But Jonathan didn't really give you an update on how things are going. So I'll get to work and fill you in on our the details.
After Jonathan finished his rough round of chemo right before Christmas, we headed to the doctor's office to try another type of antinausea that we haven't tried yet. They did an infusion of Aloxi. This is a slow release antinausea that actually ended up working really well for him. He was able to eat and drink actually pretty normally, which was huge for him after the cisplatin. So I didn't have to run as much IV fluids for him, or dose him with as much other antinausea drugs. Overall he did really well. He was able to participate at Christmas some, he ate Christmas dinner and I think even had a cinnamon roll or two for breakfast.
Shortly after Christmas, we made what feels now like our usual trip to the ER when Jonathan is neutripenic. For the first time in my life I'm a little hesitant to explain in detail Jonathan's situation, so out of respect for his privacy I'll vaguely explain. When he becomes neutripenic, he has nearly no white or red blood cells, and very low platelets. This causes him to get constant bloody noses because his blood won't clot. He becomes extremely fatigued because he has nothing to distribute oxygen around in his body making just getting to the bathroom a cardio work out. Also he struggles with really bad mouth sores. You take a high bacteria filled area in your body and no cells to fight the bacteria and you get sores. So consider another place in your body that comes into cotact with lots of bacteria...This area has now also developed sores. This became a very painful thing for Jonathan and possibly what caused the infection this time. This issue still isn't even resolved as Jonathan is still struggling with pain during his personal reading time in the restroom.
After Jonathan was released from the hospital we had a few days at home before we headed over to Seatlle for a visit with his surgeon. It was a great trip. We had a nice dinner with friends over on that side of the state. The drive wasn't too bad, and the dr. visit went well. They released him to bear full weight on his leg. Since that day, our lives have been liberated! It was so restricting for him to constantly have a crutch. He couldn't carry things with no hands... Now, he is helping with the dishes, making sandwiches for the kids, making his own snacks and even putting away laundry! And when we play hide and seek, he doesn't have to try to hide his walker. He doesn't have pain in his leg anymore either. We can at times forget he has cancer... life almost feels normal again when the 4 of us are home.
This month we finally got our disability check in the mail. After threatening them that I hired an attorney, we finally got that situation under control. We once again want to thank everyone that has helped us financially throug this journey. With your help we were able to make it 5 months on our savings and your donations. I was starting to worry we were going to have to pull from IRAs etc. to pay COBRA but it has all worked out. AND now that we have an income we were able to hire a nanny for the kids while I'm at the hospital with Jonathan. While we have been beyond grateful to our family for all the help, It hopefully will be a more consistent schedule for the kids to just have 1 person. She is helping some with cooking dinner, shopping and cleaning. We are so grateful to have Kirsten helping make things seem a little more normal for all 4 of us.
We are back in the hospital today for week 2 of our 3 week go at chemo. So far things are going well. Jonathan is eating good, gaining weight, and his sense of humore is back! He is struggling a bit with high blood pressure and a higher heart rate, but hopefully as we finish these last few months of chemo that will resolve. But basically his resting heart rate has almost doubled since this started... I thought he burned calories before, holy cow!
We also went back in to have another check of his skin. We had 4 more spots removed and are waiting on biopsy results on those. Hopefully they won't be melenoma and require surgery... But I'm not going to hold my breath on that. I posted this photo on facebook and mentioned Jon is going to be the cool dad that has to wear a shirt now at the beach constantly. These scars resemble that of frankenstein... Jon is proud of them though. He has decided to tell people he was in a knife fight in jail or something.
We were hoping to attempt one of his next chemo rounds as an out patient, but the pharmacist told us no to that one. It is too high of a dose. So next week we will be doing his first round of just Doxi. We are hoping that it is way easier than when they give it to him with the antichrist chemo. It will still make him neutripenic though. So we shall see how it all goes....
I've been working on a study in 1st Peter. The point of the bible study is to try to find encouragement in troubling times. Anyway, Ever heard the expression, God works in mysterious ways? Today he revealed something to me while Jonathan and I were watching Pawn Wars. Now that's pretty darn mysterious... (Jonathan watches a lot of TV) and this show is by far hitting our low point! (insert chuckle) So I was spending some time answering some questions on 1 peter chapter 1 in my study book earlier that day. In verse 7 Peter compared our faith to precious gold. Then he used an analogy about our faith being tested by fire. At the time I was going through my study my thoughts were about how cancer is our fire, and how this is testing us. But as I watched this Pawn guy melt the gold with his blow torch to test if it was real, I got this "oh my gosh" moment. Peter isn't just talking about how cancer is my fire, he was talking about fire changing the form of the gold!
When horrible things happen, I think it is inevitable to ask WHY? I think this question must be the biggest questions in any faith. I mean is God like this big puppet master in the sky who picks the ones that get cancer, or gets divorced, or allows children to be abused? And surely that isn't how this works, but since I know with 100% certainty that with a short breathe he can take all of it away in an instant. So why doesn't he? I'm sure there are pastors or theologians that may have answers to this, but for me, I'm done asking why. Knowing why doesn't change the fact it's happening! I think we need to move on to the next question, "what am I going to do about it?" So I know that I am more precious than gold, and yes my fire is that my husband has cancer. So right now I'm being melted, or maybe reshaped is a better way to put it. I've watched so many other people be shaped by their fire; Abuse, A child with a brain tumor, Divorce, Illness, Death... the list could go on forever. It seems like the outcome for how it changes people is different every time. I've seen anger, bitterness, mistrust, sadness, depression but I've also seen grace, unwavering faith, pure Joy and kindness. No matter what, these horrible things are going to change us. And I think God gives us free will, and we get a say in how we change or reshape ourselves. Because in the end, even if we choose to be angry or sad, we are still more precious than gold in God's eyes. But lets be honest, who wants to be angry or sad? I want to come out of this with Joy like I've never experienced. I'm actually looking forward to a mairrage post cancer... we've been through hell together, and now will have a connection most people will never get to experience.
1 Peter 1:8-9 And though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.
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