How I met and dumped my kidney mass

Well, here we are. I’m trying really hard to make it all work.

Thank goodness for the kiddos and our gorgeous granddaughter! And we have TWO MORE grandbabies on the way! We are being watched by the most spectacular guardian angel ever!

Our family decided to turn a tragic loss into exactly what Darren would have wanted and we started a foundation in his name! First up, a golf outing we are preparing for! It’s gearing up to be a WILD success. We sold out team spaces in a matter of weeks and we are ready to make a ton of money for cancer care in West Michigan!

So how dare you rear your ugly head again cancer! After 18 glorious months of Opdivo doing it’s job like a BOSS, my June 24th CT scan showed 4 lesions on my liver. Talk about a deflated birthday balloon.

In my oncology office, we had talked about this new and amazing trial they were running. Immunotherapy was working so well, so I was not super interested in hearing about it, but it was admittedly nice to know it was something to consider should it be needed down the road. Well here we are, “down the road!” It was time to decide if we would go for the clinical trial.

A phase 3 trial to help find a tolerable and effective dose of a combination of two FDA approved drugs.
1. 20 Mg of Lenvima, a known to be pretty toxic drug.
2. 120 Mg of Belzutifan, a newer drug being closely looked at as being very promising with minimal side effects!

Vs.

Cabozantinib alone. The current “standard of care” after immunotherapy stops working. (they use the word “fails”. I don’t like that! Immunotherapy did NOT fail me. It was just time to make a change!)

I was randomized in to the trial meds! The Lenvima & Belzutifan combination. Everyone seemed excited, so let’s do this!

We will start in July. A brand new adventure! And I feel SO honored to be doing this trial.

I’m SO hungry to learn all I can about these drugs, how I can help my body adapt to the new meds, avoid side effects, keep my mental health on track and to be a shining example of what these drugs and a willing participant can accomplish!

Off we go!

Much Love,

Carie

What happens next changed the course of…..well…..everything.

Confession, this is not being written in real time. It took me a LONG time to find the courage to get this down in writing.

We spent mid-January settling in and getting used to Darren’s trach care. We finally celebrated Christmas, virtually that is. We opened our gifts from the kiddos on a zoom call and finally started to feel like we were on the right track. I had trach care DOWN and briefly thought “maybe respiratory care is my calling”. We had a major routine. Multiple trach cleanings a day, the suctioning, the meds, the feeding tube, keeping his sodium in check with V-8 and magnesium levels managed with crushed supplements. Managing pain was a careful dance of staggering meds so he was comfortable.

In the midst of all of this, Alex, our oldest found a house we fell in love with! I likely forgot to mention that we were living in an apartment in downtown Grand Rapids while Darren recovered. We were close to the hospital and it made sense for the time being. We closed on the house and very carefully got Darren and all of his equipment moved to our gorgeous now home, it had an inground pool! He was SO EXCITED about that pool! It was 1.22.21 when we moved in. 6 insanely short days later, Darren’s vitals were not exactly cooperating. We had an appointment on 1.28.22 for him to get his chemo, so we would figure it out there. Off to the oncology office.

They were concerned as well, but agreed to give him his Keytruda infusion. But immediately following the infusion they sent us to the ED. We knew what that meant. He was admitted.

The days that followed felt a bit like an episode of House. He was experiencing unexplained fevers and infection prevention became a big part of his care team. They wanted to know what he ate, where he lived as a child, does he garden, drink well water, have any exotic pets, you name it, they asked about it.

When I look back at this time, it seems so much worse than it did when I was living it. Doctors and nurses “hinted” that things were not going well. I did not see it. Under no circumstance would I except anything but my husband coming home with me to get ready for his next infusion. The life saving infusion. He was going to get better!

I was wrong. On Sunday, February 7, 2021, we lost the most incredible gift of a man. My life and love. The man who gave me a life I never thought I deserved, let alone could ever imagine having.

It was like being in a theater for the last 25 years and watching the GREATEST show I have ever seen. But instead of “happily ever after”, the theater just went dark. The show wasn’t over, how could it have gone dark?

