Saturday, November 21, 2009
She is starting to feel nauseous a lot of the time, and says that her "guts feel squished"... especially on her right side where her liver is. When she coughs or sneezes or laughs or yawns, it hurts. It's like her diaphragm and lungs don't have quite enough room to expand.
She's still trying to figure out how to refill her digestive enzyme prescriptions without going to the poorhouse. At one point her insurance told her that she could get a generic prescription for $10...but when she went to the pharmacy, they told her that her prescription IS the generic brand. It costs $160. The name brand costs $240. To some people that might be pocket change, but not MaeLynn (or lots of other people, for that matter:)).
MaeLynn, of course, remains positive and fairly upbeat. She was able to go to an elementary school friends retreat a couple of weekends ago, a girl's night out to see the "New Moon" movie...and liked it! (Although she still refuses to read the books)
Her funny news for this week is that for Thanksgiving, she and her in-laws (none of whom want to be cooking and cleaning all day) are going to dinner at Angie's Restaurant in Logan. It's a fund raiser for the Child and Family Support Center at USU...so it's for a good cause. And she doesn't have to sweat all week thinking about all that WORK called "Thanksgiving". Hope you all have a good week. MaeLynn is thankful for all of you and your support. Until next time...
Wednesday, November 4, 2009
MaeLynn had a doctor's appointment last week and had some bloodwork done to see how her liver is functioning and to check the chromagranin A levels. She still doesn't have the results...but the appointment went well.
She discovered that she CAN drive! Apparently when she got her Fentanyl patch, the pharmacist told her that since it is an extreme narcotic, she would not be able to drive while on it. Or...she could drive, but if she ever got pulled over, she could get a DUI. BUT when she was talking to her doctor this last week, he said that she is perfectly fine driving while using the patch. YAY!!!
They also discovered something kind of strange. MaeLynn apparently had forgotten to put a new patch on one morning after she took off the old patch and had crazy symptoms of withdrawals all day...no surprise there. She didn't realize until that evening that she had forgotten to put the patch back on...so then she put the patch back on,remedied the problem, and has been fine ever since. What the doctor wanted to know was, "Didn't you have extreme gut pain to let you know that the patch wasn't on?" "Well, no," was MaeLynn's reply. Sooooo...what is going on with her insides if they didn't hurt that much without the pain killers?
Along with the blood work, they did a CAT scan....so we'll have to let you know the results of that when we find out.
Another YAY hooray item on the schedule is that some people in MaeLynn's ward have coordinated with friends to have Kendall and Ellie take dance lessons every Thursday night. It will kind of give MaeLynn a break, and get the girls out and about. They also worked out a day of preschool for the boys and Abby! So every Tuesday for a few hours in the morning, MaeLynn will be almost child-free! (Ellie doesn't leave for school until after the little ones get home....but still! One kid is so much simpler than four!!)
I don't know if I mentioned this before, but she also has a woman in her ward helping her with laundry, and another woman helping her clean once a week. People are so wonderful to help whenever and however they can. And of course, her wonderful parents and in-laws are a HUGE blessing. Last week Andrew was gone hunting for a few days and all kinds of family were there to help her out. And they survived Halloween! With the boys as policemen, Kendall as an Indian princess, Ellie as a fairy, and Abby as something-cute-I-can't-remember-what. (What kind of horse's mouth am I anyway??)
One last thing...MaeLynn is a little concerned about replenishing her digestive enzymes that she HAS to take. Apparently when she found out she had cancer, the doctors gave her a bunch of samples for free....and they've lasted her quite a while. She's gotten to the end of her supply, however, and her insurance doesn't cover the name-brand enzymes she's been using. It would be a $160 co-pay for a prescription. I can't remember how long they last....but she's really hoping the generic enzymes will work just as well. They are only a $10 co-pay. So pray for her. Like you're already doing, I'm sure. Finances are extremely tight, so if anyone can spare a bit, it would be really appreciated. I always hate asking people for money, but it's for a sweet family in need.
Sunday, October 4, 2009
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,
Friday, September 18, 2009
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
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
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
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
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.
Friday, June 26, 2009
- Deep cleaning
- Organization of closets, cupboards, and pantry
- New family pictures hung on the walls
- Curtains in the kitchen windows and kids bedrooms
- Front porch cleaned off (including the diaper bucket!)
- New couches
- New 'big boy' beds for the twins
- New comforters for all the kids' beds
- A new toilet in the upstairs bathroom that actually flushes!
- Fixed gate to the backyard and raingutters
- Ripped out bushes in front yard and planted flowers, brought in woodchips
- Weeded and planted a garden
- Washed and cleaned out the family car, had it serviced, filled it up with gas
- Etc., Etc., Etc.
MaeLynn was blown away by it all and wants to thank Nana's friends from the hospital, Dave, Karl, Chris, Logan 10th Ward youth, and the many many people she's not even aware of that helped with the project. As soon as we get our cameras/pictures coordinated, we'll post some of "the new" look!
Health-wise, MaeLynn is doing okay. She says the pain is minimal, as long as she eats "just right". This means eating tiny bits of food all day long. If she actually ate what would consist of a meal, she would feel much worse. Too much food at one time is really hard on her. She is also very exhausted all the time which makes it really hard to accomplish anything. She wonders if part of the exhaustion is just from the emotional stress of handling something of this magnitude.
Luckily, she has amazing friends and family who are more than willing to help out. Andy's sister takes the kids once a week, his aunt takes them another day. People have been bringing meals in a few times a week. The Relief Society in her ward sent around a sign-up sheet to see who would be willing to help and MaeLynn almost cried when she saw the list. Basically anyone who was in Relief Society that Sunday signed up. What a huge blessing to know there are so many people who can help.
