question, for you blog savy people:
Is there a way to search for a specific blog without having the address? mae84341@yahoo.com
Sunday, October 4, 2009
MaeLynn again
Surprise! It's MaeLynn again. Miracles really do never cease. First, I'd better clear something up. The Fentanyl pain patch I am on has to be worn all the time. I wish I could take it off and on as needed, but it is extremely addictive and is only prescribed when other opioid pain meds don't cut it. I forgot to replace the patch one night last week and was surprised to realize that I hadn't experienced pain all day (without the usual dose). Being the optimist (and sometimes dummy) I am, I decided that perhaps the pain had subsided, and didn't put a new patch on. A few hours later (just as I was crawling into bed) I experienced the strangest sensation. It hit me without warning. I wanted to crawl out of my skin and run for miles. I felt antsy and agitated and the lights were too bright. I started itching like a dog with fleas. It was awful! These, my friends, are symptoms of withdrawal (My hubby, the know-it-all, filled me in). I don't ever want to feel that again, and am happy to take the teasing that comes when I zone out. The good news is that I actually tolerate the meds pretty well now. You should have seen me the first week! The bad news is that now I can't drive. If I were to get pulled over, I would get a DUI, and the risk is just not worth it. It's tough being dependent upon people to get from point A to point B (especially when we need 6 seat belts). I don't like winter (never have), and worry that the cabin fever is going to get pretty extreme this year.
The fentanyl used during labor is a liquid form, given through the IV. I actually had it (because I can't have epidurals, thank you very much) while in labor with all my kids. Works like a charm for about 45 min, does not cause withdrawals.
The pain that prompted me to see the Doctor again (about a month ago now) was in my kidneys. I've never had kidney pain before. Dr. BenJacob said that the lymph nodes over my kidney's are probably inflamed now and infected. That can cause extreme pain. There are lymph nodes associated with all major organs. Sounds fun....I am so grateful for meds!
I'm not making Kombucha any more. It tastes yeasty to me, and kind of reminds me of vinegary beer. Yuck! Andrew seems to have gotten his fill. Does anyone want a "magic mushroom?" I have finally found a health"potion" that I like. It's called Seven and is made by Exfuze. It contains extracts from seven different super fruits found all over the world. You may have heard of a few of them: Noni, Acai, or Seabuckthorn? I must be a real wimp, because technically, I'm dying, and I still won't drink some of the teas that people have suggested. If a dying person won't drink it, maybe its REALLY bad! Seven is actually pretty tasty. I dare say I could probably drink 8 oz. a day. A person is only supposed to drink 1 oz. No, this is not an advertisement. :)
Another thing I have started doing is juicing. I got a fabulous Jack LaLanne juicer (supposed to be one of the best) on sale and have significantly upped my fruit and veggie intake. I find that I just don't have the patience to eat a whole plate of fruit. It's overwhelming. However, I'll happily drink the plate of healthy stuff when it's been reduced to a glass of juice. I'm now a big fan of juicing.
In case you were wondering, I didn't do a bunch of blood work or tests at my last Dr. appointment. We decided that it would be rather silly to invest the time and mental energy and money because no matter what the tests say, I'm not going to change my decision on formal treatment. I am a big fan of "alternative" medicine though, and am willing to try just about anything outside of a hospital. I don't know why I'm such a fan. I've just been curious my whole life. Seems like there is so much good out there that our western society doesn't take part in. I heard that a lady in the neighborhood practices raeki (spelling?). It's a type of ancient energy work. I think I'll go give her a call.
I send you all my love,
MaeLynn
The fentanyl used during labor is a liquid form, given through the IV. I actually had it (because I can't have epidurals, thank you very much) while in labor with all my kids. Works like a charm for about 45 min, does not cause withdrawals.
The pain that prompted me to see the Doctor again (about a month ago now) was in my kidneys. I've never had kidney pain before. Dr. BenJacob said that the lymph nodes over my kidney's are probably inflamed now and infected. That can cause extreme pain. There are lymph nodes associated with all major organs. Sounds fun....I am so grateful for meds!
