Tag Archives: ipilimumab

“How are you?”

“Hey! How are you?”

Do they just mean in general or, like, cancer-wise? How deep are they looking to go? How long has it been since I’ve seen or talked to this person? Have they heard the latest update that I’m fine? Am I fine? I think I’m fine…

“Fine! How are you?”

This often leaves someone looking a little bewildered that I hadn’t answered them fully.

Crap. They wanted to know more…ok where are we at here….

“Yup, scans have been good so I can’t complain!”

“But how are you feeling?”

Now this is the question that really gets me. How am I feeling? I realize people ask because they care just like that’s why I ask them the same question. I just quite never know how deep to go.

Technically, I’m ok! I’m still here and comparatively, way better than I was a few years ago. But I’ve got some issues.

I get asked about the things that still affect me pretty often so I’ll try to give a full answer here. It’s not complaining or trying to garner sympathy, I think it’s just interesting to see where cancer is still affecting day to day life. These are all things I can adjust to, it’s just that this is life now.

Although cancer is not an immediate looming threat on my life at this moment, that’s not to say I can really ever get away from it. All throughout the day every single day I’m reminded, one way or another, that my life and my body are just different than they were 5 years ago.

So here’s the breakdown:

Brain. My brain just does not work the way it used to. Surely part of it is aging and part of it is having kids (….because they age you…), but most of it is due to my brain tumor, the radiation I had to my tumor, the radiation I had on the right side of my head that hit the lower side of my brain, and part of it is residual effects of oxygen loss during grand mal seizures. These side effects are mostly memory loss, difficulty thinking of the right words for things (very common things, like “cup”), and in general a slower processing time.

Sinuses. I never had sinus issues before all of this, but my oncologist seems to think my chemo amped up my immune system in my sinuses so that any bug I get ends up turning into a sinus infection. I don’t quite understand how that all works but I’ll believe him because I’ve seen the PET scans that always always show my sinuses lit up like a Christmas tree but it’s not cancer. Strange things are afoot…

Hearing. Radiation is not over once it’s over. It continues to degrade the area that was radiated more and more over time. Since I had radiation on the right side of my face and neck, this has affected my hearing on the right side to the point where I have lost probably 80% of the hearing on that side so far (the expectation is complete loss on that side eventually).

Hearing loss has actually affected me way more than I thought it would. It’s extremely disorienting and I cannot make out where sounds are coming from. If I’m in a crowded area, I cannot hold a conversation because I can’t make anything out. It just sounds like a swarm of bees or something. Beyond the hearing, my right ear is always uncomfortable and feels “full”. All the time. I can’t get water in it or I’ll get an ear infection and those aren’t all that fun.

My face. Ohhhh, my face. I know it’s a vast improvement from where it was, but it’s still hard for me to look in the mirror for any longer than absolutely necessary. I despise doing my hair or makeup because I have to look at myself for longer and the huge scar and transplant site in my face are just not what I want to see. So I usually just don’t. I may give off a “low maintenance” vibe, and that’s not completely inaccurate, but it’s really just because I can’t stand to look at myself. It is what it is.

Thyroid. Since radiation went down into my neck, I’ve began to lose thyroid function. This comes with a whole list of not awesome side effects. Weight gain and fatigue mostly. Fuunnnn….

Voice. I love singing, I always have. I used to be able to rock a Mariah song but because of, you guessed it, radiation, I’ve lost my high range.

Port. I still have my port in my chest and as I’ve tried in recent months to get back into great shape, this thing is a pain in the butt. It doesn’t hurt it just is sorta weird feeling and can be uncomfortable especially during physical exercise.

Thigh. In case you didn’t know, I had a large transplant of muscle placed into my face and neck and that muscle came from my left thigh. I have a huge scar down the front of it and it has a huge indent down the middle from where the muscle was taken. This has become really uncomfortable since I’ve started running again and trying to get stronger physically. It really aches as I’m building muscle there and the muscles are trying to figure out how to work properly. There are still some leg exercises that my leg just won’t do.

Emotional. This one is definitely the most sneaky but the hardest to deal with. I struggle now with anxiety which I never had before. It’s unmedicated and undiagnosed but ohhh, it’s there. It’s mostly separation anxiety with the kids and it’s a real struggle most days.

