Cancer just SUCKS!!!

I am reminded of that EVER day. Cancer sucks! There really aren't words to describe it: it is scary, terrifying, I am nervous, anxious and just hate it all.  Right when I think I am kind of getting use to our new normal, I realize I am not. 

Just over a week ago John started coughing a lot. He also had a low grade fever off and on. He was so bummed because he was going to go to church Sunday. But could not go with this "cold". We were kind of putting off calling the Dr., pretty sure they would admit him to the hospital and Christmas was right around the corner. He had an appointment the day after Christmas. Turns out he has pneumonia - AGAIN!!! But they did surprise us by saying he could do oral antibiotics at home :) He coughs a lot and is slowly getting better. He finally does not have a fever after 6 days of having one. 

John's parents are in town for Christmas. We had them staying with us for 6 days. It was fun, but hard for John. He wanted to be able to do things with them and can't. It has been snowing a lot and we all went out to play in the snow Christmas Eve and John couldn't :( simple things that most people do not think of. He did not even go to Christmas dinner at his brothers house on Christmas day. He did not go with us to temple square to look at lights. I hate it!!! It is so hard and so not fair. Some times I feel like people are very insensitive to what is going on. But I realized that just because our family of 7 has to live with John having cancer does not mean every one else does. I just think about life so differently now. It is so hard to not be able to do "normal" things.

Christmas was really good. It snowed most of Christmas Eve. Instead of our usual movie out tradition, we had a movie in. Grandma and Papa gave the kids "Brave" and we all sat and watched that. I picked up chinese take out) which is our Christmas eve tradition and we had a good evening. Kids went to bed good and John went to bed early. John's brother Dave and his family stayed the night here and that was super fun. I was grateful for the help from John's parents and Brook and Dave and Abigail. Everything was wrapped, but still took us a while to set everything out. We were super super blessed by others. Several people gave us $$$ and several others dropped off presents!! Kids had more this Christmas than they ever have gotten. It was fun watching them open so many presents. But, John was very low on energy and it was a crazy morning.

John and I were married on Dec. 27, 1996. So we were celebrating our 16th anniversary yesterday. Gratefully a good friend offered to bring us dinner and take our kids overnight. Another thing that sucks, we can't go anywhere!!! So we were celebrating in. It was nice, just different. I can't wait till we can just go our to dinner and a movie :) We played "LIFE" (John's pick of a game), and had dinner and watched "Modern Family". I got to sleep in this morning, but John had to be at the hospital at 8 am.  Life is changing so so much. I don't think I will ever get use to it. 

John and I playing LIFE on our Anniversary.

John and I last year on our Anniversary. I surprised him and took him to NYC for 3 1/2 days. It was a great trip, and I am grateful for the memories.

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Just an update. All is going pretty well.  John is on day 9 of this cycle. He feels ok, but seems to have trouble getting up and moving in the mornings. He goes to work but usually doesn't make it in until about 9 am. His rash is pretty much gone, but he has dry itchy skin. He seems to be eating ok, but having trouble finding drinks that taste good to him. Right now he seems to like ensure clear fruit drinks :)

He had an appointment at the clinic yesterday. It went well. His numbers are all good and for now his cancer cells are at 0%!!! I think the hope is to keep them there until everything is ready for the transplant. His white blood cell count is about 3500, normal is about 5000 - 10,000.  And his used to be over 35,000.  Stem cell transplant should still be after the 3rd cycle which ends in the middle of January.  Then it takes about 3 weeks of collecting and harvesting his stem cells. Then he should be admitted to the hospital about February 10 and be there 3 - 4 weeks.

We are excited for Christmas and to have family here.

It's been a while

Ok - Not a whole lot to report with John. He is feeling ok. He started this new cycle a week ago. His energy levels were really good until yesterday. He kind of hit a wall. He also has a cold :( Luckily it is just a common cold (hospital thought it was RSV or Strep and ran a bunch of tests). It may take him a while to fight it though. His white blood cell count is about half of the low end for a normal person. Which is where they want it. And the cancer count in those cells are pretty low, but still takes him a lot longer to fight illnesses. Let's hope it stays a cold and does not turn into pneumonia.

