A waltz is art not science. It is a gift.

A waltz is a dance or song done in 3/4 musical time which requires letting go of how we typically live our day-to-day lives.

Our digital world – which is all zeros and ones – is a march in 2/2 time.  How we live our busy lives is mostly in 4/4 time – one-two-three-four-one-two-three-four – repeat it all day from when you wake up until you go to bed.

But a waltz is different.  It requires a leap of faith after each one-two-three. If dancing it, each one-two-three begins on a different foot.  If playing a musical instrument, you cannot put the music into a box, it must flow freely.

As a man with two left feet who struggles with the electric slide at weddings – somehow finding myself face-to-face with people – a waltz is one of those things to behold with amazement and appreciation.

A waltz is not limited to music. There are people who are waltzes.  They handle every one-two-three with a leap of faith and maintain a flow into the next one-two-three. For the last 22 months, Missy waltzed with her cancer.  With every setback of this terrible disease, she would flow onto the other foot and keep moving forward gracefully, smiling and reaching out to others to dance with her. It all came naturally to her and every doctor, nurse, technician, medical office staff, support group person, cancer survivor, friend, family member, and every person she met since December 2017 was uplifted by Missy.  They were carried along on the next one-two-three in amazement and appreciation.  Their lives would never be the same because they had danced with Missy. Her gift of making everyone else feel they were the only and most important person in the world had left an indelible mark on their hearts.

Missy’s waltz with cancer ended Tuesday morning.  She passed away peacefully at home.  Until the very end, she continued to be charming, funny and lovely – uplifting everyone who came to visit her in the last few weeks.  One of the last things she said as her body was failing her was, “I just want to take care of everyone.”  She sure succeeded there.

This summer, with a few good months off of chemo, was a gift for everyone who spent time with Missy.  She had a more mellow, thoughtful, appreciative approach to every minute of every day.  Never any anger.  Never any frustration.  She opened herself up to strangers who she could see had struggles worse than hers.  She had the uncanny ability to key in on what was troubling someone and let them know that they, too, would be OK.

Missy had made peace with her situation.  A month or so ago, we met with Alan, an assistant pastor at our church.  She asked if she was praying wrong.  He told her there is no wrong way to pray.  It can be a simple conversation with God. She asked him what she could do moving forward.  What could she do to continue to help others.  Alan thought about it and said, “Maybe you can be someone that has God’s light shine through them for others to see.”  Missy tilted her head and thought about it for a moment.  Then just said “OK.”

An hour later she asked me how was she supposed to do what Alan said to do.  I told her, “That’s easy.  You’ve been doing that your entire life.”  As we went through the next several weeks and she continued to waltz with everyone, I would notice how she could get a smile out of everyone she met, and I would remind her that she was shining God’s light for others to see.  I don’t know if reminding of her of that was for her benefit or mine. It all came so naturally to her that the smile on the other face or the burden she lifted off the other person’s shoulders was just a part of everything she did.  It was simply the next one-two-three.

Until we meet again, Sweetie. I promise I will take dance lessons, too.

Things have been a little rough since returning from the beach. I have had fluid filling up space around my lungs making it difficult to breath. In addition the fluid pushes on other parts of my innerds causing my appetite to be impacted which we don’t need and I need to eat as much as possible.

Love my pesto and my Alex salad and a huge shout out to the Fresh Market crab cakes they are so good!

After having drainage done twice and one overnight in the hospital we decided to put in a permanent catheter so now we can drain at home when I need it. Steve has become a Dr in a short period of time and has learned how to do the draining because of the location I cannot do myself. Just another issue cancer brings into our life. Beth and Dawn have learned as well so we have lots of hands if needed.

Had such a nice visit with Matt and Betty and we have our new bucket hats from Matt for ride weekend!

“Maagnificant” picture of us all!

This week I have been working on getting ready for our trip to California and making sure we have all our ducks in a row and all meds ready to go. Hoping to ride some kind of mileage on ride day but also know I need to be mindful of my strength and balance. Please keep us in your prayers that I am able to make this trip happen as it is so important to me and with almost the whole family riding I don’t want to miss out on this special ride. We also have a few days of relaxation built in on the forefront that is so important to us to be with our family and friends.

Let’s remember to be thankful for all the love and support we are getting from all our friends! With this we can find our way to a blessing and a miracle. Dear lord please help me find a way to a miracle so I am feeling better as well as comforted by your grace and your glory.

This is my plan for tomorrow – a little vitamin d for the soul always makes one feel better. Take the time to enjoy the sunshine and bring loads of love into your heart and soul. Then after a little sunshine we will have to pack and get ready for our flight Monday morning to San Fran. Can’t wait to see my family and my ride friends – it is going to be a remarkable trip. Till next time my friends. I promise to post loads of pictures!

There are many definitions of the word friends – but the one thing about friends that I know for sure is that they don’t let you get away with anything and they love you no matter what. Friends also are always there for you and will drop what they are doing and will come running to be with you when you need them. They are also the best medicine one could ask for.

Well that is what I have been doing these last few days – spending time with two dear friends from college that know me so well, and love me no matter what. After this tough week our planned beach weekend couldn’t have been timed any better. We are laughing, telling old stories from college, sharing stories of our lives today and soaking up some wonderful vitamin D!

We have also done some retail therapy that is always good for the soul. Lucy and Chan have spent this weekend spoiling me and taking such good care of me. They haven’t let me lift a finger and have spent time just making sure I am fed and comfortable. These two beautiful women have known me for almost 40 years and throughout that time we have been there for each other no matter what. Their grown children have also been part of the joyous time we have had together along with their wonderful husband’s who have shared in this joyful friendship of ours.

If you have friends like this in your life send them a text, or call them and tell them how much you love them. Better yet if you can make plans to see them and fill your heart with love that no one can’t take away from you ever then do that! Love you my sweet friends, this has been a wonderful weekend that I will cherish always.

PS Cancer perk is the weight loss that might be too much but enough to publicly share a picture of me in a bathing suit that isn’t so bad! Trust me I would never have done that before – never!

Well I can’t top the beautifully written post of my sweet husband Steve and the love and support he has given to me during this journey. Unfortunately we didn’t get great news today and the trial didn’t work and I have had moderate spreading with a new spot on my lung.