We will all find out light again. It’s what he would have wanted!

Much Love,

Carie

I just could not have.

The roles were pretty fully reversed. While it’s likely I should have rested and taken it a bit slower to get to recovery after my lobectomy, things with my husband took a bit of a turn.

He was suddenly REALLY struggling to breath. I’m talking gasping and completely unable to sleep. I know it’s the last thing he wanted to do, but we jumped in the car and went to the emergency department. Covid restrictions made it so that I had to drop this powerhouse man off at the door and LEAVE HIM! You must be kidding me.

He was admitted and saw so many doctors. He was placed on a C-pap that helped so much! He would eventually be sent home with a c-pap and it did the trick……for the moment. But it was not long at all before we were back to the hospital. The c-pap just wasn’t doing what he needed. And he was needing the extra support WAY beyond bed time.

So there we were, back in the ED.

He was of course admitted. Darren grew so desperate for a clear airway that he inquired about getting a trach, and the doctors agreed that it would be a wise option. The doctor who would do the procedure commented about “keeping him comfortable for his remaining time”. What? We quickly explained to the doctor that we are not even CLOSE to giving up. Quite the opposite. Hi think he understands now.

When Darren was wheeled up from his procedure to have the trach placed he was WIDE AWAKE and everyone was all smiles, including Darren.

Me: “HI! How are you?”
Darren: BIG SMILE, pats chest, thumbs up! He mouthed “I can breath!”
Staff: “We have NEVER seen someone so elated to have a trach!”

That’s my guy! Always looking at the bright side!

So here we go. Trach care education, emergency training and my lobectomy recovery was FAST TRACKED! But it’s all good. I’d do anything for him!

Happy New Year!

Much Love,

Carie

Once again, I have waiting ENTIRELY too long to update. Things have been going well. We are coming up on a year on immunotherapy and we are moving in the right direction. With ONE LITTLE ANNOYING exception!

One of my lung nodules is not only growing, but pretty quickly. Dr. V. (my U of M consulting oncologist) gave us a few options, but if you know me, you know I am a “get it out!” kind of gal. Surgery is an option, so I’ll take that! So here we go. A lobectomy by the amazing Dr. Lam it is. A couple of nights in the hospital, followed by a few weeks of recovery.

My husband Darren is 4 months post treatment. We did get scary news. The treatment did not get rid of his cancer. It’s spread some which is obviously concerning. His oncologist is recommending a combination of 3 pretty nasty chemo’s. Lot’s of pre-meds to ward off side effects seem to help. Every once in awhile our infusions fall on the same date. The staff seem to think we are pretty cute tackling our infusions together. Our son Hayden has agreed to stay with dad while I go spend a few days laid up getting the lung surgery. I think he’s actually a little excited for the “guy time”. (both of them!) I don’t even want to know how many hours of soccer will be watched.

Surgery went off without a hitch, the nodule came back as confirmed RCC as suspected. It was removed with clear margins, so great news there!

It was SO GOOD to be home, see my sweet hubby and get to recovering.

Enjoy the holidays friends!

Much Love,

Carie

Wow! It’s been FAR too long since I have posted. No excuses, just life.

Shortly after the first of the year, we went on lock down with the rest of the world, and while you would think that would have given me SO MUCH more time to write, it simply did not.

My husband and I were very Blessed to have kept our jobs, I started marketing for an online active wear line for some extra cash, we got busy turning home space into home offices, we made the decision to look for a home closer to downtown Grand Rapids and work to find a way to keep this lakehouse (still looking!), we learned to find a “new normal” with regard to time spent with friends and family doing our best to social distance, and……we found out my husband has cancer.

Wait, what? Yup, you heard me right. In February, what started out as throat irritation that we thought was being exacerbated by being home more with our two cats, led to a visit to an allergist who promptly told us he has throat cancer. And in true warrior style, we set about our journey to get this man better!