He is having a hard time with food. Not keeping it down, just that most food and drinks do not taste very good. Once in a while he eats something that tastes really good and normal. But he still has not lost any weight so that is good. He had a bad rash on his torso and they had to change that medication, the rash is almost gone, but his skin is really dry. He is retaining water and his face and neck were swollen this morning. It all could be worse. 

The other day I was with my sister in law Brook in a cute shop and I saw this. I have to donate - although I joked and said I could put it towards my own bills :)

We have been really blessed lately. Our ward had a Christmas party Saturday. As part of the party they had a "Fill the pot for the Philpotts" pot. They had a nice dinner and a choir and a silent auction. I had no idea what to expect, but Sunday the bishopric brought us a check from the donations. It was over $4000.00!!!! They said it was super cute because the bottom was full of coins and they watched kids keep putting handfuls in. It took them 45 minutes to count all the coins.  I just picture every women emptying her wallet of change so the kids could put the change in there. Our home teacher told his family and his wives family and they donated too.  These are people we have never met and have been so blessed by them.  John opened the check and balled and balled. It is a huge blessing that we are so so grateful for.

Then yesterday someone decided to bring some groceries by. I was in Isaiah's class and when Abby got home there were groceries all over the front porch. She brought them in and called me asking where to put it all. I was thinking a few groceries. It was a ton and covered my big kitchen counter. The amazing thing is I had just gone shopping yesterday morning and it was like everything multiplied, I bought milk, they brought milk, I bought cheese, they brought cheese, I bought bread they brought bread, goes on and on with mac n cheese, string cheese, oranges, butter, spaghetti sauce, pasta, cereal, beef, chicken . . . I just stood there in shock and cried. There was one bag that simply said "Merry Christmas".  Both of my big side by side fridge/freezers are totally full. I am so grateful for the kindness and thoughtful people. We are so blessed to have amazing people in our lives.

A visit from Elder David A. Bednar

HOLY MOLY! Yes, this is my family with Elder David A. Bednar in our home!!!! Elder Bednar is one of the 12 Apostles of Jesus Christ. It Bible times he would be Peter, James or John. And he came to visit us. This just does not happen - to any one! Well, to very very very few people. Ever since he was called to be an apostle 8 years ago and first spoke in General Conference he has been one of my favorites! I love his stories. Now he is definitely my most favorite!

So, here is the story: Our Stake Conference is this weekend. It was announced about a month ago that Elder Bednar and Elder Allen (of the Seventy) would be coming because our Stake Presidency was being released and a new one called. Apostles do not always make this change - we are very lucky to have an Apostle coming to our Stake. So, yesterday about 2:15 our Stake President, President Tindall calls John and asked if he and Elder Bednar and Elder Allen can come visit our family. They would be here in 30-45 minutes. AHHHHHH! Yes of course they can come. We were all home except for Abby who was babysitting at Jeff and Rachelle's. John shaves and puts on a suit and asks if kids should change into church clothes. I said no, they were fine.  Then 5 minutes later freaked out and thought more clearly and said "YES, kids go put on church clothes". I was literally in sweats and had been cleaning and organizing all morning. I change fast and get ready and call my sister in law Brook to see if she or Dave can go babysit so I can pick up Abby. I run over to pick her up and tell her to change fast. We are all ready and it had been 28 minutes.

One thing that had happened that morning was Jeff asked to borrow the Suburban to go pick up some couches. I was supposed to take the kids to DI to drop some stuff off and let them do Christmas shopping for each other. But, I thought no big deal, we can go next week and I let Jeff take my car. Gratefully, or else we all could have been gone when that phone call came. 

Also, I firmly believe this is the reason I have kept a clean house my whole life. My house was totally clean. I did not even think, "oh no, we have to vacuum or dust or do dishes or make beds". Every thing was clean and totally fine for an Apostle of the Lord to be in my home. I did not have to hide anything or throw anything into closets, it was clean and I was so glad. I was so thankful in the moment for my parents who taught me to be clean.

