Lately, I fall asleep by 10 am with tight muscles, sore eyes, and a worried mind. When I wake up, I slowly go through the motions, forcing myself to accomplish the tasks of the day and to stay on track. I try not to worry about my dad or check my phone every 2 seconds. I want so badly to type all of my dad's symptoms into google and spend hours doing research and reading articles so that maybe, just maybe, I can figure this out.
In the afternoons, I head to the hospital to visit with dad for a few hours. I am never sure what I will find when I walk in. Today I didn't get there- I worked too late and was too physically exhausted to make it there. Cue guilt.
I know what one of the Sisters of Mercy, Sr. Rochelle, would say to me if I were telling her about my dad.
She would gently ask me "Megan, where is the grace in this situation?".
To some, it may seem impossible to find grace in this situation. And, honestly, sometimes it seems impossible to me, too. I am constantly fighting off tears or anger. But there IS grace.
What IS grace exactly? Grace is a gift from God. I think of it as God's influence or God's steady hand in keeping us strong.
One of the best definitions of Grace is below, from Paul Zahl:
Grace is love that seeks you out when you have nothing to give in return. Grace is love coming at you that has nothing to do with you. Grace is being loved when you are unlovable…. The cliché definition of grace is “unconditional love.” It is a true cliché, for it is a good description of the thing. Let’s go a little further, though. Grace is a love that has nothing to do with you, the beloved. It has everything and only to do with the lover. Grace is irrational in the sense that it has nothing to do with weights and measures. It has nothing to do with my intrinsic qualities or so-called “gifts” (whatever they may be). It reflects a decision on the part of the giver, the one who loves, in relation to the receiver, the one who is loved, that negates any qualifications the receiver may personally hold…. Grace is one-way love.
That first line is the one that hits me most. Because right now, I feel like I have nothing to give. I'm exhausted in all possible forms, including spiritually. I found myself mad at God, even. WHY is this happening and WHY isn't God fixing it? WHY is my dad, one of God's most very special children, suffering? It doesn't seem FAIR and I don't feel like praying about it because I'm too busy being angry.
And yet, God continues to embrace me and show me grace. I feel so incredibly deeply loved by God in these moments, even if I am not talking to Him much. I see the love in other people. I hear it in the words of encouragement. I see it in the gentle ways the nurses and medical staff talk to us or to my dad. I feel it in the hand squeezes. It's there. Some days I have to look harder than others, but it is there. And it is beyond beautiful.
God has also blessed me with the most incredible family in the world. Everyone who hears my story says the same thing- "your family sounds so strong". We are. We're strong, we're close, and we are each others biggest cheerleaders. The genuine love I have for each of my family members is beyond words. When I look at each of them, I am filled with pride. My mom, who is learning her new role as a caregiver, has rocked my world these past few weeks. She has a strength in her that she never knew she had. Somehow she keeps going. Her love for my dad is inspiring and evident in everything that she does. She is teaching me the true meaning of love and marriage. My sister, who is also a mother to a soon to be 2 year old, has balanced Ryan, hospital visits, and a very tough/emotional job. I don't know how she does it, because by the time I get home every night I can barely open my eyes. I admire her strength and flexibility, as well as her patience and wisdom. And then there is my brother, who is dealing with all of this from a different state. He did come in for a few days, but I can't imagine how difficult it must be to be in constant waiting for a phone call or a text with an update. The second my dad is lucid we try to call JP so that he can see it or hear it. JP has managed to make us all laugh amongst this, too.
And we can't forget Dave, who has helped with some of the nitty gritty stuff like mail and bills...and Sara, who has opened our eyes to holistic methods and relaxation techniques. Of course, there is Tom, who has run errands and been an emotional support for my mom and I.
I've learned so much during this hell. I've learned about my OWN strength and abilities. I've learned about the medical world. I've learned the true value of making memories and of holding on tight to your loved ones. I have learned that people like to help, and that if you give them a task, they will do it.
I've learned just how much my dad means to me.
And how desperate I am to have him back.
Thursday, September 25, 2014
Saturday, September 13, 2014
Come back, Dad.
How do you write about the hardest week of your life?
I don't know. I guess you just write.
I want you to imagine the person who you ALWAYS go to when you need help. The person who can make you laugh harder than anyone else. The person who you call your rock. For some of you that may be a parent, a sibling, a significant other, a friend....for me, it's my dad. Now imagine that one day, that person just....well... I don't know how to describe it. Imagine they are physically in front of you, but mentally, they can't talk to you or look at you. They are just....there. But not really there.
