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

Amazing news!

Fantastic news!  We just talked to Dr. Laheru, the head doctor of the
pancreatic/clinical trial team. The team just finished looking at the
results from my PET scan yesterday. They had studied and re-studied the
results of yesterday's PET scan. The doctors expected "no change" from the
baseline PET scan that they did just 4 weeks ago. (This was basically just a
"pro-forma test they do after 3 chemo sessions. I will have them
periodically.) Well, instead of 'no change' they were very surprised to see
the cancer hot spots are "dimmer". They are shocked to see such results so
soon. It means the cancer cells are already less active and potentially
shrinking!! It is such wonderful news! Tears, big smiles, high fives and
hugs all around!

Couldn't wait to share the news!!!!!!  Wrote this during chemo yesterday at JH. 
TO GOD IS ALL THE GLORY!!

Keep praying, and praising and thanking!!!

"Blessed are the prayer warriors out there in cyberspace who have learned to acclaim YOU, who walk in the light of your presence, O Lord. They rejoice in your name all day long; they exult in your righteousness." Psalms 89:15, 16 – with a little Carol-paraphrasing!

Love,

Carol

Photo session today!

Well, we are getting ready to head back up to Johns Hopkins today for my first “follow up” PET scan and CT scan. They did the baseline scans about a month ago as you will recall. Dr Laheru said that they don’t expect to see anything significant this first month – it is generally the second month of chemo before they can really see anything. But let’s pray that God will surprise them with some nifty photos of my insides! The PET scan is a little creepy b/c that’s the one where they lock me in that lead-lined room, and the guy comes in all suited up and takes a tube from a lead canister, pours it into a “milkshake” and says, “Here. Drink this.” hee hee. Then he gets the heck outta there, locks the doors, turns down the lights and I sit in a recliner-like chair without moving. They repeat the process and after about 45 minutes of not moving they put me in a tube thingy and do the scan. Apparently the nuclear stuff goes to the cancer cells anywhere in my body and the cells glow like little fluorescent beacons. Please pray that the beacons are dimmer than last month…or even GONE!

(I think I got that whole PET scan description right….you may have had one and know way more than me!) I also have a CT scan today whey they inject fluid in my vein and take pictures as it flows through my body. That one is pretty cool. I feel like a human anatomy lesson because I can feel it moving through the veins.

I have learned some very, very interesting things about myself and about God on this journey so far. (Doesn’t that just sound so “poetic" to call this a “Journey”! :)) One thing that I have noticed is how when I read the Bible these days, or hear a pastor teaching, I keep finding myself thinking….”wow, God wrote that JUST for Me, where I am today! Have I never read that verse before?” For example, as I get ready for these tests today…check out this verse from the Hebrew Scriptures:

Jeremiah 32:27 Behold, I am the God of all flesh; is anything too hard for me?

The God of ALL FLESH, and all Cells, and all Organs, and ALL of Me – what comfort that is. HE is in charge. Boy, what a relief. I’m glad that I don’t have to be in charge of this one. It’s too big. And then for God to say “Is anything too hard for ME?” It’s very cool. As I read and read in the Old Testament (Hebrew Scriptures) over and over I learn more and more about WHO God is, His power, His glory, what He has done…and I am confident beyond anything that I know the answer to His rhetorical question of “Is anything too hard for Me?” My answer to God is: “NOPE! Let’s go…we’ve got to get in the car and head to Johns Hopkins today Lord. I’m sure glad You’ll be with us.”

I know that God will be with you today too on your Journey…pretty neat the way He does that isn’t it? ..omniscient and omnipresent…I guess that’s why He is God.

Thanks for your prayers for healing, the scans, (a little anxiety over the scans), and just to get rid of those pesky cancer cells! ..and most of all for patience as I wait upon God’s timing. Oh…and thankfulness that He shows Himself to me so graciously through you guys and especially through His Word…the Bible.