I'm not making Kombucha any more. It tastes yeasty to me, and kind of reminds me of vinegary beer. Yuck! Andrew seems to have gotten his fill. Does anyone want a "magic mushroom?" I have finally found a health"potion" that I like. It's called Seven and is made by Exfuze. It contains extracts from seven different super fruits found all over the world. You may have heard of a few of them: Noni, Acai, or Seabuckthorn? I must be a real wimp, because technically, I'm dying, and I still won't drink some of the teas that people have suggested. If a dying person won't drink it, maybe its REALLY bad! Seven is actually pretty tasty. I dare say I could probably drink 8 oz. a day. A person is only supposed to drink 1 oz. No, this is not an advertisement. :)
Another thing I have started doing is juicing. I got a fabulous Jack LaLanne juicer (supposed to be one of the best) on sale and have significantly upped my fruit and veggie intake. I find that I just don't have the patience to eat a whole plate of fruit. It's overwhelming. However, I'll happily drink the plate of healthy stuff when it's been reduced to a glass of juice. I'm now a big fan of juicing.
In case you were wondering, I didn't do a bunch of blood work or tests at my last Dr. appointment. We decided that it would be rather silly to invest the time and mental energy and money because no matter what the tests say, I'm not going to change my decision on formal treatment. I am a big fan of "alternative" medicine though, and am willing to try just about anything outside of a hospital. I don't know why I'm such a fan. I've just been curious my whole life. Seems like there is so much good out there that our western society doesn't take part in. I heard that a lady in the neighborhood practices raeki (spelling?). It's a type of ancient energy work. I think I'll go give her a call.
I send you all my love,
MaeLynn
Friday, September 18, 2009
Why Not Try Something Crazy....so crazy....it just might work...
So I finally talked to MaeLynn about how her appointment went with the internist, and there really isn't much more to tell than what I've already told :). Her chromagranin A levels are the indicator of growth of the cancer, so if it's higher this month than it was before, that means there is more cancer than there was before.
She remains positive (and slightly drugged...haha). Apparently the phentanol patch helps so much that she keeps it on all the time. Anything to help the pain!
She has come across a couple of natural approaches to suspending the growth of the cancer. One is called an alkaline diet which changes the pH in the body. Apparently cancer can not grow in an extremely alkaline environment, so....make the body alkaline=stop the growth. Some things that are really good for her to eat are wheatgrass (and other types of grasses), dandelions (haven't tried that one, yet), cucumbers, and jicama. There are only a few things that she should totally steer clear of such as beef, pork, tuna, and artificial sweeteners. Just the four things that we LOVE! I'm not sure how long she's been trying to follow this diet, so I'm not sure exactly how it's going for her...but hopefully good!
Another thing she's been trying is brewing her own mushroom tea called Kombucha. I would try to explain it, but you'd get a lot more correct information if you check it out on Wikipedia. It's really interesting. People claim that it has natural healing properties....so why not? What does she have to lose? I guess Andy likes it, anyway.
She's getting along pretty well right now. As I type this, she is in Wyoming at an adults only retreat with Andy's family. Her sweet mother is watching those five crazy kids for her (crazy---but cute, I should say). Hopefully the weekend goes well for everyone. It's funny. Some people have mentioned how if they knew they were dying, they would treasure every moment with their children. BUT, watching MaeLynn and her kids...I've come to realize that although you DO want to treasure every moment, kids are still kids. A tired mom is still a tired mom. There are still moments of spanks and swearing (haha) and throwing-up-of-the-hands. Life is still life. It's busy, it's wonderful, it's frustrating, it's good. We still need adult retreats every once in awhile.
Oh one more thing for tonight...apparently the Zions' donation bank account is closed now. However, there is a Wells Fargo donation account and a Lewiston State Bank donation account set up for the Harris family. I'm pretty sure it's under MaeLynn's name. So if you ever have a bit extra to send their way they'd greatly appreciate it. They also want to thank everyone for all their support in whatever way it's given. This is quite the experience.
