Cancer Spreading

Last week was not a good one. The effects of chemo felt particularly awful. The next day started getting better but then my neck became very sore and tender, right near the area where I had had the lump. My neck has not been an issue. The tumor seemed to melt away quickly in the beginning and hasn't been a problem since, but I couldn't ignore this new tenderness. I called into my nurse to let her know about it and ask what I should do. I was waiting for her to speak to the doctor and call me back. As time passed I felt increasing worse, not in my neck but my stomach felt horrible. I called again and added this new symptom. They wanted to see me. I went in the next day and they couldn't tell anything from the blood work so they sent me in for a CT scan. Rather than just scan my neck I suggested he do a full scan since we were only a few weeks away from my scheduled scan anyway, so they did. The scan showed that my tumors are growing and the cancer has spread. They saw several tumors in my abdomen around my intestines, not in an organ. There was a fuzzy area in my neck that they think is nothing but aren't 100% sure. My doctor was definitely more concerned with the new tumors than he was with the growth of the old ones. Treatment needs to change so we are stopping the folfiri and going to the next and final chemo option called regorafenib.
Several months ago my daughter posted the following on her Facebook. I was so impressed by her ability to put into words such a vivid discription of her feelings (and the feelings of all of us) that I wanted to share it here.

"Bad days are expected. It's what you prepare for when you first hear "cancer". It's sort of like standing at the edge of a cliff with a blindfold on. You know you're at the edge but to look would be too scary. When you stand there long enough, you get used to the idea of being at the edge of a cliff. Then the wind gets a little stronger and pushes you, and you hear rocks fall as your balance slips, your stomach sinks, and all the scary feelings come back." -Valerie

Along the way we have experienced good days and bad, blessings, miracles and hard things to handle. It is human of us to have fear and anxiety when things are not good. To use Valerie’s analogy of the cliff, it is clear that at some point we must go over the cliff. We see that going over the cliff is going to bring pain and suffering and our fear and anxiety build. But if we know where to turn for peace we can feel peace even in the middle of our trials. There are several things that bring me peace. 1) Knowing that I have friends and family to help, comfort and lean on during these times. 2) Knowing that there are many on the other side who love us and watch over us as well. 3) Knowing that my Savior, Jesus Christ, is aware of me and loves me and His sacrifice made it possible for me to be forgiven of my sins, have peace in my heart, be able to return to Him, and with His help I can bear all things. Knowing these things helps me to see the cliff a little differently. I think when the time comes, we will find ourselves not falling but being carried by angels and placed gently on the other side.

Lots of joy!

Today was an awesome day! Ian came home from his two year mission for The Church of Jesus Christ of Latter-day Saints on January 7th. He spoke in church today and shared with us how he learned to recognize and follow the Spirit. He shared how his understanding of the gospel grew as he studied. And how when he learned of my cancer just as he was beginning his mission he studied harder and learned for himself the plan of salvation and spoke of the peace he felt when he understood it. His testimony is firm. I can't include everything he said here but it has brought me great joy to see his growth, and to know that he knows.

On the evening of the 7th, after picking up Ian, I wasn't feeling well. I went to lay down and when I woke up a couple hours later, I had a fever. I'm supposed to call into my doctor any time I have a fever. I haven't had a fever in a long time. But I know that because they only seem to happen at night, it means a trip to the ER. Sure enough we found ourselves in the ER. I was so afraid that I was neutropenic and that I would be admitted and our trip to Atlanta on the 9th would have to be postponed. But as sure as everybody seemed to be that I was neutropenic and would be admitted, it turned out not to be the case. They determined that I had picked up some kind of virus and would be fine to travel. Yay! So by the end of the next day I was feeling back to myself again and we were anxiously packing to go and see our new grandson!

Our trip was awesome! We stayed with my son-in-law's parents who are also friends of ours. They were very gracious for putting us up and putting up with us for over a week. It was nice to see them and catch up. I had all of my children together in one place and seeing my grandson was amazing. He is adorable and already you can see some if his personality.  It was incredible watching my daughter be a mother and seeing how my sons adored their nephew. We were exited to see Eddie's brother and his wife an their daughter. They flew down for a day to see everyone. It was nice catching up with them. Between Valerie and I we couldn't go out and do as much as we would have liked but the boys did a few fun things like going shooting and visiting the aquarium and playing basketball together. My favorite was going to story corps. It is free and their mission is to provide people of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives. What an awesome idea! You get to go into a room, record your story and they preserve it and you get a copy! We originally were going to go in and have my husband record his 9/11 experience but at the last minute we decided that I would go in with my three sons and we would talk about this cancer experience and how it has affected each of us. What a special time that was. I enjoyed that conversation and the time spent with them so much. It was the right conversation to have.

