Post-wedding-back-in-the-fight-Chemo Update

I am looking through the Psalms, there has got to be just the right HALLELUJAH verse in there where David just says Thank You, Thank You, Thank You for the blessing. But none seems to be enough!

As you know, we went back up to Johns Hopkins to get going again on the new chemo. You won’t believe this…the anticipated side effects of nausea (NOPE!); fatigue (SOME, but what’s a nice nap now and then); tingling fingers/toes (nope!) are so minimal.

But it’s that nausea! Not A BIT so far. I know they told us that the symptoms can be cumulative and maybe I’ll ramp up a bit as the days go by…but so far, I am tummy happy! (and eating, eating, eating just to prove it!)

They have me on the same dosage level that they say 90% of the folks who are on this combo take. So it is a bit of a down-dosage from last month…so of course you know me…I’m thinking ~ is this working? I am not sufffffffering? (A sign of a sick mind, I know.) But that’s where the patience comes in again. We won’t know until the next round of tests to “look back” and see if this poison is the right poison for my cells. Please keep praying that it is…but I do know that if it is not, then there’s just another plan.

When we were at JH, Sally & Frank & I met the neatest couple. Bill Forbes was told several years ago that he had 6 weeks to live with pancreatic cancer. And there he was! Full of stories. When he and his wife asked which chemo treatment I was on, and we told them, they said, “Oh, Bill had a great year and half on that!” That was so encouraging…. (He also told me that he had had the Whipple surgery that works for some pancreatic patients, but his cancer came back…he also cited that 90% of folks who have the Whipple have returning cancer. So that was interesting. Anyway, in my case, (some of you have asked) I’m not a candidate for the Whipple…too many cancer cells spread around to too many places. That’s okay. God has a different plan for me.

I don’t want to ramble on and on, just wanted to give the good news and ask you to Thank God along with me, Praising Him for continued blessings…who would have thought after the great day of the wedding. Ah, me of little faith…I thought that was a “one day” blessing….but nope! God intended blessing upon blessing and I’m loving it! We are still out at the Eastern Shore hanging out.

Thanks for being there for me. Thanks for your unceasing prayers.

Love,

Carol

A Few More Wedding Pictures

Sally,Carol & Peggy Anne
The wedding site!
Mr. & Mrs. Erik Maginnis

The Wedding Report!

Sally!! I just looked at the blog! You good girl! Thanks for getting some wedding news up for our friends…and where did you get those cute pix? I love them Sally! (and we have MORE!)…

Okay, gang, Bear With Me…it’s Mom time! I want to tell you all about the wedding. It was a perfect day! Yesterday I received a lovely card from Dixcy, our sweet neighbor next door, and let me share with you a couple things she said that were a perfect description of the day: “…On this eve of your daughter’s wedding, I am praying for complete sunshine and joy in your hearts and hoping that for this weekend – time will stand still. That sorrows of the past or worries of the future will not enter your thoughts. That you will be completely enveloped in the presence of God’s Love….” THAT is a perfect description of the day.

First…all about me! ☺ It was as though God ensured that there was not one OUNCE of chemo in my body or one misguided CELL anywhere. I was me! Not once during the whole day was I tired or weary, worried or distracted…and I’m telling you...I was not faking it! It was a total gift from God..an answer to your many prayers everywhere. It was a gift to me, to Christine, (who is my lil worrier) to Frank, and all our family, my boys…everybody could see…this was MOM! And I was THERE! Totally there….in the dress that Christine picked out for me (on sale, yay!) and had hanging in the closet in sizes 12, 10, 8! okay, nuf about me. BUT, I was fabuloso as my sister in law Michele would say! Praise God b/c it was indeed blessings upon blessings all day!

Wedding was on Saturday of course, but Friday, as you saw from the email that I sent to Sally that she cut and pasted for all of you,..it rained (um poured!) all day Friday. I mean it poured. Buckets! We had a bit of a reprieve for the rehearsal as the kids squished thru the grass practicing walking to the beautiful little archway that Amy created by the water. Oy vey! But they were wonderful sports, hiking up their skirts and kicking off their shoes. Then the rain came again as we dashed to the happy, love-filled Rehearsal Dinner that Erik’s mom and dad (Chuck and Ruth Anne Maginnis! WE LOVE THEM) hosted for 100 people! It was an Eastern Shore buffet with oysters, crab cakes, cream of crab soup and lots of yummy food…which I “ate like a trucker”…as my dear husband describes. It was wonderful. (The only intimidation was the wonderful, heartfelt, articulate, lovely toast Chuck Maginnis made to welcome the about-to-be-joined families…Frank was feeling the pressure for Saturday night!)

