Course Correction – New chemo meds on the way!

Well that pesky cancer is fighting back after our first month of such great results (dimmer spots on the PET and lower CA 19 Blood Marker). Unfortunately, while the results of my recent PET/CT tests were essentially consistent with last month’s, the CA 19 blood marker from the latest blood test showed a 30-40% increase in that blood marker (this blood marker is used an indicator but is not necessarily definitive as to what is going on)..

Here is what I love about our JH team. They met with us yesterday and said, “Here’s what we are seeing. We are changing. Let’s move on to Plan B.”

As Howard just said to me, “Carol. It’s like chess. Move/Countermove.” I can relate to that thought.

So here’s what it means: I am off the “Gemsar” chemo, so no more weekly Thursday chemo + no clinical drug. I am out of the clinical trial b/c the doctors said that with my physical condition and the increase in the markers and what they see in the CT scan it was obvious that my cancer is resistant to that drug combo.

They are moving me over to a different drug that has been very successful in both colon (not me) and pancreas (that’s me) cancers.

I am excited that the new drug is given only once every three weeks by IV at Hopkins and then I take some pills in addition. I don’t remember the names of the drugs….we have it all written down somewhere. This new regimen has some of the same side effects – fatigue, nausea (oh yay) and then some potential neuropathy (tingling) in the toes and fingers that they say they can control, I just have to keep them posted. They also mentioned the creepiest thing that I hope I never experience – apparently some patients have found that within 2-5 days after the infusion, if they touch something cold (like in the frig) or drink a cold drink, they get the FEELING that they can’t breathe. You CAN breathe, it just FEELS like you can’t breathe. So you can get a little panicky. (a little??!!) so, I figure I am going just avoid refrigerators and wear mittens for 5 days after each infusion and not take the risk. Ha ha! So if you see me with fuzzy mittens in August you will know why!

So, yesterday was a bit of a downer, but you know….God says, “My mercies are new every morning” – and I was amazed how I lived that assurance just this morning. I feel just fine! I am full of hope that this new combo will work and anxious to get on with it. In fact even when we were in the meeting with the JH doctors, and when Dr. Dan called later last night, I found that I keep saying, “This is just different, not defeated.” I really don’t feel distressed over this change.

I will praise your name, oh Lord, for it is good. Psalm 54. I know You are on my side! Whew…and I thank You for that!

Oh! And thanks Kris for the tip on the nausea. (I was worried that the nausea drugs were making me sick..) well, thanks to your advice about drinking Coke Classic (just like Frank’s dear friend and college room mate Mark!) I have not had nausea for at least 20 hours! Yay!! AND you will be pleased to know that I am learning to eat whenever I don’t have that nauseous feeling. Btw, any advice out there for weight gain my friends, please post it.

Other good news is that with the “every 3 weeks” of the new chemo, that means I will still have the week off before Christine and Erik’s wedding. I am so happy about that! It’s hard to believe that the special, special day is only 3 weeks away. I don’t go back in for chemo then until the Monday after the wedding. What a gift of timing that is!

Please pray that this is the “right one” ~ that the tumors will shrink, the cells will diminish and side effects are mimimal.
Pray for Frank - for his strength, yet transparent compassion. He is amazing.
And while I’m at it…would you please pray for our kids as they walk this journey:
For Christine and Erik’s wedding – for great weather, safe travels for all, for God's continued blessing in the details
For Chip so far away in San Diego at Miramar Air Station. He will be able to come home for the wedding! Yay! Then he deploys to the Middle East in late July.
For Andrew who just found out he will be working again this summer at Moose River Outpost, a wonderful Christian Camp up in Maine.

I was thinking another good thing about this ‘every 3 weeks chemo’ maybe if the fatigue isn’t so bad, we could make a car trip to Maine to see Andrew this summer!! More on that plan later ☺

So, that’s it for now. Although I’m feeling so good this weekend, I have a couple more blogs in me!! I want to send you all a photo of my CBS gals and of Wolf von Kumburg, so watch this space. Please do post a little something to the blog if you have a second. I treasure the little glimpses of knowing you’re out there. (what a baby I am!!) ☺

Love you bunches,

Carol

p.s. someone told me, if it won’t take, and if you don’t have a gmail account, then comment as “anonymous” and then sign your name, initials, whatever! xoxo

Basking in Birthday hugs!

