Blog update – April 29

Piling on of Good News; then life after that.

After the great news of Thursday of how the PET showed, compared to the baseline, that the cancer “hot spots” were Dimmer – which means the cells are not as active and possibly diminishing. (I hope I got that last part right), we continued celebrating along with all of you this miraculous news! Well, the next day, I received an email from Dr. Dan Laheru (as you will recall from the beginning of all this, we learned that every person who has cancer has an elevated blood marker, called CA 19) . Here is the email from Dr. Dan:

Hi Carol:
This tumor marker CA19-9 is down from 2755 to 2261. That's pretty good and goes along with the PET scan results. Have a good weekend Dan

So that was wonderful news that I should have posted right away…but unfortunately the weekend/week did turn out as I expected. The celebrating was short lived b/c after a really active workday on Friday of client meetings by phone; at about 4:30 pm I just hit the wall. I didn’t expect it at all b/c the week before, remember, was my full week “off chemo” and I was busy as bee, working, out in the garden, walking, etc and I was all ready to get back into chemo-fight-mode. Besides this was a big weekend ahead…☺

On Friday, friends of Christine came from all over the country for a Bachelorette Party at a West Virginia Winery Saturday afternoon, and dinner at her house Saturday evening. On Saturday morning all of the bridesmaids were coming to the house for a fitting and I had planned a little brunch with fruit and pastries and mimosas and lots of giggling. I was on low energy chemo mode (more than I expected) and thankfully Frank and my good friend Mary Anne (who came from California for the weekend with her daughter Brittany – a bridesmaid!) got everything looking beautiful and special for the bridesmaids! It was such fun. I sort of parked myself in a corner and enjoyed all the action. Erik’s mom, Ruthanne, was there too, along with my friends June and Patty, who were hosting a bridal shower for Christine and Erik the next day. Our only missing bridesmaid was Kelly, ☹ Erik’s darling sister who lives in Vermont. But his other sister Heather was there, so that was great to have almost full “Maginnis girl” participation in the fun. (Ruthanne took a photo in our Georgetown garden of the bridesmaids for Christine’s scrapbook, I’ll try to get it on the blog) By 11:00 the girls were off to gather the rest of the friends and head on the limo-bus to the Winery for their luncheon. I was off to bed.

Whew, I was surprised how wiped out I was….but I was committed to resting up for the bridal shower that June and Patty had so graciously planned. Sunday came and I felt worse…and (here’s where I started asking “why, why?”) on this day that was so “about Christine” I had some rough spots…like all the symptoms hitting me in the car on the way to the shower. Fortunately we were a block away from a friends house, Frank called on the cell phone, they had the front door open and I dashed in and scooted in to the bathroom. (tell me that someday we will laugh about this.) I settled down a bit there at Dick and Pam’s house, but was anxious to get on to the shower b/c I knew Christine would be worried. So, attempt #2 to get to the shower. Good timing, arrived and directly to the Ladies Rest Room.

THEN, miraculously, it was all over. 180 degrees. Zap! I had a wonderful feeling of energy “no symptoms” …I joined in to the photos, ate the delicious lunch, got hugs from all the beautiful girls that we have missed seeing from the days they all hung out at our house during Georgetown breaks!, sat right next to The Bride and enjoyed every bit of the fun. As the festivities waned, so did I. Time was up! I slept in the back seat on the way home and basically slept through that day and off and on the next few days which were about the worse I have had energy-wise. And I kept thinking---“what’s up with this?” Each chemo month is a “Cycle”, with week 4 always an off week—I am in Cycle 2, Week 1; I had a wonderful week off, felt like the ‘real me’ and so I expected C2,W1 to feel just like Cycle 1 Week 1. Wow, no way. It was as though everything was starting over. The pain meds were not coming close, the nausea was back in full force and the other abdominal battles between constipation (from the pain meds)/diarrhea (from the clinical drugs) going with a vengeance. I was having a tough time drinking (and keeping) the 90 oz of water they want in me everyday.

I meant to get a blog out there to ask all of you to pray for me, but I was just completely and totally wiped out. Crazy. I keep hearing that “chemo is cumulative” but I’m not sure exactly how that plays out. I have days were I am fully, 100 % on my A game; then for no apparent reason, no energy the next.

So….yesterday (Thursday/chemo day) at JH the team decided to do an overhaul on the meds – I forgot to mention that last week the JH team talked to us about cutting back the amount of chemo/FTS they are giving me. Apparently they start with the full mode and are then keep readjusting to the sweet spot by pulling back to the to a lesser level depending upon how the patient can tolerate it. I was pretty adamant of no! no! no! I can do it! I want the full deal. They agreed to give it another week. Well, I had that week.

They also said that in light of the extremely positive results from the PET scans, this “lessening” may be better in the long run, b/c if I kept up with the bad side effects, they would have had to give me a break anyway b/c I just wasn’t really functioning fully.

The other thing under consideration.. And I would REALLY appreciate your prayer on this… is the suggestion that instead of narcotics to control the pain, I consider having an “alcohol nerve block” that basically acts like a novocain to deaden the nerves. We have been praying about this and the advantage seems to be that we won’t be “chasing” the pain trying to get on top of it. (and not doing such a hot job of that) It would also do away with potential side effects that may be coming from the morphine: constipation and some fatigue. They go in with a little needle and shoot alcohol on the nerve endings. I am awake through the process – no general anesthetic, another good thing. They did point out though that one of three things could happen, 1. it works great, blocks all pain for up to 6 months, 2. it partially works and they just don’t get all the nerves so there is some pain from the ones that were missed 3. sometimes, depending upon the patient, the block just doesn’t work at all. Worse case, we’d be right back where we are now.

I am hoping to just have a clear peace about whether this is the right thing to do. For me, I am particularly motivated to get this morphine out of my body and just have the chemo/FTS (the clinical drug) in there storming away on the cancer cells.

So…again, if I can ask for your prayers . . .

But before you lay my list on God, please do praise with great thankfulness, along with us----

• His miraculous use of the chemo and clinical drugs to zap those cells,
• The giftedness that He has given to the AMAZING team at Johns Hopkins; each individual, those we see and the many we don’t who have been given great knowledge that I can’t even comprehend!
• The fact that doors just opened, opened, opened in getting me to JH in the first place and getting the LAST Spot on the clinical trial before it closed.
• And even praise for technology that allows me to feel so close to you and know you are praying for me….unceasingly! that is a thankfulness that I can’t even put into words…but God knows. So please Thank Him for that too!
• And thanks to God for Frank….you have no idea what a guy he is.

For me, please pray for:
• The decision on the nerve block
• Relief from the symptoms
• Less “sleepy time” – and being awake to vomit doesn’t count! ☺
• Practical help in just consuming all of the water that is required

Isn’t this a neat quote ~

Looking back may I be filled with gratitude.
Looking forward may I be filled with hope.
Looking upward may I be filled with strength.
Looking inward may I be filled with peace.

Love to you all,

Carol