So, now I'm back home ready to settle into a routine again but feeling so blessed with life's greatest blessings. A grandson. A son who has come home a man, ready to do what the Lord wants him to do. A daughter who has become a mother and her husband who is good and patient and helpful. A son who is serving his country and has such high ambitions and goals for his life. And another son who is preparing to go out on a mission and serve. I am grateful for all these things and more. It's a wonderful life!

Now back to January 6th and the ct scan results. There are two things they look at when making a determination on how treatment will go. The first is the tumor markers and the second is the ct scan. The scan is more heavily relied on than the tumor markers. This scan showed that right now things are stable meaning things are not growing  (they're not shrinking either) but the tumor markers have gone up. This chemo has been a hard one on me. He reduced the chemo a couple of rounds ago and I have done better. But he's thinking that the reduction is what has caused the numbers to go up. So he is going to increase the chemo back to 100% but take out the 5FU part of the chemo which is what is in the pump that I bring home for two days. The thought of not coming home with a pump makes me want to jump for joy and may be the only reason I agreed to go back up to 100%. We'll see how this goes. Hanging on till my next scan in a couple of months.

Happy Birthday!

It is so hard living on the other

side of the world, practically, from my Mom.

And today makes it even harder! It is her birthday today.

There is only so much I can do from all the way over here.

I figured a public, "Yipee! It's your Birthday!" post would be good.

Mom, I hope you have a great birthday.

I don't like to see you struggle. You are a wonderful example to me and those around you of  faith and good perspective. I looked through some old photos today, which only made me more homesick and miss you even more! I am in awe, as I think back through the years, at your incredible selflessness.

I'm so happy you are my Mom and that we are so close.

Happy Birthday!!

xoxo

Folfiri part two

After delaying the second round of folfiri due to being neutropenic, I skipped my third round due to dealing with complications that happened when the stent was put in. I didn't want to deal with the changes and complications and chemo at the same time so it was my decision to skip one round. Not expecting a diet change because of having a stent complicated life just a bit. How do you eat healthy when they put you on a low fiber diet? Now I'm back on track with the schedule.

The day before Thanksgiving I had a ct scan which showed that the tumors in my lungs are still continuing to grow. The concern is that this chemo is not working. But because I was delayed with one round and skipped another, it may just be that I haven't been consistent enough. The plan is to do two more rounds which will make four consistent rounds and have another ct scan on January 6th. If the tumors are still growing we will move to the third and final chemo option. 

I did so well with the folfox it didn't enter my mind that this one would not work for me. I'm trying not to worry about it until we know for sure what we are dealing with but at the same time it is good to be prepared.

This has been a rough chemo on me, leaving me very weak and tired (not to mention the hair loss). But I continue to feel lifted by the love and prayers that are so generously given in my behalf. I believe they are literally keeping me going. I am so grateful for the support of good friends and family that I am surrounded by. 

Folfiri

My first round of the new chemo, folfiri was not very pleasant. I left SCCA in a wheelchair, dizzy, and with twitching eyes. My eyes finally got back to normal after about 5 hours. It was a side effect of one of the meds they gave me to reduce an expected side effect that I never got. I won't be taking that again. One side effect of this chemo is a lovely acne type rash which I do have.

I went in for my 2nd round and was neutropenic so I couldn't have chemo that day. Instead, I went in the next three days for shots to help boost my white blood count. So chemo was delayed a week and I went in on Tuesday. Everything went well. I feel good. The only thing is that my hair is thinning big time.  I don't know how much I'll loose but it's freaking me out a bit when I wash my hair and I find big clumps of hair in my hands and also when I style it. I'm trying to stay positive but losing your hair is hard. 

My last CT scan showed not only the tumors in my lungs growing but the one in my colon growing as well. I feel I made the right decision in making the chemo switch. I have gone in for testing on the colon. The pictures show a significant narrowing of the colon in one place which has been giving me problems. I will be going in next week to have a stent put in to help relieve those problems and make me more comfortable. 

I know that whatever we are asked to go through in this life it is for our growth and benefit. I am trusting the process and am striving to stay positive and learn what is meant for me to learn and do what is asked of me to do. I love my family and am strengthened by their support as well as the support of fabulous friends. This would be so much harder without you! I trust in my Savior and know that He loves me and is with not only me but my family as we go through this. All of these things bring me comfort and peace.