
I will let Jeanne give you a more extensive review of the past few weeks in another blog post later. In the meantime, thank you all again and again for everything!
Pat Hazleton
Due to the ice and snow that hit Oregon on Jan 16th, her original appointment had to be re-scheduled. Her Dad had the insensitivity to schedule it on Jan. 18th, her 14th birthday. But, we tried to make the best of it. She was able to take a friend along. The staff brought her a cake, and many of the nurses and doctors sang Happy Birthday to her. Then, we took her out for dinner on the way home. While we were gone, her 4H buddies (and their parents) decorated the house entryway and mailbox with streamers, glitter, balloons and bows, and also left a stack of cards. Lastly, her brothers and sisters decorated inside the house, so it was a nice homecoming.
I will let Jeanne give you a more extensive review of the past few weeks in another blog post later. In the meantime, thank you all again and again for everything!
Pat Hazleton
Friday, January 05, 2007
Change of plans
Jeanne's liver biopsy has been postponed, with no re-scheduled date as of yet.
Thank you all for your prayers, and we apologize to anyone if you came to the hospital looking for us. Also, please pray for clarity for direction in our future decisions.
Thank you,
Pat
Thank you all for your prayers, and we apologize to anyone if you came to the hospital looking for us. Also, please pray for clarity for direction in our future decisions.
Thank you,
Pat