April 2020 – diagnosis
May 2020 – surgery to remove most of the tumor and lymph nodes
June 2020 – game plan for 7 weeks of chemo (once a week) and radiation (Monday – Friday)
July 2020 – 3 weeks in and he’s an absolute champ!
August 2020 – He will wrap this up, beat the hell out of it and put it in the rearview mirror!

Yeah, you just really never know what life is going to throw your way! The way we see it, we have had two options throughout our health journey’s. 1. Give in to it. Lose our shit, sink down and let it all happen. Or 2. Stand up, pull out the big guns, and whoop the cancers ASS! It’s not easy, don’t get me wrong. But there was NEVER a choice here. Choosing 2 was the ONLY option!

Now let’s back up just a bit so I can catch you up on my side of things!

In January 2020, I learned that I had a small additional mass on the tail of the pancreas. You guessed it…… renal cell carcinoma. The good news? Everyone feels confident that this was there from the start of my diagnosis and was missed on CT. This little bugger was discovered by MRI. More good news? It meant the real fight starts! And even MORE GOOD NEWS? We learned recently that while mets to the pancreas with renal cell carcinoma are rare, they are for some reason, a really good indicator of a very slow growing cancer and a typically a long term good prognosis. An expert I see even mentioned the word “remission” being possible. (I rarely hear that!)

In February 2020 I began the “Ipi/Nivo” immunotherapy combo! Infusions of Opdivo and Yervoy every 3 weeks. Fortunately my side effects on this combo were minimal. Rash, a bit of fatigue, and a bit of joint pain. Following 4 rounds of this treatment, I was scanned in May 2020. “Mixed response”. Okay……. My team felt that the good amount of shrinking in some nodules was great news and that the very minimal growth is others was either pseudo-progression (swelling from the immunotherapy attacking) or stability given how minor the growth was. Deep breath…….. okay, some progress. And NO NEW spots, nodules or masses. You REALLY learn to take your wins and run with them!

So we moved forward with phase 2 of this regimen. In late May 2020, I began infusions of the higher dose of just the Opdivo, every 4 weeks. We elected to do scans after two rounds of this just to check things out. (my new specialist feels we may be doing just a bit too many scans, but we already had this one planned) So in July 2020 (just this past Friday) I received yet another CT. Chest, abdomen and pelvis.

Phone Rings:
Me: Hello!
Dr. A.J. : Hello Carie. How are you feeling?
Me: Great!
Dr. A.J. : Are you nervous? (something in my gut tells me that this question is a good thing)
Me: Yes, very.
Dr. A.J. : Well I am not surprised by how great you feel. I have very good news!
Me: {races from the bedroom to wave husband and daughter in} REALLY????
Dr. A.J. : Yes, you have no new spots at all. All lung nodules are stable or shrinking. And the best part, the mass on your pancreas has gone from 3.4cm to 2.6cm.

You can imagine the rest of the conversation. Lot’s of “are you sure?” and tears of joy. It’s working. We are heading in the right direction! There is hope. I may very well have a future to enjoy. I can breath.

So now what? Well, I continue on Opdivo infusions every 4 weeks. I will likely get scanned in about 3 months. I will continue to see my new RCC specialist. I will make plans. I will continue to write my cookbook. I will work on my other book. I will begin my work with kidneycancercure.org. (this venture will be such a Blessing to me and I hope so many others!) I will blog WAY more often. I will continue to eat a wholefood plant based (CHEGAN!) diet. I will mediate. I will do yoga. I will enjoy long walks. I will love and appreciate family and friends more than I ever imagined possible. I will change lives. I will help others. I will be the very best me I can possibly be. I will live.

I am strong.
We are strong.
I’ve got this.
We’ve got this.

And whatever you may be going through. You’ve totally got this too.

