I am not good at giving updates…
I’ve started an update multiple times. Can’t seem to finish or post it. Things have been difficult – these aren’t easy nor fun to write – especially when things aren’t going well.
In Feb, we spent 8 nights in the hospital – from 2/14 to 2/22. Went back on 2/23 for another Fulvestrant treatment. We’ve been back and forth, at least a half dozen times since just for random appointments or additional Fulvestrant treatments.
The last month has really been a struggle with pain management. We left the hospital with opioid pain medication. Its was questionable in it’s effectiveness as we were on a round-the-clock regimen, and as a nasty side effect – Stef was in the clouds. Irritable, incoherent, confused, dizzy, emotional, physically trembling – all different words to describe things at different periods.. Things seemed to get worse with those symptoms, but pain was also getting worse.
I was in regular communication with the doctor team and we took her off of the opioids and dropped down to Tramadol – a pain med which she had also taken in the past. We were able to maintain comfort at a 50mg dose, while alternating with 600mg doses of Ibuprofen (6hr alterations/cycles).
50mg increased to 75 as the pain increased.
We left the hospital with an in-home nurse regimen as well – once per week visits.
This past weekend (3/17-3/19) – I’m not certain what type of scheduling issue came up – however we didn’t have a nurse visit, and Stef’s pain started to rise. The pain medication folks had given us a prescription for 100mg Tramadol, with Oxy as a support (as needed), so I knew we could go to this if needed.
What was this pain from?
We also observed one heck of a knot forming on her lower back – near the end of her tailbone. What was this? Well – this was the source of her pain. Any time she changed pressure – sitting, moving – this was hurting very badly. I was terrified that it was tumor growth.
We increased to 100mg Tramadol, every 6hrs to try to stay in front of the pain. I did give her some oxy at one point as well.
Early Monday resumed communication with the doctors office regarding this.
Tuesday night – quite late – something struck me about this new pain, and what this “knot” looked like – I consulted Dr. Google. I believed we had a cyst. A massive cyst.
I pushed further communication with the doctors very early Wednesday morning and established an appointment for 8am Thursday (3/23).
Wednesday night – had the fun of dealing with the suspected cyst rupturing. That is a 2-4am adventure that no one should have..
Wake up time was 6am, so we could get to the 8am appointment – which of course, it was confirmed that we had a cyst, and little more than that. In hindsight – I actually wonder why further cleaning wasn’t done – but then again, that’s not what their specialty is. We did leave with an antibiotic prescription and a few gauze pads and first aid tape.
We have also moved a few appointments around – we’ve pulled a CT scan up from 4/6 to next Monday, 3/27. We’ve also added a consultation with a “palliative radiologist” – basically this for radiation therapy designed to reduce pain.
So – back to pain management – those 100mg doses she had been getting – as I understand it – 400mg is the MAX amount of Tramadol that an individual can have within a 24hr period. The MAX amount for a 300lb man, and our Miss Stefanie was having that amount. Side effects of Tramadol are a heck of a list – dizziness, trembling, confusion, unsteadiness… All sounds pretty familiar. And having her on max dose.. Ugh..
To state a bit of an up-swing – since this cyst has burst – and since Stef’s mother and I have been changing the dressing and keeping it clean – her pain level has dropped considerably! I’ve cut her Tram doses in half, and entirely cut out the Ibuprofen needs. Praying PRAYING PRAYING that we can keep it low, even lower it further, while keeping her comfortable, and hopefully bringing her out of the fog (and are dancing on a delicate line while being aware of Tramadol withdrawl symptoms)…
I’m tremendously worried about our next steps – post CT scan on Monday. I am PRAYING that it shows that things have improved with the tumors and that we can continue treatment, or there is another treatment option for us. Stef’s doctors have observed her “trend” on the pain meds and are very concerned. I’m not going to say more about that here.
We have an in-home nurse visit later today. I’m hoping that over this weekend I can get her outside a bit to enjoy some sun, even for just a little bit…
I’d also like to send a BIG thank you to everyone for their continued support and prayers. I can’t properly thank everyone for what they’ve provided and helped with – I completely lack the words, however our family is GREATLY appreciative.
Please continue to send thoughts and prayers that her pain stay low, we can get her out of the fog, and that this CT scan shows positive results!!!