I don’t like to give off the impression that life is back to complete normal after cancer. I can’t imagine that to be true for anyone who has had to deal with it. We just have a new normal and we adjust the sails and move forward regardless.

So, seriously, I’m fine! 🤗

Greta’s Story

It’s an honor on this “Melanoma Monday” to kick off some personal accounts of melanoma with a close friend of mine’s story.  Greta is an amazing friend, wife, mother, and girl after God’s heart.  It’s a priviledge for me to share her story of her husband, Shane’s, battle here on the blog.  I love you girl, keep up the great work raising awareness and doing the “dirty work” of endless research for people like myself and Shane and undoubtedly many others who your story has touched and will continue to touch.

October 2011 our lives changed forever. My husband Shane was diagnosed with Stage 3C melanoma. I remember leaving the doctor’s office and googling Stage 3 melanoma. I couldn’t breathe when I saw the prognosis. All I remember is thinking, my husband is so young and he is going to die, leaving our 2 young children without a father and me without my husband, the love of my life since I was 16 years old. I remember tossing and turning, crying my eyes out all night begging God to please let him live.
A few days later Shane had major surgery that involved removing 19 lymph nodes from his right arm. He then underwent high dose radiation and months of physical therapy. He will never have full use of his right arm and has no feeling under his arm and down his right side. After all of this Shane took part ina clinical trial, hoping and praying that he would get the drug ipilimumab (Yervoy). I’ll never forget the day we got the call that he was randomized to get the ipilimumab. Tears of joy when we hung up the phone, God definitely answered our many prayers.

He was scheduled to get 4 doses of the ipilimumab every 3 weeks and then go on a maintenance dose. After the 4th dose Shane experienced a life threatening lung reaction. The drug began attacking his lungs and he almost died. After another surgery to confirm it was not melanoma metastasis Shane had to take high dose steroids for months. Thankfully the steroids worked and the situation resolved. Long lasting effects of the drug are still unknown but we truly believe ipilimumab and faithful prayers saved his life.

Shane still has to go for PET scans, CT scans and brain MRI’s every few months. We always get nervous around scan time. Melanoma isn’t curable once it reaches a later stage (stage 3 and 4) but thankfully Shane has remained NED.
Some common misconceptions regarding melanoma that drive me crazy:
It’s “just skin cancer”! No, actually it’s not! It one of the deadliest cancers there is and up until the last few years there weren’t many successful treatment options available. If you need more info. “Google” stage 3 and 4 melanoma.
Unlike other cancers you are never really in remission, melanoma can come back at any time.

Melanoma doesn’t discriminate and it isn’t always from the sun.

Life will never be the same but in some ways it is better. Our relationship with God was strengthened, you have no other choice but to give it all to God when facing a situation like this. Before all of this Shane worked 6-7 days a week for 13 years. When something like this happens you quickly realize that time is precious and you can never get that time back.

God placed amazing people in our life during this journey. The doctors at Fox Chase CC have been absolutely wonderful, treating us like family. We are so thankful for family that has been wonderful taking care of our children whenever we needed to go to Fox Chase or the times Shane was in the hospital. We are so thankful for all of our friends and the Andrew family. We are blessed! My husband is a walking miracle. I struggle with anxiety regarding all of this but I try not to let fear take over. Life is short, go on vacation, stop to smell the roses and enjoy the view.

And most of all, “Trust in the Lord with all your heart.” Please keep our family in your prayers as well as all the other cancer warriors. Thank you to everyone that has prayed for us and walked along side of us during this difficult journey.
Shane you are amazing (toughest guy we know) and you are our rock! We love you.
❤️ Greta

Any Takers??

Alright, listen up my melahomies (fellow melanoma peeps) and the people who love them!  Next month is our “time to shine”, so to speak, as May is melanoma’s awareness month.  I’m thinking of trying something (depending on your interest in participating).  We know about our cancer, we have seen and felt the heartache associated with it, and we understand on all too deep a level that awareness for a cancer like ours can truly mean the difference between life and death for someone else.

So here’s what I’m proposing: share your story, or some small part of it.  With me.  With us.  I’d love to share some stories on my blog during the month of May about how melanoma has affected you or a loved one.  You probably know that I’m an outspoken Christian, but I am looking for all perspectives, not just those that mirror my own.