The kids got antsy waiting and they came about 3:15. Isaiah was being very shy and kept saying "I don't want to see him". And he covered his eyes. I think he was overwhelmed by the spirit and did not know how to react. He would not even shake Elder Bednar's hand or give him "knuckles". He sat by me and then president Tindall asked Isaiah to come sit with him and he did, he sat in between he and Elder Allen the whole half hour they were here. Elder Allen rubbed his back and tickled him and played with him. It made his day and Isaiah was happy. Now, I do have good kids (for the most part), but they do not like to sit still. OH MY - for half an hour they were perfect. They sat and listened and did not get up once (other than Abby whose contact was falling out). They were reverent and respectful and happy. 

I can not describe the feeling and the only way I can is to say that the spirit was stronger than being in a temple. We all felt it and felt the peace. Elder Bednar shook all the kids hands and asked them their names and ages, Elder Allen shook their hands and asked their names and Pres. Tindall shook their hands and gave each of them a compliment. Then Elder Bednar chose to sit on the piano bench right across from John and I so he could face us. He looked at John and said, "so, how goes the battle?" John told him how it is going and how his side effects have been minimal and how he feels like he is being refined for whatever the Lord needs. Elder Bednar asked him about the prognosis and John said that with a couple of stem cell transplants he has a 1 in 3 chance of being around long term. He asked John if anything has surprised him about him and what he has been able to do. John talked about his faith being strengthened. He then looked at me and asked me the same question. I said I have been amazed at the strength I have been blessed with to do everything I need to. He then talked about the atonement and how it is not just for bad to be made good. But for the good that is true grace. 

President Tindall talked for a minute and thanked us for letting them come and said we are blessed. Elder Allen then looked at me and said, "Noelle, I can't stop thinking about you". He said sometimes we don't know who we really are and our challenges make us who we are. He said I was a choice daughter and I can do this. I was crying the whole time as he was looking in my eyes talking to me. Then Elder Bednar looked John and I in the eyes and said, " The Lord knows you and is aware of you and mindful of you".  Elder Bednar then said a prayer - a long prayer. Blessing our family. As they were leaving I could not let the moment go by and asked Elder Bednar if I could take a picture of him with the kids. He said definitely. But then Elder Allen said let me do it so you and John can be in the picture. He even knew how to use my iphone :) We shook hands and said good bye and that half an hour went by way too fast.

After they left the kids went to go change (well Elder Bednar actually told them they could) and John and I sat on the couch. I did not want to lose that moment. The Spirit was still so strong, we sat there in awe and peace and feeling so so so blessed and had never felt so close to the Lord. 

Last night I went to our adult session of Stake Conference. Elder Bednar was saying that Elder Holland was in Africa this weekend creating the 3000th Stake. He said with the current membership of the church and the amount of Stakes we have, that we might have an Apostle in our Stake every 27-30 years. But with the growth of the church it will most likely never happen again in our lives in this Stake. And he came to my home!

I think Abby knows what that meant but I don't know if the other kids really really know who Elder Bednar is. They know he is an Apostle and that he speaks in General Conference, but I am not sure if they really understand what an Apostle is. I am so glad I grabbed that picture and some day the kids will understand the greatness of that moment. We have been so blessed and once again experienced a miracle.

Hmmmm - Living with Cancer

Living with cancer . . . It sucks! What else can I say? John has been on chemo treatments for 6 1/2 weeks. His body is responding pretty well to it all. But that does not make it easy at all.  We are both really starting to realize how much our lives have changed; what we can and can't do. Life is very different.

John is still able to work most days. Still no hair loss, still gets hiccups on the steroids, has dry eyes and dry mouth, gets the metallic taste in his mouth, he eats pretty good but food tastes different, and just last night he noticed his skin is very dry and flaky and has some rashes, he also had very swollen ankles last night. I think he is sleeping a little better, he has not hurt any more bones - gratefully - but also has some anxiety and depression setting in :( He has less patience that ever and at times is very grumpy. It is HARD on all of us and all in a different way. John is really really getting tired of going nowhere. Literally he only goes to work, he can't go to the store, out to eat, to church or any where. Just work. And when he walks around he has to wear his mask. It is hard and he is getting frustrated with that.  His energy level seems to depend on where he is in his chemo cycle. First few days seem to be ok, and last few days seem to be ok, but middle is not good. Some days he only works a half day and is completely exhausted when he gets home. He usually rests all weekend.

