The Storybook Wedding

I want you to hear the details of the wedding from Carol. But in the meantime, I know you are all eager to see the beautiful bride and GORGEOUS mother of the bride! The wedding was perfect in every way. The ceremony was at the water's edge . . . Christine and Erik flanked by a very good looking wedding party and lots of hydrangeas. The sun set over the beautiful tent, also by the water. And when night fell the sky was filled with a fabulous display of fireworks!

Your many, many prayers were heard . . . and answered! God gave Christine and Erik a lovely day, a beautiful sunset, a full moon over the water and a wedding to remember!

Sally

Hi there! I am signing on just to share a little happy news! Found an email from Carol very early this morning and I wanted to share these excerpts:

"I would not have missed this week at the shore for anything. It has been a perfect build up…rested up nicely from the day at JH…which seems to tire me out, funny when it was really only hydration. But each day I have done better and better and now I am so close to the “old me.” Family and friends started arriving yesterday and I can tell on the look on people’s faces, they are surprised at how GOOOOOOOOOOD I look! Thinner, but good.

The bride is doing wonderfully! Not a hint of stress in sight. She is a picture of peace and grinning happiness! (even yesterday when the wine merchant told them….oops, sorry, we are 5 cases short on the red wine that you ordered! /She just said..okay, well talk to my dad, he’ll work out a substitute! Cute.) and she is totally non-plussed by this rain. (although I heard you had a torrential downpour yesterday…that never made it over here. over cast yesterday but no rain yesterday.)

I have been so good allowing everyone to boss me around to rest. And actually I just get up, walk out of the room, come into our bedroom here (which is SO quiet b/c it is fully separate from the house (no second story)) and I hang out…sometimes I nap, sometimes read. all’s good. It’s been fun to watch the gardeners transform the yard. The tent is up and it doesn’t take up as much room as I was afraid that it was. I woke up this morning to the pitter patter of rain and thought “boy Lord, you are adding weather-trust to Christine and Erik’s faith walk in this wedding!! But weatherman says sunny tomorrow! "

So . . . as you can see . . . Carol is feeling energized, strong and happy!

And I just wanted you all to know :-)

Sally

PS Watch this space! Photos to come following the wedding!

Update time!

Well let’s see, I was a mess at the Hopkins appointment last week. True to form, Sally beat us up there, so that when Frank pulled up to the drop-off, Sally had a wheelchair ready, had primed Ella Mae (my wonderful chemo nurse who is a total crack up – but SO dedicated) and I just wobbled in and up to oncology where I flopped into the bed and they took some blood (potassium is down, mom is feeding me sweet potatoes!) did the whole blood pressure thing (not great) but then I had a nice long nap as the IV pumped a few bags of hydration and some steroids (oh yeah) – I was told my cheeks pinked up nicely and finally I quit returning tummy contents! (There is a theory that the nausea is from STILL coming off the pain meds, and possibly not the chemo. We’ll see.)

Dr. Dan even made a bedside visit. (oh! Pray for Dr. Dan and the team…they make their big presentation on their very successful clinical trial next week) in the end, Dr. Dan had Ella Mae take me off all chemo, put me on 3 anti-nausea drugs that poor Frank had to administer every 3 hours….Andrew volunteered for the 2 a.m. dosing! Nice to have a nocturnal 21 yr old home for a few weeks! But the drugs kicked in after a few days and, that, along with a ½ steroid pill, now have me eating like a trooper.

My mom (Ruth) arrived from Cleveland last week to take charge of all cooking and over-mothering….and she is doing a great job of it! Those of you who know my mom, won’t be surprised that she insisted on driving alone (in her new car!) from Cleveland to DC. (Couldnn’t be here without her wheels!) As I remind Frank, who even HE is feeling overfed, cooking is my mom’s Love Language and she is loving all over us!

So, I am eating, gaining some weight, more tired than I would like to admit, but trying to save up energy for the WEDDING! Next week is the big week with all the festivities. We are having tons of rain back here, so may I ask you to please BOTH pray for a cure for cancer AND a nice sunny weekend next weekend for the wedding in our backyard at the shore.

I will post wedding pix, if you will indulge me. After the wedding, I go back up to Johns Hopkins to jump back into the fight. They are going to put me back on the same meds, so that means every 3 weeks I will go for an infusion of Oxaliplatin and then each day I will take morning/evening doses of Xeloda chemo pills. (I understand it’s a pretty common combo.)

I know I should be so happy that my stomach has calmed down from the every hour (3 hours max between bouts of vomiting..it was terrible!) but on the other hand, I feel as though I am “off meds” and what about that cancer???! I find that I am worried about it. So please pray that God has stopped the cells during this time of “no chemo pills.”

We got an email from Ella Mae who wants me back up at JH tomorrow morning “just so I can lay my eyes on ya…” So back up there we go tomorrow for some blood letting, and check over. I also have an appointment on Thursday before the wedding, so Ella Mae will have me all spiffed up for the weekend.

Thanks again for your prayers for the doctors, me, Frank, Andrew, Chip (flying in from Miramar on Thursday), Christine & Erik and Sally!

Love,
Carol

Hi Everyone,

Frank here, taking Carol’s dictation.

Thank you for all the encouraging blog and email responses. Please keep the prayers coming. This last week has been, to say the least, difficult. As you know because of my body’s reaction, it was determined best for me to come out of the clinical trial.

But we were told when we started in this journey that there were many arrows in the quiver to address this cancer. So last Monday I was put into a different chemo protocol where I would receive an infusion once every three weeks for several hours and then take chemo pills for another 14 days with a week of rest. We were thrilled as the timing worked really well for Christine’s upcoming wedding. Unfortunately my body hasn’t responded well to this protocol-I’ve been nauseous and sick since starting last week, notwithstanding a number of anti-nausea medications (our shelf looks like a pharmacy!). We fortunately have a previously scheduled appointment tomorrow for an IV hydration and will address all these symptoms and the course forward. The good news I’ve pretty much weaned myself off of the morphine, the bad news is I haven’t felt like eating and what I have has not stayed down. Frank does say that notwithstanding the 30 pound weight loss I look great-he’s biased :☺ so somewhat untrustworthy ☺, I’d rather be able to eat and hold it all down.

All the wedding plans are locked in (we’re also counting on the weather for this out door wedding) and our neighbors on Goose Neck Road have been tremendously supportive and helpful-so I just need to show up.

A friend quoted from a song “Whispering Hope”, which I find encouraging “Will not the deepening darkness brighten the glimmering star”. She went on to remind me that no matter what the situation is now, God has a plan for me to include to completely heal me. I know this as my heart is firmly fixed on our Lord. Ps 112:7

Again, thank you all, your prayers and words of encouragement are awesome and are so inspiring and helpful to me. Stay on your knees!!

Will let you know how tomorrow goes. Love, Carol

Good morning Carol fans! Just checking in to let you know that Carol sailed through the first treatment of her new chemo regimen with flying colors yesterday. The prayer now must be to keep the nausea at bay so this girl can gain some weight!

Carol asked me to tell you that she loves mail! Email, snail mail, any mail you want to send her. And she loves comments on the blog. Just please don't expect a reply! It takes too much energy. You know Carol . . . she would answer every single message if she got started!

Carol's mom Ruth arrives tomorrow as the wedding draws near. And the Marshalls are headed to the Eastern Shore for the holiday weekend. Carol promises to post soon!

xoxo
Sally

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