Wednesday, April 29, 2015

The roller coaster

Wow, what a crazy couple of days it has been!! So much to process in so little time. As most of you are aware, I had decided to stop all treatments and leave things in God's hands. I just couldn't face the rollercoaster of emotions. The high when I was hoping something would work and then the low of finding out it didn't. I was insisting to everyone that I wasn't giving up, I was just giving it to God. I was trying desperately to convince myself of that too. But it wasn't entirely true. Let's call it 50-50. I definitely have faith that God can heal, but I also was completely done. Done, done, done. I couldn't gather one more ounce of energy to fight anymore. If I were being completely honest (and I try very hard to be), I sunk into a bit of depression. Well, I'm sure my husband would probably say more than just "a bit".

So, when I found out the other day that there was another possible option, I jumped at it. Maybe too quickly....but it seemed to give me the kick in the you-know-what that I needed. I also took it as a sign from God because I wasn't researching the internet looking for treatments to bug my doctor about. This came to me without me trying. Of course, upon learning about the cost, I got scared and started doubting. Then I saw another friend's Go Fund Me page and thought that might be something to try. I was pretty sure my husband would say no because where I dislike asking for help, he really, really, REALLY hates it. But when he agreed it was worth a try, I moved ahead full force. Got the page created and started spreading the word.

And the reaction (for the most part) was so positive! People started offering to help with fundraisers and giving me ideas how to get out to Texas at no cost and offering places to stay. I was completely overwhelmed by it all. It was almost like people had just been WAITING for me to ask for help. Like finally I had given them some way to help us during this difficult time. Here they were helping ME and they were acting as if I was actually doing something for them. The love of God was shown through so many people yesterday! He was absolutely in charge of this.

But when things are going well, and it's obvious God has control of something, the devil will almost ALWAYS show up and try to wreck things. I saw it in a few comments I received yesterday. Like "it's a huge amount to ask for and it might offend some people". And "I really should have had someone else in charge of the page because it's better for a family member to ask for the money instead of me." And: "what if the treatment doesn't work? Will I feel guilty and want to pay everyone back?" And: "People might start getting sick of hearing so much about your cancer. They might start defriending you because they don't want to see it on their Facebook newsfeed". And that did happen - I had a couple people defriend me. And of course, when I found out, my feelings were a bit hurt. But I had to remind myself this isn't about friendships, it's about saving a life. Yes, that life is mine. And maybe it is more "acceptable" if the life were my son's or someone else, but that's not the case. So, if I annoy some people and they just wish I would go away, I can actually understand that. I'm annoyed with it myself so I can't imagine how everyone else around me feels.

Then I found out that an old rumor had come back around and it got back to me. And it stung. Stung BAD. Hurt me to the point that I just said "forget this. We're not doing this. We'll return everyone's money and we'll find another way." Yes, I have very thin skin. VERY! And I'm too bothered by what others think and believe. It's always been a problem for me. I wish I could say I'll change one day, but even though I'm better than I used to be, I know it won't ever completely go away.

So, last night I was up well past midnight praying about what God wanted me to do. Not what I THOUGHT He wanted from me, but His plan. I was on my knees for about an hour and didn't hear anything. It was just like white noise in my brain. But I was able to feel calmer. I was able to put the hurt and rejection and anger aside. After a bit longer, I decided I wasn't going to hear from God at that time. I finally fell asleep and about 4:30 am I was woken by Alex crying in his bed. He was having a bad dream, so I layed down next to him. He immediately turned his body towards me and wrapped his right arm around my neck. He stopped crying and settled down instantly.

And there was my answer. I'm not asking for this money for me. Because, honestly, if it weren't for being a Mom and wife, I know I would have given up long ago. It's been a very long three years. But when I decided to bring a child into this world, it stopped being about me. I don't have the PRIVILEGE of giving up. That is no longer up to me. So, if I hear people saying that my "story" doesn't add up. Or I learn of someone saying not to donate because who knows where the money is really going. Or I hear of someone getting annoyed by all the people who have shared my page. Or have someone question why my cancer keeps coming back and I'm doing this for attention....well, all I can say to them is: This isn't your life. It's mine. I'm doing the very best I can. I'm trying to fight this disease the only way I know how. It may not be the way you'd do it or even how my own husband would do it. This imperfect girl (very imperfect) is trying her hardest to fight a nasty disease. And that fight hasn't been perfect because I'm not perfect.

