As we expected, Sunday night was a very, very rough night for Lindsay. She was up most of the night vomiting and trying to find a comfortable position to sleep in. I felt like I was in a horrible fitness dream where I was doing situps all night due to her moving the bed up and down! Haha I joke but in all reality it wasn’t funny at all. I felt terrible for her and the worst part was there was nothing her or I could do to ease the pain or find comfort. In all, I’m not sure either of us slept much that night and it was incredibly frustrating.
We were stuck at this weird intersection of balancing nausea, pain pills, back pain, comfort, dehydration and gastrointestinal (GI) issues. Here was what it felt like in our house for pretty much the past week:
Take pain pills to ease the back pain but cause more nausea, GI issues and feel “off”.
Take anti-nausea meds to offset the nausea but cause GI issues and pain because she couldn’t take both at once.
Take no pills to prevent further complications all the way around.
Drink water because she knows dehydration is a huge risk on chemo and these pills but induce nausea.
Eat because her body needs nourishment but induce nausea and cause furhter GI issues.
Don’t move much all day because that’s how to find comfort and ease pain but do so while knowingly causing further GI issues and back issues.
Try to move around to help the GI issues and hopefully the back pain but do so while knowingly causing further nausea and experiencing back pain.
There are other scenarios that we were faced with but as you can see it’s like plugging holes on a leaky raft. We’d fix one thing just to turn around and cause more issues or have a flare up in something else.
I’ve actually been having a hard time wanting to get on here to update the blog because things have been a very rough go lately and frankly are getting to be pretty personal so it’s become difficult to want to share much of our experience. However, as Lindsay reminded me, we created this for a reason. We want to update those of us who are praying for us, thinking about us, love us and have been so supportive updated with the most current state of our situation. As I’m sure many of you have seen in the past few days, there has been a few postings on Facebook asking for extra prayers which would be due to Lindsay being hospitalized again. Anyway, lets start where we left off and catch up to today, sound good?
We got home the week of Thanksgiving and she was battling pain more or less all week before she had to succumb to the pain on Thanksgiving morning around 3am. We were up pretty much the entire night anyway but decided at 3am that we were going to have to go in to the hospital so we called my Mom who came down to take care of Bentley and we took off. When we got to the hospital she was in excruciating pain, she rated it an 8 or 9 on the pain scale (out of 10)–right up there with child birth she said. I was heartbroken, there was nothing I could do as I stood by and watched her writhe in pain until they were able to get her some IV Dilaudid (Hydromorphone) and it tore me up. After they got her pain somewhat managed she was finally able to doze off in a few hour spurt at a time. Never really, truly, soundly sleeping but it was rest, nonetheless. We were fortunately able to get out of the hospital around 5:30pm on Thanksgiving night so we were able to return to our house and have a makeshift Thanksgiving dinner with family.
The happiness of being around family and home was short-lived as the pain returned that night in the middle of the night. It wasn’t near as bad but it was still pretty significant and put her in obvious discomfort. For the sake of time and long, repetitive typing; things went on like this for more or less 2 weeks. She was in pain or just super uncomfortable almost constantly with only a few days or sometimes only hours of comfort despite upping her dose of Fentanyl and Dilaudid. So yesterday when she met with Dr. Kumar to discuss her status, they decided that due to needing a blood transfusion and her considerable pain that admitting her to the hospital was the best move for everyone involved. So yesterday after she got fluids at the cancer center they admitted her into OSF St. Joseph here in Bloomington.
As I type this she is currently laying in bed with cool rag covering her eyes, attempting to rest while she has a window of opportunity. Hospitals take great care of you but man do they have a lot of poking/prodding/disturbing that they have to do when you get here! We’ve had more great nursing care but we’re still having a hard time finding the right balance of pain meds vs. GI meds vs. anti-nausea meds. After we got her they put her on what they call a “PCA” which is a button-activated release of a small amount of pain meds. They put her on a dose of that that seemed to do little-to-nothing at first before they bumped it up to a continuous release of 1mg/hour. That got her pain under control and if you didn’t know we were in the hospital, you’d think she was back to normal. However, after being on that for a while she (and I) made the decision that if we could get off the continuous dose, it were for the best so we could get out of here sometime soon. So they removed that and went back to the “as-requested” approach which works ok when she’s awake but if she dozes off and misses a press of her button (she can hit every 10 minutes) then she fell behind with pain. That happened throughout the night off and on so this morning we went back to a .5ml/hour continuous release accompanied by the “as-requested” button activiated dosing. They’re also doing various things to help with her gastro-intestinal issues which we hope to have figured out by later today. She just did an X-Ray on her abdomen to ensure there is no blockage due to the disease progression that was found last CT scan. If there is blockage, we will have to discuss our options to treat that so if you could all pray that the X-Rays come back showing favorable results, that would be awesome!
Thankfully I think she is finally somewhat comfortable and our son should be here shortly with my Mother-In-Law to help cheer her up! Who couldn’t cheer up looking at his adorable self?! 🙂 Sorry if this post was uneventful or not very light-hearted but I’m just wore our with the rollercoaster ride of all this and as I said before, I wasn’t inspired to write but knew I needed to. Kind of like when you had to write essays in high school, right? 😛 Again, we cannot thank you all enough for your continued love, support and well wishes via social media, in person or in any other way (through friends/family). You all truly keep us positive when it’s so easy to get down/negative so we thank you. Keep us in your prayers and we will update this as soon as we can!
On a very good note, the Tazemetostat trial in Cincinnati at the Children’s Hospital is to open either the end of this week or early next so keep praying that we pass all the screening and get into that so we can get started right away! We need it!