Each day with a terminal illness is a choice. Will I be positive today or will I let the emotions way me down? Will I look at the glass as half full or half empty? Will I choose to smile or choose to cry? To be completely honest, the last few months have been 50-50. I've been very frustrated by all the things I CAN'T do and have let myself focus more on those, instead of what I CAN do.
For example, we had a birthday play date with a great friend of Alex's (and mine) at a local "jumpy" place. Alex LOVES these places because of how hyper he is. However, lately I just can't find the breath to expel that kind of energy. And it bothers him, which then upsets me. The day after the get together, he said that his friend's mom loves her more because she jumped with her. I tried explaining to him that five minutes of me exercising is about equal to him running around for an hour. I get that out of breath. This seemed to appease him. But of course, it stuck with me longer. It pissed me off (scuse my French) that I couldn't play with my own son. That I couldn't be silly with him. That I couldn't build those memories with him.
Then I had to remind myself that at least I was still there. I was at the party with him and our friends. That I got to see him having fun, that I got to take pictures of him/with him. Was it perfect? No. Was it exactly how I would wish? No? Was I sitting on the bench feeling a bit lost because I wanted to be on the inflatables? Yes! But I was there. 3 1/2 years after being diagnosed, I am still here. My health has declined and the disease continues to effect me in more ways each month but at the end of the day, I'm still here. And that is where my focus needs to stay.
But with me reminding myself that I'm still here, the devil's advocate in me asks "what if there comes a day when I'm not?" Now that he's 6 1/2, I know he would remember me. We have a gazillion pictures together so he would have those to look at. We spend a TON of time together, so those memories would stay in his head. I feel like he's already picked up a lot of my personality (good and bad) so I know I would live on within him.
But still I ask myself, "have I put enough people in his life that would be around after I was gone" (God forbid that happens)? Of course he has a wonderful, amazing, attentive, fun, caring, loving father. He has a great set of grandparents who think the world of him. He has a great aunt, uncle and cousins, and even though they live out of state, I know they completely adore him.
But what about our social network and our friends? As this disease has progressed, I have tried to focus on the people who I could see sticking around. I've always been a VERY social person, but I have changed my mentality from "the more friends the better" to "quality over quantity".
There's my great friend of over 11 years who is more like a sister and therefore an aunt to Alex. It confuses the heck out of him because he wants to know when she and Matt were brother and sister. :-) Even though we are NOT blood, she's seen me at my worst, been there with me when we tried so hard to have Alex and held my hand when I cried more times than I can count.
There's the friends we've made over the last couple years who have also become more like family. They are part of our lives because we all have fun together and can get along when we travel together and our kids enjoy playing together. But also because they raise their children pretty much the same way we raise Alex. And I know, if I weren't around, they would continue to be there to help Matt. I know that they love my son almost as much as I love him.
There are some new friends that we've met through Alex's class who have become an important part of our support system. Even though they are new to our lives, I believe that they already care enough to stick around. And given that they have boys Alex's age, I know that would help give him some stability.
Then there are friends from church who have watched Alex grow up over the last 3 years. They seem to have his GENUINE interest at heart and would help raise him up with God at the forefront - something that is VERY important to me.
But I'm left wondering - have I done enough? Would he feel enough love? Would his life still be complete and fun? Would he have enough friends to play with? Enough people in his life that would watch out for him as he grows? Would Matt have enough help? Would he let these people from our inner circle assist with shaping our son?
And as I get to the end of this blog, I have to believe the answer is yes. I have to believe that our bonds with family and friends are strong enough that Matt and Alex wouldn't be alone. That they wouldn't FEEL alone. That there would still be fun play dates and vacations and camping and baseball and kids playing at our house. I have to believe that our community of faith would continue to help raise Alex in the church.
I have to believe that I've done enough. That the people in our lives would still be here in case I wasn't. And to those people, I say "thank you". Thank you for giving me that sense of peace. Thank you for loving us all enough. Thank you for caring enough. Thank you for just being you.
