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.

All of the Above

Yikes, has it been almost a week since I added to the blog. Shame on me. You must be so worried about me! I’ll try not to make this too long.

Well, lots going on – in a manner of speaking – since chemo last Thursday. We were back at Johns Hopkins on Friday for more blood work. I sure hope they are doing something useful with all this blood they are collecting! We went directly to the Eastern Shore from there. On Saturday we went to a yummy potluck with some neighbors on our wonderful Goose Neck Road. Our little Neck is about 2 miles long and about ½ mile wide with about 20 houses on both sides of the road that goes right down the middle of the neck. It’s a beautiful spot (and plenty of geese honking and squawking at various times of the year so the Neck is properly named!)

At Chemo on Thursday they told me some folks experience some side effects:

nausea, rash, constipation or otherwise J, certain foods taste metallic, chills and other flu-like symptoms, or none-or-the-above.

I was voting for the last one.

Unfortunately I have had All Of The Above! (I didn’t think that was an option, but I got the full experience, the E Ticket ride!) So this week as been a little up and down in the activity department with the need to say close to the “facilities” as they say. Each day had a bright times though, so that’s good. We are still working through finding the sweet spot on the pain meds. I’m looking forward to settling in. This was a bit of a tough week. If this is it, I’m not crazy about my “new normal.” (I think we are already at the point where you have to say, “but remember Carol, you told us to remind you that you WANTED to jump in and get going with this!”)

This morning, our long time carpenter Carlos, who is like a Brazilian son to us…we love Carlos and Vanesa!....sent me this verse. I was up early, not feeling so hot, and I really needed this one: ISAIAH 41:13 "FOR I, JEHOVAH YOUR GOD, AM GRASPING YOUR RIGHT HAND, THE ONE SAYING TO YOU 'DO NOT BE AFRAID. I MYSELF WILL HELP YOU.'"

Here is the best news…the JH “Pain Management Team” put me on a long acting pain med that is such a God send b/c it means that I take one at about 11 at night and I am sleeping like baby all the night through! How wonderful that is J They also gave me some anti-nausea medicine. So, although I feel like a bit of my own chemistry experiment! I’m confident that this is all a period of adjustment and soon it will be nicely balanced out. I’m looking forward to that. (It’s that Romans 12:12 “patience” thing again!! I am obviously still in process.) Frank has been an angel! The soft boiled eggs keep coming, and although I am happy to subsist on soft cooked eggs and cottage cheese, Frank is expanding his repertoire daily! We have also has some yummy dinners by friends and neighbors dropped off. So Frank is gaining weight and I am working hard not to lose any more weight so I don’t get in trouble with the doctors at Johns Hopkins!

Tomorrow we are back up to Johns Hopkins for chemo, blood draws beginning at 7:30am and into the evening again. Sally is going to meet us up there first thing in the morning. Friday will be blood draws again and One More Liver biopsy on Friday. Ugh. (Christine and Mary Anne will be there for Friday! Yay…)

Here’s what I was thinking about this morning…somedays I feel a bit overwhelmed and this song kept coming into my head:

Who am I that You are mindful of me
That You hear me when I call
Is it true that You are thinking of me
How You love me ---- it's amazing

(Chorus)
I am a friend of God
I am a friend of God
I am a friend of God
He calls me friend

God Almighty, Lord of Glory
You have called me friend….

I guess if I have a song on my mind, that’s a good one!!

Love you.

Carol

Day 1 CHEMO Reflections

C arol
H aving
E xcellent
M iraculous
O verpowering cancer therapy!!

I love it! (Thanks Shirley!)

Well, let me tell you about yesterday/today. We arrived at JH bright an early for the first of many blood draws. Robert, my personal phlebotomist, was my shadow for the day. He put in a port at 8 am and then followed me here are there throughout the day popping up once an hour or so to take blood samples to see how the Chemo was metabolizing. The initial blood work is passed on to the pharmacy who makes the chemo. At 9:30 I went upstairs and settled into a little cubby spot – it was basically a window seat, looking out a nice big window with a cushion, a back rest pillow and a little TV if I wanted it. (I should have brought my camera! Next week.) At 9:45, Ella Mae, my chemo nurse, started the anti-nausea drug, then the chemo. 35 minutes and it was all over. It was a weirdest thing…it was a big nothing. I didn’t feel anything, I didn’t feel odd, tingling, burning, sick, nothing…as I said to Sally, this is a like a total non-event! Not that I was complaining! But I sure felt the answers to all of your prayers. Wow, you guys are amazing …. and effective!