She remains positive (and slightly drugged...haha). Apparently the phentanol patch helps so much that she keeps it on all the time. Anything to help the pain!
She has come across a couple of natural approaches to suspending the growth of the cancer. One is called an alkaline diet which changes the pH in the body. Apparently cancer can not grow in an extremely alkaline environment, so....make the body alkaline=stop the growth. Some things that are really good for her to eat are wheatgrass (and other types of grasses), dandelions (haven't tried that one, yet), cucumbers, and jicama. There are only a few things that she should totally steer clear of such as beef, pork, tuna, and artificial sweeteners. Just the four things that we LOVE! I'm not sure how long she's been trying to follow this diet, so I'm not sure exactly how it's going for her...but hopefully good!
Another thing she's been trying is brewing her own mushroom tea called Kombucha. I would try to explain it, but you'd get a lot more correct information if you check it out on Wikipedia. It's really interesting. People claim that it has natural healing properties....so why not? What does she have to lose? I guess Andy likes it, anyway.
She's getting along pretty well right now. As I type this, she is in Wyoming at an adults only retreat with Andy's family. Her sweet mother is watching those five crazy kids for her (crazy---but cute, I should say). Hopefully the weekend goes well for everyone. It's funny. Some people have mentioned how if they knew they were dying, they would treasure every moment with their children. BUT, watching MaeLynn and her kids...I've come to realize that although you DO want to treasure every moment, kids are still kids. A tired mom is still a tired mom. There are still moments of spanks and swearing (haha) and throwing-up-of-the-hands. Life is still life. It's busy, it's wonderful, it's frustrating, it's good. We still need adult retreats every once in awhile.
Oh one more thing for tonight...apparently the Zions' donation bank account is closed now. However, there is a Wells Fargo donation account and a Lewiston State Bank donation account set up for the Harris family. I'm pretty sure it's under MaeLynn's name. So if you ever have a bit extra to send their way they'd greatly appreciate it. They also want to thank everyone for all their support in whatever way it's given. This is quite the experience.
Wednesday, September 9, 2009
A Pain in the *&($#*(&@# along with other areas
Sorry it's been so long since I've posted anything. We always hope no news is good news, right?
On that note, things are going alright for MaeLynn. Not perfect, but alright. A couple of weeks ago she got to go on a weekend getaway with some old college roommates. It was SO fun and relaxing. However, while she was there, she was having some pretty extreme pains in her 'gut'. So after the long weekend, she called her oncologist, and got in to see him. He was able to prescribe a phentanol patch for her. It is a small transparent patch about two inches long and one inch wide that releases the drug phentanolthat she can put anywhere on her upper body . It's used for chronic pain and interestingly enough, women in labor.
The patch has helped a lot, although when used in combination with her everyday Lortab, she says it makes her VERY tired. When I saw her a few days after she got the patch, she could barely keep her eyes open while we talked. But the PAIN is taken care of...and that's good. She apparently doesn't need the patch all the time, either. She can wear it for three days, and then take a break until she feels like she needs it again.
While she was at the oncologist, they also drew some blood to see how her hormone levels are doing. I guess that's a good indicator of what the cancer is doing without having to do CT scans etc.
For a little background, everyone has a hormone called chromagranin A in their bodies. A normal person has about 50 parts per million (ppm) of this hormone in their blood. When MaeLynn found out she had cancer 2 1/2 months ago, she had 23,000 ppm of this hormone in her blood. When she got the results back this last week from her blood test, the chromagranin A was at 32,000 ppm. She didn't know exactly what that meant, but it doesn't sound great. She had an appointment with her internist last Friday to talk about the results of the blood test, but I haven't had a chance to find out how that went.
I'll let you all know more when I know more. Hope everyone is well.
