Medical Update

I've been asked several questions and thought I should probably update this with my current medical situation. I met with my Oncologist last week and confirmed finally that I will not be taking chemo. I can always change my mind but I won't. Because of that decision I also met with Hospice last week and will be meeting with my Hospice nurse in the next couple days to discuss the care I currently need. The nurse that meet with us was excellent and explained to us how when people first hear the word Hospice, people usually jump to thinking they have a week to live, because that's when they got called in the past. But Hospice is really Comfort Care, and the sooner you start after your diagnosis, the better chance they have to comfort your. That can be through medications, massages, hospital beds, medial equipments needed to move around, nurse weekly to your house, etc... The purpose is to  provide comfort care, to the patient, so they can have the quality of life they desire as they leave this world.  Once I start Hospice, hospitals visits

Currently I try to accomplish one activity a day because that's about all I can do. Usually about an hour in length. One activity could be, attending Dallin's cross country race, visiting with friends if it's a visitors day, work on finishing kids scrapbooks etc... It takes a lot of medication to help me do these tasks but hopefully the hospice nurse will help me find a good combination that will work better for me. This minds me of the Brian Regan joke about visiting the ER and saying "8".  (I shared the link below.) I kind feel like the end of this joke. 

I've noticed a lot of change just in the last week. More sleepy (medications add to this), more pain (night time is usually my worst time for pain, so I don't attend things at night), nauseous (this is just constant now, not terrible but always there), decrease in food intake (nothing sounds good because I'm always nauseous), and today for the first time I had a hard time having conversations. I know what I want to say but that's not the words coming out of my mouth. That was pretty frustrating. I'm having a hard time just writing these couple paragraphs. It's taken me an hour to write just this far.  It keeps showing me errors and I don't see it until I read it out loud and then I can't remember how to spell the world, so I ask "siri" just so I can spell it right. When I stand up or lay down I get a big rush of pain in my brain even on pain meds so I don't like change standing up or down.

My best time is usually in the mornings between 9-12 but not every day. As Shad says, "It's a new day" but... Every day is different and there's no explanation why. So, day by day is where we're at. I can't tell you what I'll eat an hour from now just because it's always changing. Same with ped meds. I always take the max amount I can take, but I'm still working mostly with over the counter pain meds. I hate how pain meds make me feel!!! So... enough about me.  Enjoy this funny youtube clip. Laughing, still the best medicine!

Peace I Give Unto You

I had the news on this morning and an interview was taking place with a famous country singer who I really enjoy. So I sat in front of the television to listen to what they were saying. The kids had just gotten on the bus and I was picking up the morning mess. A beautiful lady that has one child and just announced that she was having another and they were asking her questions around this topic. From everything I've seen in the past, she's a down to earth, religious, family oriented person. One thing that came out in the interview was that she had had three miscarriages before this pregnancy, and she had struggled with that. I totally understood this, as I've had miscarriages in the past and the grieving that comes with loosing a child when no one even knows that you were pregnant to begin with, is hard. It's hard to grieve alone and put a smile on your face in front of your friends.

Anyways, she was saying how this one night she thought she was having her fourth miscarriage. Her husband was gone, it was night time, and she went to lay by her son and she prayed like she had never prayed before. Pleading and sobbing with God, that she realized how blessed she was but she couldn't understand why he would keep letting her get pregnant but loose the baby. She said, she never had gotten angry but that night she did get angry. She said, "just shut the door or let me have a kid." She said, for the first time she felt like she had told God how she felt and that she feels like were supposed to do that. On Monday she went to the doctor and found out everything with the baby was fine and she felt like God had heard her. Not that he hadn't in the past but He heard her.

This got me thinking, and I'm assuming she didn't mean it this way; So does God only answer our prayers when we get what we prayed for? Does He only hear us when He answers with what we asked for? This is where Faith, Trust, and Peace come in.