It all started last Wednesday. After my dad's weekly doctor appointment, my sister talked with my mom and I about how concerned she was about him. He was expressing some serious confusion. He asked her multiple times why they were there, he couldn't recall that my brother had just been in town, and he couldn't remember that he was supposed to be coming to the Notre Dame game that weekend.
That night, I went over and made dinner for my parents and my mom and I witnessed the confusion, plus repetitive behavior (such as checking the clock, going to the closet and turning on the light and coming back, etc.). We became more and more concerned throughout the night.
The next morning, my dad woke up and said he had a nightmare. He couldn't recall what it was about. The confusion was still present, and he was pacing. We called our doctors, and eventually brought him into the hospital.
And that's where the roller coaster ride really began.
We all assumed that perhaps there was more swelling in his brain from the radiation. So we agreed to increase the steroids. But we saw no improvement. We had to wait three painful days for an MRI....and those days, plus the ones to come, were absolutely terrible. We would get moments of lucidity, where he would know who we were and why he was in there. But we would quickly lose him again, and he would be confused....or repeating what we were saying...or the WORST, he would go into an unresponsive state where we wouldn't get any eye contact. Those were the most painful moments.
It was as if we had lost him. Although he was there physically, he was mentally gone.
We began the test, trying to find the cause of this. MRI? Clear. Swelling was done (almost gone, actually). No new tumors...no tumor growth. That's GREAT, but still leaves us in the unknown.
EEG? Clear. No seizure activity. Which was a bit troubling only because my mom and I personally witnessed at least two seizures prior to the EEG.
Spinal tap test? Clear. No cancer in the spinal fluid. That was my biggest fear, because that type of cancer is very difficult to treat.
So that leaves us back to square one. What is happening?
We HAVE noticed that as he has weened off the steroids, we see SLIGHT improvements. And I do mean slight. Like, today my mom and I had an hour or so of lucidity with him. He was still somewhat confused, but he at least knew who we were, he looked us in the eye, he cried, he told us how scary this has been. Another sign of improvement is that he ate lunch today, and he hasn't eaten in three or four days. Another sign was that even though he wasn't quite as lucid at one point, he did look at my sister and said "how are you, Mo?". HUGE difference from his either catatonic or repetitive phases when he wouldn't look at us.
But we still don't know what the root cause of all this could be. There are theories of steroid psychosis, psychological issues, etc...but we don't have a firm answer. And that, my friends, is terrifying.
Each day has been an adventure. We are never sure what we will see when we walk in the hospital room. Will he look at us? Will he just repeat what we say, or will he come up with his own sentences? Will he have a seizure? Will he talk at all? It's always a surprise. And it's always hard. Especially in those small moments where we have the lucidity, and then we quickly lose it again. We have hope, and then that hope is very quickly replaced with fear.
So many people have asked us how we are holding up. I can't even answer that. When I'm at the hospital, I'm either working (my job has allowed me to work remotely) and trying to pull my dad back out of this state or crying or asking questions or hugging my mom . When I am at home I am feeling guilty for not being there, anxious about what could be happening at that very moment that we are missing. I have turned to Google, which is super dangerous. But I can't help it. I want to know what this is, and I want my Daddy back.
This week has been, without a doubt, the worst week of my life. We have gone through every stage of grief- not because he has died, because I firmly believe whatever THIS is is not going to kill him, but because we keep "losing" him mentally. I have cried more than I ever have in my life. I have punched walls, kicked chairs, hugged more people than ever before.
When my dad was first diagnosed with cancer, it was scary- but he was still here mentally. In fact, he held all of us together. He was the strong one. He made jokes, he was ready to fight, he was the same dad I've always known. This, though, this is so much different. This is hell.
I cannot express how grateful I am for the incredible support, prayers, and love that has surrounded myself, my mom, my sister and my brother this week. We appreciate it more than you will ever know. Some of our dear old friends, along with the St. Hugo Community, have embraced us and delivered meals, cards, and have said many, many prayers.
Next week I have to get back to work. I pushed all my meetings last week to next week, hoping this would all be over. I can't reschedule them again- I have to just power through it as best I can without feeling guilty. But damn, will I be praying and hoping for a change.