We are holding strong cause that is what we do and we continue to figure out our next steps. I need to do a wash of the meds before I get my next treatment so I will spend the next 28 days staying strong and working on living each day to the fullest and within these days we will decide on the next steps.

We have our trip to California and the JDRF Ride coming up and so we will get ready for that and spend time with our wonderful ride community. We then have a lake trip planned for Labor Day so things to look forward to and enjoy!

Thank you for all your continued prayers and support we truly need them now as the fight is getting a bit harder but there is room for improvement! Love my warriors and all you have done for me.

Early last month, June 2019, there was a lot of news coverage of the 75^th anniversary of D-Day and the Allied troops landing in France.  The reports kept citing the courage of the brave troops who stormed the beaches in France.  It got me to thinking about courage and bravery.  To me, courage is a character trait and being brave is putting courage into action.  The men who got on the boats in England showed courage.  Those getting off the boats in France facing overwhelming firepower from German troops were brave.  Very brave.

It made me think about Missy’s courage and bravery (and fierce pants) as she has battled her cancer for 19 months now.

Her courage, her character trait, was in accepting the facts and moving forward to fight back.  From the very beginning, she showed courage by making sure that chemo was started before Christmas after her December 9 diagnosis – wasting no time in getting started.  Her bravery has been with her every day since. After the first chemo had her on the bathroom floor sick as a dog on Christmas day, and many days after that, she pressed on knowing how tough it would be.  She went through the surgery with optimism and hope as her innards got rerouted and half her pancreas was removed.  When the news that the cancer had spread and was stage four in June 2018, she did not hesitate for a minute to jump into a different chemo treatment and then stick with it for 10 straight months. Throughout this chemo, her oncologist kept telling her that the chemo was not a permanent solution and that at some point she would have to move on to an alternative treatment.  Even though this chemo has been very effective, the human body is so smart that it can adapt to even the nastiest, strongest chemo and render it less effective. The oncologist kept saying you need to be nimble meaning there is a balance between the chemo working and when you decide to move to the next treatment.  You need to be healthy enough to do it – and courageous enough.

So, Missy got into the clinical trial at Chapel Hill.

Before I continue, those of you who know Missy know that there are few (really no) challenges that Missy backs down from.  If you’ve seen her on skis or a bicycle, you know what I mean.  On our first ski trip together, we were going for one last run down the hill, and I knew she would be down at the bottom well before me. I actually got to the bottom first, because she decided to ski up into the trees hit a little gap that flipped her upside down with a ski caught in the trees.  The ski patrol had to help her out of the tree. The point of this is that not only is she fearless, she embraces every challenge with a certain flair that makes her, well, Missy.

So when she began the clinical trial, we found out that she was only the 11^th person in the world to have started this trial. Just 11 in 7.53 billion people.  I’ve always known Missy was a one-in-a-million person, but if my math is correct that makes her one in 684,545,455. Quite a bit more special.

The trial itself is fascinating science.  The drug is a protein-receptor-inhibitor targeting the genetics of her particular cancer.  It inhibits the ability to accept the protein that her cancer feeds on.  Cancer cannot grow without something to feed on.  So, at the basic level this drug is designed to starve the cancer from what it needs to grow.  Brand new science and not for those without courage and bravery.

Right now, it is late Sunday night, and we are in Cary, NC (at a very nice hotel, did I mention this is Missy), and we will go to Chapel Hill tomorrow to get the results of a CT scan taken today to see how effective this experimental drug has been for the last two months.  Missy is asleep right now, but it has been a tough few days as we have been anticipating the results which could mean any number of things.  Ideally, it shows that this drug is working, and we stay on the trial for the next phase.  If it doesn’t, we have to find another beach to storm.

Overall, Missy feels well, and the three months without chemo have brought the old Missy back.  The chemo is really nasty stuff.  It keeps the cancer at bay, but it is no way to live.  It took a good six weeks without chemo before Missy was really herself again, and it has been so wonderful for everyone to have her back.  Especially me.  She has fought so hard through ups and downs, and little things like walking the dog together at night or going out for ice cream are like we are doing it for the first time again.  Little joys are huge joys again, and little setbacks don’t even matter anymore.

As I’ve written before, this is a helluva way to grow closer together, but we have cherished the good, the bad and the ugly of this cancer voyage. I cannot even remember Missy with a full head of hair anymore – without looking at pictures – and it doesn’t matter. She is prettier than ever.

One of the most amazing things has been coming to Chapel Hill for the trial visits. The treatment in Charlotte has almost been “concierge medicine” by comparison to Chapel Hill.  This has nothing to do with quality of treatment but more the environment. The oncologist office and chemo/infusion center that Missy has gone to in Charlotte is relatively small, close to home, and very concise.  The Cancer Center at UNC is a massive operation.  While we have never had more than a dozen people in the waiting room in Charlotte, there are typically a hundred or more at UNC and that is just in the section where we go for the trial.

It is a hugely humbling experience and in a strange way very rewarding to be a part of.  At UNC you see people who come from all over the state and from EVERY walk of life.  Recently, I saw two brothers – probably in their 40s – who were huge.  They must have played football in college, and one was very sick with cancer, and the other was wiping goop from his eyes.  When he was done, the sick one just hugged his brother and they both had tears running down their cheeks.  I stopped to talk with an old couple who were working on a puzzle that Missy and I had brought to the waiting room.  They loved puzzles, had been coming to UNC for two years, and always liked when a new one was there.  We find ourselves holding elevator doors for people who are worse off than ourselves, and talking to all sorts of strangers – engaging as brethren in this club of survivors and caregivers.  Often, you don’t even have to say a word.  You look into the eyes of someone in the waiting room at UNC and get an acknowledgement back of “go get ‘em too.”

There is so much more about the last few months to talk about, but it’s time to get to bed and try to sleep tonight. We need to strap on those fierce pants and go get ‘em tomorrow morning.

July 17th

We are in the final week of the trial and get scanned on Sunday and results on Monday. As of late I have felt really good having been off chemo 13 weeks has made such a difference.

I have been exercising and training for my ride.

Been spending time at the pool working on my tan.

Have read another book and have started book #3. Life has been full of adventures and creating memories with family and friends.