Love,

Carol

p.s. Scans today, back to chemo tomorrow. (but no blood draws, I don’t think. I’ll keep you posted. I’ll get the chemo schedule for tomorrow, today.)

Knowing What We Know

I’m back!! Sally was right ~ the JH heads up for “extreme fatigue” was the understatement of last weekend. I had a really busy work day last Friday until mid-day, then just hit the wall like I never imagined. I, seriously, couldn’t even open my eyes or lift my hand! I would ooze out of bed, to the “facilities” then nap on the bathroom floor for a hour or so, then wobble back to the bed or the couch….all weekend. Plus “symptoms” thrown in, so it was another new experience. But that’s behind me now. Whew!

Tomorrow we head up to Johns Hopkins for a “long day” with Robert-the-phlebotomist. Tomorrow blood tests only, off and on, for 11 hours, then back again to JH for more tests Friday morning. But no chemo!! Now here’s something funny. Last weekend I was thinking, “Wow, I can see why they give you a break after 3 weeks of accumulation of the chemicals in your body. The old bod can’t take it.” – but now that my “Break Week” is here I am surprised that I find myself thinking – “No, no…they MUST give me the chemo. I don’t want to go a week without it. I have to keep fighting. What if the cells grow during the ‘off week’? etc etc.”

I know that is silly but I did find myself thinking that. I trust that the doctors know what is best – and as you know, I am not the first through this clinical trial, so the doctors really know the best way to give this treatment. I have confidence I am in good hands. I was reading this wonderful verse from the Psalms and found myself wondering (again) if the author, David, was experiencing the exact same thing that I am b/c once again David certainly hit the mark for my feelings in what he says in his writing --- Isn’t this a great verse from the Psalms?…"I know the Lord is always with me. I will not be shaken, for He is right beside me. No wonder my heart is glad, and I rejoice. My body rests in safety! Ps. 16:8-9”

It’s a lovely week to reflect on resting in Knowing what We Know.

Sleepy girl!

Carol seems to be following the script . . . exactly as written by the wonderful people at Hopkins. They said the "fatigue factor" grows with each chemo treatment, and most patients really feel it after their third treatment. Chemo #3 was Thursday, and Carol was down for the count all weekend. Good thing this coming week is a week off!
So, all you prayer warriors, the prayer is for Carol is to build herself back up with lots of sleep and good nutrition, so as to be ready for the next treatment in a couple of weeks.
Check out Carol "lunching" with her CBS core group at Debbie Tovar's last Monday!
Sally

Oh yeah…Oh yeah … Uh huh, uh huh, uh huh!

Congrats prayer warriors!! You did it again! Chemo today was great. NO nausea! James 5:16 The prayer of a righteous man is powerful and effective

No blood draws today (but Robert came up to chemo anyway, just for a visit! With no needles!) Ella Mae said that they have been working on my concoction and “it came to her” to try an additional nausea drug that goes to receptors in a different part of the brain. Apparently there are various locations for receptors and the first two earlier drugs where working somewhat, but were not quite hitting that precise mark.--- notice PAST tense!

So today looked like this: Frank and I, and Sally, arrived JH at 8:30- straight up to chemo for some meetings and prep time (the pharmacy doesn’t mix the recipe until the patient arrives, too expensive to risk a no-show or a delay.) 10:30- IV installed in top of my wrist and the mix starts: first Zofran nausea meds by IV, then the chemo (35 mins); then the new nausea med by mouth (Emend – every day for 3 days); then they kept me around for a sack of water, just to get me fully hydrated incase the Emend didn’t work…and the theory that fluids are always good. (I need to be better about drinking more water.) 12:15- walked to the cafeteria, had lunch, and headed out. Sally back home, Frank and I to the Eastern Shore. No blood draw tomorrow. My veins are squealing with glee not that we don’t LUUUUVE Robert!

Although, one major draw back, I am sure they put some kind relaxer elixir in my mix b/c I was so sluggish that I slept all the way to the Eastern Shore and Frank did not get the benefit of my able assistance from the co-pilot seat!

