Coming back

My daughter inspired me today to start blogging again. It is a great way to let your emotions out and if nobody reads it, then that's fine. But hopefully the person that needs to read it will find it and be ministered to. It's been a crazy year so far. At the beginning of the year I wasn't sure that my husband would be around very long...but God has blessed us with more time with him. He's been on a treatment that has been keeping his cancer under control. We know he shouldn't be with us, but he is.

Unfortunately, we are waiting to see if the treatment is still working or if we have come to the end of this one as well. My husband has had a lot more pain lately and has some major head pressure going on. Some of the things going on could be side effects of the treatment, but it could also mean the cancer is growing again. He has scans coming up in 3 weeks and that will tell us the truth of what's going on. It's horrible having to wait to find out what road you will be on in a month.

My kids each know that their dad isn't feeling well and it's hard to see their little hearts break when they see their daddy hurting. Especially our almost 3 year old who doesn't fully understand what's going on. I truly hate Melanoma with a passion. I hate it! I hate it! I hate it!

Fake smiles and masks

I haven't posted on here since July. That was back when Scott's meds first quit working. I remember being devastated and crying like crazy. The future was so unknown and we just didn't know where we would end up or how long we might truly have with Scott.

We tried 4 treatments of Yervoy and they did not work. That whole time my husbands tumors continued to grow and every couple weeks we were increasing his pain meds and still could just barely get on top of it.

At the end of October, we had someone tell us to try alkaline water. Our thoughts were "it's just water, what's it going to hurt?" So Scott's been drinking the alkaline water since then. After being on the water for a week, Scott wanted to try the first meds again. We had about a months worth of Tafinlar and Mekinist, so we thought we'd give them a try. The meds and the water together worked very quickly and most of Scott's tumors that could be felt on the outside of his body went down or disappeared. We hoped this was our miracle...it just had to be.

But I sit here tonight, needing to vent my thoughts, and knowing that this is the only place I have to post my true, deep down feelings. Things quit working once again. The people who wanted us to try the water, want us to keep going. I don't mind doing so, because the water tastes very good and it has helped in many other areas. But I just don't know if it's going to work on my husband.

We have been going to an oncologist in Denver, but in a week and a half we will be meeting a new "team" of oncologists at a cancer treatment center in Chicago. I don't know what their options will be. I know in Denver we are down to our last treatment option with a 30% chance of actually working. I don't like those chances whatsoever...so I'm willing to try water or another cancer place.

This morning Scott said something to me that just broke my heart.....and this one phrase was the one reason that I couldn't post on facebook. As Scott got ready for work, we talked about getting the paperwork done and scheduling an appointment in Chicago. Scott has been very pale and ashy lately (not a good sign) and I was asking him how he was feeling. He said "If we don't go to this treatment center and find a treatment that works, I can feel that I won't make it through next year." What does a woman say to her husband who is just about saying that he won't make it through the next year.

Deep down, we know that his chances of making it to the 5 year mark with stage IV melanoma is about 15-20%, but I don't like to think about that. A life without my husband just doesn't seem right. I'm trying to be happy about Christmas, a time that's always given me warm fuzzy's and made me feel good, but I just can't get there again this year. I just can't destroy anyone else's Christmas with my deep down feelings of sadness and depressing thoughts of a possible last Christmas with my true love, so I have kept it all to myself.

I smile when people ask "hows it going". I make jokes and laugh about as much as I can.....if only they knew that my laugh is fake, my smile is more of a mask than a real smile. It's much easier to just say "we're doing ok" than to go into the whole thing about how our world is crashing down around us once again. That the future is so scary that I can't sleep at night....I watch my husband sleep....I make sure I can see his chest rise and fall with every breath, because that means he's alive and breathing. I try not to picture in my mind, that moment when his chest will no longer rise and fall and he will have left this earth, because even imagining it, takes my breath away...it makes my heart want to stop beating for fear that my imagination has become reality.

This is the world I live in. Family and friends continue on with life....continue on with the normal world of taking each other for granted and not having to fear that any day could be the last. They can fight without fearing that they might go to sleep angry and never be able to say I'm sorry. They can plan trips, church functions, get-together's with family and friends without worrying that they will have to call it off because the day is not a good day. I envy their normalcy, I envy that they can keep moving forward in a life that does not include cancer day in and day out.

As I sit here finishing up my post I'm actually praying that God will allow me to shed one tear...just one. A tear that would tell me that I have not hardened my heart so much that I can't feel emotion. I just can't cry anymore.....I've had to be tough for so long...I truly worry that I have lost the ability to feel normal everyday emotions. But I also fear that if I start the tears, I will not be able to stop them and they will overtake me.

