Week 37-40
Week 37 to 40
A long span here and lots to fill everyone up on. Weeks 37 and 38 were standard weeks of regular chemo treatment no major event to report out we thought it was normal average pain and nausea. By the end of week 38 with the pain increasing an becoming unbearable as it had been increasing all throughout the week. Pushing through the weekend with increasing Pain I opted to send a note to my oncology team. Their response was clear they wanted me to go to the ER immediately, so we did. The First priority was getting the pain under control then they ran a series of CT scans and one MRI if I remember correctly, the result narrowed it down to something was going on with my stent by this time my Bilirubin number were climbing I had gone jaundice and my bilirubin number were now going off the charts.
IT was clear they were not going to let me go and thus over the next 48 hours they refined their assessment and prepped me for an emergency surgery. The problem was the tumor which by now we know is very aggressive had grown into and started blocking off my stent because of the blockage it had created an environment for an infection to grow and it grew an got messy very fast I won’t go into the details, but it was approximately 75% of the stent was blocked and with the infection running ramped we were very lucky we caught when we did before it came irreversible. We are currently on an invitro course of Antibiotics to treat the infection. The Doctors were taken back by the stent and infection as they both were much messier than they thought. The operation put a new stent since the first one was compromised. We remained in the hospital for 5 days before they would release me, I was released, still a lot of pain but spent the next bit of time recovering we then saw Oncology on Friday or the week of the 40th.
Warning this next part will tough to hear.
The fact that this happen is not only bad new but VERY bad news. This has dramatically affected out time in a negative way. The Doctors cleared it up this time, but IT WILL happen again unless we can get the Tumor under control. AS most you know we have basically been doing damage control and fighting off the tumor as best we can try to keep it at bay. This is a strong indication that we are losing the battle faster than we thought.
So where do we stand. This has forced us to move to the next level of chemotherapy treatment. This is our last line of defense after that we have only have clinical trials. This is heartbreaking, as we are now in Very serious Trouble. If we cannot get positive results from the next level of therapy or the clinic studies, my Oncology Doctor has given us give us 6 months. Keep in mind that we are not giving up on fighting to keep that timetable at bay and push it out as much as possible. This has been very hard for us to deal with but now we know we have a timetable the clock is ticking, yes, we have the next level first and we pray that will help us but we also have to face reality that in 10 months we have barely kept it bay and in many ways have not as it continues to grow even with treatment. I will do my best to keep you informed as things progress, we are desperately hoping the New Treatment, or a clinic trial can buy us some more time but have to be realistic on the result we have seen throughout the treatment.
On a plus side Neurology has gotten me my custom-made boot which has helped me be more stable on my feet we still use the cane even when we have boot on but we have to be grateful it is helping. I have 3 rounds of imaging to complete in Late October and then we will meet with mu Neurology doctor again to discuss results
I love you all Brian