Actually Ella Mae and Dr. Laheru both mentioned to us today that the chemo effects, particularly the “extreme fatigue” side effect is cumulative and many patients say that after the 3^rd session, they are really wiped out. I appear to me in line with that one…slept from JH to here (1.5 hr) wobbled to bed for 3 hours, am up for dinner and pain meds, and am already yearning for my pillow! I also committed not to leave you hanging this week, so I was MOTIVATED to get a big Thank You message out to you and then zonk out again.

Please join me in a special thanksgiving prayer for Sally who joyfully -and adamantly- refuses not to be there with us, is our faithful note- taker and question-asker of the medical staff, full time supporter and prayer partner. Please pray for God’s special blessing on Sally and her family. ~Pray too for Peggy Ann who is out of town but sends me daily emails harassing me about eating, hydrating, not working too much, etc!

You have again proven to be effective in prayer and encouraging in friendship.

Keep those prayers…God is indeed honoring them.

Thank you.

Love and Sweet Dreams, zzzzzzzz

Carol

Happy Birthday, Frank!!

Ah ha! Wednesday again! How did I do that? I can’t believe it has been a week already since Chemo-Thursday. I have heard said that “the life of a cancer patient revolves around their chemo”..and I thought “That is pathetic.” Hee hee! Oh dear. Although I must say that it’s not that my life revolves around Thursday at Johns Hopkins…but it does become that “appointment” that nothing can interfere with, that gets me thinking about it on Wednesday as I go for my Pre-Chemo blood test here at our local hospital, then the post-chemo blood draw on Friday….so a 35 minute “chemo Thursday treatment” is suddenly a 3 day event! But does my “life revolve around chemo?” Nope! No way.

Here is the re-cap from last week. Wednesday, blood draw went fine, for some reason I called at 5:30, at the very end of the day, to confirm fax had been sent to JH, it hadn’t. But a nice lab attendant set it up, so they had my numbers when I arrived on Thursday. (significant b/c it allows them to make up the chemo first thing Thursday morning and saves about an hour or so of the long day of blood draws) Thursday, Sally and my Frank (Sally has a “Frank” too ) and I got there at 7:30. Met up with Robert for the first blood draw. (Our Phavorite Phlebotomist) --- although we need to get Frank to stop referring to him as the “Lobotomist”. He keeps saying…”Carol, I’ll meet you at Lobotomy.” THAT brings some startled looks on the elevator! By 9:30 I was cuddled into by little cubby by the window (tomorrow I’ll take a photo!) and the nurse had the anti-nausea medicine dripping away and then added the chemo. My friend Mary Anne arrived from California for a visit and so she, Sally and I chattered away though it all. Frank guarded the waiting room. We felt very safe.

Here is a HUGE answer to your prayers ~ you know the prayers that seem so specific; the prayers that show that we really do take God at His Word that He does care about the details of our lives, and that we should Cast Our Cares Upon Him ~…I was so happy to see the pharmacists from the JH Pain Management Team who came by while I was chemo-ing so that I could tell them how great the new pain management regimen is working! The week before they switched me from the short acting pain meds (every 3-4 hours as needed) to a Long Acting version that I now take every 12 hours. What a different not having to wait to “react” to the pain surges! I wasn’t sure that I wanted to make the change, but they were so right. With the long acting stuff, I sleep all night long with no pain AT ALL…I mean it…no pain! Thank you! thank you! thank you!..that is indeed an answer to your specific prayers on that. And I feel as though the good deep sleep is allowing the clinical drug (that I take at 9 am and 9 pm) to really go nuts all night long while my body rests. I have always had nice deep sleeps, so I was missing that! So now I take a Long Acting pain med at 7 am with breakfast, then generally need a “break through” short acting in between – about 5 pm, as needed to keep it all in check, probably b/c of moving around so much during the day…my theory)