3 Nephi 18:20

And whatsoever ye shall ask the Father in my name, which is right, believing that ye shall receive, behold it shall be given unto you.

John 14:26-27

But the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

I shared this a couple weeks ago at Stake Conference. The first time I was diagnosed with cancer in 2002, I was alone in the doctors office when he told me I had cancer. I just laughed; I'm sure I was shocked. I couldn't believe what he was saying. I didn't even know what to ask. I had just had a baby 6 weeks earlier. I had four little kids at home. My oldest had just started Kindergarten. He gave me the run down for what would be happening next, told me he was sorry and sent me home. It wasn't until I was driving past CBC that it hit me. I started sobbing. All these questions and worries flooded my mind. I had an open communication with God as I drove home that day. I was driving home on 395 when I hit the intersection where Booker Auction is located and these words were whispered to heart, "You know who you are and you know where you're going." I have heard those words many times, but never had they brought as much peace to me as they did at that time. Like the scripture above states, "my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." There was a wave of peace that came over me that no one else, not my mom or dad, sister, best friend, even my husband, could have helped me feel in that moment.  Heavenly Father had heard me and I knew it because of the peace I felt through the Holy Ghost. I was no longer afraid of what was to come.

Since that time, I've been diagnosed several times with cancer. I have Faith and Trust in Him and with that Trust and Faith, I have felt His Peace over and over again in my life. He has blessed me with a loving, faithful and supportive husband, kids that try and love each other. We are far from the perfect family but as long as we keep trying and moving forward, isn't that all that he asks? I'm grateful for a family who tries. 

https://youtu.be/DwY2EpAgW-M

The link above is my cousin Dallin McAllister singing the hymn: Where Can I Turn For Peace

What Do I Say to Someone Who Is Dying?

I have had cancer multiple times and honestly, the diagnosis is never easy. Cancer is a scary word. It doesn't just affect the patient. Many people are concerned and want to help. I've found that many are uncomfortable and unsure of what they can do. Based on my experience, here are some things to consider when wondering how best to serve a terminally-ill person.

Find out what the family really needs before you inundate them with lasagna and cookies. A life-threatening disease takes time to deal with, so give the person and his or her family a chance to adjust. It's shocking news to get a terminal diagnosis; but just because the doctor gave me this news, didn't mean I was a different person then who just walked through the front door. For me, I really couldn't believe that I was that sick. Wait, did you just say your assigning me a hospice nurse? Isn't that what happens right before you die? I just walked in here and ate a burger at Wendy's before that. Took the kids swimming and cleaned the house that morning. It's surreal for everyone. Didn't I just see her at church? She seemed fine. I just talked to her in the halls at school. Is this for real? Trust me, I know. I've said those same things. Perhaps they won't need assistance at first, but it will come. Routines at home need time to adjust.

Check with the family to see what kind of service will be most helpful. It's ok if they don't know at first. Again, it takes time to adjust. After my appointment, I didn't just go home and lay in bed because I was told that I was sick. Life goes on and you want everything to be as normal as possible until change is needed. At least that's how I've felt.  Also know, that we love all of you and can't possibly reply to everyone's concerns, texts, emails, etc... fast enough. If you don't get a reply right back or at all, it's probably because I'm asleep or most likely, my phone is dead because I forgot to charge it the night before.

I also love visitors, I've just realized my body can't handle long visits or lots of visits in one day. Hence the reason for a visitor sign-up. Some people don't like that, you are more then welcome to stop by but I may not answer or if I do may only have a short time to visit.  Know that I'm not being rude, I've done this before and know how important it is to take care of myself or I can get run down really fast. I appreciate when people are willing to give of themselves - to truly visit with me and give me hugs.

When you visit, be yourself and treat me normally. I'm still the same person I was before my diagnosis. I still want to know what's happening and feel like I'm a part of things. I want to share in my friends and family's feelings and concerns as I always have. Laughter really is good medicine. Don't be afraid to share it.

