Still Walking Through Mud and Hoping for a Shift Soon

The fatigue is amazing ... I wake in the morning and hope I will feel normal as I get moving. Day after day I just can't believe how heavy my body feels. I describe it as the feeling of having concrete in my veins. I am slurping coffee, trying to feel some spark. But I really don't. 

I love having people over, especially the grandkids. I just crave being able to lay down most of the time I get with them or anyone else, however. And I hate it. 

I am going to an Acupuncturist (Joe at Springs Chiro). He promises to get my Chi moving. I haven't noticed any changes in about a month of going weekly. I see a Lymphatic Massage person who does this electrical lymph massage invented by Skye whose wife I used to see in So. Cal. I felt a bit lighter on my feet the first time I went to her but nothing really the 2nd time (Lisa). I've been going to a massage therapist once monthly - mainly trying to get some relief from what I describe as a pinched nerve in my scapula (Tanya). I need to tell her to take it easy on me a bit; I'm too sore after going to her. She may have helped a recurrence of an old shoulder/upper arm problem that I think was reactivated when I had my port-o-cath replaced about a month ago. I still go to Etio Chiropractic every other week for overall health and in the hopes it helps keep me centered. 

Add all this to a full day at the Anschutz Cancer Center in Aurora every 10 days and I can see more clearly why I feel too busy. Labs, medical check-ins, IVIG for my immune system, PET Scans every 8 weeks, trial check-ins including turning in my paperwork and records.

And I'm getting really sick of the traffic that I've been dealing with a lot. 

I still usually attend weekly Al-Anon meetings and man the Service Center for a few hours a month. We've both been too busy to meet up with my sponsor lately. Andy and I still host our Meal Group from our church (New Life Downtown) but now are cutting down to once monthly for the summer and will host a brunch and game day next Sunday after church. We love getting to church. Today was so precious - with Junie snuggling up between both of us, Stiles wanting to sit with me, and Eden and Iris praising their hearts out behind me so I could hear their voices singing away. I love worshiping with Hailey and Cam when he can be there. I felt absolutely terrible today but was so glad I make it to church. 

It is just such a head trip to be unable to plan. We've cancelled lots of plans or shortened events. Most of the time I push through and then collapse. I feel badly for my hubby; he is watching his wife get weaker and weaker right now. We have no idea if this fatigue will lift; the clinical director at the hospital told me this is the #1 reason people drop out of the trial.  I don't know what my other options might be. 

Aside from the fatigue, there appears to be "disease progression" and "B-symptoms" such as some night sweats. I didn't feel comfortable moving the PET scan to only 5 weeks from the last one so we are waiting for the scheduled 8 week one 7/8. The lymph nodes are big and hard and I still look weird, but not as weird as I did. The poor APP (Advanced Patient Provider - a Physician's Assistant). She looked completely bewildered when I didn't panic. I have had all these symptoms before and, after praying, realized I don't need to react in fear. We shall see soon.