After chemo and the meeting with the Pain Mgmt team, Frank, Mary Anne, Sally and I all went to lunch with Robert. Unfortunately my stomach again said, “nope!” to the lunch idea. ….gotta figure that one out. How about major prayers for “no nausea tomorrow” and we’ll let God take control of the mid-afternoon stomach gyrations?? (PLAN: You all pray, I’ll let you know how it goes, tomorrow night, a blog update, I promise. ) We stayed for the blood draws until they shut off all the lights at 8 pm in the chemo area on Thursday night, then Mary Anne and I spent the night at a swanky hotel in Baltimore where Christine had “Pricelined” a room for us for $99!! What fun. We ordered room service, and laid in bed and ate and talked and prayed. Ahhhhh, girlfriend time! Friday morning we took a cab to the hospital and Frank & Christine came later to meet us for the liver biopsy.

Friday morning, Robert-time. We had a little bit of drama though. After the blood draw, when Robert took my vitals, he asked “Do you feel alright?” Put his hand on my face. Apparently I had a bit of a fever with puts everyone in a tail spin b/c of the whole infection/immune system thing. It appeared that the Liver Biopsy might have to be re-scheduled. But – true to form – our remarkable Dr. Dan LaHeru, immediately made a space in his schedule, walked me across the hall to his exam area. As Mary Anne took notes, he declared me certainly fit to have the liver biopsy if I was up for it. All Systems Go…I was glad for that, for many reasons as you will read below. So off we went to the liver biopsy.

Now the fun shenanigans begin….Teamwork In Action. You see, Friday was Frank’s birthday and we had planned a surprise party for him out at the Eastern Shore for Friday night when we got home from JH! Christine did ALL the planning, invites, secret-keeping, etc. Everyone was to arrive at the house at 7 pm, which we thought was perfectly aligned with when our day would be over at Johns Hopkins. (so as you can see, the cancellation of the liver biopsy would have messed up the WHOLE schedule!!!) Christine was with us at JH, communicating with Erik constantly by text messages. Erik took the dogs to the Eastern Shore, made big salads, Susie & ML brought garlic bread, and Christine ordered yummy Italian dishes from our local fav spot. She also made, from scratch, the most a m a z i n g triple chocolate cake (see photo) So at the house, lots of decorating, cooking and fun going on as Steve & June arrived early to help out. Back at JH, the liver biopsy went off without a hitch. During recovery, even our nurse Carla got into the swing of things…Christine told her about the surprise and the minute-to-minute timing and we were about an hour AHEAD of schedule…so Nurse Carla comes in and says to Frank…”Mr. Marshall, mmm, in light of the internal bleeding that Mrs Marshall experienced in the past, we would like to keep her here for another hour, unless you insist that we release her????” Ha ha ha ha. It was priceless! You can imagine, poor Frank, fell right into it. Carla gave me a BIG WINK and off she went to deliver ice chips to some other patient. As you can see from the pix, the surprise party was pulled off! Our neighbors and friends were WONDERFUL to shower Frank with lots of attention and good wishes. Geez, the poor guy has not had an ounce of attention for over a month, it was much, much deserved.

We came back to Georgetown on Monday. My bookclub friend Nan brought us a gourmet dinner that evening, then on Tuesday I had Bible Study and our monthly fellowship luncheon afterwards with all the gals at Debbie’s apartment. It was a sweet, sweet time! So, as you can see: “My life does not revolve around chemo” God is not allowing that….but I am confident that the chemo is working hard while I am living life enjoying time with family, work colleagues, friends and my pals at Community Bible Study every Tuesday morning. Thanks for joining with me as I thank God for working out the pain meds, for the energy to do so many of the things that I love, and for wonderful resting up in between.

Ps. 17:6 - I am praying to you because I know you will answer, O God. Bend down and listen as I pray. Show me your unfailing love in wonderful ways. By your mighty power you rescue those who seek refuge from their enemies. Guard me as you guard your own eyes. Hide me in the shadow of your wings.