Hoping "This too shall pass."

I've just been ... getting through day by day. Dr. Haverkos warned the first few weeks of the trial could be rough, alluding to another patient he feels is similar to me - who he thought he'd have to hospitalize and put on chemo to shrink the lymph nodes piling up in his neck during those first weeks. He was very sick with die off too, but it wasn't happening quickly enough to make it safe. Fortunately he made it and it helped me those first weeks. I am now 6 weeks in, however, and I still almost always feel like I am just sick. 

The rashes have subsided; I am so thankful. That was replaced by what I describe as a pinched nerve-type thing in my neck that has been driving me crazy for weeks now. It sometimes isn't there, but mostly is. Massage and icy-hot remedies give me temporary relief and my sweet hubby has been so patient and helpful with it. But it comes on and can make functioning pretty hard. I take Advil or Tylenol periodically; they don't always seems to help. I resorted to old Oxycontin once in the middle of the night - it is worse when I lay down and try to sleep. I only sleep on my sides which I suspect is not good for it, but even when I'm exhausted and try to sleep on my back, I end up rolling onto a side without realizing it. Sometimes that wakes me up in pain. The Oxy is probably too old - it didn't help at all. 

I've been to my chiropractor, a therapeutic massage therapist, and now 2 acupuncturists. The relief lasts only a few hours. I know I've had this same problem twice before and, like the rashes, it is very hard to pinpoint what triggers it or makes it subside. The massage therapist and 1 of the acupuncturists are sure it's related to the swollen lymph nodes and not a pinched nerve. The acupuncturists I saw today said it's nerve because it makes my arm ache near the wrist. 

In general, I have felt ... sick. Like I need to lay down all the time. Sometimes I feel very nauseous. Other times it is more of an uncomfortable feeling in my torso that is hard to explain but is very uncomfortable.  It is hard to focus when I'm with people. I have to push myself through situations like church, small group, and other visits. Andy is the only one who really sees how hard this is. The idea that I can't plan my days and follow through on very reasonable plans is overwhelmingly discouraging a lot of the time. It's just ... weird. 

I wonder what my options are if I can't tolerate these drugs long term; I suspect it is back to CHOEP. Today the clinical director who I saw 2 days ago when I went in for weekly labs called to tell me they want to talk to me about different anti-nausea drugs. I have not felt Zophran did anything for me and the Compazine makes me all jittery and miserable. On the other hand, I didn't take any Zophran a few days ago. I had a pretty good day with some of our kids in Breckenridge but was so so sick and vomiting by the evening. They went home and we came home 5 days early from a planned week in the beautiful mountains. I just needed to get home. We've had to come home early or cancel so many things in the last 2 months; it feels like this is the reality from here on out but I have to fight back those thoughts. 

I know it is confusing to people - it's confusing to me! So many people like to tell me how good I look. It's not my style to say back - I'm struggling here and just need to get home but, thank you! It's a whole new world - having to often take days hour-by-hour to see how I'm doing and adjust accordingly. I miss being more active with my grandkids! I don't have the band width to be on the phone much but I am grateful to have good friends and loving family who check-in and especially those who I know actually pray for me. 

As for now, I am committed to keep trying to find ways to function until the PET scan May 13 that will tell the researchers if this is working. Since week 3, I've only been taking 1/2 the Valgancyclovir because my Creatinine labs have been too high, which could indicate kidney problems. They tell me to drink lots and lots of water, which makes me feel more nauseous so it is a challenge. 

Also, I've been taking 1000mg of Turmeric daily to try to offset the anti-inflammatory properties of the Prednisone. I only take 10mg daily again and my hands and feet and joints still swell up, but I think the Turmeric helps. The swelling can be so painful but it is becoming more and more manageable, I think. 

I think often of people in chronic pain and painful situations. I've talked about Corrie Ten Boom and Joni Erickson Tada here before, I'm sure. They both talk about being focused on Jesus, Scripture, what we are grateful for. "Give thanks in ALL circumstances." 1 These 5:18. I take these principles seriously and marvel at the strength of others. At least I am reminded there are other ways to be - even when I can't seem to really follow through myself. And then there is grace. I'm so thankful He doesn't expect me to be perfect. I'm certainly feeling very fallible these days and often very weak in all areas. But then...we get through one more day together and God reminds me somehow that he really is here with me in this. And I am perfectly safe because of that.