God bless each and every one of you. Because without everyone here, I know I would let the "glass half empty" days overwhelm me much more than they do. Thank you for your support - not just of me but of my two guys. Even though I'm the one who is sick, I think they actually need you all the most. And I just want to make sure they are ALWAYS taken care of. Hope everyone has a great day! :-)
Thursday, June 4, 2015
Tuesday, May 26, 2015
Honesty can be the hardest thing
Today's blog is going to be a bit hard for me to write because it's very honest. Even more honest than I normally am. I've been holding a lot of things in, trying so hard to be positive, not wanting people to see how much I'm truly crumbling. I just didn't think it's what people want to read; I mean, who wants to be around a "Debbie Downer"?
I also try soooooo hard to show God's hand in this fight and if I show how some days I'm falling apart, am I letting people down? Am I letting Him down? I write over and over and over about how He has a grander plan, how He can provide miracles, how He can heal me in an instant and how I need to lean on Him to get through this.
Please don't mistake for one moment that I still believe EVERY word of that. It's not like I've just been writing it to sound like the "perfect little Christian." I believe in miracles more than you can possibly know. I believe wholeheartedly that God has the power and that I am His child. I know He cared about me before I was even born.
But the thing is...I'm human. So therefore I'm not perfect, even though I so badly want to be. And because I hate for people to see me on the "rough" days, the ones where I'm falling apart, I tend to seclude myself. I will stay home from church, I won't hang out with friends, I will work from home, etc. I'll continue to let the outside world believe that everything is hunky dory, that I'm just hanging out waiting for my cancer to be taken away.
However, while I'm doing that, I'm falling apart inside. Like really falling apart. More than I care to admit. I'm scared and frustrated and worried and I feel the weight of this three and a half year battle on my shoulders. I feel incredibly alone, although I know I've pretty much done that to myself. People don't see the "scared" me, so how do they know I need help? I pretty much never say it. So, I just hold it all in until I break down; kind of like a volcano.
And who takes the brunt of it? Of course my husband since I don't allow anyone else to see how much this is truly effecting me. Only he knows how much I cry or sit alone on the couch and just worry. Only he knows how much I doubt myself. And today it all came to a head. And I knew that I had to lean on someone other than him. He needed a break and I needed to let someone else in.
So, I texted a dear friend, and she was there. She was there in the best of ways. She listened to me cry and vent and share all the things I've been worrying about. She listened as I told her how much I feel like a terrible mother because I can't insulate Alex from all of this. She listened as I told her how far away I feel from God, and how I wasn't sure how to fix that. She listened as I told her the one thing you're not supposed to ever say when you have Cancer: why do I keep fighting? Is it all worth it? Am I worth it? Is it fair to keep putting everyone through this.
And after listening to all that, she told me the thing I most needed to hear: that she was glad I had reached out to her. That people have just been waiting for me to do that. That it's okay to fall apart like I did, that it wouldn't be normal if I didn't. She also assured me that I haven't damaged Alex for life and that he wouldn't be better off without me. Which I know in my head, but sometimes I need to be reassured.
But the most important thing she told me is that I need to find a way to get closer to God, because He is the ONLY WAY I will make it through this. That I need to get back to having one-on-one time with Him and I need to get back to church. Whether it's my current church or another one (not that I'm saying there's something wrong with mine), I need to be in His house where He can fill me up each week. Because my tank is on empty. I've been looking for all the ways I can fill that tank back up: resting, exercise, eating healthy, vacations, long walks, reading a good book, quality time with the family, etc, etc. But none of it is working. Because ONLY HE can do it.
After that great conversation, I was headed to lunch with another good friend. I had been crying off and on all morning so my face and eyes were a mess. I had no make-up at my office so I soooo badly wanted to cancel. I didn't want her to see me like that. And then I thought back to what my other friend had just finished saying: people want me to let them in, they want to see me at my worst so they can be there for me.
