The phrase I would for today would be “common sense.” When I go home, I can live, but I have to be smart about it. I have to pay close attention to how I feel each day. I have to continue working out my legs. I have to continue my nutrition and watch out for what I’ve been warned to avoid – like anything out of machines such as fountain drinks, shakes, soft serve, etc. I don’t have to wear my mask everywhere, but I need to carry one around at all times and wear it based on the situation. For example, if someone is coughing, I put it on. Basically, it’s common sense.
Joel wanted to know what we do when the boys are sick. Again, common sense, but there’s more. Viruses are a big deal; I have to avoid them. So, my doctor said that if any of us seem to be getting sick, we have to get a RSV swab. It tells you if your sickness is a virus. If it is, mask and distance time; if not, it’s just be careful time. Also, I’m going to have to talk to our pediatrian because my doctor says viruses have to be treated when currently, doctors usually don’t and let them run their course. The problem is that I cannot be around anything “live” like a virus.
I have to stay on pretty much all of my pills for at least a year; some for even more time. We’ll see as I go. The doctor told me today that Gleevac is a year. Yippee (sarcasm)! So expensive chemo drug for a year on top of everything else. I know Joel says not to worry (so I really will try not to) but man, hello co-pays. Several of my drugs have co-pays over $100. Gleevac went up to $125 and it was $100 last time I had to take it. Then, I can’t work to help pay; it makes me feel a little like a burden, but I know Joel would say I’m wrong. It’s just not what I’m used to, but this is one of those situations that is life-changing. With the Gleevac being a chemo drug, we really need to keep Jacob in his own bathroom; ideally, I should have my own, but I will keep it clean for Joel to use as well; he’s an adult and can be careful.
My blood work is good; my platelets are lower than last week but no one’s worried. There’s little else that’s new. I asked about mom as my caretaker and both she and the doctor agreed that once I can do all for myself, she can go home. However, she is not required to stay with me anymore, but I know she will.
So, here’s where I stand… tomorrow, we finally get my fixed car back. Friday is blood work. The weekend is packing. Monday is blood work, chest x-ray, pulmonary test, and an injection (I have to get all my vaccines again over the next year – yuck) – and my last PT. Tuesday is my 90 days bone marrow biopsy (someone tell Lidia to pray for me – she’s my procedure angel 
Wed. is blood work and my last visit with the doctor until April. At that time, I’ll get all the release paperwork. Thursday and Friday will be final prep. Joel’s planning to come with Jacob Friday night and then we’ll all leave Sat. morning. I have to say that I’m excited – and so nervous. I have to find another “new normal” when I get home; we all will, but at least I get to be home again with my family.
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So much to digest and Im not the one going through it. You are so strong! God bless!
Yes Jamie I will be praying for you, will call you early Tuesday
morning. We are so happy you are comming home, we are planning
Alyssa’s shower for April 3rd, and are hoping you and Bonnie
will be able to join us. love Lidia
Thank you and as long as no one gets sick, I’m totally there for the shower.
I’ll be praying too.