Our biggest fear is that he will stay like this forever. I can't let that happen. My dad is only 60 years old.....and he is one of God's most special children with his gentleness, kindness, and genuine concern for others. It's not time for him to shut down yet. He's got a lot of people to meet and to inspire. We need him to keep going, just the way we know how. We need him to come back fighting.
I just want my dad back.
I don't know. I guess you just write.
I want you to imagine the person who you ALWAYS go to when you need help. The person who can make you laugh harder than anyone else. The person who you call your rock. For some of you that may be a parent, a sibling, a significant other, a friend....for me, it's my dad. Now imagine that one day, that person just....well... I don't know how to describe it. Imagine they are physically in front of you, but mentally, they can't talk to you or look at you. They are just....there. But not really there.
It all started last Wednesday. After my dad's weekly doctor appointment, my sister talked with my mom and I about how concerned she was about him. He was expressing some serious confusion. He asked her multiple times why they were there, he couldn't recall that my brother had just been in town, and he couldn't remember that he was supposed to be coming to the Notre Dame game that weekend.
That night, I went over and made dinner for my parents and my mom and I witnessed the confusion, plus repetitive behavior (such as checking the clock, going to the closet and turning on the light and coming back, etc.). We became more and more concerned throughout the night.
The next morning, my dad woke up and said he had a nightmare. He couldn't recall what it was about. The confusion was still present, and he was pacing. We called our doctors, and eventually brought him into the hospital.
And that's where the roller coaster ride really began.
We all assumed that perhaps there was more swelling in his brain from the radiation. So we agreed to increase the steroids. But we saw no improvement. We had to wait three painful days for an MRI....and those days, plus the ones to come, were absolutely terrible. We would get moments of lucidity, where he would know who we were and why he was in there. But we would quickly lose him again, and he would be confused....or repeating what we were saying...or the WORST, he would go into an unresponsive state where we wouldn't get any eye contact. Those were the most painful moments.
It was as if we had lost him. Although he was there physically, he was mentally gone.
We began the test, trying to find the cause of this. MRI? Clear. Swelling was done (almost gone, actually). No new tumors...no tumor growth. That's GREAT, but still leaves us in the unknown.
EEG? Clear. No seizure activity. Which was a bit troubling only because my mom and I personally witnessed at least two seizures prior to the EEG.
Spinal tap test? Clear. No cancer in the spinal fluid. That was my biggest fear, because that type of cancer is very difficult to treat.
So that leaves us back to square one. What is happening?
We HAVE noticed that as he has weened off the steroids, we see SLIGHT improvements. And I do mean slight. Like, today my mom and I had an hour or so of lucidity with him. He was still somewhat confused, but he at least knew who we were, he looked us in the eye, he cried, he told us how scary this has been. Another sign of improvement is that he ate lunch today, and he hasn't eaten in three or four days. Another sign was that even though he wasn't quite as lucid at one point, he did look at my sister and said "how are you, Mo?". HUGE difference from his either catatonic or repetitive phases when he wouldn't look at us.
But we still don't know what the root cause of all this could be. There are theories of steroid psychosis, psychological issues, etc...but we don't have a firm answer. And that, my friends, is terrifying.
Each day has been an adventure. We are never sure what we will see when we walk in the hospital room. Will he look at us? Will he just repeat what we say, or will he come up with his own sentences? Will he have a seizure? Will he talk at all? It's always a surprise. And it's always hard. Especially in those small moments where we have the lucidity, and then we quickly lose it again. We have hope, and then that hope is very quickly replaced with fear.
So many people have asked us how we are holding up. I can't even answer that. When I'm at the hospital, I'm either working (my job has allowed me to work remotely) and trying to pull my dad back out of this state or crying or asking questions or hugging my mom . When I am at home I am feeling guilty for not being there, anxious about what could be happening at that very moment that we are missing. I have turned to Google, which is super dangerous. But I can't help it. I want to know what this is, and I want my Daddy back.
This week has been, without a doubt, the worst week of my life. We have gone through every stage of grief- not because he has died, because I firmly believe whatever THIS is is not going to kill him, but because we keep "losing" him mentally. I have cried more than I ever have in my life. I have punched walls, kicked chairs, hugged more people than ever before.
When my dad was first diagnosed with cancer, it was scary- but he was still here mentally. In fact, he held all of us together. He was the strong one. He made jokes, he was ready to fight, he was the same dad I've always known. This, though, this is so much different. This is hell.