Have enjoyed visits with my mom and sisters as well as a visit from my college friend Suzie! I am so blessed to have another visit planned with two friends from college at the end of the month and our trip to California and the JDRF Ride to Cure in August! We will be adding a few days on in the beginning of that week to get some quality time in with friends and family.

Have discovered that I have fluid on my lungs so having that drained and my scans of my abdomen will be on July 21st and results on the 22nd to tell if this trial is working. So needless to say I am a little anxious but trying to stay positive. Thank you everyone for all the prayers and positive vibes being sent my way. I absolutely feel their effects on my improvement. Millie continues to keep an eye out on me and my surroundings as well as comforting me when I am feeling down. More to come once we have results next week till then I will keep a positive outlook on my continued improvement!

We are four weeks into the trial and everything is rocking and rolling. We continue to roll up the road to Chapel Hill weekly and have now become regulars at the Homewood Suites! I have continued to improve everyday and I can’t say it is from the trial but probably more because I have been off chemo for 11 weeks. This is making me feel more and more like #vintagemissy.

The biggest struggle continues to be keeping weight on. They tell me to eat like a teenage boy which is not normal at all for me but I am working at it. All my bloodwork is in the normal range and they have been very pleased with this. I try to make these trips little adventures like an excursion to the NC Botanical Gardens with Betty last week!

Here are some other exciting pics as I have been getting out and riding my bike who has finally gotten a proper name after all these years “Grace”.

As of late I have been going out more and more and enjoying date nights with Steve and celebrating my friend Erika’s birthday.

Mom was recently up for a visit and we worked on the container garden and other things around the house.

It is amazing how much better one feels when you are off that poison they call chemo – I just can’t explain how much better I feel. I have moments during some days that I forget I have cancer oh how I wish this was true and that this trial is our miracle.

As I sit out catching some sun on various occasions – I say my prayers and thank god for all the successes we have had thus far!

I think I will have the best tan I have had in years this summer! Might as well take advantage of this time out of work! Speaking of work, we will decide once we learn how well the trial is doing what my next steps are for returning to work – since I am out and about exercising and have read a book in its entirety, now I just need to get working on my jewelry as this is the final step to going back to work – at least that is the steps I have set for myself.

May 28th

Started out our trial with a weekend at the beach!

We filled our weekend with bike rides for Dawn and Steve and I got up and rode my road bike for the first time since Oct 2017. I will be honest and let you know that I tried riding the bike on Wednesday before the weekend and unfortunately I took a fall before I ever took a pedal. So road rash on hip and elbow and nothing broken, just my ego.

In hindsight I shouldn’t clip in so I have switched out my pedals and started my ride in a lower gear hence why my ride this weekend was a success.

The weather over the weekend was hot but it made the ocean so delightful. I went in and even got knocked over by a wave, yet again an ego knock.

Then we were up in Chapel Hill and the trial has started. So far the first week has been uneventful which is what we want. The first day they drew my blood every hour or so and monitored me for side effects. The remainder of the week I had daily blood draws and meeting with the trial team and then headed home on Friday.

On the first day we walked outside and said it is a beautiful day for a cure. We are very ready to find a cure for me but also to help find a cure for others.

We are now back up at Chapel Hill for a weekly blood draw. Since last time we were here I have walked 2 miles, did my exercise class of cardio and weights and rode my bike 3 MILES! Need to keep eating to put on some weight 10 lbs would be great, I am going to have to eat like a teenage boy to get there quickly! Since I have never eaten like this before it is a bit of a change but one Steve is very helpful in guiding me!

Been enjoying feeling well this past week and even finished my first book since 2017! My attention span and focus being off chemo has improved greatly! #vintagemissy is showing her smiling face more often and it makes for a delightful day. Your prayers, texts, emails and calls are so appreciated and keep my spirits up. Thank you all so much for being part of my tribe of supporters! More trial info to come soon!

May 6th – And the journey continues with the next chapter. Our meetings at UNC went very well and I am excited to have gotten a spot in one of the trials. This is the best news we could have hoped for! When I was diagnosed I said that there was a reason for this and I still believe that – a trial is done for all drugs and everything and anything we all take had someone like me testing it first. So as you know a trial is risky but being the risk taker I am it is also the way to find new drugs and treatments to save people’s lives.

May 10th – We spent Mother’s Day with mom in Wilmington and it was great fun with laughs and shopping and a trip to the Trolley Stop for an hot dog. Went out for drinks Saturday night and then ate a wonderful lamb dinner. All the good food at mom’s has me up another 3 lbs to 111lbs – chubeto!

May 13th Steve and I are back up at Chapel Hill to sign paperwork, do baseline labs and tests and determine start date of the trial. I am very excited, which sounds weird when talking about cancer, but I have a good feeling about where we are heading! Having Steve with me gives me comfort since I am a bit nervous, the unconditional love is felt so deeply and is such a comfort. We have done our EKG and our blood work. Drank the lovely contrast for the CT scan and then we headed home and we will be back May 27th to start the trial on the 28th. We will be at the Homeword Suites May 27 – to the 31st and then back for a day the following week! Homewood wouldn’t have been my first choice but I really love the set up with two rooms and a fridge and burners to cook on! It is perfect for our stay up here. They have an outdoor pool so I can work on my tan! Without chemo in the last 28 days and no more unless the trial doesn’t work I should have the stamina to sit in the sun and get a nice tan for the summer.

The trial I am on requires a pill once a day! As long as it works and there are still drugs I can stay on this trial as long as possible. Scan is completed and I have a copy for Reza!

Ready to enjoy the next two weeks with no chemo and no poking and prodding. Will be in good shape to enjoy our Memorial Day at IOP with friends and know for sure there wi be loads of laughter, puzzling and relaxation.

Thanks all for the prayers and continued support! We are going to win this war against this cancer and I couldn’t do it without all your kindness and support!

Blog Update

Unfortunately I received a call this morning telling me my tumor markers had gone up to 234. I have not seen over 100 very often so over 200 is a little scary. BUT remember we are already on the clinical trial route which is the direction we would go with this number so we are on the right path.

I post to ask for your prayers for my ability to fight this, understand this and guide me in the right direction and do the right thing and that I meet the criteria for the clinical trials. Cancer still doesn’t know who they are dealing with – watch out we will beat you down to a pulp!

Thank you for everything you have all done for me and for your continued prayers. Even Millie and flea have their prayer circle engaged.