Whether you’re a patient, a caregiver, newly diagnosed, a 10 year survivor, a doctor, or wanting to honor a loved one you’ve lost to this horrible disease I’d love to hear your story.  Your story can be nicely wrapped up or still in the messy stage, stage 4 or in situ.  You don’t have to share any personal information, in fact it can be completely anonymous if you would like.

Melanoma can, in some instances, be avoided and we know early detection is crucial, so awareness is our duty once we, or a loved one, are diagnosed.  I want to either help people get diagnosed early or keep them from this struggle altogether.

So here’s what I need:  I’m looking for whole stories OR short anecdotes, little lessons learned, quotes, pics, things doctors have told you or warned you against, life changes made, words of advice, whatever!  I’ll figure out how to format it all in the weeks to come, obviously if 100 people reply, I may not get everyone’s whole story in.  But I can certainly try to put something together that puts awareness at the forefront.  Just comment on here if you’re interested or shoot me an email at morelikecantcer@gmail.com (if you send an email, or plan on sending one, and don’t mind, please leave a comment here with a heads up so I know to check my email.  If you just want to send an email with no comment here, that’s cool too, but don’t expect a prompt response lol).

Also, if you know of someone who may want to share their experience, please share this with them so they can get in contact with me.  I’m excited about the possibility in this and ready to get started!  I can’t wait to hear from you!  And if no one responds, I apologize.  My blog for the month of May will just be my usual ramblings 😉

(There’s no guarantee that I can use every story, but I will try.  I don’t expect people to share my same values and beliefs, but will censor profanity as a courtesy to the readers.)

Why do bad things happen to good people?

Wow do I ever wish I had an answer for this! I think a lot of us have thought this, probably multiple times. Another thought that I see tumbling around quite often is, “How could God do this?” or the way harder to confront “How could God allow this?” These are valid questions with no concrete answers, unfortunately. At least not that I know of! But one thing is for certain, we all have issues and we all have to find a way to deal with them. I guess that’s kinda life in a nutshell, isn’t it? Where we turn in hard times is huge because that will determine just how it will play out for us. Simply put, I believe if we choose to look down, that’s where we will be. Down. Depressed. Hopeless. Not that we don’t all have those feelings occasionally, because we do. But we need to keep our focus in check. I believe that only God is strong enough to shoulder all of our “issues”, and some of you are carrying some pretty weighty stuff. For real. We have friends who just got some really heavy news about a loved one. My heart just breaks for them. And it just leads us back to this question of “Why??”.

I don’t have an answer, but allow me to ramble on just in case I stumble upon something that might help you! Haha but in all seriousness, I just know what worked for me to help me when I felt like this ‘why’ issue was getting the best of me.
1. Why me? Why not me? There had to be a level of acceptance for the fact that there may not be a “reason” for it. I don’t believe God gives people cancer, I know He can use any situation for His glory, but I don’t think He causes it. So where does that leave us? It leaves us in the perfect position to reevaluate and get it right.
2. Let someone else’s struggles put things into proper perspective. Don’t wait until you hear “the news” Or are faced with a seemingly insurmountable circumstance, learn from other people and start building your faith while things are going well. Then when the bottom drops out (because it will at some point), you’re holding onto something solid and tangible. I feel like practicing my faith before my diagnosis was just that, practice. That doesn’t mean it wasn’t real or genuine, it just meant it hadn’t been tested yet. So that when the real trial came, although there were moments of instability and wavering, for the most part I had a firm grasp on truth and a healthy perspective on life -and death! So learn from me! Don’t wait until it’s you sitting there waiting to see an oncologist or waiting for a radiation treatment, get it together now.
3. Wrestle with God! Ask him the tough questions! Don’t give up until you get the answers or the peace or perspective that you want!! Trust me, God can handle our doubt and our misguided anger at Him. Be relentless in your pursuit of answers from Him. There’s a reason Christ is called the “solid rock”. He is not going anywhere and He won’t let you fall. He is truth and therefore I’m convinced the more we seek Him, the more we find Him. (Hmm, where have I read that before? Oh yeah, JESUS HIMSELF said it in Matthew 7:7!)
4. God will be just as involved in it as you allow Him to be. There’s a choice, are we gonna be mad at God? Or are we going to allow Him to work in it? He will give you comfort and peace beyond all understanding. He will give you rest. He will give you a proper and healthy perspective on it all, but hey, you gotta ask!
5.We will all have troubles in this life, that is a Biblical truth. So what are you going to do with that info? Resenting and blaming God only hurts you. Once we realize that we were never ever ever ever promised health or problem-free living, you can begin to see how God is able to work powerfully in a seemingly hopeless situation. I have never felt more joy or more at peace with my life or my circumstances than right now. Remember, joy is very very different from happiness. Happiness is a fleeting feeling that lasts moments, joy is a constant presence of God and a peace. Trust me, if God wasn’t real, I’d be a basket case of worry and anxiety right now. I still worry, I still get anxious sometimes, but it’s not the prevailing state for me.
5. Who are these “bad people” that bad things should be happening to, anyway? Besides like Hitler and Stalin and a handful of other people, I doubt there are many truly bad people. So then that leaves the rest of us for all this bad stuff to happen to. Is it fair? Nope. But life isn’t fair, is it?
6. “God won’t give you more than you can handle.” BALONEY!!! That phrase drives me nuts. Seriously. That is not Biblical in the least. We are told that God won’t tempt us beyond what we can handle without providing a way out for us. Totally different than facing cancer. God gives me more than I can handle, like, all the time! The point is, it’s more than I can handle on my own. You see where I’m going with that? I can do it with Him, He provides a way provides comfort, provides in every way imaginable. But He hasn’t taken this situation away, so there must be something to be learned here.