I cannot express how grateful I am for the incredible support, prayers, and love that has surrounded myself, my mom, my sister and my brother this week. We appreciate it more than you will ever know. Some of our dear old friends, along with the St. Hugo Community, have embraced us and delivered meals, cards, and have said many, many prayers.
Next week I have to get back to work. I pushed all my meetings last week to next week, hoping this would all be over. I can't reschedule them again- I have to just power through it as best I can without feeling guilty. But damn, will I be praying and hoping for a change.
Our biggest fear is that he will stay like this forever. I can't let that happen. My dad is only 60 years old.....and he is one of God's most special children with his gentleness, kindness, and genuine concern for others. It's not time for him to shut down yet. He's got a lot of people to meet and to inspire. We need him to keep going, just the way we know how. We need him to come back fighting.
I just want my dad back.
Wednesday, September 3, 2014
Weight Loss Wednesday: Does It Get Easier?
My brother and sister in law came into town this past weekend. It was a total surprise. I had planned for a quiet, lazy weekend but instead quickly became busy with meals, outings, and LOTS of laughter.
Over dinner on Sunday evening, Sara asked me a few questions about my weight loss. Most of her questions were pretty easy. I am used to telling people about my eating plans and workout routines. But her toughest question was this
"Does it get any easier?".
I thought about it, sighed, and then told her the truth.
No.
Sorry to burst your bubbles. Please don't let that stop you. But, it just doesn't magically become easier. I still have to force myself to go to the gym. I still have to count every calorie.
In some ways, it's almost gotten harder. I have become a little more lenient, which could break me if I am not careful. I will think things like "dude, I've lost 80 lbs... I can eat this whole pie...". But no, I can't. I have to keep going. Because if I take one day off, I'll start to take 2 days off. And then 3. And then I will just stop all together. So I can't do that.
Today I had to go out for lunch. I got my usual low calorie, low carb sandwich from Potbelly. But then I decided I REALLY wanted macaroni salad as a side. I didn't look up the calories before I corded it. But I should have. 415 calories for a tiny little plastic container of Macaroni Salad. Plus, too many grams of fat. Oops.
It was a mistake, and I can't let it bring me down or to ruin the rest of my day. I will do a hard workout tonight, eat a healthy dinner, and do better tomorrow.
My crazy work schedule has slowed down a little- it's still crazy and there is a lot to do before October, but I am mostly in the office or working from home...which gives me the ability back to set my schedules, plan my meals, and cook at home. That's a huge relief.
I can't be too hard on myself when I slip, but I also can't let myself make excuses and continue to slip. I still have a ways to go. I am still overweight. I am about 60 lbs to go until I hit my goal weight. This isn't over, folks!
I did step on the scale Tuesday morning and I am .2 lbs away from reaching 80. So we'll just say 80 :) I seemed to have dropped 1-2 lbs each week for the past couple weeks, and I am sort of just waiting for a plateau to hit again. But in the mean time I will keep working!
Over dinner on Sunday evening, Sara asked me a few questions about my weight loss. Most of her questions were pretty easy. I am used to telling people about my eating plans and workout routines. But her toughest question was this
"Does it get any easier?".
I thought about it, sighed, and then told her the truth.
No.
Sorry to burst your bubbles. Please don't let that stop you. But, it just doesn't magically become easier. I still have to force myself to go to the gym. I still have to count every calorie.
In some ways, it's almost gotten harder. I have become a little more lenient, which could break me if I am not careful. I will think things like "dude, I've lost 80 lbs... I can eat this whole pie...". But no, I can't. I have to keep going. Because if I take one day off, I'll start to take 2 days off. And then 3. And then I will just stop all together. So I can't do that.
Today I had to go out for lunch. I got my usual low calorie, low carb sandwich from Potbelly. But then I decided I REALLY wanted macaroni salad as a side. I didn't look up the calories before I corded it. But I should have. 415 calories for a tiny little plastic container of Macaroni Salad. Plus, too many grams of fat. Oops.
It was a mistake, and I can't let it bring me down or to ruin the rest of my day. I will do a hard workout tonight, eat a healthy dinner, and do better tomorrow.
My crazy work schedule has slowed down a little- it's still crazy and there is a lot to do before October, but I am mostly in the office or working from home...which gives me the ability back to set my schedules, plan my meals, and cook at home. That's a huge relief.