Millie with her Easter Flea from her Aunt Bebe! Loved having family here for Easter weekend. Saturday we were supposed to be gardening but it rained and it was a bit chilly! Suzy and Bill arrived as did Will and Maria on Saturday and Alex arrived on Friday so we got an extra night with her. Mom came on Thursday and Friday night dinner was at Beth’s and was delicious.

So what do you think of the pixie wig! My wonderful friend Tish saw it being worn in a school play and she asked them where to get and they gave it to her! It is the best one so far! I am digging my outfit too!

Picture of me and Mom on Easter Sunday! I think we both look 20 years younger! The weekend was everything you wanted it to be and most of all I loved the laughter!

Our next steps are clinical trials and we will be doing lab work and Dr appt at UNC starting on May 6th as this is our first choice for clinical trials. We have to meet certain criteria to fit into the trial so over the next few weeks we will know more and more. Loads of prayers for this to be the right trial for me and if not then we are pointed in the right direction for the right one.

This week has been a bit of a whirlwind. Monday I felt great but then Tuesday I felt really run down and down right rotten. Wednesday was better than Tuesday but not as good as Monday. All I ask for is to string more than one day of good days together. This spinning around and not able to feel good more than one day in a row absolutely sucks! But I am trying to look at the bright side of things and embrace and celebrate the good days.

As we prepare for clinical trial the first thing is to get into it and meet the criteria. This piece obviously most important and we are eating loads of protein to up some of my numbers. I am off chemo as you must be off chemo 28 days before you can start a trial. This will help my counts/labs as well as my strength and well being. There are 4 trials to look at and if these are not a fit I can go back on chemo and at least I have had a break.

Continued prayers and thoughts are so appreciated. I have a good feeling about the trial but I have to meet the criteria first! I will continue to workout with my Livestrong Group at the Y which started last week and is the most exercise I have done in a year. The group is made up of survivors and those in current treatment so there is always someone to bonus ideas off of. I promise to be strong to combat these demons who want to take over – they clearly didn’t read the no trespassing sign.

These last few weeks have been full of doctor visits to see what clinical trials are out there for me. We have found three BUT the time is not right to stop doing what is working and go to a clinical trial. Deciding on when to move to the clinical trial is the most challenging task. You don’t want to stop doing something that is working such as my current chemo treatment but you need to be mindful of when you can get into the trial. So as we continue on this course we are being mindful as to when we can get into the trial! One get thing about the trial is that I will be off chemo for 4 weeks – what an awesome break for my body! Dr Reza says we have to stay nimble with this and respond as quickly as needed – it reminds me of what my grandmother said to me which was always be flexible…bend like the willow.

What an extra special treat steve planned for our visit to UNC and we stayed at The Umstead and had a fabulous spa afternoon and little overnight in Cary.

The best was when we got to the waiting room at UNC and there was a puzzle for those waiting to enjoy. I thought this was a brilliant way to take you mind off why you were there. As you can see Steve jumped right in on that puzzle. What a relaxing two days of spa treatments and steam baths and nature walks and puzzles – a perfect two days!

A few weeks later we had a wonderful visit with Tish and Tess came up for one night. There is nothing like childhood friends and a double treat is to be friends with their children too.

My heart is so full of joy with all the love that is showered on me. Wednesday my sissy worked from here and helped me to organize and put away laundry and kept a close eye on me during the day. Then the next day Steve stayed home and watched over me. My little body is being beaten up from this chemo and I need a break! I hate this for me and I wish this on NO ONE. I feel like I have been hit by a bus, I am not sure exactly how that feels but I am guessing it feels like someone pounded on you till you can’t move. I just wish I had some way to be less lethargic and had better energy. And you know me I have a ton of energy so not having it makes me sad on top of everything. I am trying to turn the sadness into joy cause as my mom says chemo is what will make you better and is your friend.

Another exciting adventure is we got out with beth for her birthday dinner 2 months late but it was nice to get out and celebrate her. She has been such a rock for me during this time. God brought her to Charlotte for a reason. Our new couch also arrived and Dawn and John came by for drinks to break it. A wonderful evening full of lots of laughter and joy!

Spent 5 days at my Mom’s who took really good care of me and watched over me. I know this is hard for my Mom and I do my best to keep her positive and smiling. This is really tough for her which I hate.

I will post again sooner this time as I am thinking it may be time for plan B and clinical trials to start. Thanks to all that have supported and loved on me and Steve, we could not do this without all of you!

One of the greatest gifts this disease gives is the memories it forces you to create. Steve and I say we want to do something and we do our best to do it and not wait. Love that we don’t wait and that we do it sooner rather than later. One thing I have done in the last month was go in for a visit to the office and see everyone. I got to see so many people and meet with my manager. According to sweet Michele I put a smile on everyone’s face. Surprise! They put a smile on my face. I saw Brett, Michele, Brooke, Jeremy, Kim, and Loraine. It felt good to get all dressed up and be human.

I am including below some pictures that have been taken over the last few weeks. The pictures of furniture and rooms are new updates we have made to make it more livable and homey. Also some pictures from the Pink concert which Beth, Rachel, Betty and I went to last weekend – a BLAST!

Hope you enjoyed the photo album and that it brings a smile to your face like it did mine.

I am such a lucky girl and the outpouring of love has never subsided. People continue to be there for me and Steve to help in anyway possible. These last few weeks have been pretty good and I have tolerated my chemo very well! The biggest side effect is fatigue and to ward it off I take 2-3 hour afternoon naps.

We had a little scare with the tumor markers rising to 120 so we did a scan and the great news is that the scan showed more shrinkage of the tumors in the last 6 weeks and no spreading. Dr Reza was so pleased with these results. He was pretty sure we would have a good scan. He didn’t think it would be as good as it was! Prayers are being answered! Next step is meeting with a Dr here who has clinical trials and so far I am a fit and going for the consult on March 11th. More to come in the next blog post.

As I continue to stay busy, one of the greatest accomplishments is I finished Steve’s needlepoint belt after 4 years and along with one other project. I have now started another project of a foot stool cover and also finishing up a pair of flip flops that I have had in my bag for years. It is amazing that my attention span is terrific with the needlepoint but not with the reading.

I am still working on reading a book and I am having a really tough time with it – they call this chemo brain, ugh so annoying.