And boy am I glad I went. Because this friend was also there for me in a great way. She told me all the ways I am a great Mom and gave me a different way of looking at things. She also gave me some ideas on how to express my worries before I completely fall apart. But most importantly, she was just there. Not judging me. Just listening. And smiling at me and offering love. And all I had to do was accept it. What a nice, wonderful feeling. And SOOOO needed today.
Today I want to say I'm sorry that I haven't shared more about how hard this has been. For those that know me, they know it is when I'm NOT writing. Because when I'm really stressed/worried/sad, I'm afraid to put it all on paper and depress the people who are reading it. I'm afraid of letting people down. I'm afraid that people won't want to be around me if I'm down in the dumps. So I just do my best to put on my happy face and if I can't do that, stay at home so I don't bring others down.
Today I also want to hold myself accountable for working on my spiritual connection with my Heavenly father. If there is distance between us, it is never going to be His fault. It will always be mine. So it's time to put in the effort. If He had His son die on the cross for me, the least I can do is put Him back in my day.
Thank you for listening and for all your prayers. You have no idea how much they help me on a daily basis. God bless each and every one of you!
I also try soooooo hard to show God's hand in this fight and if I show how some days I'm falling apart, am I letting people down? Am I letting Him down? I write over and over and over about how He has a grander plan, how He can provide miracles, how He can heal me in an instant and how I need to lean on Him to get through this.
Please don't mistake for one moment that I still believe EVERY word of that. It's not like I've just been writing it to sound like the "perfect little Christian." I believe in miracles more than you can possibly know. I believe wholeheartedly that God has the power and that I am His child. I know He cared about me before I was even born.
But the thing is...I'm human. So therefore I'm not perfect, even though I so badly want to be. And because I hate for people to see me on the "rough" days, the ones where I'm falling apart, I tend to seclude myself. I will stay home from church, I won't hang out with friends, I will work from home, etc. I'll continue to let the outside world believe that everything is hunky dory, that I'm just hanging out waiting for my cancer to be taken away.
However, while I'm doing that, I'm falling apart inside. Like really falling apart. More than I care to admit. I'm scared and frustrated and worried and I feel the weight of this three and a half year battle on my shoulders. I feel incredibly alone, although I know I've pretty much done that to myself. People don't see the "scared" me, so how do they know I need help? I pretty much never say it. So, I just hold it all in until I break down; kind of like a volcano.
And who takes the brunt of it? Of course my husband since I don't allow anyone else to see how much this is truly effecting me. Only he knows how much I cry or sit alone on the couch and just worry. Only he knows how much I doubt myself. And today it all came to a head. And I knew that I had to lean on someone other than him. He needed a break and I needed to let someone else in.
So, I texted a dear friend, and she was there. She was there in the best of ways. She listened to me cry and vent and share all the things I've been worrying about. She listened as I told her how much I feel like a terrible mother because I can't insulate Alex from all of this. She listened as I told her how far away I feel from God, and how I wasn't sure how to fix that. She listened as I told her the one thing you're not supposed to ever say when you have Cancer: why do I keep fighting? Is it all worth it? Am I worth it? Is it fair to keep putting everyone through this.
And after listening to all that, she told me the thing I most needed to hear: that she was glad I had reached out to her. That people have just been waiting for me to do that. That it's okay to fall apart like I did, that it wouldn't be normal if I didn't. She also assured me that I haven't damaged Alex for life and that he wouldn't be better off without me. Which I know in my head, but sometimes I need to be reassured.
But the most important thing she told me is that I need to find a way to get closer to God, because He is the ONLY WAY I will make it through this. That I need to get back to having one-on-one time with Him and I need to get back to church. Whether it's my current church or another one (not that I'm saying there's something wrong with mine), I need to be in His house where He can fill me up each week. Because my tank is on empty. I've been looking for all the ways I can fill that tank back up: resting, exercise, eating healthy, vacations, long walks, reading a good book, quality time with the family, etc, etc. But none of it is working. Because ONLY HE can do it.
