Tuesday, March 6, 2012

Update written by Kristen Baumgarten and posted onto this blog by her friend K Baldwin

http://my-3-sons-kmb.blogspot.com/2012/02/look-for-evidence.html (This is the link to the post below taken from Kristen's family blog.)

Look For Evidence
This post has been a long time coming. It has been a nearly 3 month work-in-progress; written, rewritten, edited and deleted. Hopefully I can make the point I need to make. I have had the impression repeatedly that I should post, but have struggled with the whole making-myself-more-vulnerable issue.
I will start with a little background:
I am not sure if I ever mentioned that Josh made the decision to go on long-term disability. We weren't sure exactly how it would work out for him to be working the long hours he needed to work. We prayed. We went to the temple. We talked to his doctor. We talked to his boss. We made the decision, felt good about it and went forward with it. We weren't necessarily happy with the circumstance, because let's be honest: living on a fraction of a regular income is not ideal. But we felt like Heavenly Father was directing us, and we were extending our faith. 
The Lord's hand was again manifest in our decision quickly. Josh started having seizures more frequently. About mid-November he had a seizure last for over 20 minutes. Just after Thanksgiving he had another one that lasted for over 30 minutes. He was taken by ambulance to the Huntsman Hospital where we stayed for three days. The main purpose for his stay was to ensure that 1: he didn't continue to have seizures and 2: that he would regain the strength and coordination he lost during the seizure. 
During that stay, we found out that his tumor was growing. They decided to put him back on Temodar (the oral chemotherapy he had taken before). He completed one five-day cycle. A month later, we went back for more tests. The tumor was still progressing. They decided to change the Temodar cycle to 21 days on 7 off. Another month later, more progression. They decided to add an Avastin infusion every other week. After two infusions they expect to see tumor response. The good news was that there was no new tumor growth, but the bad news was that they expected to see less enhancement in the MRI and it was unchanged (suggesting that the tumor response to the Avastin is minor). Still, the plan is to continue with the 21-day Temodar cycle and Avastin infusions. We have another appointment with the neuro-oncology team on March 15.  Before that appointment, Josh will finish one round of Temodar, start another, and travel to Salt Lake twice for Avastin infusions. 
Just before Josh went on diability, I had been struggling with the Multiple Sclerosis therapy I was taking called Avonex. I was literally sick in bed for 1-2 days every week with flu-like symptoms (including a fever that often went to 104 degrees). I felt like new MS symptoms crept up every 4-6 weeks. I was so tired of being sick. I didn't feel like I had time to be sick. My job is to take care of my family of four small children and a husband with stage IV brain cancer. Who can do that from bed? I made the decision to try something new. I went to Mexico for alternative treatment and as an answer to my constant pleading to Heavenly Father:  I found relief.  I also ended up having three surgeries at the end of the year. One surgery involved three procedures that can stand alone as their own surgeries, and the other two were pretty intense, major surgeries. They were medically necessary, and at this point I am much better having had them. I am convinced the treatment I received in Mexico helped me keep my head above water and to not completely crash with an MS relapse. Many MS patients spiral out of control after having one surgery, let alone three. Then, in January, I started to experience some new symptoms but quickly underwent IV steroid therapy to buy me time until I can go to Mexico again. (Judge me if you will, but I am telling you-- I COULD NOT function before I went to see Dr. Calzada in Mexico). 
Now, having said all that we have experienced all the feelings you might expect and maybe more. I have had moments where I felt so exhausted from worry about what might happen to my husband that I   literally feel like there is nothing left. I realize the reason why people list all the things cancer cannot take away is because there are times when it feels like it takes EVERYTHING else.  Everything.
It probably sounds like I am complaining. I am not. The very experiences that break me down take me to my knees in prayer. I know that this life was meant to be a test. It is a probationary period for each of us to experience heartache and joy. I am not so naive to believe that we are the only people experiencing adversity. I know that each of us are children of the same Heavenly Father who loves us and watches over us.
He prepares the way for us to do hard things. The way may not be clear. Sometimes I feel like we are walking in the dark. But if I have found that if I really take the time to look at what is around us, I can find the beauty and joy in the journey. I see the Christlike compassion all around us, I see the small and tender mercies that I may have otherwise overlooked. Evidences of our Father's love is all around us. I have been thinking about this a lot, especially when I get down. I have a few minutes or maybe hours or even days of being upset, but every time I start looking for my blessings I am overwhelmed by the way I can feel His arms around me. I feel it in the sunrise, the giggles and wiggles in my four children, the rise and fall of my husband's chest when he holds me in his arms, the quiet reassurances reminding me that He is in charge.
Just today I got news that really upset me. I was mad, scared, sad and then exhausted again. Exhausted because it is just something new to worry about and that is completely out of our hands. I felt edgy and every little thing just made me want to go crazy. Josh, in his calmer and more rational perspective reminded me that Satan's goal is to keep us angry and upset because then we are not open to recognizing the Spirit or the Lord's hand guiding us through this test. I will be honest. I didn't want to hear it at first. I just wanted him to validate my feelings.
But, Josh is right. In order to make it through this life, we can't afford to waste our time and energy on anger over something that cannot be changed. It is alright to be upset and to admit that it is hard and that we, in our imperfect state don't want to wade through our adversity. But ultimately, we can't afford to let fear overshadow our faith. Our Father will not leave any of us comfortless. Not one.

1 comment:

Kari said...

I have been wondering about you guys! I am SO GLAD to read an update. Your sweet family is in my prayers. I am amazed by your strength and your faith.