Much Love,
Carie
#shesachegan #cariecan

A couple of things to note:

1. I decided I should start to name my blog posts!
2. I fully intended to write this gratitude post in November.

That being said, I am so grateful (see what I did there??) that my job, family and life in general have kept me too busy to write. It’s funny though, I can actually FEEL it when I need to post. Like somehow my body says “ENOUGH! You need to let some stuff out!” So here goes:

You’ve heard the phrase “count your Blessings”? It sounds not only reasonable, but really really smart! Feeling low? “Count your Blessings!” Someone hurt your feelings? “Count your Blessings!” This practice has always been something I fully intended to do, but instead, often found that I focused on this during the holidays, but frankly, really took things for granted most of the other time. Now don’t get me wrong, I am SO VERY aware of how Blessed I am. 4 beautiful kids with 4 beautiful spouses/significant others AND 1 precious granddaughter. And that is just the beginning! Being Blessed was just the norm!

Now, I’ve had my share of rough stuff. Never knew my biological father, mom is an alcoholic, and to say things were “rough” growing up would be an understatement. Were it not for my grandparents, I am not quite sure what would have become of me. I had my first legitimate panic attack around 7 years of age, but can now recall feeling terrible anxiety much earlier than that.

But I met my husband, we raised the afore mentioned exquisite family, and those tough days were long behind me. And so began what felt a bit like a charmed life! All 4 kids have gone to college, and are happy, healthy, hard working, really incredible members of this world we live in! And they have all found love and know they are loved back, by us and many others!

Fast forward to this past summer. Suddenly diagnosed with cancer, gratitude becomes a real tough emotion to express. It’s like I was immediately FLUNG back to the days of cleaning up after my mom or being put in the tub with our dirty laundry, complete with laundry soap.  I wondered if somehow any or all of the bad things I may have said or done in my life had caused this! WHY ME has been a question I have asked more times than I can count.

But today, as I sit here typing this blog post, I am so absolutely certain that I did not cause this, I am a good person and I am so deeply and inexplicably grateful. For this life, my family, my friends, a beautiful home, a job I adore, my furbabies and grand-furbabies and yes, even this cancer. Sounds weird huh? But I firmly believe that it is going to make me better. A better person, mom, grandma and friend. A better everything. And I won’t just remind myself of how grateful I am for everything during the holidays, I now KNOW each and every day how grateful I am and why.

Each morning I wake up and before I begin my day, I say a prayer of thanks. Thanks for the day to be good, to do good and to help anyone who may need it.

I’ll beat this and be better for it! My story of survival will become a source of comfort and strength for others! And it is for this and so much more that I am so truly and completely grateful.

I am off to go do some laundry! Yup, I am even grateful for that! So for now, I will leave you with this quote:

“Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow!”
– Melody Beattie

Well it’s been awhile since I have updated you all!

In truth, I didn’t think I had much to tell, but I suppose I do have a few things to share:

As you know, upon my diagnosis in August of this year, I eliminated refined sugar from my diet. From there, I decided to take it a step further and slowly eliminated meat from my diet. I started to feel better physically and feeling like I was able to control what I could gave me the emotional boost I needed as well! I was starting my day off with celery juice and a protein shake and going without sugar and meat felt amazing!

I had a CT scan done on November 7th and the results were completely stable! This meant no need for treatment yet. Stable has become one of my favorite words. The moment I heard this news, I thought, I can take this nutrition thing next level!

Next to go? Cheese and eggs and anything containing cheese and eggs. This step was a little tougher and I have to confess I have not been perfect. The ultimate goal is to go strictly WFPB. (Whole Foods Plant Based). This means in addition to the above, I also eliminate oil of all kinds! It’s not what I am used to, but I was excited to learn that a good WFPB plan can include fish an occasion! PHEW! In truth, this lifestyle change has been pretty amazing! I feel better than I have in decades and I have been THRILLED to learn that food has really incredible, intense and wonderful flavor! Here I thought the only things my meals should taste like were sugar, cheese and ranch dressing. Finding the true joy in the delicious flavors in fresh fruits, veggies, nuts, seeds and beans has been overwhelming! Knowing that I am going in to whatever comes next as healthy as I possibly can, is beyond!

My next CT is sometime at the end of January. The goal? Keep scanxiety at bay for as long as possible. Letting fear rob me of the beauty in each new day is simply not an option for me!

