Just an update
Getting some requests for an update so here's a bunch of the latest medical stuff :) - slog through as you desire!
Done with round one of the chemo for my lupus! The infusion two weeks ago went smoothly, no allergic reactions to any of the meds they gave and a huge blessing was having a room on the infusion floor all to myself! Jim teleworked from there and had plenty of room to spread out his stuff. We were there for about 6 hours, so not too bad. And I had soy Pumpkin Spice Latte as a pickup me afterwards. Win!
The post-chemo recovery wasn't horrible. That day and the next I felt very much like I usually do after my previous Benlysta infusions (just tired and a little sick feeling). The following two days were pretty rough with nausea and fatigue and just feeling BLAH. We changed my nausea med and it worked better for me. A good friend of mine who went through cancer this year and last gave me some great tips and saved the day with the suggestion to eat toast. Toast tasted good and I went through a lot of bread in two days :)
Each day I've gotten further from the infusion, I have felt better - and that's exactly what should happen so that's good news. In fact, I've noticed that certain joints that were giving me a lot of problems are almost pain-free now and my fevers haven't been running as high. These are all good signs and we hope the next infusion (in two weeks) will go the same.
We also started to taper me down from the high dose of steroids I have been on for almost 3 months now (!!!) On Monday evening, I did the planned taper dosage and went to bed. When I woke up, my head and neck were shouting at me and my head was SUPER pressure-y, I could barely here out of my left ear. As Jim and I talked over breakfast, I was having a lot of trouble forming sentences in my head and when I did, it hurt.
I feel asleep on the couch and woke up with numb fingers and toes and gums (yup in my mouth). And I felt awful. Jim cam home and per Rhemo Doc's recommendation, we went to the ER. Blood work showed elevated white blood cells, which I shouldn't have because of the chemo, so they started worrying that maybe I had bacterial meningitis (yup, back to that). I ended up having three lumbar punctures to get some spinal fluid. Unfortunately the first attempt didn't go well - I ended up with an epidural! The doc got the numbing medicine in the wrong spot. Let me just tell you it's VERY scary to be lying on your stomach under an x-ray machine with a needle in your back and your entire bottom half goes numb and and the docs and nurses all start working fast and yelling things and such. I regained feeling within an hour, but still. I am so not a fan of lumbar punctures.
Due to the trauma from the first puncture, the second puncture wasn't good (there was some blood in my spinal fluid). So they admitted me for observation.
The next day, they did a slew of tests because the blood in the spinal fluid. (it can indicate some serious things that need to be checked pretty quickly). I had a third lumbar puncture and the blood had cleared enough to allow then to use it for their tests. I also did four hours of MRIs and CTs mapping my brain and spine. That was one of the most challenging things I have done. My back really hurt from all the punctures and I had to lie flat on it and hold all my muscles as still as I could (hard because I have tremors in my limbs right now). It was hard. And I cried. The nurses were SO incredibly kind and supportive and empathic (it was a really long scan for them too) and we got through it. And Jim brought me dairy-free frozen yogurt as my reward for getting through it :).
The good news is that all the scans were normal enough for them to comfortable with sending me home since I was stable - even though we still don't know why my head pain is increasing or where the numb extremities are coming from. We ruled out some stuff I was worried about, stuff that could cause permeant brain damage and such.
It's very humbling and scary to realize that you aren't thinking or processing like normal. I can feel my slowness and hear my mistakes and I know they are mistakes but I still make them. I am glad that my brain and spine look okay and that hopefully once we get the inflammation in my head to go down, all my cognitive thinking stuff and motor skills will return to normal.
I am glad to be home recovering from the stay - I'm pretty banged up and shaking by all the tests so I've been doing a lot of icing and stretching of those muscles.
The nurses at St. John's Methodist were outstanding. I am so thankful for those that choose to go into the nursing profession and show genuine empathy and care for their patients. It makes a huge difference when you're lying in a hospital bed, scared, and have no idea what's going on to have that comforting hand to hold or explanation given or just an encouraging smile, so thank you to all you nurses!
I have an appointment with Rheumo Doc on Monday - again thankful for the timing of all of this - I already had that appointment schedule before all the hospital stuff this week. Thank you Lord!
So until then, I think I've regressed about a month for what I am able to do around the house since the head/neck pain is pretty intense. I feel like every hour I have to tell myself to choose joy (James 1:2). My friend visited me yesterday and I really wanted to spend some quality time with her and couldn't due to the pain levels. As I lay there on icepacks, I realized, 1) I've made more progress since my initial hospital stay than I realized (sometimes we can't see something until it's taken away and then we see what we had) and 2) I could choose to be joyful that I at least got to see my friend for a bit and hear about the awesome things going on in her life.