Saturday morning was overcast…sun was teasing around…but there was a wonderful BREEZE…and.. fast forward, by the time of the ceremony at 5 pm the grass was totally dry (yep!) and the sun was shining. The only funny thing was that for our guests, instead of walking around the side of the house to the back yard for the ceremony everyone had to come UP the front steps, ACROSS the porch, THRU the front door, and OUT the back door, DOWN the steps to the yard! Ha ha. That was a little funny….but as Frank said, it made us feel like, “Hi friends..come on over to our house and into the back yard to share in Erik and Christine’s WEDDING!”

The ceremony was unbelievable! So many people commented on how thoughtful and meaningful Pastor Mike’s words to the couple were. He had a wonderful way of weaving scripture and Biblical truths and conventional wisdom and humor. We loved that, as he was speaking, Erik and Christine were so intent…nodding their heads at him, looking at one another at this point or that…it was as though the 3 of there were up there having a conversation and the rest of us were listening in on the wise words that Pastor Mike was sharing with these two wonderful people. But on the other hand, we all felt blessed by what Pastor Mike was saying, because it was wisdom for new and seasoned marriages. It was beautiful. Oh! And it was cool….after The Kiss and Pastor Mike pronounced them man & wife, they strolled out (see photo!) ...went back into the house for some alone time….and Pastor Mike kept the rest of us there! And he had a special “Charge to the Family and Friends” where he took some time and basically said….”okay you saw an extraordinary exchange of promises here between two every special adults…but now YOU have a job…” and he talked to us, every one of us, about our role in supporting their MARRIAGE, and their promises, and their commitments that they made. It gave me goose bumps. I was not just an observer…every one of us was In a Support Role of this marriage for a lifetime. Anyway, I’m not doing it justice, but let me say, it was very cool. We all felt it!

After the ceremony, we had a wonderful reception, sun is still shining, nary a cloud in sight from then on! Our friends and neighbors here on Goose Neck Road made Christine and Erik a “wedding burgee” that was flying from our flag pole, ruffling in the warm breeze thru the wedding..I’ll have to post a picture of it for you. It was neat!

There was that weird time when they take the wedding party off for pictures, we noshed on yummy hors d’houvres but soon the kids were back! Then the party began. Wow-eee! So much fun. Erik and Christine started off with a Dance! They had so much fun going to dancing lessons for 4 weeks and learned a dance to one of their favorite songs: “More” – started out with a slow fox trot then broke into swing..and a DIP! It was so fun..everyone was clapping and cheering them on! Our Erik has quite the moves on the dance floor. He was charming!! No wonder Christine is smitten!

From then on the dance floor was never empty! Erik picked every single song that was played and insisted on “crooner music” during dinner. It was so wonderful…we actually all couldn’t stop our dancing-feet and were dancing before and during dinner! So what! It was fun to dance to the Old Stuff….and we have some friends who can really cut up the rug, so it was fun to watch AND join in! (Made me wish my dad was there..my mom & dad were QUITE the dancers…but my mom had lots of dances during the night. She didn’t turn down one fella, and at one point I noticed two young guys asking Grandma Ruth to dance!)

Frank and Christine had a beautiful dance to James Taylor’s song, “You’ve Got a Friend”…you know (sing along here)..”when you call out my name…you know wherever I am, I’ll come running, cuz you’ve got a friend…..” It was very sweet. By the end the Maginnis family and we were all on the dance floor.

After dinner with the “real dancing”--- it was a blast! EVERYONE was up and dancing! To all sorts of wonderful music ... you just couldn’t stay in your seat! Even Frank and me! And Andrew and me, and Chip and me, and Mike, and Howie, …I danced and danced! Oh…this is funny….you know how the kids do that thing where they get in a big circle and they are all dancing up and down but someone is in the circle…well Andrew comes over and grabs me and WE danced in the middle of the circle!! Now THAT was a God thing…I wouldn’t have done THAT in the “old me!” hee hee.