So today, I am grateful. With Thanksgiving nearing, I am hyper aware of all I am thankful for.

• My amazing and supportive family and friends.
• A job I enjoy working for a healthcare organization I am proud to be a part of.
• Doctors, nurses and other medical staff who have become part of my tribe in a big way!
• Access to fresh fruits and vegetables and other amazing foods!
• Understanding ways I can reduce/eliminate my exposure to every day chemicals and toxins. (read labels, it will BLOW your mind!)

My perspective has changed so much. I appreciate things so much more than I did. I joked that I was growing tired of people saying “well ya look great!”. What I heard was “ya look great for someone with cancer!” Today I ran in to two doctors I had not seen in several weeks. I ran in to them separately. Both stopped to chat a moment, asked how I was doing and wrapped up emphatically stating “well ya look amazing!” Today what I heard was the kind compliment. Not “you look great for someone who shouldn’t look so great”. I heard the positive statement they made. I heard “hey, you’ve been working hard, eating right and increasing your activity and it shows!” I appreciated it so much!

I have been plans you guys! Today is just the beginning.

I’ve got this!!

I can!

Carie Can!!

Buckle up ya’ll! We are going on an adventure!

WOW! It’s been 3 weeks since I have posted anything. Once could say that’s a good thing? No news is good news? Yeah, that is not really the case with cancer. No news is just….well…..no news. It’s just waiting, anxiety, scanxiety, worry, hope. Yes, hope, the most important part!

Work is good! I have been in my new role for about 4 weeks and feel like I am really getting the hang of things. It’s a really nice group of people that I work with. Some I have felt close enough to share my diagnosis with. Some not, but I suspect/assume they know as others must talk? I am actually good with it. The less it feels taboo, or like a “big” deal the better.

I feel amazing! It’s almost strange at times to be brought back to reality. But what is the reality? I continue to feel GREAT doing my regimen.

• Celery Juice first
• Cinnamon/turmeric green tea next
• Protein shake on the way to work
• No sugar
• No meat (just fish a few times a month)
• Meditating
• 10,000 + steps per day
• Prayer each morning (out loud!)
• D-Monnase & Vitamin C
• Support

It’s all still so scary. Maybe even scarier than when I first found out. It’s all more real now. But I continue to research, reach out, share my journey, bring comfort to anyone I can, make some good from this craziness.

I am now more certain than I ever have been that I was put on this earth to help others. Some with cancer, some with other trials they are dealing with. I have learned that while I don’t subscribe to the notion that “everything happens for a reason” I do wholeheartedly believe that we can and SHOULD do everything we can to share what we know, and can use to make others feel better, do better, be better.

If I could, I would go back and do whatever was necessary to avoid getting cancer. My perspective has changed SO much! Giving up sugar became really easy, I’m overjoyed when I maintain my weight or even gain a pound or two, traffic doesn’t bother me anymore, not much scares me, getting older isn’t upsetting, it’s a gift. It’s all a wonderful gift.

So get on out there! Enjoy the crisp fall air, the smell of leaves burning, good friends, laughter, the opportunity to put in a good days work, your favorite TV show, a good meal, all of it! Enjoy and be grateful for all of it!

It’s been a rough couple of days over here.

I could have NEVER, EVER imagined what this would feel like. The contrast between how awesome I feel physically post surgery and how I feel emotionally is downright startling at times!

I drink celery juice every morning to keep my digestive system on track, I drink a vegan protein shake on my way in to work and eat vegetarian meals and snacks. I stopped eating pretty much ALL sugar except the few grams found in my peanut butter or the occasional pasta sauce. I strive to get as close to 10,000 steps a day as possible. I am at a weight I would LOVE to maintain permanently. I don’t smoke and I drink in moderation. (perhaps even a bit less than “moderation”.) I don’t sleep great, but much better than before surgery. I am physically in the BEST shape ever! With the exception of that pesky kidney cancer.