I have had some adventures these last few weeks and have some socializing as well. I went uptown twice, once for a meeting and the other time for lunch with my friend Maureen. She is such a joy to be around and she keeps me smiling and laughing. I also had a very successful cabi show at my house and it was so fun to see my friends.

Then my mom was in town while Steve was out of town in Mexico on business. It was so comforting to have her here with me and we had so much fun doing some cooking and other projects together. Then one of my college friends Suzie came into town for a few days and this was such a treat and enjoyable visit.

I will be honest and say I am a little sick and tired of being sick and wish that this was just a bad joke and that one morning I will wake up and it will be gone! I don’t mean to be a downer but sometimes it just overwhelms me and bums me out. So to rise above this and not let it get me down I give myself small projects like organize my pantry or clean out under a sink. When I do these projects I shake my head at some of the things I find – man the money I would save if I checked the pantry before buying – that goes for Steve too. I found 3, not 2, 3 boxes of ziploc bags all the same size in the pantry and then was told there were more in the garage. For the love, they are multiplying like crazy. Not to mention the spices oh my they are a project in and of themselves.

Sweet Millie continues to watch over me even when others are around. This is Millie giving friends space to visit with me while she keeps an eye out from a distance.

We had some friends over from our JDRF Ride team and it was so fun to entertain in our new kitchen! It is so fun to have friends over and to hear the laughter and joy that they bring to our home. Some upcoming events are to continue working through what our next course of action will be for when it’s time to switch up the current treatment. For now we will stay with the current treatment as long as I tolerate it and it is working. Thanks to everyone for all the support and love that is showered on me and on Steve. We are so blessed and fortunate to have the team of friends and family around us whenever we need it even when we don’t realize we need it. As a friend said to me recently – I am not worried about what you say, it is what you are not saying that worries me. This is a very true statement and observation but I try to be upfront and honest with my feelings but keeping a positive attitude is half the battle of beating this beast.

More to come with the clinical trials and our adventures living with cancer and not letting it take over our lives!

Jan 21st

Jan 14th was scan morning and I know I was anxious cause I didn’t do any talking on our way to the radiologist. Steve said he knows when I am anxious because I start babbling or I get very very quiet. This day was quiet as I went into the scan.

Millie wished me best wishes before going into scan – if she was allowed to come we would bring her with us, she is such a source of comfort.

Scan came back that the cancer is stable. This is good news cause the cancer has shrunk a little and there is no evidence of spreading. We will continue chemo treatment but start to look into Plan B and see what clinical trials are available to me and I would be accepted by. Our scans and reports have been sent out to Scottsdale and Reza is on his way to San Fran for a conference and any new findings he will learn about. Saying prayers that there are new opportunities for me and where I am in my journey.

I had a wonderful visit last week and shopping/buying spree with Marinda. It was so fun playing dress up with Worth New York! I even found a few things for when I go back to work hopefully this qtr!

Since last blog I have had some rough days and have had my peeps around to help. Dawn and Cari worked from “our drop in” space a few days after Chemo! It was so comforting having them here watching over me. This picture makes my heart swell!

This is my other caretaker – she is thinking we hid a treat in her toy “flea” so she is digging in fleas head to find it. Unfortunately it wasn’t there but we gave her a treat later in the day – remember my post on food issues well they are totally real – I watch Millie’s snack intake so she doesn’t get too chubby. It is an issue when you are monitoring your dog’s snack intake!

Chemo treatment on January 17th has thus far had limited side effects and I have been resting and taking it easy. My chemo had to be moved from the 15th to the 17th because my counts were too low and I was not strong enough to battle any infections. My counts came up on the 17th but still need to be mindful of being around those with a cold, flu, and crowds. I have been watching my temperature and I have been taking Tylenol to help strengthen my autoimmune system. The stronger it gets the better I feel and the side effects are less and less.

I am sorry there hasn’t been too much humor in these posts but I will work to improve that in the future! In closing out this post the best part of this cancer is I can eat whatever I want and yep there I go with food comments again! Every night I get ice cream and my favorite food this week is a turkey sandwich or a grilled cheese sandwich with tomato and rice soup.

Thank you for all your well wishes and ask that you continue your prayers and well wishes so my cancer continues to shrink and there is still no spreading. As my friends say…we have lots to do so I need to get well soon!

Last year at this time was brutal and we have spent this past year battling the beast! So this year we went back to our tradition and spent the week in Kiawah with the family, a tradition that means so much to me. Being in Kiawah and at the beach makes me feel like my Cancer is far away and I am given time to pause, relax and not worry so much.

We have enjoyed every moment of our trip. We have walked the beach, biked, puzzled, shopped, spa’d, cooked and enjoyed each other’s company.

Monday night we did a cook off between two teams. The theme was Italian and team 1 decided to make spaghetti with a bolognese sauce and team two decided on filet wrapped in prosciutto and served over spinach.

The event ended in a tie, we had 4 categories and it was even with each team winning 2 categories. It was such a fun time and a new Christmas tradition that will continue for all upcoming Christmases.

One thing that we do every Christmas is the family picture. This brings the most stress over our Christmas week. Getting six women dolled up and camera ready takes an hour but this year we did it in record time of 15 minutes and it came out really well – at least I think so!

I have been feeling really good this week and only had a few moments where I wasn’t feeling very good but the feeling good days really trumped them! We were able to push out treatment 6 extra days which will also help with my next treatment cause I will go in stronger! My doctor and I do quite a bit of negotiating on my treatment especially when I have upcoming plans that I want to feel extra good for. I have been so lucky that I have felt well to attend and/or travel to and participate in events this fall and this holiday season. I have been to the beach 3 times, as well as a trip to Saratoga Springs and Scottsdale!

I truly have the most amazing oncologist and palliative care doctors. My palliative care doctor was at my finger tips going into this trip as I developed an infection and we were able to get on an antibiotic and within a day I was all better. She was kind enough to give me her email and she responded so quickly and called me! So blessed!

On our final day and we had a visit from my dear college friend Lucy and her daughter. What a treat! Nothing is better than a hug from a dear friend, which will carry me through the next treatment round on Monday!