I did have an unexpected CT scan at 11:00 to check to make sure I didn’t have a blockage in my intestine (I don’t) so I need to add Colace and Maalox to my diet. Frank bought me a yummy turkey/cheese wrap from the hospital café and at that point the not-unexpected nausea kicked in. I do remember saying “God, You there? This is yucky. I don’t want it to be like this….” I think He didn’t have turkey and cheese wrap on the menu for the day. But it started and it was over, just like that.

They gave me another anti-nausea drug that makes you very drowsy (ummmm, Carol totally fast asleep in the little cubby! Poor Sally, how boring for her.) Robert would come, take blood and I hardly realized he was there. The “Pain Management Team” came by, but I hardly remember them. They had lots of questions and advice. Thank goodness Sally was there like the traffic cop, with our special NoteBook that Peggy started, recording all the actions, inputs, meds, etc. (Frank was standing watch in the waiting room, doing food runs and pharmacy runs, reading all the literature and popping in an out with new food advice he was reading on the bulletin board…too many needles in that Chemo room for my hunny bun. He turns that alarming shade of gray when he sees a needle coming along! Hee hee.)

Blood draws lasted until 8 pm last night. We headed home – poor Frank was exhausted and had that 1 hour drive back to DC. I was snuggled in my blankie and slept the whole way! Christine and Erik were at home with a wonderful dinner and I just continued sleeping. Christine was hilarious. I have hazy recollection of her coming upstairs with a bowl of pasta and popping noodles in my sleepy mouth one at a time saying…”okay Mommy, open up our mouth….here comes another ziti…yummy, yummy.” Ha ha. I kept falling asleep from the meds. What a sight! But she was persistent, so I never had an empty stomach for the pain meds! Yay.

This morning we were up at the crack of dawn again to be back to JH for the 24 hour blood draw at 9 am. I had a little nausea again, so took another miracle pill and BOINK, nausea gone! It really is a bit miraculous the way that stuff works. From the stories that I had heard, they have come a long, long, long way in the chemo treatment. Oh! I just took the “4 pills” – the clinical drug— at noon. I take those, 4 each, twice a day. That’s my “booster” as I call it that takes the chemo right to the mother cell! GO GO GO!!

So, all that is just boring info, no real news, but I have received lots of “how’s it going? What’s happening now?” messages throughout the day yesterday that I wasn’t able (awake J) to answer, so forgive me if this is too much detail. After JH this morning we drove out to the Eastern Shore for the weekend. It is a beautiful sunny day. The daffodils are beginning to come up. Spring is here.

Please pray:

1. That the chemo is the right “recipe” and is effective in killing/stopping the cell growth and shrinking the tumors
2. That the FTS does for me what it has shown in all the other clinical trial participants
3. That some brilliant scientist will find a cure for pancreatic cancer soon and I will be able to go from having a “chronic illness” to cured!

I am (again) wrapped in my blankie with my laptop, enjoying this beautiful day, resting in knowing I am the daughter of the King…and that THIS restful peace that I am feeling is not from medication…it is from knowing without a doubt that I am loved beyond measure, and have a God who knows me personally, loves me for who I am, made me just the way He intended, and He has every day planned for me. That’s peace.

xoxo

Carol

Chemo Day 1

Off to Johns Hopkins with Frank. Sally is meeting us there! (yawn!) thanks for your prayers for no apprehension of this unknown! Smooth sailing and all those other Irish Blessings of having the wind at you back and all that! I have strapped on the Full Armor of God (Ephesians 6) and am ready to go!! He is my shield…I am under the shelter of His mighty arms. And the chemo warriors are going to zap those cells!

Thanks for your prayers throughout the day. It’s so great knowing you are out there!

Psalm 56:3.

More laterr!!!!!!!!!!!!!!

Carol