I do not wish cancer on anyone or their loved ones. This is not the way life is meant to be lived.

Tough Stuff

It's getting to where it's hard to even put a title to my blog posts. What do you title something where you're talking about your husbands terminal cancer? This will be another tough post. So we are finding out that the tumors are starting to grow again. Not only did the nurse call us with that information, but with Scott's pain level increasing as well as how often the pain is there, we know the meds have quit doing their thing. This was so totally devastating news to us. Then we found out that the options we have, may not even be good options for us...unless we can keep the cancer from growing back in his brain.

Scott and I had a talk last night (ok, so I broke down and he was my shoulder), and talked out some of the tough stuff. We discussed that he is ok with being buried in Scott City, and we also decided that the Baptist Church in Scott City will be the best option for where to have his funeral. We have songs picked out, we even have most of the pallbearers picked out. And then I sit here typing this and I think "this is so stupid! who in the world has to discuss possible funeral plans with their husband while at the same time raise a toddler?" It's just not fair.....totally not fair.

I asked a really tough question of Scott last night. I wasn't sure I would like the answer, but I had to compare his thoughts with my thoughts. I can't even believe I'm about to type this, but since last fall I've always had in my gut that this year would probably be our last year with Scott. I try to convince myself that it's just my fear telling me this, but I know the difference between my fear and my gut. So this was the question I asked Scott "do you have any thoughts or feelings about how much time you may have?" His answer, "The way things are going now, I think it could be at the end of this year." I had just gotten done telling my mom that I thought it would be the end of this year or beginning of next year. So our time frames are about the same.

I hate the thought of this. To know that this year when we celebrate special occasions and milestones, they very well could be the last ones that Scott gets to take part in. How will I hold my family together after this? I'm holding on to the hope that Scott and I have it wrong. That maybe God is bringing us to the point of thinking about what it would be like to lose him, and then our miracle will happen. I know God is capable of it, I just know He is. But what if it's not in the plan? What if the bigger picture doesn't include Scott spending a lifetime with me?

I had put on my facebook status that this was the hardest thing I had ever in my life had to face, and that was totally the truth. I would gladly take on infertility any day of the week than have to face losing my husband to the cruel beast called melanoma.

I have to have at least one good thing to my blog post today. So here it is: Scott gets to fulfill his dream of playing the drums with his number one southern gospel group, Jeff and Sheri Easter. I'm so excited for him! This was one thing he told me that he has always wanted to do....so God made it happen (with the help of some wonderful people spreading the word). This gives us an awesome thing to look forward to in the middle of our h-e-double hockey sticks. I am also trying to find a time to fit in a trip to Disney World. This is my dream for our family, for our kids to know that they got to experience Disney with their daddy before he was gone. We'll see what I can get done with that.

This has been the toughest post I've ever had to type out. I know in my heart what all of this means, but to see it with my eyes....that's just hard. We're going to keep praying for healing and we're going to keep fighting. "Fight to the Death" is what I think we said to each other last night. Know that our faith still holds strong, even through our grief and pain. Without God right by our side, I know that we would not have made it this far.

What I've learned

Being on this end of things with Scott, I've learned a lot about what people can really do to help someone feel better. I want you all to really think about this. God is teaching me this as well, because I have not always been doing well at this myself. But I can tell you from now on I will do my best to do this to others going through tough situations. 

-if you say "what can I do to help" or "let me know if I can do anything" you NEED to follow through. If you know you can't follow through, please don't say it. 

-if a person is in the hospital, as long as they are up for visitors, please visit them. When Scott's been in the hospital he usually doesn't get many visitors and that makes him feel utterly alone. Don't be afraid to ask if the person is up for visitors. This is so important because you are there only contact with the outside world. 

-please don't neglect to ask the caregiver how they are doing....and they might tell you they are doing ok or they may "erupt" on you. Also keep in mind that even if they say they are fine, they may not be fine underneath the mask. 

- ask the caregiver to do something fun. In a lot of cases, their life revolves around the person they care for and from experience they can feel unappreciated for everything they do. Just make sure you pay some attention to them.....most of their life is about the ones around them. 

-with cancer like Scott's, there are good times and bad times, but remember that they still need support when things are going good. They may not talk about the cancer all the time, but the cancer never leaves their mind. They are looking it in right in the face everyday. These would be good times to ask them if they are doing ok. There may be days it's just a mask they are putting on. 