So here are some more pictures of our trip. If you look closely you will see that my mom is in a sling…in prepping for our trip she fell from a step stool and broke her wrist. Unfortunately she will need surgery which will be next Thursday the 3rd and then she will be good as new. She is navigating things with one hand really well including painting with her granddaughter.

We are all packed up and headed home, where reality smacks you right in the face, Incase I had forgotten my reality of living with cancer! But what this cancer doesn’t realize is that I plan to beat it and will fight with all my mite to get there. So step aside I’m a comin for you! Happy New Year 2019 is going to be my year!

December 12th

It has been a bit too long since my last blog. It isn’t because of any bad news, just preoccupied and trying to manage my feelings. Since last post my tumor markers went up to 108 but have dropped as of Dec 4th to 73! This means the cocktail with two chemo meds is working! Side effects from the last couple of chemo rounds have not been too bad and it has been mostly fatigue within 72 hours of the chemo!

The few weekends after the Gala we had the PanCan walk “PurpleStride”. We had a total of 22 walkers/runners to support Missy’s Mob – what an acknowledgment of how much I am loved and supported during this time.

Since then we have traveled a bit; Wrightsville Beach for Thanksgiving with family and friends. It was a beautiful long weekend with the exception that I was very tired during the days. I finally realized it was the sleeping pills I was taking each night. So since stopping those I have been doing much better during the days!

After Thanksgiving I had another round of Chemo which I tolerated really well and our next trip was coming up! This was to Kiawah with friends for the Kiawah 1/2 Marathon and celebrating Dawn’s birthday. It was a weekend filled with loads of joy. Congrats to John Uszacki for completing his first 1/2 marathon successfully – So proud of him! We also got to see my GI doctor for a drink on Saturday night at the Sanctuary – Saturday was my one year as a Pancreatic Cancer survivor! Our treatment is working and we will continue to fight this beast!

Me and my GI doctor, the best in the land – Jason Lewis

The Uszacki Four

Congrats to Dawn, Brook and John for finishing the Kiawah 1/2

Matka, Steve and me on the beach Friday

John, Dawn, me and SteveDawn and me

As I write this I continue to feel good and have had my last chemo treatment before Christmas. I am now planning our return trip to Kiawah for Christmas with the whole family.

I am also working in New Years Eve plans. My friends call me the Prime Minister as I love to plan – this keeps my mind off of unpleasant thoughts and feelings and having things to look forward to! It will not be a major blow out but I promise you it will be filled with good food!

My weigh in this yesterday showed me up six lbs from last week and the highest since Aug! Must be all the cookies I baked last week and soup I made! I have had enough energy to cook every few days and do some laundry! As much as I hate chemo I have to remember it is my friend and the only thing getting me well! I am working hard to fight this terrible disease!

Thanks to everyone for all the love and support and reminder that all this is what is helping me beat back this terrible disease. Prayers and good tidings are the best part of my days – big hugs and thanks to all! I wish everyone happy holidays and loads of joy and love to you and your families.

November

What a great few weeks! Have been feeling great and have started physical therapy and started walking at least 3 times a week and have gotten up to 1.5 miles. I have been doing exercises as well. All this has made me feel human again!

Well I love to see my chubby checks in the pictures which I would love to say is from putting on weight but really it is from the steroids but I will take it. I have put on about 8 lbs and keep working on continuing to gain.

This weekend was the JDRF Hope Gala and we put together three tables to host 34 friends and family and it was a magical evening. We raised $1.4M to turn Type One to Type None. We also added at least one new rider for next years’ ride – welcome Tish Tregellas to our ride team! Here are some pics from the evening.

The evening was truly magical and the outpouring of love was palatable! The honor that JDRF board members and the Bennett/Mays family bestowed on me was so very humbling and I assure you I will continue to make you proud. The biggest surprise of the day/night was the visit of the Thomas family who came in from Utah and Brandon speaking at the gala! He was a rock star!

As I said Saturday night I will continue to bid year after year as well as pedal with my ride family until a Cure is found!

Now that the weekend has wrapped I had my chemo treatment on Tuesday and trying to do what ever it takes not to have too difficult side effects by walking and drinking lots of fluids. The side effects of this treatment have been difficult in the past so we are keeping our fingers crossed that we can overcome them this go around.

I have been a little sad that I won’t feel well as I anticipate this next treatment cause there were days these past few weeks where I felt like I didn’t have cancer and they were just amazing.

One thing is that we did see a slight rise in my tumor markers in the last few weeks but this past week we saw them drop again so now at 74 from 92. We will run them again next week so fingers crossed.

So now it is time to plan thanksgiving at the beach! It is wonderful to have things to work on as it keeps me busy and allows me to play my role of Prime Minister!

Thanks to all who came into town for the gala and all my friends locally who attended. Thanks to all who continue to send up prayers and reaching out with the kind words – it is giving me strength and courage to fight this battle! I couldn’t do this without any of you. A special thank you to Steve who I don’t know how I would battle this without his support and love!

It was tough week but with some new meds to help get rid of the nausea, by Friday I was much better. My scans were moved to this morning and we have great news! There is a significant change from August with tumors shrinking and no spreading. 🎉👏🎈I have had a great day today just living in the joy of this news after such a rough week!

To help move from fear to joy I was able to get a few projects accomplished. Here are a few of those projects:

Beth’s front door wreath

Necklace for Betty Bash

In addition to projects we also attended Betty Bash on Saturday which was a beautiful day to be out and about and an awesome event! Sunday we had a picnic and tried a new bakery! All of this eating put 6 lbs on me which makes me so happy!

Next steps are chemo this Friday morning and it will be the lite version so shouldn’t take me out for more than a few days! We will keep our eyes on the tumor markers and see how this chemo cocktail does. I can’t thank everyone enough for the wonderful prayers and support. Steve and I are so blessed! I will continue to put my best foot forward and kicking this beast to the curb – even if there are days where I feel the beast is winning. Just remember “I AM the storm”

Oct 7th

Fear is an emotion that can immobilize you and stop you from living a full life. I would not be truthful if I said that I was not fearful and worried a lot of the time. But because I have great friends who provide me with guidance on how to fill my time with joyful things so that fear is not at the forefront of my mind that I don’t spend much time in the fearful space. But the last few days I had to be reminded how to manage my way out of this space. Thank you Dawn and Annette for the guidance and the projects and deadlines so that I have things to fill up this time with joy rather than fear.