There are lots of things you can do, just treat the person as normal as possible, and tailor your service to meet the person's needs. Things are slowly changing at my house. I sleep more because I'm more tired. Pain progressively gets worse. Sitting and laying down are actually the worst for me pain wise. Come to visit with your tennis shoes. I may ask you to go on a walk with me. Everything hurts but that's my new normal. Don't be afraid if I wince a couple times when I move, that's just where I'm at.

I'm just putting this out there because it helps all of us. There are only 5 people in this house, so if you are so kind to bring something over that you think my family will enjoy smaller is better. Meaning, we don't need a 9x13 of whatever goodness you make. An 8x8 is perfect! I am not a sweets person right now. My husband never thought he'd hear me say that EVER!! I've had some nausea this last week, not sure why, but sweets are the last thing that sound good to me right now, Shad really doesn't eat them and Dallin won't during running season. So just a small something is fantastic. Salty things sound good. Soups, breads, salads that's what sounds good to me. I don't just think it's the season but I love Fall too. My tastes are ever changing, the joys of illness.

Basically, tell me what's going on outside of my house. I know what's happening here. I'm here all the time. Let me know what's happening in the world around me. I want to hear about you and your life. I'm tired of talking about mine. I need to go lay down now, but know that we love every service that has been done in our behalf because we know it's been done with love. Love you All💗

Visiting Rebecca

Below is a google doc for scheduling visits to Rebecca-although she feels very loved with all the visitors she has received lately, she is needing a little more rest.  

There will be opportunities to serve and express our love to her shortly, in the form of housework and meals.  We will be sending out those google docs after her girls head off to college mid-September. 

https://docs.google.com/spreadsheets/d/1kt3gP4Q6rs00wJYVS0pMISahdodkf-2_s-yqhp08a4A/edit?usp=sharing

First Days of School

 Monday, August 27th, was the first day of school for these two. 

 And yes, this is my 9th grader and 6th grader. Haha, not much different in size. Their outfits and school supplies were purchased and supplies by the staff at Mesa Elementary. The kids were thrilled and excited to wear their new clothes. Thank you to all who supported this effort! I've taken school pictures on this front deck for 16 years and today will be the last day. 

Two hours later, this deck was gone.

Tuesday, August 28th, today everyone went to school.

See my deck is gone and here is my 10th grader. Maybe I'll keep taking pictures. They're just so cute!

I Just Want To Be A Mom

On Monday I met with my chemo doctor at 3:45. I was scheduled to get my mediport put in on Tuesday and chemo start on Thursday but I wanted to meet with my doctor one more time to discuss questions that I had and what I had decided to do to move forward. I told you before I had 3 options for the cancer I have. 1. To participate in a clinical trial, which I've already opted out of after reading all the information. So that's off the books which leaves me with, 2. Do 2 different chemos, 1 day a week for 2 weeks and then 1 week off (meaning no chemo that week) for the rest of my life or 3. Don't do chemo and just treat the symptoms as they come. For example, right now I'm off the steroid medicine they were giving me for my brain. I was on it for about 5-6 weeks but they don't like you on it very long because of the bad side effects it can have so they slowly wean you off of it each week. I've been off of it for a week now and I've realized that even though it made me gain weight it was also hiding all the pain I was having before I was diagnosed, so now my bone pain and head pain is back. I can control it though with ibuprofen/tylenol right now. They have given me some other medications but I don't like the way they make me feel so I just take ibuprofen/tylenol because I can have a normal day just taking those. I am a lot more tired but I knew that would be coming. I guess symptoms from the radiation don't really start showing until a couple weeks until your done. Oh yeah, I finished radiation two Friday's ago, so that's really nice. My hair all fell out a couple weeks ago as well. Easier to take care of but don't like the way I look. I ordered a couple scarves and hats to help with that and they showed up on Monday.