I am thankful that God is allowing me to choose joy and to be thankful when it's hard. I know He is helping me do that because I have so many moments where I just want to be done, I am definitely not getting through this on my strength, but His and the amazing people He has put in my life, like my husband. This has been a hard journey and it's not over. But I also know that He will continue to sustain me:
"But you oh Lord, are a shield around me, My glory, and the lifter of my head." Psalm 3:3
Done with round one of the chemo for my lupus! The infusion two weeks ago went smoothly, no allergic reactions to any of the meds they gave and a huge blessing was having a room on the infusion floor all to myself! Jim teleworked from there and had plenty of room to spread out his stuff. We were there for about 6 hours, so not too bad. And I had soy Pumpkin Spice Latte as a pickup me afterwards. Win!
 |
| All hooked up to the port. The steroids have given me a very full face, it's actually called "Moon Face" but we call it my chipmunk cheeks :) ) |
The post-chemo recovery wasn't horrible. That day and the next I felt very much like I usually do after my previous Benlysta infusions (just tired and a little sick feeling). The following two days were pretty rough with nausea and fatigue and just feeling BLAH. We changed my nausea med and it worked better for me. A good friend of mine who went through cancer this year and last gave me some great tips and saved the day with the suggestion to eat toast. Toast tasted good and I went through a lot of bread in two days :)
Each day I've gotten further from the infusion, I have felt better - and that's exactly what should happen so that's good news. In fact, I've noticed that certain joints that were giving me a lot of problems are almost pain-free now and my fevers haven't been running as high. These are all good signs and we hope the next infusion (in two weeks) will go the same.
We also started to taper me down from the high dose of steroids I have been on for almost 3 months now (!!!) On Monday evening, I did the planned taper dosage and went to bed. When I woke up, my head and neck were shouting at me and my head was SUPER pressure-y, I could barely here out of my left ear. As Jim and I talked over breakfast, I was having a lot of trouble forming sentences in my head and when I did, it hurt.
I feel asleep on the couch and woke up with numb fingers and toes and gums (yup in my mouth). And I felt awful. Jim cam home and per Rhemo Doc's recommendation, we went to the ER. Blood work showed elevated white blood cells, which I shouldn't have because of the chemo, so they started worrying that maybe I had bacterial meningitis (yup, back to that). I ended up having three lumbar punctures to get some spinal fluid. Unfortunately the first attempt didn't go well - I ended up with an epidural! The doc got the numbing medicine in the wrong spot. Let me just tell you it's VERY scary to be lying on your stomach under an x-ray machine with a needle in your back and your entire bottom half goes numb and and the docs and nurses all start working fast and yelling things and such. I regained feeling within an hour, but still. I am so not a fan of lumbar punctures.
Due to the trauma from the first puncture, the second puncture wasn't good (there was some blood in my spinal fluid). So they admitted me for observation.
The next day, they did a slew of tests because the blood in the spinal fluid. (it can indicate some serious things that need to be checked pretty quickly). I had a third lumbar puncture and the blood had cleared enough to allow then to use it for their tests. I also did four hours of MRIs and CTs mapping my brain and spine. That was one of the most challenging things I have done. My back really hurt from all the punctures and I had to lie flat on it and hold all my muscles as still as I could (hard because I have tremors in my limbs right now). It was hard. And I cried. The nurses were SO incredibly kind and supportive and empathic (it was a really long scan for them too) and we got through it. And Jim brought me dairy-free frozen yogurt as my reward for getting through it :).
The good news is that all the scans were normal enough for them to comfortable with sending me home since I was stable - even though we still don't know why my head pain is increasing or where the numb extremities are coming from. We ruled out some stuff I was worried about, stuff that could cause permeant brain damage and such.
 |
| Eating Tex-Mex to celebrate our four month anniversary - I know it's only four months, but it's a happy moment to remember and celebrate :-) |
I am glad to be home recovering from the stay - I'm pretty banged up and shaking by all the tests so I've been doing a lot of icing and stretching of those muscles.
The nurses at St. John's Methodist were outstanding. I am so thankful for those that choose to go into the nursing profession and show genuine empathy and care for their patients. It makes a huge difference when you're lying in a hospital bed, scared, and have no idea what's going on to have that comforting hand to hold or explanation given or just an encouraging smile, so thank you to all you nurses!
I have an appointment with Rheumo Doc on Monday - again thankful for the timing of all of this - I already had that appointment schedule before all the hospital stuff this week. Thank you Lord!
So until then, I think I've regressed about a month for what I am able to do around the house since the head/neck pain is pretty intense. I feel like every hour I have to tell myself to choose joy (James 1:2). My friend visited me yesterday and I really wanted to spend some quality time with her and couldn't due to the pain levels. As I lay there on icepacks, I realized, 1) I've made more progress since my initial hospital stay than I realized (sometimes we can't see something until it's taken away and then we see what we had) and 2) I could choose to be joyful that I at least got to see my friend for a bit and hear about the awesome things going on in her life.
I am thankful that God is allowing me to choose joy and to be thankful when it's hard. I know He is helping me do that because I have so many moments where I just want to be done, I am definitely not getting through this on my strength, but His and the amazing people He has put in my life, like my husband. This has been a hard journey and it's not over. But I also know that He will continue to sustain me:
"But you oh Lord, are a shield around me, My glory, and the lifter of my head." Psalm 3:3
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