I got tumor marker results showing a bump up 6 points. 6 points is really not very significant although because I have not been feeling great it makes me very nervous and fearful. So today I am going to work through the fear and bring the smile back to my face! I have to remember to make the most of each good day!

Remember that you are stronger than the storm cause you are the Storm!

And how lucky am I to have Millie always watching out for me!

I will continue to fight fear head on and to allow those around me to help me move past it. Nope it isn’t easy and curling up in bed or on the couch with Millie isn’t the ultimate recipe – but it is ok for a short period of time. Then your loved ones will make you get up and get out of your own way! Thanks everyone for all your love, continued support and prayers this is what has made this journey a bearable one.

Sept 30th

Let me start by telling you the tumor markers continue to come down – we are now at 51! Our goal is to keep them level or come down and we have been so fortunate to continue to see them come down. This means the chemo is working and killing the cancer! Unfortunately sometimes it feels like it is killing me too.

So let’s talk about something fun and talk about living. Let’s talk the 2018 JDRF Ride to Cure weekend in Saratoga Springs – it was magical, the best ever, humbling, joyous, inspirational, and so much fun. This group of riders, 400 of them raised $1.5M to turn Type One to Type None – goosebumps! I spent five days feeling better than I had felt in nine months – that was remarkable to say the least considering I wasn’t sure I would ever feel like myself again. I smiled for 5 days, felt empowered to kick betes for Alex, felt so much love and just never wanted it to end. Our team of riders was the #5 fundraising team and my sister Suzy was the #10 fundraiser out of 400. And because of all of your support I was #3 raising the most money I have raised for any of the seven rides and raised over $34,000.00! So many people to thank but the big kudos go out to Astrid for her Flowers for Missy Fundraiser that raised over $15,000.00 – AMAZING! It was such a special treat to also have my niece Annie come in and be there to root her Mom on and support her sister in finding a cure!

Other highlights of the weekend include the surprise arrival of Paula from NY, Missy’s Mob of riders from Team CharlUtah, each rider successfully reaching and exceeding their physical and fundraising goals and my being honored with the Spirit Jersey! This jersey is given to the person who embodies the spirit of the ride program. I am so humbled by this honor and will wear this jersey with pride and promise to continue riding till one is none! I even wore my jersey to chemo the day after I got home – channeling all that good juju even in the chemo chair.

So what is next – as my markers continue to come down we are going to make a tweak to my chemo cocktail for next week to help with my quality of life – it is tough to be on top of the world with good energy for 5 days and then come back and have chemo kick my butt so that I can’t do very much at all. My Dr feels really good about how well I am responding to the chemo and wants me to get back to exercising and have more energy and attention span so that I can start training for my next goal. Beside kicking cancer’s ass, I am registered along with Steve, Dawn, Jennifer and drumroll John to run the Kiawah half/full marathon on the annual diagnosis of Lucifer Dec 8th. I told you I would ride the ride and I did, I will do the same here, I will run my race and not let cancer get in my way.

The support and love that life’s me up on a daily basis is so inspiring and overwhelming – I am one lucky girl! Thanks to each of you for all your love and support – this will soon be in the rear view window!

Sept 8, 2018

I know it has been awhile since I have blogged and I am sorry for that – lots going on so let’s jump right into it. As of right now we continue to see my tumor markers drop – as of this week they are down again and now at 65 – remember they started at 670! My weight continues to be a struggle and we think it is lack of absorption – so back on the digestive enzyme pills.

My chemo treatments have been altered to one week on and then one week off. This has helped a bit with quality of life as well as my blood work and cell counts. As I sit here today I am a week and a half out of my last chemo and was strong enough to head to Jennifer and Doug’s vow renewal ceremony. My next chemo is on the 17th.

Our Arizona trip was very successful and we know what our plan is when we need to enact it. Which will be when we see that this chemo either stops working or I no longer can tolerate it. We learned that there are clinical trials all over the country that we will consider and could qualify for when the time comes and we have all the right doctors in place. I know you are thinking what is that timeframe; unfortunately none of us, except God, knows that answer so we will leave it in his capable hands and continue to follow his lead!

While Steve and I were in Arizona we had time to relax by the pool and enjoy each other’s company. We went out to dinner and I ate more then my usual ham sandwich! It was not only good physically but it was good for our soul as well. Our next adventure is JDRF Ride to Cure in Saratoga Springs, NY. We leave on Sept 12th and the ride is on the 15th. There are so many wonderful people that are part of the ride family who will be there and fill my soul with loads of love while fighting for a cure! I too continue to fight for a cure and plan to cross the starting line with many of my chapter riders, friends and family the morning of Sept 15th. If you are interested in donating to my ride please go to Kick Betes for Alex. Your donation is greatly appreciated.

Some more good news – to try and get to the bottom of my stomach pain, I had an endoscopic ultrasound yesterday, by the wonderful Dr Lewis, and he didn’t see anything that needed to be biopsied and no ulcer. He was able to do an ablation of the scar tissue around my pancreas in the hopes of taking away some of the pain – he usually sees positive results in 85% of the cases. So although my innerds are a bit sore we couldn’t ask for better news and are so happy that everything is moving in the right direction.

Oh yes you are wondering about the title of this blog – let me leave it at this. I was introduced recently to the works of an extraordinary group that provides spiritual support to those going through difficult times. If there is someone you know that needs some support and prayers please look up 12ordinarywomen.com. I experienced great joy through Grace on a Sunday morning in August.

August 2nd

And…tumor markers are down again from 270 – 113. More than half!

So blessed. Lucifer you think you are doing a number on me but we will not let you. There is too much to do and accomplish. If you haven’t read the blog post by Steve – The Real McCoy, grab your tissues and read – he is an eloquent writer and the love of my life.

In mid-June, on a Saturday night, I sat on the kitchen floor and begged God not to take Missy from me.  Four days before, we learned that her pancreatic cancer had spread to her liver.  After surgery in March, she was declared cancer-free, but the scan taken as she began follow-up chemo revealed that the cancer had spread into to her liver.  Metastasized. She was now Stage 4.  In an instant, all the pain and heartache she had been through for the last seven months meant nothing.  We were back at square one, only worse.

