Pain report and upcoming scans

I’m happy to report that my pain pump is working well. It seems to be the right dose now and I hardly have to take any oxycodone or use the extra medicine from the pain pump. Once we get through the refill process and things seem ok, we’ll start talking about taking another patch off.

Tomorrow, Wednesday, I have an appointment at 1 pm to have my pain pump refilled. I know the procedure and what is coming , but I’ll be honest, I’m very scared. I’m scared about pain. Even though the Dr. says I shouldn’t have any pain from the refill, I am very scared. Ever since my time in the hospital in severe pain, my brain thinks about things differently. I’m struggling with severe anxiety, about everything. I felt so out of control in pain for so long, I’m afraid of that happening again.

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Long day at the infusion center yesterday

My trip to the infusion center on Monday was the longest one I have ever had. I was there from 11am – 6:20 pm. My hemoglobin level has been creeping down and yesterday it got low enough that we had to call the Dr. before starting chemo. He approved chemo because all of my other labs were ok. However, he ordered a blood transfusion for after chemo. That’s why I was there so long.

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Website troubles and the upcoming week

I’m sorry if you were not able to access the website last time I posted. It’s been fixed and you can see the post here if you missed it.

This week doesn’t involve too many appointments. Monday, I will be at the infusion center for a while. Right at the end of my time there, Dr. Otsu is coming to meet me to adjust my pain pump again. Please pray for the timing on this, so that I won’t be waiting around for a long time. He’s supposed to come around the time I’m usually finishing up. I’m anxious about the timing, which is dumb, because I’m not in control of it and can’t do anything about it. It’s just another thing out of my control that makes me anxious. I also have a telehealth appointment on Thursday afternoon with my Palliative Care Nurse practitioner.

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Weather, pain, breathing, life….

The weather has been lovely here…but the mid to high 80’s without any breeze has been a bit to warm for us. It has cooled off today and we are thankful for that. We love being able to escape to our back deck.

I have been able to visit with a few friends lately, including Jim and Judy Jansen who were my second parents growing up! It’s nice to be able to spend time with friends when I am up for it. Most of the time it’s a last minute thing.

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Pain update

While I was at the infusion center today. Dr. Otsu came by and turned up the meds in my pain pump as it’s still not quite right. I have a feeling we will be tweaking it a lot as we try and wean off the last 150mcg of Fentanyl patches I still have on my back. I hope it’s worth it in the end!

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Just call me 2127

Yep. 2127 is my name…..I mean room number. Actually I can now say it WAS my room number.

I am officially discharged from the hospital. My surgery was last Tuesday at 12:30ish and it is now the next Monday. Ugh!

I can’t believe I was in the hospital an entire week. That is crazy!

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Why Did I Have Surgery?

I have asked myself that question quite a few times this week.  At first I was really concerned we had made a bad decision,  but I still do think it was for the best IF I can get through this!

The problem was, is that my body was in a lot of pain and I kept having to go up on my pain meds,  causing some side effects.  This pain pump delivers the meds I need right to the spinal cord fluid and I can add a bolus (more meds. to help with breakthrough pain) 10x a day if I need it. I can go up much higher with this pain pump because it is so diluted, than with oral or patch pain meds, without big side effects. (At least that is what it is supposed to do.)

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Managing Pain Meds.

The Anesthesiologist that did my surgery, Dr. Otsu, said surgery went well on Tuesday. He is the one who I will be working with to control the medicine in the pain pump. He took off half of my Fentanyl patches during surgery and it took about 24 hours of working with doctors, nurses and pharmacists to get the pain back to where it was manageable. That was a long 24 hours of severe pain!

I messaged my Palliative Care Dr. in the early afternoon. (Her and the ARNP she works with are amazing!) I’m so glad I did. Things moved faster once they were part of it as they are used to dealing with the large amounts of narcotics I am on for pain.

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