Clear direction to cytotoxic chemo?

Friday afternoon I was so miserable that I made a call to the oncologist's office at 4pm. I explained to the receptionist that I am a patient of Dr. Mellott's, on something of a "watch and wait," and that I have new and worsening symptoms that I need help with. She explained that Dr. Mellott would be out of town this week but that she would call her to see if she could do something. I was a bit amazed by the effort she put in for me. It makes me emotional to think about. They arranged for this incredibly busy doctor with over 1000 patients to come in early Monday morning, before boarding a plane. 

By Monday, I realized it was very clear that the doctors may have known something who have said over and over, 

    "When this thing takes off..."

    "This is not the type you want to have..."

    "Wait, but not TOO long..."

The rash is so strange. It comes and goes - mostly worse in the afternoon and best in the morning. The itch is incredible. I feel uncomfortably hot but chilled at the same time. Baths help a bit and then I put hydrocortisone cream all over when I get out. I can usually make it through a few hours of something social or whatever after this. A few nights, I've been completely down, just needing to go to bed. Last night, after having our church group over for a few hours, I sat down and it just exploded. It's raised, red, and angry. 

As usual, there are people who are confused about how I'm doing. I'm not a person to get on the phone and sound down. I get emotional about where I'm at if I talk, but often I appear totally OK, so I have people openly questioning what is happening. Heck, I am constantly questioning what is happening. 

The other new symptom is the ache and pain that comes up on the left side of my neck. In desperation I put on Salon Pas patches and think they help. The doctor prescribed Norco, which is backordered, so I took 3 Advil yesterday and it broke the pain. Since it is usually worse in the evening, I've also noticed a glass of wine helps dull the pain, which is probably not the smartest technique but the relief is so welcomed. I go to sleep early, usually to wake up during the night, unable to go back to sleep. Sometimes the neck makes it impossible to be comfortable as a side sleeper. It's a very ugly, dull pain that can make me feel panicky. 

We went to the oncologist bright and early Monday morning. Andy went with; I usually do my appointments alone. We all agreed that it's time to throw CHOEP at this, which was the standard of care 7 years ago and still is now. I could go to a T-Cell specialist and I asked about that. Essentially that is needed if I want to try a clinical trial. Many people would encourage that. They don't fit for me right now, however. Not to be morbid, but I need to be home and maximizing my time with my loved ones. I don't want PET scans every 2 month, restrictions on what I can take in terms of supplements and herbs, and other things I have found about traveling to Denver for long days unpalatable right now. 

The thing about the appointment Monday was I felt a sense of clear direction and the hope of relief from the current symptoms. The plan was to do all the testing needed and go into the hospital Thursday or Friday for a few days, as a precaution. Then CHOEP every 21 days, sickest during the 2nd week, loosing my hair...the whole 9 yards. 

That day they got me in for a CT scan of the neck, chest, and pelvis. I did labs for the oncologist and labs for my virtual D.O. appointment next week. That appointment was to prepare me to go to California for 2 weeks of IVs in January. The day alone, running around doing all this thing was actually peaceful for me. That could have been influenced by the 300mg of Melatonin I took for the scan. It can help protect from the radiation and contrast. It doesn't make me tired but it's almost a peaceful high. And I usually nap great later. 

To our surprise, my labs look good - she was especially concerned if my TSH and calcium levels were high. If so, she'd want me admitted right away. They are normal. Then the CT scan came back with a new tumor between my lungs and heart - but it's not huge. The lymph nodes on the left neck are bigger, but not as dramatic as they appear when looking at my neck. 

The rash comes and goes so much that sometimes I question if it's improving but then last night it was bad again (picture of my back above). But the pain in my neck has been better since yesterday morning.

My prayer is for clear direction. I'm so tired of steering a ship that doesn't have a clear destination. And I'm tired of feeling in limbo. 

I read last night that the current quoted statistics is 18% chance the course I'm on will work 2-5 years out. On the other hand, I read in notes from our visit to Dr. Shustov that sometimes we can use a couple rounds of CHOEP chemo to "knock it down" and help with the symptoms for awhile. I guess it's all about buying time. 

Should I ask to try Belinostat again? I felt absolutely terrible on it, especially while getting the infusions. It was actually painful and caused Corrosive Esophagitis too. But it did shrink the lymph nodes that were making swallowing hard and changing my voice. Duvilisib gave me the dangerous rash. I don't think I saw any improvements on Revlamid and felt terrible on it too. How will these problems compare to the famous CHOEP? 

The other night, I made a serious mistake I need to stop doing. In the middle of the night, I was scrolling through reels. One came up and I actually felt targeted by forces not on my side. It was a mom - my age - being video taped while saying goodbye to her adult children. She was dying of cancer and it was heart wrenching. It took my peace away. I fought what it was doing in my psyche but, when I woke up later that morning, the anxiety was through the roof. I need to guard my heart and mind better than that. 

I love Corrie Ten Boom. When the guards whipped her sister, Betsie, Corrie was horrified as she focused on the open wounds. Betsie told her to not look at them, but to focus on the Lord Jesus, as she pulled a bloody, sticky hand from one of her gashes. I am asking God for the supernatural ability to take my eyes off this and to keep them on him. I ask for forgiveness for not believing and expecting that he can heal me at any time. His will really is the best for all concerned, so I need to pray for that only. And to pray for the ability to do my part, faithfully. And forgiveness for my laziness in so much of it. Kinda sounds like the Serenity Prayer.