Looking over this list, it’s pretty random. I guess it’s just more of a compilation of things I’ve been thinking about recently. Hopefully you all can make some sense out of it. I’ll be speaking at my church on “Can there be joy in cancer?” For both services on Sunday, May 4th and I just ask that you pray for me and pray that God will continue to prepare my heart for this and give me the words. If you are local, and you or someone you love is struggling with a tough diagnosis, come on out to New Holland Nazarene at 9 or 10:45am, I’d love to meet you and hear your story! Cancer has shown me that it is a great equalizer. I have met people of all ages, races, and socio-economic standing who are in the same boat I am and it’s my goal now to shed some light into this dark situation and to let people know that this isn’t the end, it’s the beginning of a new chapter and that life can still be rich and fulfilling and amazing even through all this.

I can do this!!

….Maybe. Actually, I’m pretty much convinced that I can’t, but what the hay, let’s give it a go. Did you ever know something was really bad for you, but kept doing it anyway? I think we all have, and I am sooo guilty right now. The truth is, I just can’t seem to get my eating on track. I truly believe that if I could eat mostly raw fruits and vegetables, meat of known origin, limited dairy (but full-fat, low fat cheese is just wrong!), and not so much processed and sugary junk, I would be much better off in the way of my health. This is something I’ve been thinking about for a while now but just haven’t had the courage to accept. Sometimes, God speaks to me through gentle reminders, over and over and over. Trust me, I am an expert a forgetting things, so when things keep popping in my head seemingly randomly (this one’s been for months) usually when I explore it further I find that God was behind it. So, that’s why I’m finally able to put my eating under the spotlight and try to make some better changes.

My breaking point came last night as I was about to scoop myself a bowl of this ridiculousness:


And then I checked out the ingredients:


Yup. Pretty sure this is why I have cancer. And I’m not being stupid either. (But of course I went ahead and ate a bowl anyway…ok, two bowls! Ugh) My “diet” is chock full of things that God had no hand in creating and I believe it’s killing me. So today, I am going on record to say that I will begin making small changes that will hopefully by the end leave me with a diet full of organic fruits and veggies and with none (or only very small amounts) of these types of things. I know for a fact that cancer cells uptake sugar quickly and that sugar makes it metastasize faster. In my shoes, don’t you think that would be enough to leave it all behind? Well, sure, that all sounds fine and dandy til my husband comes home from Sharp Shopper with a family-sized box of Oreos.

