I want Hayden to know that his dad and his mom struggled. That life was confusing and hard and overwhelming and honestly sometimes you just guess, start walking forward, pray about it and ask if we start walking the wrong way for the Savior to help us turn our feet and face us towards our future, whatever that may be.
Although we are parents and probably seem really old to him, we are guessing our way through while we plead for help and guidance and clarification from our Savior in which way to turn.
As Thomas and I sat with the neurologist a couple of weeks ago, he said I was headed in the wrong direction and getting sicker instead of overcoming the issues or improving. Not what we wanted to hear although I already realized that. He said that immediate and aggressive treatments were needed to stop or slow the progress of this disease. And we don't have time to wait.
Options: if insurance refuses to pay for more IViG infusions or plasmapheresis, then we will start genetic testing and immunosuppressant drugs. Ok. I wasn't exactly sure what those were. The doctor gave us two different drug names and asked us to research them and contract hi on January 4th and tell him which way we wanted to go.
Ok. Odd. Doctors haven't really done that. We decided to stalk the decision making until after Christmas. This weekend/week has been me researching these medications. It isn't too when you type in the name of the medication and a huge red warning box comes up. Caution! Extremely powerful and toxic pharmaceutical medications. Do NOT take unless terminal without these medications.
Wow. Not good. Benefit vs risk assessment vs side effects vs life adaptions. Where to start. Both medications have over a fifty percent chance of causing Lymphoma cancer. Over fifty percent chance of causing liver and kidney failure. Other high likelihood risks are pancreatitis and blood toxicity. Death. And more. I read the name of the medications again and again hoping for a different option.
Two,drugs. Both with different by high risks for complications. Two drugs with side effects and benefits and risks. How to choose between two different medications that if I stay on these for two years have a huge likelihood of me dealing with lymphatic system cancer? I relaxed and said another prayer.
My pleading was one for direction. As I sat with Thomas and asked for him to go through the meds with me. We started with the one with less side effects and didn't require you to be terminal before taking. Thomas said whatever the other one is, let's try it, this has too many risks involved, until I pulled up the sheet. Bright red risk warnings came up. He panicked silently. What to do.
After spending. Hours researching. We came to a decision. I will tell the doctors we are opting for chemo immunosuppressant medications. They are administered weekly. I will feel awful for 24 hours. I will sleep and just feel awful. However, we are hopeful for some relief on the other days. We even feel at peace. Not a huge overwhelming feeling but a calmness and reassurance.
I'm nervous. I can no longer take ibuprofen so I'm hoping the pain won't be too terribly pain. Hoping I won't get too sick from the drugs. And praying that cancer doesn't overwhelm my body. and that I can remain strong. I pray that the awful diseases will not invade my body any further and help me find relief and get stronger.
Not only will I have to be absolutely vigilant with sicknesses and washing hands and keeping sickness away from me as I will have no I,mine system to fight anything off. Any fever over 100.3 and I am hospitalized. Any coughing or sickness and hospitalization. I cannot have live vaccines nor be around anyone after they have had live vaccines for one to two weeks. We have to take my temperature multiple times a day. Everyone coming in our home must wash hands and wear a mask. It will definitely require some changes but I'm hopeful for the future.
I could really use prayers as I start this new adventure. Love you all. Especially my husband and son for walking this road with me and adjusting with this new lifestyle.
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