Roller Coaster Week May 2 - 9

Again, so sorry that you didn’t hear from me since my request that you pray for my Thursday chemo and pain block procedure….and thanks to Sally for giving you updates! (isn’t she the best? She keeps telling me she is reluctant to tell the story, but I so appreciate her giving you an update of how I am doing because I know your prayers and thoughts are with me every step of this journey) --- So bear with me for a moment or two and I’ll give you the stories of the last weekend …with the wonderful knowledge that this weekend I am doing great! I love my “off chemo” weeks.

As you recall, my chemo regime is “3 weeks on, one week off” and that the weekend after the 3rd week is when the “chemo fatique” really kicks in and I am just a noodle. Seriously, it is the weirdest thing. I cannot stand, sit, raise my arms…but then by the end of the weekend, as Susie says, I am returning from Noodleville. It’s the cumulative effect of the chemo apparently. It’s nice to then have Week 4 off.

Last week, Thursday, was Week 3 and I just couldn’t seem to get it together for chemo when I was up at Johns Hopkins. I had a rough start with the IV, then couldn’t seem to stop vomiting for them to get the chemo going. I tried the mind-over-matter (“I will not throw up”) technique and the mind was not winning! I told Sally it was because this was the first time she had not been with me at JH…she was having lunch with Michelle Obama and 1800 other close friends! A good reason to leave Frank and me on our own up at JH…but we failed her miserably! Although at the end of a long day, chemo was in, I got a couple bags of saline for hydration, and so we went back home to Georgetown to prepare to return the next day for the “Celiac Alcohol Nerve Block.”

Thanks so much for your encouragement in that decision. No one seemed to think I should not even consider it. ….and boy were you right! The funniest thing happened though, the JH Pain Clinic told us that we could come in to be “reviewed for consideration” for a pain block procedure. Then, if approved, I could be scheduled a few weeks out for the procedure. (ooooowwweeeee, was my response to the thought of the delay. Then I remembered, ooops, wrong response, and we remembered God saying “Cast ALL your Cares upon Me.” Psalm 22:55. So we did!

And so we all prayed that God would work this all out so that I could have an alternative to pain killers to take away the pain that was being caused by the lesions messing with all the nerves that are there in the back near all of my affected organs. (liver, gall bladder, pancreas, bile duct, etc) Well, surprise, surprise, surprise ~ we arrived at JH on Friday (Sally was there! ☺) and the wonderful team of Dr. Harrison the resident (Dr. McDreamy…believe me!) and his attending physician did the “analysis” then said, “let’s just go for it, as long as we are in here.” (at that point I was laying on my stomach on a table with a little quadrant that they had drawn on my lower back, a nicely anesthetized quadrant I might add, them putting needles of “the solution” into me while they looked at my back on a screen – xray-- I think it must have been an xray b/c they were wearing lead aprons) ---geez, as I write this I bet I am totally screwing this up, but I think that was what was going on…. And Dr. McDreamy, er, Harrison, would said, “do you feel that? Do you feel that? Do you feel that?) and I would say, “no, no, no.” …Oh, this was funny, at one point he said, “Did you have something surgically inserted?” and I am thinking “huh?” and then I remembered.. and I said into my pillow (on the tummy, remember) “oh, yes, I had a stent inserted in the bile duct to make room around a tumor blocking the duct from the liver.” He said, “Good!...mmm, you forgot to mention that.”

I don’t know how long it took. I was pretty wiped out when it was over, nausea kicked in again, but we were done and on our way to the shore. ---and it seemed to me, No Pain! Yay. (that’s when, shame on me, I should have written a nice blog post to you all. So sorry again.)

Saturday came with the expected Chemo Fatigue, the nausea etc, from the chemo, and oh, did I mention, the celiac block relaxes everything and so I was also experiencing the after effects of which they advised us. (read: big time diarrhea) But No Pain! They tell us that we won’t know for a couple weeks if the pain block worked, but so far…and it’s been a week, and it seems no pain, just a weird tingling across my lower back.

At this point, I became the author of my own nightmare. Like a big dumbhead I decided that if I didn’t have any pain, that I could just stop taking the morphine for the pain that was no more. So, more or less, I stopped – what a dope. Forget the details, but by Sunday I was dehydrated from the symptoms and a mess from withdrawal of the pain meds. Let me just say, I was just about doing an imitation of Michael Jackson’s break dancing routine. It was awful and frightening.

I remember telling David on the phone that at one point during the night I found myself thinking of a verse that I hadn’t thought of in a long time…The 23rd Psalm. You know how it says “The LORD is my shepherd, I shall not be in want. HE makes me lie down in green pastures, HE leads me beside quiet waters, HE restores my soul. HE guides me in paths of righteousness for his name's sake.” It was particularly meaningful when, as I was thinking of the verse, the way it says: Even though I walk through the valley of the SHADOW of death, I WILL NOT FEAR, because YOU are with me; your rod and your staff, they comfort me….” Well that was amazing as that verse came to me b/c I thought, that’s how this feels – this feels like a SHADOW. And I am not alone. I felt as though I was covered. Does that make any sense? I can’t explain it, but it was just so amazing that that was the verse that came to me. I will feeling like a needed a Rod and Staff to get through the scary parts.

By Monday evening we called JH and they asked us to go up to the ER b/c of the shortness of breath and other stuff going on. So we dashed (mmm, crawled) to the car and immediately headed up there. Christine had been at the shore that all weekend, but came from DC with Erik and met us there and stayed until I got settled in. Let me just say, an ER, in the middle of downtown Baltimore, offers a certain slice of life. There were some really wild characters in there. … definitely some others with “drug issues” but they were a lot more vocal that I was sitting in the oversized wheelchair they give you with my blankie, pillow, and bucket. I was amazed at how calm all the ER folks were with all the hollering that was going on. They took us in, (all wished me a Happy Birthday), immediately hooked up an IV for hydration and much to my initial distress, decided that the best thing to do was give me narcotics!! Long story, but basically the ER doctor said, “Our job is to stabilize patients. We operate or we treat. You we can treat. Then we can send you elsewhere to get you off the narcotics in the proper way.” It was a long way back. Frank sat by that gurney through the night through ups and downs, praying for me. Please remember him in your prayers. He has the tough job.

I can’t believe how naively ignorant I was of how powerful those awful drugs are. I know that they are miraculous for pain, but just seeing the power they have over the body is pretty overwhelming to me.

On Tuesday we went home, with an appointment to meet with the Pain Management Team on Friday. Last week was just a time for re-adjusting. It was wonderful that this was my week off of chemo. We spent the week in Georgetown. Friday I had the CT/PET scans in the morning (results next week) and we had a GREAT meeting with the Pain Management doc who gave us “the Plan” to wean me off the meds. I am now on Day One of the Plan (it will take 3 weeks!) and so far so good.

So again, I thank you for your continued prayers. Next week is chemo Week One and we’ll be back to JH on Thursday for chemo day. The fight continues, and the Lord again, as always, showed Himself faithful. “Because of the Lord’s great love we are NOT consumed, for His compassions NEVER fail. They are new Every Morning.” Lamentations 3:22-23

Prayer requests for this week:
Blessings for all the Moms!
For positive results from Friday’s PET Scan (more dim cells!) and the CT scan.
Chemo starts up again Thursday