More information than you ever wanted to know! (Health update March 11)
Hello family and friends!
* Disclaimer: I wrote this while I was at the hospital on my phone using Talk to text. I’m sure there is some weird wording in here. I Accidentally deleted the post two times. I did cry a little bit. I lost a couple hours of work! 😭Hopefully it will come across and make sense. I sure love you! I’m excited to share God’s goodness in my journey the last few weeks.
It's been a rough four weeks since we returned from Mexico. We had chemo the next day after we returned! The doc recommended We decided to wean off the steroids because I was having crazy side effects. I was not sleeping,eating too much, and feeling kind of crazy. We weaned off steroids for the next two weeks.
After I went off the steroids, I started to lose mobility quickly. I went from a cane , to crutches, to a European cane, to a walker, and I've just got a wheelchair. (Tender mercy; each of these mobility aids showed up JUST when I needed them! people gathered them and delivered them to me. I was in on high. I always had just what I need without asking! I even had some dear friends, who just happened to be nurses. (Emmeline and Heather) suggested a foot drop base, which has been life-saving and taught me how to go downstairs. (Go sideways ..Bad foot first downstairs (goes to hell) and good foot first up (goes to heaven.) So if you hear me, hear me saying “heaven” and “hell” a lot- don’t look at me weird!) Heather also delivered a sleep supplement to me ( that night-she had ordered extra!) that is helping a ton! Heather also recommended a company that provides a good dictation program on my computer as I am struggling to write with my weak hand! Again, God is good! So grateful God sent me these good friends to help me right now.
Getting back to the doctor’s appointments updates . We did chemo again this last week. (The new treatment!) We had the infusion part and will be getting chemo pills in the mail next week S far so good: NO side effects. I didn’t feel sick at all! I was so excited when I learned that I don’t have to wear my pump home for 48 hours anymore! Best news ever!!!
We went to the radiation oncologist on Wednesday to see what we could do to receive help. It has been a long few weeks trying to learn how to be an invalid. I restarted the steroids and increase the dose, trying to improve the mobility as much as we can. It has not improved at all. In fact, it has gotten worse. Learning every day how to be independent. It is slowly coming, and we are learning some good tricks. Dennis and I have a pretty good routine to get me, showered and ready in the morning. The kids have been available to help, Abby just happens to have a really open schedule this semester and is home in the mornings. It works out great. Drew is available to help all the time as well! Abrahm has also been so good to help. He has taken days off work just because he wants to help. I can get around pretty good with a walker in the house. It just takes me a little longer to do everything. I have had lots of sitting time to study and pray which makes me happy! I find that I need to move to keep mobility going up. I have had a major block with exercise leaving I just couldn’t do it. This week, I walked around my house with my walker for a while- and then even tried my extended bar program on BODI.. It wasn’t pretty, but it made my soul so happy! I just wanted to tell the world that I had done it. Grateful for the little wins!
We are doing at a biopsy of my brain (today) in order to determine if it is really radiation necrosis, or if it is new growth of a new tumor. Doc says we can’t take the whole thing out, without serious risks of permanent disability. Here is today’s report! (Sorry for the length of this!)
We arrived super early to do the biopsy. We got in for the procedure early, but they had prepped the wrong biopsy took kit. He wanted to do a different procedure that is less invasive and needed some different tools. We waited again for our turn. I had a rough few minutes coming out of anesthesia the first time, but I am feeling better now with some drugs in me! We finally got in about noon and put me to sleep again. We got into recovery about 3 PM. They were happy with the results. They got a good biopsy and so far it showed no sign of new growth! We will know more in two weeks when the pathology comes back We have an appointment with Dr Dickerson to discuss those results.
As far as treating the necrosis in the meantime (possibly help mobility?), there is some good help available.
I can get hyperbaric (oxygen) therapy, which is known to treat necrosis. We can also receive laser therapy (LITT) which is only offered in Utah.) It can help to reduce the necrosis as well. These are pretty non-invasive. We were able to get into a hyperbaric appointment this week (miracle) and they got insurance authorization and record time. (Also a miracle) I will start this Wednesday. God is good! I still need to look into the LITT therapy. I know it is in Utah at the University of Utah. I don’t know much else about it, other than they try decrease the swelling with lasers. If we find out from the biopsy that there is an active tumor, more radiation as a possibility. We are not really excited to radiate again.
Overall, We are doing the best we can, but it takes a lot of energy to learn how to function and do even the simplest things. I have had some pretty good temper tantrums when I get wrapped up in the covers at night, and cannot move myself! We ARE coming up with good routines and finding simple tricks that make things easier every day. I am always so excited when I can do something for myself. It is coming along!
This weekend I got to go see my sister in St. George. This was food for my soul, (and my. cough—-thethe warm weather makes me cough less!)
While in St. George, we got to attend the last day of the open house for the Red Cliffs temple! (what are the chances? )I was so excited! It was so beautiful’ it far exceeded my expectations!
The Cliffs Temple! It is just a few minutes es from Natalie‘s house. It is so beautiful and has so many different flowers and colors in the theme. I’m in love.!
We also had some good family time, and we’re able to attend my nephews Baptism, (Congrats Rhett!)
A member of the bishopric gave some remarks that really touched my heart. He gave Rhett his own personal statue of Christ that happens to have an arm broken. He told the story of the statue in France that had its arms broken in a bombing. The people did not replace the arms, but instead placed a plaque on the statue that read “You are my hands!”
He taught Rhett that he could be Jesus‘s hands.by serving and blessing others.
He said an easy way to do that is to treat your family well! Say nice things to them! Give them compliments! Believe in them, and give them the benefit of the doubt. I love just council, as I am seeking for easy ways to serve in my situation.
I also loved his comments about how much Jesus loves us and will never turn us away. He used the phrase from 2 Nephi chapter 19 we have just been studying.
It epeats so many times and is my favorite representation of HOW Jesus loves us, “His arms are stretched out still.” He told Rhett that Jesus never crosses his arms and tells us to go away. He is always available and willing to help us with anything and he understands perfectly our struggles. Ahhhh… I love it! So good!
I really want to thank you all for the prayers,fasting, and acts of service. I am overwhelmed. Thank you for being his hands.
I am forever grateful.
Lots of love, Emilie
Comments
Post a Comment