So, I come to you today asking a few favors. First, please, please, PLEASE do not feel obligated to donate just because you see my Go Fund Me page come across your newsfeed. Pray about it, think about it. If you feel led, I appreciate the help. I really, really, REALLY appreciate it. But if you don't feel led, that is okay too. It's impossible to help every cause that is circling around these days. I don't want anyone to feel like they have to help in order to be friends with me. I don't count friends by money spent. Never have and never will. Your love and support and prayers are worth far more to me.

Secondly, if you have questions or hear rumors or don't understand something I've said or done, please ask me directly. I will be as honest with you as I possibly can. Things can be cleared up MUCH easier when people communicate to/with each other than talking behind each other's backs.

Third, please know that this was a difficult decision for my husband and I to make. If we weren't feeling at the end of our ropes, we never would have asked for the help. And for two people who hate to ask for help, asking for this much help is SUPER hard. Please know we didn't decide this lightly.

Thank you to EVERYONE who has been supporting us through this journey. Fatigue has set in but I know God will rejuvenate my spirit to keep up the fight.

Blessings!

Monday, April 27, 2015

When it's time to ask for help, just ask...

For those of you unaware, I've been dealing with some tummy issues lately. A week ago I went to the nearby walk in clinic and they said it was diverticulitis. However, after a week of still constant nausea and pain, I decided it was time to see the gastro. I needed to know if we were dealing with more than that since I wasn't really getting better. Going into the visit, I knew they would probably want to do a CT scan and I had already looked up the probable cost. I was dreading that far more than the doctor visit.

Sure enough, the doc ordered the test and I went over to imaging. When I found out the actual cost, I was ready to say "no, just forget it." To say I stress over money would be an understatement. I joked with my husband today that they need to make a pill for that but it would probably cost a fortune. :-) Anyway, I was told my co-pay and I said I wouldn't do it. I called my husband and told him I didn't want to do it because of the cost. His response: "so you're just going to writhe around on the floor in pain the rest of our lives?" Yes, he is definitely the sane one in our relationship. I handed over my credit card and preceded to wait until I was called back.

During my wait, I had time to think about my instant reponse. It wasn't like I thought for a few minutes and said "nah, I don't want to spend that money." It was immediate, a visceral reaction. Like, "no way. Can't do it. End of story. Can I please go home now?" My mind started to think back to something I wrote last week on Facebook. If Alex needed that CT scan, would I have even hesitated? I still would have stressed over the expense but I never would have dreamed of saying no to the test. For Alex, I would have spent the money without hesitation.

As my mind wandered down this path, I recalled some of the comments I received about how I needed to take care of myself just the same way I would take care of Alex. Because if I don't, then I might not be here when he needs me. Thank you, by the way, to all those that helped me see the light. It may not have sunk in a few days ago, but it really sank in today.

And it's a good thing too, because while I was waiting for the scan, I got a call from my oncologist. Coincidence? Not a chance. God had written this story long before today. So, I answered the call as I'm drinking the wonderful medicine for my scan. She preceded to tell me about a medication she had been reading about that might be helpful in halting the growth of my cancer cells. There have been only a few trials, but the results for patients with lung cancer have been very encouraging. She told me she knew I wanted to take a break from treatments, but this was too exciting for her not to bring it up. In my head I'm thinking, "Okay, I just might give it a try. What do I have to lose?"

Until she told me the cost. See, it's not covered by insurance, there is no patient assistance program and the total cost is $15,000 for three treatments. Not only that, the treatment would be at MD Anderson in Houston, Texas. So, I'd have to fly three different times from Birmingham to Houston. Therefore, my answer turned to: "nope, can't do it. Not happening. Thanks for looking into it for me, but there's no way for us to come up with that money." To which the doctor replied: "what would you do if your son had cancer and this was an option to save his life? What would you do?" I told her I would throw my pride out the window and go door to door begging for money if I had to. No matter what, I would find that money. She told me to think about what I just said and give her a call back tomorrow.

