In Plain English, Please...

Hi to anyone reading is a little bit of a peek into the journey...

Before and after our son’s diagnosis and surgery we have all had a lot of people ask exactly what was going to happen, or what did happen.  It is so hard to explain it in a way that doesn’t scare people or have them thinking it is far worse (don’t get me wrong, it is bad – just not like what you can allow your head to imagine – believe me, I know because we did let our heads wander – and we never told any of the others!). After a while our family becomes exhausted trying to not only explain, but then to keep our minds focused on not breaking down each time.

All of that to say, I thought I would try to put it all in one post in semi-layman’s terms. I will put the medical jargon in as well if you want to Google it for more information.

When they started the surgery they did a full endoscopy (camera all the way down the throat and esophagus) to make certain there was no anomalies or tumors down there. Once the endoscopy was completed they started on the tumor in his tongue. This is called a partial glossectomy. The photo below is my fantastic rendering of a human tongue! When Dr. Hu (I was so tempted to ask where the Tardis was!?) got in there the tumor was bigger than he thought it was going to be. So, In order to get clean margins he used a CO2 Laser to remove a 4cm by 5cm piece – this removed the tumor and allows for a 1cm margin around. They did not have to cut into the root of the tongue which is a HUGE praise as that is the area that really works to push your food down your throat.

Now, clearly that is a large portion that is gone and it will affect a lot…but his speech is AMAZING!!!! Even with the swelling that will linger for a while, he mostly sounds like he has a super bad case of strep throat. It is still very sore, and will be for a bit. The doctor said that healing wise, the incision should be pretty well healing within 2 weeks of surgery. He also said that the right side will pick up the slack and start doing things for both sides…kinda cool how the body works – must have had a great Designer! Apparently the tongue is one of the fastest organs to heal (which makes no sense to me at all). He will need to see a speech therapist to fine tune a few things – but we anticipate there may not be many sessions required.

Aside from the tongue surgery, the doctor took most of his lymph nodes on that side, from the chin line almost to the collar bone – this is called a neck dissection. That took a 6” incision in his neck that goes from just under his ear to almost the front of his chin…all just below the jaw line. It is pretty gnarly, but it seems to be healing well and once the staples come out (maybe tomorrow) he will probably feel much better.

Again, we are waiting on the final pathology reports that will dictate how he will proceed, but the initial path report was all negative…and so we pray.

I can’t begin to tell of the miracles our family has be witness to over the last 6 weeks. Speaking for myself, I am overwhelmed at what the Father has done for us through His people here on earth. I have been keeping a running note book with my thoughts over seeing and feeling all of the stuff and I will write about it someday – just not yet. I’m so thankful for all of the prayer coverage, the sweet cards, emails and Facebook posts…the love of Christ walking among us!

On a Roller Coaster with a Good Good Father...

I’ve spoken these words and written these words: If I am going to be in the blogging world, I should be willing to be real. I don’t want to present a “Facebook Perfect” picture – because no one lives life like that – especially me. My life is messy and dirty and ridiculous, but it is my life and I am blessed to have it – the good, the bad and the ugly! So, as I come back to the blog after a hiatus of sorts, I feel it is important to share what is happening in my messy life – and here is the realness of it all!

Our family has been hit with something that many families have been hit with. One of us, our son, was diagnosed with oral cancer 3 weeks ago – no risk factors at all – but alas, here we are getting ready to walk with him through a journey none of us would have ever dreamed of. I have pondered something over the past few weeks, how we don’t really address cancer directly unless it happens to us. As a society we rarely even say the word. We use terms like ‘the big C’ or ‘the diagnosis’. We are all afraid of it. Cancer is just plain and simple, an ugly thing to say and to deal with.

So many more things have happened in the weeks since the powerful blow was delivered – to trace God’s fingerprints in all that has occurred is to be amazed over and over again by His ever faithful presence. We have literally be front row witnesses to miracles – and I don’t want to ever forget those events. They are some touch stones for each of our family members that remind us of faith unseen working in visible actions.

I’m a big word picture person. And this journey has provided some of the greatest word pictures for me. The one that sticks the most is that we are on the biggest, scariest roller coaster ride ever. Climbing the huge hills, not know what awaits us on the other side. Taking curves and loops, being jerked from side to side until we feel like we can no longer hold our heads up as we fight against the forces pushing against us.

I think this picture fits me so well…I hate roller coasters. I have been talked into riding some since the Rocket Scientist and I have been married – mostly by him and our son. While they are screaming with delight and throwing their hands up in the air, I am squeezing my eyes closed and tightly as I can and trying to get my body as low and buried in the car as I possibly can. I don’t make any noise after the initial scream of terror on the first drop. I tighten every muscle, grip the safety bar as tight as I can and will my body to not move an inch – I go into a full protection mode. I’m not joking when I say I hate them.