-a person going through a situation like cancer or anything that is shaking their faith to the core, does not want to hear the cliche sayings. They know that "God has a plan" and all those other "feely good" sayings but they don't want to hear them in the thick of things. Sometimes the best thing you can say is just your silent presence. 

-please don't second guess a decision that they have made (whether the caregiver or the "patient"). And definitely don't try and tell them what to do or make decisions for them. Life is already out of control for them, and these decisions are some if the only control they have....and they know what they need much better than someone outside of the situation. If they need advice, they will ask you. 

-also remember that they don't want to always be reminded of their situation. They know what the situation is so talk about other things as well. They just might interested in what you're doing. They would like life to be as normal as possible. 

-I don't know how many people are like me, but I'm very strong in the middle of a situation and I fall apart when it's all over. So be there for that person if they're the type that's going to fall apart after the situation is all said and done. This is a time when they're going to feel the most alone. 

-if you know someone with a terminal illness, please don't complain about petty life issues (aka drama) you may be dealing with, to them or the family. We understand that in your life it may seem huge, but to those of us who know we will be facing death (or the death of a family member) much sooner than we want to, we just might explode with rage if you start complaining about these kinds of issues. We know you must have someone else to vent to for that. 

-please remember that our emotions don't always make sense...even to us. Please allow us the opportunity to be angry, sad, upset, even a little crazy at times. We may even make jokes at what seem to be inappropriate times. I've had a time that I started sharing very overly sarcastic Facebook statuses that really confused people. There was nothing wrong with me, I just was so stressed that I went "crazy" for a day. (I might add that there were a lot if people at the time doing exactly what I'm saying not to do in this post. This was where I learned a lot of these suggestions)

A word from God...."by life or by DEATH"

Warning....this post is going to be hard to read and may cause you to be very emotional.

Today my dad gave my husband a word from God. It was something that my mom and I have discussed a lot lately, but there aren't many people I can discuss it with who truly listen. This has been something in my heart for awhile but have kept to myself for fear of offending anyone. But here goes, I'm going to bare my heart even more than I have so far. (and I hope I can make it through typing this)

The word my dad gave Scott was this verse. "I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death." Philippians 1:20. I went to the Bible and read the little bit before that verse starting in 18b and here's the whole thing: "Yes, and I will continue to rejoice, for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance. I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death."

This is interesting that the first part talks about rejoicing....I guess I might have to start at the beginning for everyone to fully understand.

The one word that I hear God saying to me over and over has been "rejoice". I know He is telling me to rejoice no matter what life throws at us. So it's very interesting that the word rejoice is in this scripture. I have been looking up the word rejoice and I can't even begin to put into this post what I'm learning about the word rejoice, so that will be another post itself.

Back to the word my dad gave Scott. The end of the verse says "so that now as always Christ will be exalted in my body, whether by life or by death". This is where it gets hard to read. Scott and I have felt for awhile now, that no matter how strong our faith is or isn't, Scott will not be healed (on earth that is). I know God is very capable of it, I have the faith that He can heal Scott in an instant. But what does the verse say....by life or by DEATH.

My dad finally understood today that there will come a time when we do say "so long for now" to Scott and that this time will be much sooner than any of us wants. It's such a fine line to walk where Scott and I are right now. We must have a hope for the future and dream about that future, all while knowing that this future probably won't happen. We also have to have the faith that God CAN heal Scott, all the while know that we just know deep down that God won't heal Scott on earth.

Because of this, Scott and I continually pray that God would use his death for Christ to be exalted. That maybe by celebrating Scott's life, others would see his faith and come to know the Lord in a new way.

I know that this post might be very hard to read...trust me when I say that it's very hard to write. Sometimes I wonder how I can even get my fingers to type my husbands name in the same sentence that I type the word death. And I can tell you that it's only by the grace of God that I can even function on a daily basis. It's only because God Himself holds me up.

Can I challenge you all to something? Will you examine your life right now today and ask yourself if you will rejoice in the hard times? Will you have courage to let Christ be exalted in your body whether by your life or your death?

Faith....real faith

I had someone ask me today if I was having meltdowns regarding the cancer. This person said they would be concerned about me if I didn't. I was honest with them and said that I do have meltdowns (maybe too many of them at times). But then it got me thinking. I know that we have the facebook page to let people know how things are going, but I try to stay so positive when I'm posting and most people don't see my meltdowns. They don't hear the words I say when I'm venting all my feelings about Scott's cancer.