After that great conversation, I was headed to lunch with another good friend. I had been crying off and on all morning so my face and eyes were a mess. I had no make-up at my office so I soooo badly wanted to cancel. I didn't want her to see me like that. And then I thought back to what my other friend had just finished saying: people want me to let them in, they want to see me at my worst so they can be there for me.
And boy am I glad I went. Because this friend was also there for me in a great way. She told me all the ways I am a great Mom and gave me a different way of looking at things. She also gave me some ideas on how to express my worries before I completely fall apart. But most importantly, she was just there. Not judging me. Just listening. And smiling at me and offering love. And all I had to do was accept it. What a nice, wonderful feeling. And SOOOO needed today.
Today I want to say I'm sorry that I haven't shared more about how hard this has been. For those that know me, they know it is when I'm NOT writing. Because when I'm really stressed/worried/sad, I'm afraid to put it all on paper and depress the people who are reading it. I'm afraid of letting people down. I'm afraid that people won't want to be around me if I'm down in the dumps. So I just do my best to put on my happy face and if I can't do that, stay at home so I don't bring others down.
Today I also want to hold myself accountable for working on my spiritual connection with my Heavenly father. If there is distance between us, it is never going to be His fault. It will always be mine. So it's time to put in the effort. If He had His son die on the cross for me, the least I can do is put Him back in my day.
Thank you for listening and for all your prayers. You have no idea how much they help me on a daily basis. God bless each and every one of you!
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!
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
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! :-)
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!
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!
Thursday, March 26, 2015
It isn't a matter of how good you are...
Some of you may know that I have closely followed Kara Tippetts' fight with cancer. She was a 39 year old Christian author, wife and mother of four who battled breast cancer. Around December of last year she found that it had metastasized to many other parts of her body, including her brain. At that time, the doctors decided that the fight was over; there were no treatments left to try. A couple of months ago, she was moved home to spend her last days and put under hospice care. On Sunday, Kara went home to be with Jesus.
I first came across Kara on Facebook because several other friends were following her page. Then I learned about her book 'The Hardest Peace', which documented how she dealt with her disease and how she relied on her faith to get her through. As hard as it was some days to read, that book became almost my manual for how to cope with my own cancer fight. She was my inspiration for how to live in faith, not just to talk about it. When I wanted to give up, her words reminded me that I was not in this alone - God was simply waiting for me to lean on him.
Several weeks ago, I wrote to Kara to tell her how much she had helped me and to let her know I was praying for her. To my surprise, she wrote back and said she would also be praying for me. I couldn't believe, in her state, that she was still thinking of others. But from what I can tell, that is just the type of person she was. And so started our connection. We emailed back and forth a few more times and each time she sent me encouragement, love and words of faith.
As Kara's days were coming to an end, I found myself checking Facebook daily to see if she had a post. Each time that I didn't find one, I worried that she had passed. As much as I was worrying about her, I was also worried about myself. In the back of my mind, I really thought there would be a miracle and God would cure her. I just couldn't imagine Him taking someone so pure of heart, love, joy, wisdom and faith. And if He did, what would that mean for me? I kept thinking: if He doesn't save her, WHY on earth would He save me?
On Sunday I learned she had made the trip to Heaven and I was in shock. I just couldn't believe it. What happened to her miracle? She was MORE than deserving of it, so why didn't she get it? For the first couple hours of the day, I was scared out of my mind. Just a few days before we found out my radiation hadn't worked and I was already worried about my own future. And now Kara was gone.....I just kept replaying the same thing over and over in my head: if not save her, why me? What chance did I really have for my own miracle?
