I’ve been a bit derelict once again in my updates. I promise it’s me not you. The reality is I haven’t wanted to write until I could bring together how things are going and get my head around it. If I don’t get a theme or catalyst for the update it just doesn’t seem to work for me to get anything written. I’ve retold these results yesterday a dozen times to family and close friends, so I feel like I’ve been able to wrap my mind around it once again.

As a family we’ve been going a bit stir crazy being in super isolation. We gotta do it as if I catch the bug it’s worse that most. I feel bad for my kids that miss out on friends, cancelled activities and vacation time. Stinks all around, but given what is being told to us, we just can’t take a chance. I feel bad the kids have to be around me all day as well because they see more of the rough times than when they were at school and activities fo ra good portion o the day. They see it all rough and raw. Hope you are all doing ok with your social distancing, isolation, and the economics due to being forced to stay home.

Currently I’m still in Phoenix having just finished a long day of testing and meeting with the Clinical Trial doctor at the Mayo Clinic.Not an ideal time to travel, but the testing is required per trial protocols so I’m here I traveled with gloves and lots of sanitation, and as the plane was maybe half full the flight attendants spread us all out. I have an extra day here in Phoenix, which given the nice weather isn’t the worst thing. Fortunately I’m staying with great people and they tolerate my extended stay.

They question of course is how is the cancer journey going. The short version is not all that well. I am still on the lowest dosage of the trial med (Avapritinib) since January and it’s just not cutting it. Tumors are continuing to grow and pain increasing along with it. I’m forced to take daily pain medication to function and often feel continuously fatigued because the pain wakes me up often throughout each night. Pain really sucks.

We had a full battery of tests yesterday. ECG, CT, then an MRI and of course 5 vials of blood to get bilirubin, CBC and other research needs. I came into this appointment not knowing what to expect, other than I’ve felt terrible. We had tried over the last month a bile duct opener called Ursodiol which did exactly nothing to bring my bilirubin down. In fact it just kept going up as always. In the last 3 days of the cycle, they switched me to a liver steroid called Prednisone to see if that approach may do something more. Something at all would be more, but I didn’t say that.

CT scan verified growth all around, and every new or enlarged pain center was confirmed to be associated with larger tumor masses. My breathing is interrupted because of pain on both intake and exhale. My blood pressure and heart rate get elevated quickly as result. The brain MRI showed possibly a little issue between lobes (corpus collosum) but only at a level recommending it be checked again in 3-6 months. There were some other more minor issues with calcium levels and white blood cell count, but those were pretty minor. Lots of nothing surprising and generally not favorable news.

Here’s the kicker though, bilirubin count in the blood test was down to 1.1. Wait, what? To put it into perspective a week ago I was at 2.7, and 2.2 the week prior. Headed in the wrong direction I really didn’t think Predisone would make that quick of an impact. I did everything I could to help the blood test with lots of hydration, no opioids/narcotics for the couple of days prior (harder than it sounds), and even walked around the clinic campus beforehand because I had some extra time.

That was the positive takeaway. A glimmer of hope. As in Dumb and Dumber level “you’re saying there is a chance” level of hope. Now I have to prove it’s not an anomaly. Blood tests each Monday (locally at home) to verify if I can keep the bilirubin number under 1.8. If I can, I can go up in the trial medication dosage to hopefully and effective level. If it goes back up, then I’m likely to be removed from the trial. At this point with the pandemic situation, all other clinical trials have stopped taking new patients.

So this is a biggie once again, but bigger than ever. The next two weeks is mucho importante if i haven’t spelled it out well enough. I need this chance to blossom with this Predisone providing some much needed correction to my liver issues. Let’s take the chance and run with it.