Of all the fruits of the spirit, self control is by far the lowest on the scale for me. Well, maybe not the lowest, but it’s waaay down there with patience. But just like “real” fruit, you gotta nurture it and allow it to grow before there can be enough to harvest. Or something. I don’t know if that makes sense, but you probably get where I’m going with that. Some friends of ours gave us this book a few months ago to read:


And I purposely haven’t read it yet because I didn’t want to change the way I eat. But not today. Today I’m confronting how I eat head on and I’m gonna make some changes! We’ve already made some good changes, like buying local meat with no steroids or hormones in it and pasture fed and all that good stuff. I try to get the healthier eggs (cage free, good diet and all that), I’m trying not to make veggies and stuff in the bag in the microwave, and I’m trying to buy organic wherever possible. Its expensive to eat like this though! So we are going to get into gardening this year and try to grow some stuff and save some money in that way.

I would LOVE any help or pointers you may have in switching to a healthier lifestyle (and bringing my family reluctantly with me). If you know of any books or blogs that would be helpful, I’d love to hear about them! We are going to try to get to a place where we are eating mostly unprocessed foods with minimal sugar and food coloring and things like that. I’d like to not eat genetically modified food and want to up the organics if I can. So I’m willing to learn! It just seems odd that our diet as a nation keeps straying further and further from anything that looks in any part natural and where the list of ingredients is like 50+ things! No wonder we suffer from obesity and that cancer rates keep rising. So we are gonna (try to) do it! Haha but just because I know I shouldn’t do something doesn’t always keep me from it. But here goes nothin! (For the sake of transparency, I’ll confess that I put brown sugar in my coffee already today. Sigh)

So that’s kind of more on the mental side of my journey right now, physically I’m feeling decent. My brain is a foggy mess, I feel tired all the time, when I wake up I’m sore all over for a few hours (feels like when I had Lyme disease and all my joints hurt really bad), my right ear has insane pressure in it all the time, and I have a rash on my face:


My face is also getting swollen again due to something called lymphedema. Lymph fluid has protein in it so it’s actually hard to the touch and since I have no lymph nodes or pathways on the right side of my face an neck, the fluid is building up and my neck is very hard and difficult to move. I actually am going for my first therapy for this today! I look forward to some relief in that sense. I’m also hoping it’s the buildup of this fluid that is affecting my ear and my hearing and that that can be resolved soon, too. And tomorrow I get my third infusion! It’s probably weird to be excited for it, but I am. At the risk of sounding like a junkie, I want this drug and I want as much of it as I can get!

Looks like spring is coming soon! (:

“Have you told your kids?”

It’s coming. And I fear it’s going to be soon, the time when we have to “tell” our three year old. Of course, he has no idea what cancer is, and shouldn’t at his age. But his questions just keep coming and I’m getting worse and worse at dodging them. But in my defense, he is getting better at cornering me. Take, for example, our lunchtime convo today:
Evan: Mommy, I need to go to the doctor
Me: Why, are you sick?
Evan: You go to the doctor a lot. Are you still sick?
Me: I feel fine, honey
Evan: But you go to the doctor. Are you sick?
Me: I guess technically, but I feel fine, don’t worry honey
Evan: Are you going to be sick forever?
(Here is where I feel like I got punched in the gut and start to tear up)
Me: Wanna watch a Paw Patrol??
Evan: Yeah!!

Ok, so admittedly not my finest parenting moment. But how do you explain something like this to a three year old? He knows something’s up, so I don’t want to lie to him, but I also know how kids internalize things and worry, which he doesn’t need. You may be asking yourself why I ever even told him I was going to the doctor in the first place, and that’s fair, but I tried all other kinds of fibs and it just didn’t work any other way but to tell him the truth in that respect. Any other place I said I was going, he would ask to come along and then I would have to lie even more about why he couldn’t come. I know lying is a sin, but does a child really need to know the details?

I feel like a part of my job is to protect my children from this. I want them to be carefree; I want them to be kids. But I know the other side of the coin is that kids tend, naturally, to be selfish. I want to raise compassionate children that understand that it’s their job as followers of Christ to help hurting people. I just don’t know that mommy needs to be one of those hurting people, ya know what I mean? Our daughter is only 17 months, so I like to believe she’s pretty oblivious to it all, but she is very, very clingy to me, so who knows? Maybe she senses something.