OH!! And then the surprise! At some point in the reception, the DJ said, “please come to the dock, the neighbors of Goose Neck Road have a surprise for the family”….and there were FIREWORKS! No kidding! Phil was over setting off REAL fireworks. It was like a fairy tale! I couldn’t believe it! Not a cloud in the sky and there were Erik and Christine looking up at beautiful, firey, bouquets in the sky! Our good friends George & Nanci, Susie & Steve and the GNR gang had us all speechless!

Well, at 11:45 I looked around and thought – ooops, I was supposed to be limping out of here at 9:00 feeling sorry for myself at missing the party and here I am! God, YOU are amazing! So many folks stayed right to the end, not just the youngsters! It was unbelievable! At midnight, the last dance came, we were soon tucked in bed, couldn’t believe the day that God had given us.

Sunday morning was another beautiful day….the gardens were again lovely ... perfect. About 150 people came back over for brunch by the water. It was relaxed and fun. Many of our Goose Neck Road neighbors came so that made it so special too. They have been so amazing this whole wedding week…AND they allowed us the special treat to have all of Frank’s brothers invited to stay on the road and so all week we had Marshall brothers and cousins walking and bike riding up the lane to stop and out. It was wonderful, wonderful, wonderful.

Whew! So what more can I tell you??…Frank, mom, the boys, c&e, and I are still amazed at ME! I am still feeling great. I would say that it wasn’t until 5 pm Sunday evening when Peggy Anne and Scott left that I finally felt like….hmmm, think I need a nap. I wouldn’t even say I crashed…just slumped! The kids left Sunday night, off to Barbados for their honeymooning. When they get back, Erik goes off with “his boys” – students from the high school where he is a Latin teacher - for a mission trip to West Virginia (I think) for a week. So they will have their honeymoon to rest and will be back at it when they return. Christine will start a new rotation in the Lockheed Martin Finance Leadership Development Program…for this one she will be based at the Pentagon..so she is very excited about that for the year ahead.

Chip left today, along with the Marshall brothers, to return to Southern California. He has a busy few days ahead with some flights scheduled…he is waiting to hear if he goes to back to the Middle East soon (like within a month or so) or later…(like next year)! So that will be our next news. Please pray that God will orchestrate that just right for Chip. As always, we had wonderful conversations with our USMC aviator Captain Chip,…but this time it was clear that the timing of “going to Iraq”/ “going on other assignment” will have long term ramifications b/c of other assignments that flow from this timing…like 8 years out! You military guys out there “get it” on this, but it was all very fascinating to me how one timing decision can have such an impact.

Andrew is still home to hover over mother, but we gotta get him out of here b/c he worries about me too much. (although I have to say, he has the quickest draw on the little buckets with the nausea strikes!.. and produces a nice damp cloth for my neck that I never realized felt so good! ha ha) Andrew will soon be off to be a counselor at a wonderful Christian camp up in Maine – google “Moose River Outpost” You’ll want to go too! It’s a high adventure camp for teens. Andrew will specialize in Wake Boarding and Paint Balling….oooo, it will be a tough summer of ministry! Hee hee.

As you saw from Sally, we are back to Johns Hopkins tomorrow for a nice blood draw then back to chemo. I’m ready. Yep. I AM READY! I think I will go back on the same cocktail they were trying last month…so please pray that the Oxyplatin/Xeloda combination is the right one for these pesky cancer cells AND that they won’t be so smart this time to out maneuver the chemo-poison so quickly. The side effects are nausea and fatigue….but I have been eating like a horse (um, thanks to the ½ steroid Ella Mae has me taking each day..rats..there goes my aspirations to be a professional athelete!) and have gained back a 4 pounds over the past week. Yay! Ali gave me some advice from her dad to try “sugared ginger” for nausea…so I’ve got my stash that Pam provided and I’ll try that for the nausea.

Okay. So BIG BIG BIG thank you to you all, and to God, for the evidence of His Love and your prayer faithfulness in this past weekend. Not just a beautiful joining of two very pure hearts…but the many, many, many tiny miracles during the week and days leading up to the day.

Pictures: !....We have 1277 pix that friends have already given to Peggy Anne on their “cards” on Sunday morning and the photographer (Laura Thorpe – In His Grace Photography) is going to put pix on her website..I’ll let you know the link (ABF Girfriends!!) and if you want, you can see the whole blessed day! – but now I feel as though I am being pushy. But I must say..it WAS a beautiful day. God was there. You’ll see.

All filled up and spilling over with Love for you all,

Carol

PS. Look for more pics later!!

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