Well, here I am, too many days past my birthday, admitting that it has taken me a while to read all of your wonderful posts to the blog on my special day. I can’t tell you how much those little sentences mean to me. It truly, truly is like a hug from each of you..and from all around the globe! I can see each of your faces in the posts that you put up…in China, Italy, Zambia, Luxembourg, UK, Canada, Germany, Dubai, Malaysia, California, New Jersey, Arizona, Seattle, Toledo, Georgia and, and, and …..oooo EVERYBODY, everywhere the list just goes and goes and goes and I SEE you and just imagine you as you say the words! (okay, yeah, yeah, I’m teary now! blubbering actually.) How can I tell you how much, much, much you mean to mean in this time and this place that I am? I hate this, but I love you. And I love the way you quietly reach out to me with your kind words on the blog and knowing above all that in the words and in the silence you are praying for me ~ each in your own way, talking to our great and mighty God about ME. It is a bit overwhelming. Thank you.

I have to tell you, it was so funny, the week after “56th Birthday in the ER” I do remember thinking, as I was showered with Birthday cards…how do all these folks know that it is my birthday. Then someone ‘fessed up and told me that Sally spilled the beans on the blog! ☺ You lil sneak!

Then I learned that so many of you have made a donation to the Johns Hopkins Pancreatic Cancer Research fund in honor of my birthday. Oh my goodness! I was so touched. At first I felt presumptuous, like “asking” for a birthday present…but after fussing over that thought for a while, I was reminded and realized that I am In This For The Cure! My desire is to see a cure for this disease DURING my lifetime….and your thoughtful donation may be just the gift that accounts to the cure of this horrible, horrible disease. So, I’m over it…and am just thanking you so much for your generosity. I wish each of you could meet Dr. Dan Laheru and his team of researchers. Believe me; your investment is in good, responsible hands.

Join with me to pray for a cure.

I have to say, I don’t think it was until I personally have been in this face to face, eye to eye place that I have truly understood the words of Proverbs 17:17. A friend loves at all times, and a brother is born for adversity.

Thank you for being with me on the blog in such a tangible way through my “adversity”.

Love, Carol

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

Birthday Girl!!

I am not a great one for remembering people's birthdays. But since Carol's birthdate is "code" for proving my relationship to her at Hopkins, I will never forget it!!!

So . . . on this date I just want Carol to know that we are all sending her oodles of love, prayers and wishes for a happy day today!! We love you girlfriend!!

And to the many, many friends of Carol's who have donated to the Johns Hopkins Pancreatic Cancer Research fund in honor of her birthday I want to say THANK YOU!!!

xoxo
SallyB

No Pain!

Carol is resting comfortably . . . really comfortably . . . on the Eastern Shore tonight. This afternoon she had a procedure called a celiac plexus block - a deadening of the nerves in the area of her worst pain. As far as she can tell, it was a great success. She'll know for sure in two weeks when the local anesthesia has worn off and the true impact of the block will be realized. But, so far so good!! And if it truly works she will be able to give up the morphine and all its nasty side effects. What a blessing that would be!

Thanks to each and every one of you for your many, many prayers. Carol felt prayed for, loved and finally pain-free. Actually . . . she was so happy in the recovery room she was inviting the nurse to come to their house in Georgetown for drinks when she and her husband come to town next. AND she insisted that Frank write down their address and telephone number!!

Carol promised to write tomorrow. But for now, know that your prayers were heard!!
Sally

Call for Prayer!

Good morning everyone! This is Sally writing with a brief update and specific prayer requests for Carol.
Carol's pain continues. And management with drugs has proven difficult and uncomfortable. So the wonderful doctors at Johns Hopkins have suggested a procedure called a celiac plexus nerve block to relieve much (if not all!) of Carol's pain and hopefully allow her to use less painkillers. The procedure will take place tomorrow (Friday) at 1:00pm. Please pray fervently that the block is successful and brings relief!
In the meantime, today brings a new round of chemo. Carol seems to be responding well to the new "cocktail" JH has devised at a slightly lower dose. Less fatigue and nausea! An answered prayer, for sure!!
More updates from Carol are coming. Just wanted to let you know what's happening. And ask you to keep Carol in your prayers these two important days!
Sally

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