Kids seem to be doing ok. I think for them life is somewhat normal. John is working, they go to school, I stay home and clean and run errands, and their daily life is not affected too much by it.  Other than I usually always put them all to bed and do most of the parenting.

I am also starting to feel overwhelmed and more and more like a single parent. When John is able to work, it is great - but it takes almost all his energy. He tries to do more at home, but gets frustrated and loses energy. I am having a hard time right now because I feel like life is going on, but our lives are kind of standing still.  Once a year my sisters and I try to have a sisters weekend. I was REALLY looking forward to it this year and really needed to few days of a break. At first it was maybe only going to be Emily and I. We picked a date and planned to go to Palm Springs. I have not been there since a kid and was so excited to see the sun and relax for a few days. Well, this was all planned a few months ago before we knew John had cancer. Because of expenses and John not being able to watch the kids I can no longer go. And all my sisters are getting ready to go next week. I am just having a very hard time with that. And in general realizing how much my life is changing. Right now I am a mom and a wife and that is about it. I take the kids to church alone, I go to Stake Conference alone, I run errands alone and can not ask John to stop and pick things upon his way home from work, I stay up late cleaning and getting kids school stuff ready each night, I get up early to get up with Abby. It is just hard right now.

I know we are blessed with many many friends and love and support. I am so so glad for that. It does make it easier. The plan and hope is still for John to have a stem  cell transplant in January. We hope and pray that goes smooth. Thank you for all your prayers.

I HATE STUPID CANCER

First of all, nothing has changed - just having a bad day and need to get it out. I hate cancer. I hate that it has no consistency and any one can get it. Any one can get it and it makes no sense. Your body can give it to you and your body can choose to fight it or not.  It is awful. This is why I hate cancer:

• Because my kids live in constant fear.
• Because my no matter what, our lives have changed forever.
• Because John can't be who he wants and do what he wants.
• Because it makes me cry all the time.
• Because most of the time I feel like a single mom.
• Because I can not go with my sisters on our annual "sisters weekend".
• Because my kids do not get the Christmas they deserve.
• Because we are constantly worried about John getting a fever and an infection.
• Because John breaks ribs just by bending over.
• Because I constantly think about how John's body will respond to the transplants.
• Because it took my Dad's life, John's biological father's life and 2 of my Grandparents lives.
• Because I can't sleep at night.
• Because John can't go to church ( or the grocery store or out to eat, or the movies . . .)
• Because of the bills it is giving us.
• Because John does not have much energy.
• Because it is scary. 

Hand Sanitizer, paper towels and a conference room

Yep, that just about sums it up :) Hand sanitizer all over our house - constantly all of us washing hands. John has to use paper towels too to dry his hands.  But, that is how we can hopefully stay more healthy this winter. Other than Isaiah just got over another fever and now Abigail has it :( How does that happen?? They all just got flu shots Saturday? Trying to keep them away from John is so hard and so sad.

And the conference room: So, John has been able to work a lot of the time, since being out of the hospital. We feel so blessed with his job and his company, they are being fabulous and super understanding. Before all this happened John and I met for lunch every Wednesday - our favorite place to meet is Kneaders and there is one right up the street from his office. Well, that has not happened for a while :( When he is at work and walking around the building he has to wear his mask. At his desk he can take it off. He  can not go any where public like a grocery store or a restaurant. So, today I said I would bring him lunch and we could eat together - but where?? Too many germs in the "kitchen" area at his work. So, he asked if we could use the conference room since no training is going on right now :) So, for today we get to meet for lunch.

Today also marks day 29. Which means cycle #2 is starting. One of his medications is changing. Only because it was the one they wanted to start with but it takes longer to order it in and they wanted to start chemo right away. He is also switching to a 21 day cycle. It is hard to know how he will feel with the new med and not being in the hospital. But, he will probably have way low energy levels for a week or so. We will see - and hopefully NO fevers for him.