I can't be too hard on myself when I slip, but I also can't let myself make excuses and continue to slip. I still have a ways to go. I am still overweight. I am about 60 lbs to go until I hit my goal weight. This isn't over, folks!
I did step on the scale Tuesday morning and I am .2 lbs away from reaching 80. So we'll just say 80 :) I seemed to have dropped 1-2 lbs each week for the past couple weeks, and I am sort of just waiting for a plateau to hit again. But in the mean time I will keep working!
Tuesday, September 2, 2014
Be a solider
People suffering from depression are easy to give up on.
Their disease starts to drift them away. They are distant, they avoid social situations. They are practically paralyzed, living their life in closed doors. It's near impossible to get them to speak or to hold a "normal" conversation. They withdraw. And so, you begin to withdraw from them. Maybe you assume that they "need space".. Or maybe you think that they are just being "selfish" or "acting weird", so you're just gonna take a step back and let them figure it out on their own.
Don't do that.
Even if they don't admit it, a depressed person needs you. You don't have to follow them around or constantly ask if they are "okay" (most depressed people don't really know how to answer that question. They are niether okay or not okay. They are just numb). But what they do need is to know you care, and to know that you are still there. They want you to recognize their sadness... To be empathetic. Don't ignore what is happening but don't celebrate it either. Just be there. Make offers, knowing that if they decline it is not a personal attack... They simply aren't up to it. Make sure they eat.... Fix them a cup of tea. Tuck them in. Send them an encouraging song. Suggest that they seek help. If they are seeking help, ask how it's going. Just be there.
I know in these situations we sometimes feel helpless. I also know it's easier to ignore it, to walk away. But you have to fight. The person you love is still in there, behind the sad eyes. Look deep and embrace them for who they are and what they are going through. If you make it clear that you are standing next to them through this battle, I guarantee it will give them a glimmer of hope.
I am not an expert and I don't claim to be. But I was once in the battlefield. A few of my fellow comrads walked away and left me, they thought I was weak and couldn't understand why it was so hard for me to trudge on. They were wrong. I know this because I won the battle, with a few very strong and loyal soldiers by my side. Those soldiers carried me when I fell, pushed me when I needed it, and cheered for victory when I won.
Be a solider.
Monday, September 1, 2014
Stand Together.
If you didn't already know this, September is both Childhood Cancer Awareness Month and Suicide Prevention Awareness Month. In other words, September is an IMPORTANT month. Here's why:
Childhood Cancer Facts
From The American Cancer Society:
Childhood Cancer Facts
From The American Cancer Society:
- About 10,450 children in the United States under the age of 15 will be diagnosed with cancer in 2014.
- .Cancer is the second leading cause of death in children (after accidents
- The most common forms of cancer in children are:
- Leukemia
- Brain and other central nervous system tumors
- Neuroblastoma
- Wilms tumor
- Lymphoma (including both Hodgkin and non-Hodgkin)
- Rhabdomyosarcoma
- Retinoblastoma
- Bone cancer (including osteosarcoma and Ewing sarcoma)
- Less than 5% of the federal government’s total funding for cancer research is dedicated to childhood cancers each year.
Suicide Facts
From SAVE
- Suicide takes the lives of nearly 40,000 Americans every year.
- For young people 15-24 years old, suicide is the second leading cause of death.
- Suicide is the 10th leading cause of death in the U.S.
- Suicide can be prevented through education and public awareness.
But there is something you REALLY need to know about both childhood cancer AND suicide: WE CAN DO SOMETHING. I get it. We aren't all millionaires, and we don't have loads of time on our side. But we have a heart. We have (or most of us do) the ability to type and to write. We can spread awareness. We can make a small difference. We can let people know that we will fight.
I am going to dedicate my September to these two causes. It won't be every day, and it won't be anything huge...sometimes it will be as simple as posting a link to a related organization. But I figure, I can at least do SOMETHING to show my support. One thing I plan on doing is to donate toys to my local Ronald McDonald house....I also am going to participate in the Metro Detroit Out of the Darkness Walk.
There are so many ways for you to get involved. Stand up with me. If you need ideas, talk to me. My mind is buzzing. I will be posting updates on my social media accounts of what I am doing....not to brag, not to boast or to convince you all that I'm this great person- rather, I will be posting to spread the love, spread the awareness. None of us can end childhood cancer or suicide alone. We must do it together.
So let's do it.
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