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.

A Harp Recital

Last week at church a lady in our ward asked if John might like it if she came and played her harp for him! Definitely!! John was so excited. So she came over yesterday and gave our family a little recital. It was gorgeous and so peaceful. John really enjoyed it.

FLU shots!!

AHH - I hate shots. But, it was super important for all of us to get flu shots this winter. So, we did. John got his early last week, then I went and got mine at Walgreens. It really wasn't bad :) Then I made an appointment to take all the kids in Saturday morning. I didn't tell the kids because they get so anxious. So, they did not know until Saturday morning. They actually did ok. I had Abby go first and she did fine. All the other kids could choose leg or arm. Michael chose leg and did ok, but freaked out and tensed up a lot. Emma chose arm and did a fine. Jenna and Isaiah were not so thrilled. One nurse had to hold them while the other one did the shot. But, in the end they survived :) And now we better  not get the flu :) A flu definitely puts John in the hospital.

The odd thing is that Saturday night Isaiah got a fever :( He has had a fever for 2 days. What is it with him and fevers??

This week

This week, so far, as actually been somewhat "normal". John has been working, kids have been at school and I have been organizing :) I have been cooking and cleaning and picking my kids up from school and trying to enjoy each moment. It is weird though: Life seems kind of normal (when John is not in the hospital), BUT he is still fighting for his life every second of each day. The cancer is still there. There are days we don't really talk about it, BUT it is still there. Life goes on, BUT cancer is still there. Sometimes I kind of feel like it is the elephant in the room in an odd way. We are trying to live life, but it is HARD. No matter how good we all seem, or how well John is doing, we are still just beginning the fight of our lives.

Good news is John is doing very well.  He had an appointment this week for blood work. It went great. His numbers are all fabulous and Dr. Ford said they could not have hoped for a better response during the first round of chemo. Interesting thing is that John has not lost his hair at all. It was supposed to happen between days 14 - 21 of first round. Today is day 22 :) Not that it really matters, it is just hair. But good that he does not have that side effect.

 John is doing great with his PICC line. Apparently this should be good for 6 - 12 months. Right now we do not have any at home IV treatments - antibiotics are done. But here is Abigail one night flushing his PICC line. I told her she needed to learn in case I am not here one night :) She was nervous at first, but did great and now likes doing it. She got mad when I did it the following night :) John can talk her through it, but because of the angle he can not do it. Right now since we are not using it at home, the clinic did a heparin flush which is good for one week.

Yesterday we had a surprise phone call from Dr. Smith. He was John's voice teacher at BYUH. He has retired and served 2 missions. They now live in Alpine - about 45 minutes south of us. He and his wife Linda were up in Taylorsville yesterday and called to see if they could come visit and bring dinner. It was wonderful to see them and for them to meet our 4 youngest. The last time we saw them was 7 years ago when John and Abby and I went to Hawaii and they were still in Hawaii.  It totally made John's day to see them. Thank you so much for coming Smith's.

Next week John starts his 2nd round of chemo. One of his medicines is changing because it is the one they wanted to start with but could not get in time. So, we will see how well his body does and the side effects of it. These past 3 weeks have gone by very fast and I can not believe that Thanksgiving is in 2 weeks. I am grateful for every moment we have as a family and grateful that John is a fighter :)

Boy Scout Calling and cancer

I realized something today . . .

John's cancer was found when he hurt his should and went to the Dr. and ended up with an MRI, Which led to the orthopedist finding abnormalities in his bone marrow. We keep saying we are thankful for the shoulder injury. But, today I realized it goes deeper than that:

We moved into our new home and our new ward July 7. We did not know why THIS house or THIS neighborhood. I was dead set against it at first. But, once I walked in this house I knew it was mine :) In our church it is typical to have a "calling" or a way to serve in our congregation. John and I have both had callings with the little little kids, with bigger kids, with the youth, with the adults - we have both served everywhere and love serving. Shortly after we moved here John was asked to be the 11 year old Scout leader for our ward. He has never been in the scouts before and was not so sure about it. He is a great man though and will do whatever the Lord asks. Our Bishopric had a hard time deciding which calling for John as many people wanted John to work with them. They really debated and in the end they knew he needed to be in the Scouting program. John really struggled with this too, but came to understand the Lord needed him there. The Bishop even came over one night to talk to John about it and told him he did not know why the Lord needed him there, but he did.

Today I put 2 and 2 together. The Lord needed him in Scouts because that was where he would hurt his shoulder which would lead to finding out he has cancer. NOT necessarily because he needed to help those 11 year old boys. Because now John can NOT even work with those boys. It was all about a calling. The Lord knew when he hurt all those ribs he would not do anything about it, he knew he needed to hurt his shoulder.

I am so grateful for the gospel in my life and my understanding of our Lord's plan for each of us. The Lord knows all and he knows how to bless us and answer our prayers. We are SO happy to be here in this neighborhood. We have amazing neighbors and friends and feel so so blessed. We really miss our old neighborhood, but are super glad it is only 2 miles away and we have their support too.

Here is to hoping we have a somewhat "normal" week :) I just looked at my calendar and realized I do not have anything on my to do" list tomorrow (other than the typical, laundry, cooking, cleaning). Last time that happened John had a fever and pneumonia and ended up at the hospital. I think I will fill my day tomorrow real quick :)

Doing OK

The past few days have been pretty uneventful (gratefully). John has been feeling ok and even working full days. He comes home pretty tired, but not so tired he goes straight to bed. He went trick or treating with us and has been helping with homework in the evenings :) 

I realized I haven't been putting many pictures on here, I will try to do better about that. John was helping Isaiah with his reading here.

John is excited for the weekend and to rest a little. His PICC line is really helping but also really bothering him, it itches and hurts. But administering his antibiotics has been so much easier. He is on day 17 of his first months cycle and "should" be losing his hair any day (actually be may not). The last 2 weeks of each cycle is less medications so he is supposed to feel better and have higher energy levels.  We have found that to be true so far.

Our trick is to keep him from getting colds, flus, or more pneumonia this winter - that will not be easy. He can not go to church for a while and that will be really hard from him :( He can not go to movie theatres, grocery stores, restaurants, any real public place like that. This will take some getting use to. Some days I feel like I am all of a sudden a single mom to 6 kids (one of which is John who is pretty high needs). Some days seem somewhat normal though. It is hard to plan and still one day at a time.