I haven't lost my faith through the cancer and I want others to see that it's possible to praise God in the storm. But in doing so, have I hidden the fact that I'm human and am capable of yelling, screaming, and yes, even cussing when the going gets tough? It doesn't mean I wallow in it. I do pick myself back up, brush off what I just did, ask forgiveness where needed, and keep walking on.

I'm not perfect, just a forgiven child of God who still has "moments". This is my faith, my everyday, human faith. I stumble, I do fall, but God never leaves me, He never lets me go. I know when trials like Scott's cancer come to us, (this goes for all Christians) people watch to see if our faith stays steady or if we fall away from our faith when the going gets tough.

I want others to see a faith that's strong, but I also don't want them to think that I'm a "praise Jesus when I stub my toe" kind of person. That's the person that puts on such a good front that they end up looking fake...and they also get on my nerves with how much they smile...makes me wanna slap a frown on their face just for 5 minutes. (ok, enough with that) I do praise God in my trials, but I also get angry at times. I can promise you, more times than not, my first response to stubbing my toe is trying not to say the word/phrase that made it to my tongue....and it's not "Praise Jesus!"

I have screamed the word "WHY" angrily at God. I have sat in our recliner sobbing and yelling, "THIS IS SO STUPID!" As hard as this is to admit, but I have family members that have heard words come out of my mouth that would shock those who don't know that well. God knows what's in my heart, so it's better to get it out and move on. Holding on to it just makes the "volcano" erupt more violently later on (emotionally speaking).

It's on my heart to write a book about our journey with Scott's cancer. I want to do this for two reasons: 1)I have only found one book about melanoma and as real as it was, I found no hope in the book and I want people to be able to read a book about melanoma and find hope 2)When I write, I can get my feelings out and not bottle them up inside. The name that my mom and I came up with for a title is, "Joy in the Mourning". I want this book to be about finding hope and joy even when your husband is told that he has terminal cancer.

I want to have joy in ALL things, but joy is not always the "happy" and "giddy" feeling we think of. Joy is a lot like love....it's a choice. It's choosing to count your blessings when all you can see is the probability of your husband dying within 2 years. It's choosing to sing praises when you want to be angry and yell at God for your situation. It's going out of the house when all you want to do is to stay at home and wallow in your emotions. It's dreaming about the future when the future is uncertain.

I guess in all my ramblings my message is really one thing. FAITH...real faith, it's the relationship you have with Christ, even through the trials. It's not about being or acting perfect so the world sees a perfect life. It's about being real, knowing this world is full of trials and tribulations, but having the hope for a wonderful future with our Lord and Savior. My life verse says this about faith in Hebrews 11:1, "Now faith is the substance of things hoped for, the evidence of things unseen."

What do I see with my earthly eyes? I see a dark future of uncertainty, where my children may grow up without their daddy. I see a future of possibly being a single mother someday, of saying goodbye to the love of my life. A life where I sit by my husbands bed-side and say good bye.

But what does my faith see? It sees a future where God makes good things come of bad situations. It sees that my children will always have a daddy in God. And most of all, I see a future where all my family and friends who have accepted God's gift of eternal life through Jesus Christ, will get to spend eternity (forever and ever and ever) together in Heaven.

Rejoice

For the past few days I keep seeing one word. I've seen it on facebook, I've been hearing it, and then this morning I see it in the scripture that went with my devotion. I believe this is God trying to convey this message to me. It's one I need, that's for sure.

1 Thessalonians 5:16-18 says:
"Rejoice Always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus."

My word of the day? REJOICE!

I need to rejoice in all things, everyday. Even when trials come my way, or I'm having a bad day, it's time to rejoice. This message couldn't come at a better time for me. I know in my head what I should be doing, but my heart just won't get there sometimes. I get hurt, I feel betrayed, I feel worthless and even lonely. But these are just feelings that can pass as easily as a cloud in the sky. It's the truths of God that will stay forever, and in this I can truly rejoice.

I know there are things in your life that you can rejoice about. Things can be falling apart, and you will still have something to rejoice about. Do you have a home to live in? Do you have family to stand by your side no matter what? If you have nothing here on earth you feel you can rejoice about, remember that you always have a heavenly Father that loves you so much, He sent His own son to die on the cross to pay for your sins. Now that's something to truly rejoice about!

There's even a Bible song that I remember singing as a child that drives the point home:

Rejoice in the Lord always and again I say rejoice.
Rejoice in the Lord always and again I say rejoice.
Rejoice, rejoice, and again I say rejoice.
Rejoice, rejoice, and again I say rejoice.
Rejoice in the Lord always and again I say rejoice.