The same day we got the diagnosis, Missy had moved into her sister’s house in Charlotte because we are having our kitchen renovated, and she needed peace and quiet, along with a stove, fridge and dishwasher – which had been removed and sat unplugged on the porch or in the garage at our house.

So, on this Saturday night, I sat on the kitchen floor of a totally unfunctional kitchen with no cabinets on the walls, and begged God until I ran out of energy and ran out of tears.  We have so much more we need to do.  So much more to do with family, with friends and neighbors, and so much more we want to do FOR others.

The kitchen was remarkably quiet – no appliances running – and I had a “Cool Hand Luke” moment where I waited for an answer.  The answer came through the silence.  It was all on Missy and me, but if we worked hard enough, God would have our backs.  It brought back, or maybe came from, an expression that I have always trusted: work like it all depends on you and pray like it all depends on God. Regardless of where you stand on religion, this is true.  Sweat and motivation and confidence make things happen.

The next morning, I decided to go to church where I use to go to church 10 years ago.  I needed some place familiar to sort through all that had happened in the last week.  This church is out in Mint Hill, about a half hour from home, but it always felt like home. When I walked in, I saw my old golfing buddies standing in the corner telling lies like they have done every Sunday for many, many years.

I know, I know.  Telling lies in church.

But I believe that God grants dispensation to golfers and fishermen.  Dispensation is a catholic term for cutting you some slack, giving you a break.  It is most commonly used to give dispensation when St. Patrick’s Day falls on a Friday during Lent.  Catholics are not supposed to eat meat on Fridays in Lent, but dispensation allows you to have some corned beef and cabbage on St. Patrick’s Day when it falls on a Friday.

I think there is a soft spot in God’s heart for golfers and fishermen because these are people who will swing a stick for hours on end trying to find golf holes or fish they cannot see.  True believers if there ever were any.  So maybe God sees potential in these people.

The sermon was about having complete faith in things and living that way genuinely.  Not 85%, not 95%.  It has to be 100%.  It started out about how children can see through parents when they are not 100% committed, but it went to how we can see through ourselves too if we are not 100%.  If we are not the real McCoy.

Given the revelations the night before, this all made sense.  It’s all on Missy and me, but God will have our backs – if we give this 100%, if we don’t waver in our trust, confidence and commitment. If we are the real McCoy.

The expression “the Real McCoy” has a fascinating background. It relates to Elijah McCoy, an American-born African American who fled to Canada via the Underground Railroad prior to the Civil War.  He returned to the United States after the war. He was educated as an engineer and had invented many products that he had patented. One of his patented items was an oil-cup to catch oil that dripped from locomotives on American railroad lines.  His oil-cup was considered superior to other models and railroad engineers looking to avoid inferior copies would request it by name, inquiring if a locomotive was fitted with “the real McCoy” system.

So our marching orders were clear.  We needed to be the real McCoy. To have 100% trust and faith in what we were doing despite the recent bad news.  When things got tough, we needed to get tougher. We could not have slide-back days – at least not in our attitude and determination.

The thing I have learned about cancer is that the person with cancer will have slide-back days in their body.  It’s a nasty disease with a mind of its own.  Cancer simply defined is abnormal cell growth that accelerates and takes over things around it. Southerners know about kudzu, and cancer is like kudzu after a good rain.  Chemo is like Round-Up to kudzu, an equally nasty substance that destroys things. And the two do battle – which wears a body down.  If you think about the old cartoons, where there was good on one shoulder and evil on the other, each speaking into a person’s ear trying to persuade him or her, that is sort of like cancer and treatments of it.  Except the chemo is nearly as awful on the body as the cancer is.

Two weeks later, we went to Wilmington to spend a week at Missy’s mom’s house, go to the beach and get a break from all the chemo, doctors, house renovation and everything that we had been through since December. Missy was still struggling with eating and keeping weight on, and after chemo three weeks in a row, her body was fried.  She slept in the back of the car the whole way to Wilmington, and she could really do little more than sleep the entire week at her mom’s.  We had hoped for some time on the beach and chance to relax, and we never made it to the beach.  Joan, Missy’s mom, felt awful about this.  A week that was supposed to be fun and relaxing, was anything but.

The next week we finally got some good news. Chemo resumed and when the blood work came back, it showed that the tumor markers had dropped in half.  The next week they dropped again.  After terrible news, and then a terrible vacation – and being at a point where we were really struggling to be the real McCoy – the good news fueled our faith which was bending but not broken.  This, in turn, lead to Missy eating better, engaging more with people again and gaining strength in body, mind and confidence.

This pattern continued until last week.  If you have been reading this blog, you know Missy blacked out last Friday in the evening heat as we went out to watch the start of the “24 Hours of Booty” bicycle event to benefit programs to support people with cancer.  When we went to see the oncologist again yesterday, he was alarmed at what had happened last Friday, and while he and Missy and I believed the black out was from dehydration after the chemo last week, he ordered a brain MRI to make sure the cancer had not spread to Missy’s brain. He had recently seen where pancreatic cancer had spread to the brain in a couple of patients, and it was nagging him that this could be the same thing.

So … yesterday felt like a trip back to square one, only worse, again.  Really worse.  We were both terribly shaken by this unexpected turn because deep down we knew if it had spread to the brain, it was game over. I spent the night with Missy at her sister’s house and neither one of us slept well – nothing new for the last six months for both of us – but we reminded ourselves to stay strong in our faith in our doctor, our faith in each other, our faith in family and friends, and our faith in God.  We had to be the real McCoy last night and today.

I worked at home today because I did not want to be in the office when word came back on the MRI.  Good or bad.  I asked myself if this was a sign of losing faith in everything, but I realized that being scared and losing faith are two very different things. Especially with cancer. If you’re not scared, something is wrong with you. Being scared is actually a sign of faith because there is a place you are trying to get to and that path is just uncomfortable.

Late this morning, Missy and Beth came to our house after the MRI, and called up to me in the home office, and told me that the MRI came back clean. The cancer had not spread to the brain.  That it was dehydration.

Before Missy and Beth had gotten to the house, I had spent a little time this morning begging God again.  Please don’t take Missy from me.  There is so much more we need to do.  So much more to do with family, with friends and neighbors, and so much more we want to do for others.  This time he answered a little louder, a little more clearly. It’s all on you and Missy, but I will have your back … if you are the real McCoy.