And so there I sat, wondering which was going to win out - my pride or the need to try every last possible option to save my life. After much thought, I decided I needed to get rid of that stupid pride and ask for help. Sure, I've sworn for three years that I would never ask for help with the medical bills. I have always found a way to cover them, even though some days I worried about how I would. I prided (there's that word again) myself on finding a way each time I was up against a a drug or surgery or treatment I didn't think I could afford. And if it wasn't financially feasable, I just said no.

But this time, I won't be able to find an extra $15,000. There's no company for me to bully to get it covered. It's a trial so insurance won't pay for a dime. And so I'm stuck. But today being stuck is turning out to be a good thing. Because it made me realize I don't WANT to give up. I think I was there for awhile, but this situation has kicked me back into high gear. I need to try this. Even if it ends up not working, I need to be able to tell my son that his Mommy did EVERYTHING she possibly could to kick cancer's butt.

So, I did the thing I swore I would never do. I created a Go Fund Me page. And I set a goal. And I'm asking for help in coming up with the funds for this treatment. Please, please, please know that I don't expect anything. I understand we are all hit from 8 bazillion different directions with people asking for money. If you are unable to help out, I COMPLETELY understand. I only ask you to donate if you feel led to. Think about it, pray about it. If you are not in a financial situation to help, maybe you could share the page....If you don't feel comfortable doing that, I ask for your prayers. Please pray that God will provide....as He has each time before.

God bless each and every one of you. Thank you!

http://www.gofundme.com/t3hcmw

Friday, April 17, 2015

How much crying is too much?

When I first found out that our latest treatment didn't work, I spent about two weeks in a dark place. I would cry at the drop of a hat, I was incredibly moody (my poor husband) and I just couldn't seem to pull myself out of that depressive state. No matter how much I prayed and tried to rely on my faith, the human emotions just wouldn't be cast aside. Thankfully once the third week began, each day I seemed to handle things a bit better. It was like a lightswitch had been turned on and I could see things clearer. I was reminded that it wasn't the end of the world and God was still in control. I told myself the time for tears was over and time to get back to thinking positively. As a good friend says: "time to put on my big girl panties" and move on.

And then yesterday the tears were back. And I was SOOO mad at myself. Which of course made me cry more. It was a culmination of things, but still didn't warrant all the tears. Or did it? And that's where I'm stuck today. I want to be positive, I want to BELIEVE, I want to carry on with a normal life despite my diagnosis, I want to have fun with my husband, son and friends. But this despair keeps coming back around. And then I get mad at myself. And tell myself to just get over it. But of course that doesn't help.

To be quite honest, at this juncture, I need a champion. And I'm not doing a good job at being that for myself. Not meaning to complain, but my body and mind are just worn out and exhausted. I wake up tired, go through the day tired and go to sleep tired. Every muscle seems to hurt, my brain is foggy (I can't seem to remember how to do the most common tasks) and I'm nauseous all the time so I don't want to eat. I share all of that, not to complain, but to maybe explain where I'm currently at. I logically know that my body is fighting hard to get rid of this cancer, but mentally it frustrates the living daylights out of me. I just want to have a day where I'm not fighting all these physical symptoms on top of everything else. I want a day where it's not a struggle to get up off the couch and play with Alex.

Last night I told Matt: I need someone to tell me it's okay to let go or someone to convince me to keep fighting. Not meaning that in the "I want to die" kind of way. Of course I want to live. But there are times that moving past all this and being out of pain is just very enticing. As you all can guess, Matt said he would definitely not be the person to say it's okay to let go. And I love him for that. But, God bless him, he's not the person to give me the "rah rah" speech I'm looking for. That is not his make up. He is the person who will logically explain why I need to keep fighting. And his logic has brought us far in our years together - can you imagine if both of us were as emotional as I am? God forbid, right? :-)

But that leaves me in a conundrum (big word for this early in the morning). I KNOW I need to keep fighting. I KNOW there is no other option. I KNOW I need to get past this rough patch. I KNOW I need to tell the devil to take away all these negative emotions. But KNOWING it and DOING it are two different things right now. So, today I come to you asking for your help. Can you please pray that God will provide me the cheerleader that I need? That He will clear away this sad time and help me to enjoy each day He has given me? That He will let me know it's okay to be sad from time to time, but show me how to STOP it from consuming me? Please pray that I will accept from people what they are ABLE to give and not be upset when they can't give more? Please pray that I'm reminded that there are certain skills I don't have; therefore other people in my life are the same way.

