There is much to share with you, and it has been a long time. I have to be careful on one side not to leave anything important out – and on the other side, not to get caught up in too much detail making this into hundreds (well, dozens) of pages. (I am sure that I can hear both sides right now – one saying “Kim, you could NEVER give us too much detail! Pour it on!” and another on saying, “Yeah, keep it brief. Bullet points, ok?”) So I will try to give enough detail to make it interesting but not so much that you drown in it.
My last blog was actually posted April 26th. I was pretty surprised by that – I had no idea it had been that long. I have not had a very good grasp of time, quite honestly. I haven’t worked since two weeks in early March, before that, not since late January. I thought I was just lazy, too old, out of shape, maybe even early Alzheimer’s? I was totally exhausted, couldn’t get any energy to do anything, my memory was terrible (we aren’t just talking forgetting “what did I come here for?” I couldn’t remember the names of people I knew well, or the simple names of foods or items. They came back, but it was always scary.)
I noted a few blogs back that I had recently been diagnosed with (Here I go again, I can’t remember the name for this disease! I’ll get it or look it up). With PARKINSON’S! Yay me! Anyway, that was assumed to be the answer to the falls and the memory loss and other things.
Then, I fell in the hospital (you might remember seeing that in my very last blog – but it was just a filler.) My ophthalmic oncologist was there and insisted on me going to the ER and getting it looked at since I was refusing an EMT ride. My doctor even told me she would call me later to make sure I went, so I had to go.
This wasn’t a little spill, I had fallen face-first into a trash can knocking it down, smashed my glasses, given myself a black eye. It’s a good thing several people saw me or Sam could have been seriously under suspicion. The ER doctor called and wanted to see us right away. He showed us the x-rays and pointed out the (rather large) tumor in the brain. Whoa! We had no idea. I had been on a medication that was supposed to prevent anything from forming in my brain – but it was only 78 % effective, and I was one of the 22%
We took the x-rays to my general oncologist immediately (like that afternoon) and he said we needed to go to the hospital, now, and get some high-dosage methotrexate. This is what they use to treat arthritis, except they use low-dose of 15-35 mg daily for a 5 day course, repeated for 3-5 weeks with a rest of 1 or more weeks in between. We were given HIGH-dose methotrexate of 1200mg daily with flushing out of the body for the remaining 4-5 days. This was done every other week, and although some improvement was seen, the tumor didn’t disappear or even shrink enough to come close to remission. It pretty much made slow improvement as long as I didn’t stop with the treatments. Obviously, my doctor didn’t feel like it was getting the job done.
So we are now at the Bone Marrow Stem Cell Transplant portion of the treatment. This is a pretty big deal for us. I have had my EEG and breath tests, my brain MRI and my spinal tap, and a bunch of other tests I just can’t remember. I’m pretty sure there were 8 that were in one night.
Yesterday I had my first shot in a series of four (one per day), followed by one today – imagine that! These shots I recall from my first chemotherapy as being insanely painful. Both head-splitting migraines and bone pain that felt like your bones were being broken in your body. This medication is slightly different, but they still warned us about all these possibilities. So far, though, there is nothing. NO PAIN! I realize I have 2 more days. But the last ones started within half an hour or less. This is good. Very good.
Monday will be the insertion of my neck catheter. It is supposed to look a lot like a dialysis machine. It will be used to get the white cells out of my blood, get them into the freezer, and get the red stuff back in my veins. This could be 1-2 days.
Then I wait for a definite day for the chemo. It won’t be long – hopefully day they take the cells, or at least the day after, because I won’t have any real immune system until they go back in, and the chemo has to happen first. And you know the drill – hair loss, nausea (supposed to be better with meds), mouth sores (supposed to be really awful, but we will see) and so on. It won’t be fun for a few weeks – but then I will slowly start to feel better.
As far as my being out of work and dealing with the medical bills, God has been more than faithful and we know that He will continue to be. We have had a GoFundMe created, and received personal donations that have been blessings beyond words. Gift cards for meals have also been so helpful. We are incredibly thankful and humbled by the people God has brought to be with us in our battle.
Come see me – just wash your hands first 😉 I’ll let you know when I am in a room for the hospital, but that won’t happen until they give me a date for the chemo. I’ll need my mind taken off that, I’m sure!! Love you all, near and far. If you’re far, call me or text me. I’ll even be brave and put my phone number here!
Kim 402-502-7636 imagine that!