On that note, things are going alright for MaeLynn. Not perfect, but alright. A couple of weeks ago she got to go on a weekend getaway with some old college roommates. It was SO fun and relaxing. However, while she was there, she was having some pretty extreme pains in her 'gut'. So after the long weekend, she called her oncologist, and got in to see him. He was able to prescribe a phentanol patch for her. It is a small transparent patch about two inches long and one inch wide that releases the drug phentanolthat she can put anywhere on her upper body . It's used for chronic pain and interestingly enough, women in labor.
The patch has helped a lot, although when used in combination with her everyday Lortab, she says it makes her VERY tired. When I saw her a few days after she got the patch, she could barely keep her eyes open while we talked. But the PAIN is taken care of...and that's good. She apparently doesn't need the patch all the time, either. She can wear it for three days, and then take a break until she feels like she needs it again.
While she was at the oncologist, they also drew some blood to see how her hormone levels are doing. I guess that's a good indicator of what the cancer is doing without having to do CT scans etc.
For a little background, everyone has a hormone called chromagranin A in their bodies. A normal person has about 50 parts per million (ppm) of this hormone in their blood. When MaeLynn found out she had cancer 2 1/2 months ago, she had 23,000 ppm of this hormone in her blood. When she got the results back this last week from her blood test, the chromagranin A was at 32,000 ppm. She didn't know exactly what that meant, but it doesn't sound great. She had an appointment with her internist last Friday to talk about the results of the blood test, but I haven't had a chance to find out how that went.
I'll let you all know more when I know more. Hope everyone is well.
Monday, August 10, 2009
From MaeLynn
Hello all! This is MaeLynn. I thought that maybe it's time I say something on here. First, I'm so grateful to Laura for having the ambition to create a blog for me in the first place. Those of you who know me well know that I'm a tech/electronics/computer idiot. Actually, I just don't care about tech/electronics/computers. There are just so many other things I'd rather spend my time on--or have to spend my time on. I just get way too frustrated long before I learn how to do anything. I just want to get things done and don't enjoy trying to figure things (like posting pictures or creating a blog) out on my own. My kids are screwed because Andrew doesn't care about it either. Anywho, thank you Laura!
I feel bad that there are still people who don't know that I have terminal cancer. It's not an easy thing to just slip into conversation. I told many close friends and family on the phone. It's easier than face to face because often the person I am talking to will not respond (for an uncomfortable amount of time) or will burst into tears. I have found myself saying sorry--sorry to be the deliverer of bad news! I debated for two months before finally putting a note on my face book page about this blog. Finding out through the computer seems so cold and impersonal. Plus, I don't want to say, "Look at me, look at me, feel bad for me." That's not what I am trying to do. It's just that in the middle of the night I still think of people I haven't told. I'd like that to stop.
So, the update is that nothing has changed. I feel fine. Of course, I get tired easier, but that is my biggest complaint. I take a nap every afternoon when the twins and Abby do, and Andrew basically takes over every night when he gets home from work. I have been extremely blessed. The doctor gave me some digestive enzyme pills that I take every time I eat, and that has actually eliminated the pain that caused me to go to the doctor in the first place. The tumors in my liver and pancreas are secreting a hormone called Chromogranin A. The doctors don't even really know what Chromogranin A does (because people only have about 50 parts per million), but apparently large doses cause hot flashes. Some days are worse than others. I don't know why. I have an appointment with my internist on Aug. 25th. I am sure we will do blood work then and see where we are. I don't have any future appointments with the oncologist scheduled. He was fabulous, but may not understand why a 29-year-old has chosen not to pursue treatment.
I just have to say that I can testify that our Lord works in mysterious ways. So many good things have come from my diagnosis. Sounds crazy, I know. I'd like to share a few of them. Being terminally ill has caused me to:
* have conversations with loved ones that I had been avoiding for years
* develop a better relationship with my Savior and be more faithful in doing things I have always felt were important
* be more forgiving and accepting of Andrew's weaknesses
* be more patient with the kids. They really are sweet. The naughty things they do usually stem from curiousity.