Thank you to each and every one of you. I'm sorry if I am laying too much at your feet today. I just needed to be honest and ask for the help that many of you have offered.

God bless you and I wish you a wonderful Friday. We made it! :-)

Friday, April 3, 2015

Giving up or giving in to God?

I've been waiting to write and give an update on our next step until I had bounced back from the unfortunate news we received. Only problem is it's been two weeks and I'm not doing the greatest at 'bouncing back'. I swore that I wouldn't make this blog a pity party for me or a place just to vent. So, I've been worried to write and come across as negative or feeling sorry for myself. I've desperately been trying to dig myself out of the black hole but I'm pretty much failing at that....and for that I've been beating myself up.

Just to update anyone that missed the news, the radiation did not do anything to reduce the tumors. They haven't grown in size, but they haven't gone down either. So, there's two ways to look at that: Yeah! They aren't any bigger! or Oh My God, nothing we have done has worked. And try as I might to focus on the first, the second is what keeps running through my mind. Sure, on one hand it's understandable. It's been a LOOOOOOONG three year fight and I'm entitled to be upset. But on the other, me getting so down in the dumps doesn't do anything to solve the problem.

When I heard the news that day, I immediately said "I'm done. I can't do anything else. I'm exhausted emotionally, mentally and physically." What makes it hardest for me is the ONLY thing my doctor suggests is surgery to remove my lung where the cancer has taken up shop. But that is MAJOR surgery with a long recovery time and rehab afterwards to build up the remaining lung. I just don't have it in me. And one thing I've learned in this battle is that attitude is 90% of the fight. So, in my eyes we don't have options because that one is just too far out of reach.

When I was filling in one of my best friends this week, she said: "You've been told before that there are no more options, but you always found something else. How do you really know this time the doctor is right?" I've thought a lot about that question and I believe the answer is "I don't have the energy to keep looking for things we haven't tried". I have changed doctors several times because as soon as one told me we were at the end of the road, I would refuse to hear it and find another doctor who had a different response. Round and round I've gone. I've spent countless hours online myself searching for that one drug or treatment we hadn't tried. If it was a drug trial, I would fight my way in. If I was denied, I would keep trying until they said yes. If it was something my insurance didn't cover, I would use everyone I know to help me to change their minds. I never took no for an answer. I never accepted "there is nothing left to try". Until now.

And today I'm trying to decide if that means I am giving up or simply giving it up to God. I'm so very weary that I have NO choice but to turn it over to Him. What we are doing is simply not working. So, maybe that is God's way of telling me I need to stop. Isn't the definition of insanity doing the same thing over and over even though you get the same result? Well, today I've decided to stop the insanity. Maybe I can't beat cancer by being stubborn and tenacious and bullheaded. Maybe I don't have the answers after all and won't be able to find them through Google. Maybe there is no doctor, drug, treatment or trial that will cure me.

But that doesn't mean there is no hope. Because I know what God is capable of. I know that He has the ability to heal me today or tomorrow or the next day. And that is the hope that I'm clinging to. Or to put it more accurately, that is the hope I'm TRYING to cling to. Because I would be lying if I said I wasn't still depressed and sad and worried and scared. And I swore that I would never lie to you guys, no matter how bad it made me look. I will freely admit that my faith has taken a beating. Not that I don't believe, I just don't know what God's ultimate plan is and that is the part that is scary.

So today, I am praying for God to show me the way out of the sadness and towards the light again. I know He can do it. I just need to lean on him 100%. And anyone that would like to pray with me, it would be greatly appreciate it.

Please know how much I DEEPLY appreciate all your messages, texts, emails, calls and prayers. I wouldn't be able to make it through this without you guys. Love to you all!