And that is how I feel being the mom, watching my son going through what he is going through. I thought I was doing pretty good keeping it all together, putting on the happy face, doing all that needs to be done, giving my all to the areas I am involved in at my church, in my leadership group for creatives, etc. I haven’t really talked about it to people other than the clinical side of stuff. It’s just easier that way – deal with the medical jargon and you don’t have to deal with your emotions because you need to keep it together for everyone else to fall apart. That has been my thought. Where in the world did I get that from? Goodness knows I’m probably not the only person who has operated like this – but it is certainly not the best way to function.

Yesterday – out of nowhere, I lost it. Funny enough, it was in the middle of reading some scripture to put on a watercolor that I had done. Apparently God wanted me to grasp the full concept that it’s ok to not be ok – and that He’s got all of this. Last night was the time He chose to bring that into full view for me. Below is what I posted last night at the very beginning of a long night of, well, let’s call it intense conversation with God.

Since PJ's diagnosis I have said very little about it on social media. I grasp for words to explain my feelings. I struggle every minute to hold back tears and swallow what seems to be a permanent lump in my throat. I am not living in the 'what if' zone, I am living in the "I don't know how to do this" zone.

I don't know how to be strong in the midst of what appears to be an immeasurable hurricane. I don't know how to be the family cheerleader when we are together and the fall apart in the shower where no one hears. I don't know how to keep my baby boy from pain. I don't know how to shore up my daughter in-love with strength, hope and emotional support in the midst of this stupid cancer storm. I don't know how to keep biting my tongue when people say the stupidest things to us about cancer under the guise of "being helpful." I don't know how to keep pouring out when it feels like someone keeps draining my tank in the dark of night.

I am finding myself completely inadequate and overwhelmed in it all.

What I do know is this - I may not know how to do/be any of the above, but my God does. My God is keeping the family together. My God is the Great Encourager. My God will pour into me and replenish my soul. My God will show all of us how to climb this mountain placed in the middle of our journey. I know that I don't know how to do any of what is coming in my weakness, but in His strength He will show each member of our family how to do what needs to be done...and right now that is to pray & be still.

I feel like Much Afraid (Hinds Feet on High Places)...when the Great Shepherd places the seed of the flower of love in her heart. Love & pain go together. And so, because He bends down to listen, I will cry out to Him as long as I have breath. #‎cancersucks ‪#‎Godisgood ‪#‎thisismyshortpityparty

When I woke up this morning I had a new perspective on things – a true understanding that it really is ok to not be ok. And that God’s perfect strength comes out when we are at our weakest. Most importantly, I finally grasped that I can’t fix any of this. I can’t control anything going on with our son; I can’t make it easier for him; I can’t carry any of the stuff our daughter in-love is going through, for there are lessons she will be learning as well. What I can do is make sure our home is a safe place for everyone to be in and let go, I can make sure everyone is fed well and nourished. But most of all what I can do is just crawl into God’s lap and just BE. If I believe His word, then I believe that He has this whole situation under control. What I can do is pay attention and take it all in, never forgetting every little miracle as it happens. With His strength I can be the mom, the wife, the daughter, the friend, the leader He made me to be, and it is only by His strength that I can do any of those things.

The other thing He showed me very clearly last night, is that our family has an amazing support team. We each have people who support us individually and then we have a TON of folks all over the world (I am not kidding on that one – Singapore, Germany, England, Australia, India, Africa, Spain, Brazil, Russia…all over the globe) who support and encourage our family as a whole unit. I knew that already, but God gave me a better picture of that last night. I am so blessed; we are so blessed to call these precious souls our friends. To know that, if they could, any one of them would carry a part of this burden for us – and in some ways, they are. The sweetness of their words, and the power of their prayers, is more healing than they may ever know.

God is a Good, Good Father…

And so…now that I have started to put my feelings and struggles out there, it’s time to get back to some creative blogging (interrupted by the occasional update on what is happening in our lives as we ride this roller coaster!).

(ok…it’s been a while. Funny how sometimes the things you volunteer for take up as much time as a paying gig would. Alas, I’m trying to get back on the blogging train and be a little more realistic in how many times a week I post!)

Sunday Song...

I am so happy his new album hit #1 this past week. Yes...he is certainly a throw back to my childhood and earlier - however I think he is an amazing songwriter and artist (throw in Carole King and it's just perfection!).

The Rocket Scientist and I have shared many living room dances to his music...I hope we always will.