* re-evaluate my priorities. A clean house is really not important.
It has also:
* served (as bad things usually do) as a reminder to other people that life is fragile. We all act like we have tons of tomorrows, we really don't.
* caused people to serve. Sometimes it's hard to be the recipient of service, but for me it's been fabulous! I love having people around me. Perhaps the people who are serving need an opportunity or motivator to serve more than I need my laundry done. It's silly that we don't just serve each other because we want to. Why do people have to "need" service before we do anything to help? Anyway, four months ago I was struggling with the fact that I felt alone on a daily basis. I was overwhelmed with my responsibilities, and continually thought, "How is it possible that I live on a planet with six plus billion people and feel so abandoned?" Well, strange thing happened---I got cancer and now there are people around me all the time!
I have learned so many things in the last two months. I am excited to see what else I learn along the way. Love you all, MaeLynn
I feel bad that there are still people who don't know that I have terminal cancer. It's not an easy thing to just slip into conversation. I told many close friends and family on the phone. It's easier than face to face because often the person I am talking to will not respond (for an uncomfortable amount of time) or will burst into tears. I have found myself saying sorry--sorry to be the deliverer of bad news! I debated for two months before finally putting a note on my face book page about this blog. Finding out through the computer seems so cold and impersonal. Plus, I don't want to say, "Look at me, look at me, feel bad for me." That's not what I am trying to do. It's just that in the middle of the night I still think of people I haven't told. I'd like that to stop.
So, the update is that nothing has changed. I feel fine. Of course, I get tired easier, but that is my biggest complaint. I take a nap every afternoon when the twins and Abby do, and Andrew basically takes over every night when he gets home from work. I have been extremely blessed. The doctor gave me some digestive enzyme pills that I take every time I eat, and that has actually eliminated the pain that caused me to go to the doctor in the first place. The tumors in my liver and pancreas are secreting a hormone called Chromogranin A. The doctors don't even really know what Chromogranin A does (because people only have about 50 parts per million), but apparently large doses cause hot flashes. Some days are worse than others. I don't know why. I have an appointment with my internist on Aug. 25th. I am sure we will do blood work then and see where we are. I don't have any future appointments with the oncologist scheduled. He was fabulous, but may not understand why a 29-year-old has chosen not to pursue treatment.
I just have to say that I can testify that our Lord works in mysterious ways. So many good things have come from my diagnosis. Sounds crazy, I know. I'd like to share a few of them. Being terminally ill has caused me to:
* have conversations with loved ones that I had been avoiding for years
* develop a better relationship with my Savior and be more faithful in doing things I have always felt were important
* be more forgiving and accepting of Andrew's weaknesses
* be more patient with the kids. They really are sweet. The naughty things they do usually stem from curiousity.
* re-evaluate my priorities. A clean house is really not important.
It has also:
* served (as bad things usually do) as a reminder to other people that life is fragile. We all act like we have tons of tomorrows, we really don't.
* caused people to serve. Sometimes it's hard to be the recipient of service, but for me it's been fabulous! I love having people around me. Perhaps the people who are serving need an opportunity or motivator to serve more than I need my laundry done. It's silly that we don't just serve each other because we want to. Why do people have to "need" service before we do anything to help? Anyway, four months ago I was struggling with the fact that I felt alone on a daily basis. I was overwhelmed with my responsibilities, and continually thought, "How is it possible that I live on a planet with six plus billion people and feel so abandoned?" Well, strange thing happened---I got cancer and now there are people around me all the time!
I have learned so many things in the last two months. I am excited to see what else I learn along the way. Love you all, MaeLynn
Monday, July 20, 2009
Big Decision
Tonight MaeLynn told me that she had decided what to do about her cancer. After much contemplation, soul searching, and talking things over with Andrew, MaeLynn has decided not to do anything.
She has had the hardest time trying to decide WHAT to do, and when she finally decided not to do anything, she feels totally at peace. Whatever may come may come, but she is going to make the most of whatever time she has left with us.