Ok, so on Monday I needed to make a decision for what I want because my mediport was scheduled to be put in on Tuesday. I've been praying and studying all week while we were away as well as people in the community have been praying for me to know what to do. As of right now, I've decided not to do chemo. It has nothing to do with giving up but everything to do with wanting to be a mom as long as I can. Meaning, I know what it's like once I start chemo. It will make me very sick and I'll be in bed the first few days. Right now, aside from being tired and needing to take ibuprofen, I'm pretty normal. I still cook and clean and go to church and do things I want to do. Once I start chemo that will all change. The kids start school next week and I want to go watch them at their events as long as I can. Here's the other clincher, I've met with several doctors and all of them have confirmed that I have less then a year. In everything I've read and studied, has confirmed this, because it's in my brain. The chemo will not work in my brain and I can't have an MRI for 2 months to see how the radiation has affected it. I have too many spots in my brain to really do anything else and you can only radiate the whole brain 1 time. Anyone that's done it 2 times has totally lost their memory and must be taken care of. So, if a miracle is going to happen, we're praying that it will be, that I will be here when my son comes home in a year. It was nice to get away last week but it was also a little daunting because I also planned my funeral, but it will be so much easier for my family now that that's done. I know that Heavenly Father knows me though because he knows I like to be prepared for things and he's given me this time to prepare. 

I have to share this because it's funny. A couple weeks ago my husband came home and said, "Hey, guess what? We're property owners!" I kind of looked confused then understood what he was saying. He had just purchased our plots in the cemetery. It was funny! Some things you have to laugh at.

So I've been very busy the last couple of weeks, getting things in order at my house while I still can. I feel like I'm nesting. Instead of going to far off places with my family, I just want to make sure everything at home is taken care of before I'm gone. So things I've always wanted to replace and haven't taken the time to do it are know getting done. It will be so much easier for family. So we've ordered new windows and doors and are fixing the deck. I'm very excited! Gives me something to look forward to while I'm working on other projects like getting the kids baby books and pictures organized and getting a few things for my hope chest for the kids later in life.

I just want to make sure things are taken care of for my husband. I can't even imagine what it's like to be in his shoes. To feel alone and be alone! He's been my rock and totally supports my decisions. I'm sure he and my family were surprised by my decision, but after explaining everything and why, they understand. Now, I need to make it at least until after Christmas. My poor Rachael has had a Mom with cancer her whole school life. She started Kindergarten with my first diagnosis. She graduated High School and started College with my second diagnosis and will graduate College with my last diagnosis. My son and I had no idea when he left for his mission that when we said goodbye that it might be for the last time, but not everyone gets to say goodbye. Lots of people have asked, "Well can't he come home." Yes, he can but will that really be easier for him or me? If he comes home for a week, will it be any different then the last time we said goodbye? I will say, he's having a hard time. He just learned about the timeline of my diagnosis on Monday. Pray for him! I can't imagine getting news like this across the world on an island in the middle of the ocean through an email. He is serving his Heavenly Father. He was his before he was mine. There is peace in knowing that I believe I will see him again. In my church, we call it the Plan of Salvation or the Plan of Happiness. It brings much peace and comfort in a time like this. This earth life experience is so short compared to the eternities. My family is mine and always will be as long as I do my part. He is my "tough guy" and can do hard things but it is up to him and Heavenly Father what he needs to do. Heavenly Father is in total control right now. He has a plan and I'm learning to Trust Him and have Faith.

So for now, I just want to be a Mom and Wife. To keep it as normal as possible as long as I can. Either way chemo or not, the diagnosis is the same, so for now, this is what I choose. 

Words Can't Express

This happened while we were gone.

Honestly, words can't even express how much I Love where I live. I mean, who else does this? I received way more pictures then what I'm showing here and tears just kept streaming down my face. I love you all for completing what I am unable too and giving of your time to help me. I love the fact that ladies showed up to help who didn't even know how to quilt but wanted to do something to help and were willing to learn. There is seriously a swelling within my heart that made me feel like my heart was going to burst. I love you all and am just so thankful! 💗