I went to have my kidney and spleen scan which turned out to be “no big deal.” I was just radioactive for about an hour or so while sitting lying still on a bed while the machine took pictures of my innards. Everything looked good.
Thursday morning I went in for my first infusion. They gave me a Benadryl and a Tylenol to start. Then after several attempts at stabbing my veins ( I have horrible veins…they are deep and they like to roll) they got the catheter in and we were able to start the 2 hour drip of “secret sauce.”
Well…I had a reaction. First my chest got really tight, followed by a little dizziness and a whole lot of face flushing. No worries…just relax…than all of a sudden I got huge cramps in my pelvis. It went from uncomfortable to “Oh My God! I think I am having a baby!” They quickly gave me an injection of Prednisone (steroid) and within 5 minutes or so the pain was going away. Just as it was easing up I told them I was a bit nauseous. As soon as they handed me the bag…yep, well goodbye breakfast.
They stopped the infusion and called the doctor. I knew it had to be done one way or the other so while they were talking with the doctor I was telling the nurse that I think I would be ok if the cramps stayed away and to please not send me home just yet. She told me that there were a few others that had been having similar reactions after getting up to use the bathroom…which I had done also.
The doctor told them to give me a bit more Prednisone and proceed but this time at a much slower rate. He said I was going to have a reaction no matter what because I had nothing in me. Give me the steroids and I should be ok…that is what they did and instead of being 2 hours, it was more like 6.
I will not complain, it was very tiring day and it will be repeated every 3 weeks from now on until he says it’s ok to just take injections at home, like insulin, which may be several months away.
The doctor’s have said they want to continue to test me while I get treatment so the cause is still unknown. Now they are looking at genetics as a possibility. Next week, perhaps Monday, I will be seeing another doctor who specializes in Oncology. I will be having a bone marrow sample taken…yep, that one makes me cringe just a little..they will numb my hip and bore into it and scrape or chip off a piece of bone and use it for testing....."Aye Dios Mio!!" ....but I am good with it.
What we know is this : My B- Cells are not functioning properly and I kinda need them....What we don’t know is why. We will find out, soon I hope.
So enough about that…
This week we went up to La Jolla where we put on our wetsuits and snorkel gear and went out in the ocean. This is a cool spot. It has a lot of kelp beds and rock. There are tons of fish and little crusty critters like lobster and crabs and the seals like to hang out there too!
These southern Cal seals are so small and tend not to be intimidating like the stellar specimen of the north. I was hoping to see a few of them swimming around me but the water was a bit murky so only the brightly colored fish really showed up well.
After we got out we went over to the cliffs and tide pools as the tide came in pretty quickly and put on a beautiful little show of spray against the rocks as the sun went down. I can’t wait to go and do it again when it’s a bit clearer.
This is why I love this area. It’s October and we are out playing in the water. The moon has been incredibly bright these last few days and the weather is warm and windy thanks to the Santa Anna’s.
In a nutshell...it was all so beautiful and just what the doctor ordered.
Neil is still awaiting scheduling to see a new doctor to start going over surgery details. They are keeping him stocked up with pills, but we really hate taking them. You can only numb so much and then your brain goes a bit numb too..he is really hoping to get some answers soon and start getting “better.” We have definitely learned about patience that’s for sure!
I will post pictures of our outings soon…the internet is not being very cooperative today! :o)~ (but I did want to update everyone).
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