So how do you tell kids? How do I tell them that melanoma is a progressive cancer in most people? How do I explain all the doctor’s visits? How do I prep them for if there comes a time when I’m not able to take care of them? How do you explain that they may not be able to do a sport or activity because we have to pay Mommy’s medical bills? And the thing I dread most, how do I explain to them that they are at a higher risk of it happening to them, too?

I tell ya, every time Evan starts talking about when he goes to school or when he starts driving, I immediately get choked up, just wondering if I’m going to be able to be there to see it. I want to protect my kids from every kind of hurt, and that involves all the awful things that would go along with growing up without a mom. I know it probably sounds like I’m getting ahead of myself, but as a parent, you feel like it’s your job to plan ahead for your kids and when you have cancer, it’s hard not to think about all the possibilities that that entails. To the point where I sometimes (only half jokingly) tell my husband if I think a certain girl would or wouldn’t be a suitable second wife. He just laughs and rolls his eyes. We love each other like that. Maybe that sounds weird or morbid, but it calms me down a little to know that my husband would only marry someone who would be a excellent mother figure and strong Christian example to the kids. I mean, he obviously has fantastic taste in women, amiright?? 😉 I try not to let myself go there, but I promise you this, every time I do, God calms my spirit, often without me even asking Him to. He has taken care of us in every step of this so far, so I would be a real fool to stop trusting Him at this point.

I have no answers, unfortunately. This is just something that comes with the territory I suppose, but I do wish I could come up with something that would help our son feel like he has answers to his questions, but is also truthful. Without scaring him! Haha I guess I’ll just keep praying for answers and that the right words will come as the questions flow. This part is really hard though and I really don’t like it!

Faith in humanity restored

I’m not gonna lie, “faith in humanity restored” is probably my least favorite catch phrase of the moment. I like it even less than “epic fail” or “nom” or using “literally” in a way that is, quite literally, its opposite. This phrase seems to be used when there’s a story of heroics and great sacrifice, and I like those stories for sure, but the truth is, they do not restore my faith in humanity. Because I never lost it. I have seen people accomplish great things, perform heroic acts, and overcome major obstacles. This is definitely a reason to celebrate! But more so than anything, it’s the little kind things that people do for each other every day that blows my mind and helps me see, every single day, that people are good. We want to see each other succeed. We want to build each other up. We want to help, love, and support each other. It’s a beautiful thing!

Some of you may know that tonight our friends had set up a fundraiser at a local restaurant to help us out with our medical bills. And wow were we blown away by the response! I don’t think I’ve ever felt so moved by the kindness and love and selflessness of others. We saw so many friends and family there and some people were there that we only had the pleasure of meeting tonight. And yet there they were, supporting these strangers (us) and helping us through this tough time. There is so much good in people. Sometimes I feel a little sad when I see someone post something on Facebook with the catchphrase “Faith in humanity restored”. I just don’t get it. I have seen everyday of my life the selfless and amazing acts of others. And Jesus tells us to do our good deeds in secret (basically don’t brag, or you’re already getting your reward in the acclaim of other men. We want the act to be seen by God and rewarded in Heaven) So just imagine all the great things that go unseen! It makes my heart literally swell. No, sorry, figuratively swell. Every day is filled to the brim with little chances. Chances to brighten someone’s day. Chances to listen to someone who feels ignored or unloved. Chances to make something mundane into something meaningful. If we would look at our day to day lived in this way, I’m confident that no one’s faith in humanity would ever even be shaken. We all have the potential to make other people’s lives better, even if it’s only a little. But sometimes the ripple of something that seems little to us (a meal out for a good cause?) can be life-changing for someone else. So we want to say THANK YOU! Thank you to everyone who came out to support us tonight and thank you to those that support us in little and big ways every single day.

So don’t get down on people! Ok, so admittedly the news is filled with murder and people doing horrible things to each other, but that can’t be our focus. Just remember that YOU are capable of doing amazing things for people. The people who accomplish great, even seemingly impossible, tasks are no different than you or me. Even something as simple as going out to eat on a fundraiser night can help someone more than you’ll ever know. So take care of each other. Love each other. Build each other up. And please, stop saying “faith in humanity restored”. Besides, everyone knows the best phrase in meme-ville is “if it fits I sits”


Haha, right??


But for real 🙂