Doctor-wise, Mae will be going to the Huntsman Center next Tuesday (June 30th) to get second opinions from an oncologist and a surgical oncologist. When she first found out she had this rare type of cancer, the doctors told her that her body would probably not respond to typical chemo, but then the oncologist in Logan made it sound like they SHOULD do chemo to address all the areas where the cancer is/might be. The doctor in Logan also consulted other specialists of neuroendocrine cancer and they agreed that this is what should happen.
The only problem is, there are no sure answers, and this makes it so hard to make a decision. Will the chemo prolong the pain? Quality is more important than quantity to MaeLynn. With some types of cancer, they have on-going clinical trials that people can be part of. But this cancer is so rare that there aren't any clinical trials happening right now.
There was one treatment that Andy and Mae heard of that seemed plausible...called octreotide. It included an injection in the muscle of very high doses of a synthetic version of a hormone your body makes. The side effects didn't sound as awful as chemo, but then MaeLynn found out that her body's seratonin production would be inhibited (which she already struggles with), and absorption of medications and food would be stopped. So basically, she'd have constant diarrhea and crippling depression. Not worth it.
MaeLynn has had several priesthood blessings and she really feels at peace with whatever may come. She knows that the end of her life will not be the end of her family.
On a brighter and final note, she and her family have all kinds of trips and reunions planned for the next few weeks in Logan Canyon, Park City, Salt Lake, and Cottonwood Canyon in Wyoming. After July 16th, we'll start organizing more help for Mae.
She says THANK YOU again to everyone's help and prayers, and really appreciates everyone's support. Until next time....
Tuesday, June 23, 2009
I talked to her last night, and she's still trying to decide exactly what to do about/when to start treatment. She's open to any homeopathic suggestions if anyone has any.
Friends and family in Logan (or anyone who'd like to come) are invited to a meeting at MaeLynn's house this Thursday night, June 25th at 8:00 p.m. to discuss how and when people can help her out. Bring your brainstorms, notebooks, and a treat if you'd like.
As soon as I can, I'll try to post some pictures of her vacation. Till next time......
Sunday, June 14, 2009
MaeLynn had more tests done on Monday the 8th in Logan. They were looking for cancer in any other parts of her body, i.e. brain, lungs, other soft tissue.
She then talked to an oncologist on Tuesday to review the tests. Fortunately, they did not find anything except for some small spots on her lungs. Apparently it's too risky to do a biopsy on her lungs, so they are hoping that if it IS cancer, it will be treated with whatever they use to treat the cancer in her pancreas and/or liver.
Treatment won't start for a couple of weeks because, HOORAY! MaeLynn's on vacation! An amazingly generous friend of Andy's aunt loaned them a condo in San Diego for a week. So MaeLynn, Andy, the kids, Nanna and Papa, and Jamie Harris Norton and her kids all drove down. They left on Wednesday the 10th, and won't be back until Friday the 19th. Then on Saturday the 20th, MaeLynn and Andy are going to spend a couple of nights/days in Salt Lake for their 8th Anniversary (which is June 22nd), complements of Pam and Lee.
The doctor says he thinks the vacation is a great idea, and that they'll just start treatment when MaeLynn returns home. If my facts are right, MaeLynn will be taking oral medication along with intravenous medication (which I'm assuming means chemo, but I'm not sure, and haven't had a chance to ask MaeLynn)
MaeLynn seems very upbeat about it all. I don't know if I said this last time, but it all feels very surreal at this point.
Thank you to everyone for your prayers and fasting last fast Sunday. Thanks also to everyone's notes and phone calls. If you're looking for a way to help out, MaeLynn said that Grandpa Harris is arranging a fund that anyone can donate to. I'll keep you posted on that. She could also use help at home, I'm sure, in a few weeks. I'll keep you posted about that also.
Keep praying and don't lose faith and hope. Mosiah 4:9---Believe in God; believe that he is, and that he created all things, both in heaven and in earth; believe that he has all wisdom, and all power, both in heaven and in earth; believe that man doth not comprehend all the things which the Lord can comprehend.
Friday, June 5, 2009
So here goes.
If you're reading this blog, you already know that MaeLynn found out this last Wednesday that she is in stage 4 of low-grade neuroendocrine cancer. They have found it in her pancreas and liver, and will be doing more tests on Monday, June 15th, 2009 to see if it has spread to other areas.
MaeLynn is doing all right. She has been having abdominal and back pains since October, and since she found out this news, they don't seem to be any better or worse...just still there, of course.
She will be talking to an oncologist on Tuesday to figure out a plan of attack, but until then, she doesn't know exactly what will be happening.
The doctors say that statisitically people with this type of cancer (which is actually quite rare) live 3-5 years. We wish it was decades, but it is what it is.
She has five kids now, the oldest one will turn seven in July. The youngest will be two in August. When Andy took Ellie, the five-year-old aside to talk to her about MaeLynn's condition, her first question was, "Where will we bury her?" (MaeLynn said she could just picture Ellie thinking about the dogs buried in the backyard or out on the farm) So Andy took her to the cemetery to show her, and she looked worried. "Are we going to have to dig the hole?" No, "Oh No!" or tears or anything...just hopes that she wasn't going to have to do all the work.
Later when they were talking about how people get their hair and make-up done and wear their temple clothes when they die, Ellie asked, "Doesn't all your hair fall out when you die?" And Andy said, "No...in fact it keeps growing after you die," thinking 'just a little'. But Ellie thought for a minute and asked, "So when we're wez-uh-wected will we all have weally long hair?"
It gave Andy and Mae a good laugh, and hopefully the funny moments will make the unbearable ones more bearable.
More to come next week!