Maybe the miracle will be that her body will be healthier longer than it should be under the circumstances. She's already doing better than lots of people in stage 4 of cancer. She knows that a lot of people will think she's crazy, and she's fine with that. :)
Other than that, I don't have much news to report. Although...if anyone would like to donate to "the cause"...which is now just trying to help Andy and Mae wade through previous doctors' bills and life in general, Andy's Grandpa Harris has set up a donation account through Zion's Bank in Logan under MaeLynn's name. You can go in to deposit money, or send checks...but I'm under the impression that you can not do electronic transfers. More info on that later. You could also send a check straight to MaeLynn at:
784 North 300 East
Logan, UT 84321
They appreciate all the prayers and help from everyone.
She has had the hardest time trying to decide WHAT to do, and when she finally decided not to do anything, she feels totally at peace. Whatever may come may come, but she is going to make the most of whatever time she has left with us.
Maybe the miracle will be that her body will be healthier longer than it should be under the circumstances. She's already doing better than lots of people in stage 4 of cancer. She knows that a lot of people will think she's crazy, and she's fine with that. :)
Other than that, I don't have much news to report. Although...if anyone would like to donate to "the cause"...which is now just trying to help Andy and Mae wade through previous doctors' bills and life in general, Andy's Grandpa Harris has set up a donation account through Zion's Bank in Logan under MaeLynn's name. You can go in to deposit money, or send checks...but I'm under the impression that you can not do electronic transfers. More info on that later. You could also send a check straight to MaeLynn at:
784 North 300 East
Logan, UT 84321
They appreciate all the prayers and help from everyone.
Sunday, July 5, 2009
Tuesday at the Huntsman Cancer Institute
I haven't had a chance to talk to MaeLynn much about what went on last Tuesday. I thought her mother summed it up well in an e-mail, though....so I'm just going to post that for now. Hope she doesn't mind.
Hello Everyone,
It's really quiet around our house this morning. MaeLynn's family left last night after staying with us for a few days. It started when they came down last Fri. evening so they would be here in time to be at the Oquirrh Temple open house early Sat. morning. Kendall, especially, was excited to be able to go in to a temple. It is a beautiful, small temple...much like the the others... compact and simple.
Saturday we also celebrated the twins' 3rd birthday. It's hard to believe time has gone by so fast.
Yesterday MaeLynn had appointments at the Huntsman Center. She, Andrew, and Jerry were up there nearly all day. The doctors there said that at least 50% of her liver was functioning. People can survive with a liver functioning at 20%. He would recommend the intravenous treatment which would kill the exisiting cancer cells and follow it up with chemo. Their MO at the Huntsman is for the doctors to examine the patient, meet together in discussion, and then move forward. They will be meeting next Tues. and then contact MaeLynn with their recommendations. So we will wait again, now, until next Tues.
Hope all is going well. Thank you for your faith and prayers.
Love,
Marie
Hello Everyone,
It's really quiet around our house this morning. MaeLynn's family left last night after staying with us for a few days. It started when they came down last Fri. evening so they would be here in time to be at the Oquirrh Temple open house early Sat. morning. Kendall, especially, was excited to be able to go in to a temple. It is a beautiful, small temple...much like the the others... compact and simple.
Saturday we also celebrated the twins' 3rd birthday. It's hard to believe time has gone by so fast.
Yesterday MaeLynn had appointments at the Huntsman Center. She, Andrew, and Jerry were up there nearly all day. The doctors there said that at least 50% of her liver was functioning. People can survive with a liver functioning at 20%. He would recommend the intravenous treatment which would kill the exisiting cancer cells and follow it up with chemo. Their MO at the Huntsman is for the doctors to examine the patient, meet together in discussion, and then move forward. They will be meeting next Tues. and then contact MaeLynn with their recommendations. So we will wait again, now, until next Tues.
Hope all is going well. Thank you for your faith and prayers.
Love,
Marie
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