My emotional state however is something resembling a cross between the Corkscrew at Michigan’s Adventure, and Cedar Points Raptor! Up, down and all around. The statistics get to me. I question every word out of the doctors mouths and wonder if they say positive things just to make me feel better and worry less. I panic thinking I’ll be in the percentage of patients with this who don’t do well and need to start remembering that I have EVERY reason to believe I will be in the percentage of those who do well. (see above list of amazing things I am doing for my body!)

So it’s been a couple of rough days. Keep up the prayers and positive thoughts, cheerleading etc….. team! It means the world to me and helps so much on the crappy days!

P.S. Courtney and I have named the lung nodules now. You recall that the kidney mass was named Felicia (#byefelicia!) The nodules are named after the acronym GTFO (think about it and my apologies for the implied bad language! LOL! Extra points if you figure it out!)
The four nodules shall be named:
Gertrude
Thelma
Frangelica
Olive

And the do need to G.T.F.O.

Here’s to bringing back my positive attitude! (Besides, a wise man told me I should allow myself to just feel not so great sometimes! As long as it’s not ALL of the time)

#ivegotthis!

The more things change……..

Scanxiety, it’s a total thing! Waiting for my post-op scan was a complete emotional roller coaster. One minute I convinced myself it would be bad, the next I was certain the lifestyle changes I have made so far would bring about an excellent result! The unknown is such a difficult thing. But we finally found ourselves in the office of my surgeon, talking about how I was feeling and how I probably went from couch potato recovering to back to work and striving for 10,000 steps a day too quickly. I was taken off of all restrictions so lifting my sweet granddaughter is a-ok now! I was also given the ok to run. Now I know what you are thinking…… “I didn’t know you were a runner!” Well, I am not. However, as part of the lifestyle changes that have included celery juice in the morning followed by turmeric tea and a protein shake for breakfast and a plan to shift to a vegetarian/vegan/chegan nutrition plan, I plan to run. Walking has brought me so much comfort and Courtney and I have aspirations of running some 5k races and even starting our own kidney cancer awareness walk! I feel stronger and healthier each day and have no intention of going back to my high sugar, high protein, high fat, pretty much high everything but fruits and veggies diet.

Back to my appointment. It was going well! Incision is good, restrictions are done…….let’s look at that follow up CT. This was when things took a turn. The nodules on my lungs, well, at least 3 of the 4 nodules have grown by 15-20%. Not what we had hoped to hear. I did later learn that this is considered a “stable result”. Really?? Apparently less than 50% growth is stable. We learned all of this on Friday, so we’ve had the weekend to ponder all of this. Lots of speculation has occurred. But the strangest thing happened. I enjoyed myself. I know that should not seem that odd. But “joy” is not the word I would use to describe the last 7 weeks. But we were invited to a neighborhood get together at our local Eagles Club on Saturday. We went, and even though they all know what is going on, they all chose to just let me be……let me be normal…..let me be just a regular guest at this gathering. No one said “wow, you look so good” which I take as, “you don’t look sick”. No one asked about how things were going. It was WONDERFUL! Again, I am grateful in ways I will never be able to express for the love, kindness and concern I have been given and I pray that my beautiful friends don’t stop reaching out. I am so truly Blessed and I know it! But for the first time in awhile, I felt normal. I had…….dare I say it…….fun!

Sunday felt pretty great too! My morning started with a wonderful message from a man I have admired since I have known him. He’s currently on his own cancer journey and took the time to reach out, offer some kind and comforting words along with some much needed advice. It made my day more than he could know. It was just what I needed to hear and I find myself in awe that he would take the time to bring some comfort to me. I went on a total of 4 walks, 3 to the end of our road (about a 1/2 mile round trip) and one where I continued on around the lake. (that one was probably a full mile round trip!) I made dinner and Courtney and Fred came over. We watched the Lions almost win and just had a nice time together!

Who knows what Monday will bring. More change? Good change? (it is my first day at my new job in the Foundation Office!) A plan? Do we wait? Continue to watch things? An idea of what will be next? Which treatment? More of the roller coaster ride? I’m ready.

I’ve got this! We’ve got this!