And then God gave me the answer. Because He hadn't saved her, I had hope. Bear with me here.....If God had cured Kara of her cancer because she was such an amazing Christian and so deserving and loving and caring, then I truly had no chance. I could never live up to her standards - not in a million years. However, for some reason, He allowed the cancer to bring her home to Him. I won't begin to guess why - it is His plan, not mine. But, in this situation, it became clear that it is NOT about being "good" enough to be saved. No matter how hard I try to do right, act right, be right or be the best Christian in town or the best friend, wife or mother, I will NEVER be perfect. I will never be "better" than Kara or any other person. We are all deserving of a miracle. I am deserving and so was she. But it's not about that. It's not up to me.
Only God can make the final decision, and that decision DOES NOT hinge on how I act. And that one sentence gave me a large amount of peace. It helped lift the cloud that had been hanging over my head since I learned the scans weren't clear. Do I know what my outcome is going to be? No. Do I know if God is going to grant me another miracle? Nope, sure don't. But I DO KNOW that I can stop trying to be "good enough" to be healed. I can stop carrying around the weight of trying to impress Him. He loves me just the way I am. And even if he doesn't get rid of the disease that has set up camp in my lung, it doesn't mean He loves me any less. He has a plan and I have to respect that. And sit back, take a deep breath and see where it leads.
I first came across Kara on Facebook because several other friends were following her page. Then I learned about her book 'The Hardest Peace', which documented how she dealt with her disease and how she relied on her faith to get her through. As hard as it was some days to read, that book became almost my manual for how to cope with my own cancer fight. She was my inspiration for how to live in faith, not just to talk about it. When I wanted to give up, her words reminded me that I was not in this alone - God was simply waiting for me to lean on him.
Several weeks ago, I wrote to Kara to tell her how much she had helped me and to let her know I was praying for her. To my surprise, she wrote back and said she would also be praying for me. I couldn't believe, in her state, that she was still thinking of others. But from what I can tell, that is just the type of person she was. And so started our connection. We emailed back and forth a few more times and each time she sent me encouragement, love and words of faith.
As Kara's days were coming to an end, I found myself checking Facebook daily to see if she had a post. Each time that I didn't find one, I worried that she had passed. As much as I was worrying about her, I was also worried about myself. In the back of my mind, I really thought there would be a miracle and God would cure her. I just couldn't imagine Him taking someone so pure of heart, love, joy, wisdom and faith. And if He did, what would that mean for me? I kept thinking: if He doesn't save her, WHY on earth would He save me?
On Sunday I learned she had made the trip to Heaven and I was in shock. I just couldn't believe it. What happened to her miracle? She was MORE than deserving of it, so why didn't she get it? For the first couple hours of the day, I was scared out of my mind. Just a few days before we found out my radiation hadn't worked and I was already worried about my own future. And now Kara was gone.....I just kept replaying the same thing over and over in my head: if not save her, why me? What chance did I really have for my own miracle?
And then God gave me the answer. Because He hadn't saved her, I had hope. Bear with me here.....If God had cured Kara of her cancer because she was such an amazing Christian and so deserving and loving and caring, then I truly had no chance. I could never live up to her standards - not in a million years. However, for some reason, He allowed the cancer to bring her home to Him. I won't begin to guess why - it is His plan, not mine. But, in this situation, it became clear that it is NOT about being "good" enough to be saved. No matter how hard I try to do right, act right, be right or be the best Christian in town or the best friend, wife or mother, I will NEVER be perfect. I will never be "better" than Kara or any other person. We are all deserving of a miracle. I am deserving and so was she. But it's not about that. It's not up to me.
Only God can make the final decision, and that decision DOES NOT hinge on how I act. And that one sentence gave me a large amount of peace. It helped lift the cloud that had been hanging over my head since I learned the scans weren't clear. Do I know what my outcome is going to be? No. Do I know if God is going to grant me another miracle? Nope, sure don't. But I DO KNOW that I can stop trying to be "good enough" to be healed. I can stop carrying around the weight of trying to impress Him. He loves me just the way I am. And even if he doesn't get rid of the disease that has set up camp in my lung, it doesn't mean He loves me any less. He has a plan and I have to respect that. And sit back, take a deep breath and see where it leads.
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