Hey everybody,
I realize it has been quite awhile since I have posted any updates on my health and all that jazz, so I think it is about time I do that.
Over the months of January and February we have visited both the Cleveland Clinic and UPMC (Univ. of Pitt Medical Center). There is a specialist we are now seeing in Pittsburgh who is a member of a foundation dedicated to the research of the types of tumors that I have. We have been down to Pittsburgh twice and will continue to see doctor down there as he is very intrigued by my case. We also visited the Cleveland Clinic for a second opinion on the possibility of additional surgery.
Here are the recent developments:
1. My health has been on a steady incline over the past month as it seems that the radiation is finally wearing off. No more morning sickness, shaky hands, and constant nerve irritation as well as the welcomed return of my energy and appetite. There are still lingering effects, but nothing near to the degree that it was.
2. As confirmed by each doctor we've seen, surgery is a no go. At this point it is still to risky with the damage that radiation caused and with all the nerve endings down there. But this isn't a big deal to me right now in light of bullet number 1.
3. As of my latest January brain scan, whatever it was that the doctors had been worried about has cleared up... to the point of which my doctor in Pittsburgh called me a "puzzle, in a good way"
4. Due to the above change, he is investigating and researching some other possibilities to try to figure out what has been going on up there in that brain of mine (good luck, lot's of people have been stumped by what goes on up there). <--- Joke
5. Game Plan: Chill and continue to do P/T and head back to Pitt. with some new MRI scans in 3 months.
All of these developments have been incredibly encouraging. While I take them soberly understanding how quickly things can change, I am rejoicing in the partial restoration of health and the much needed energy. Thank you for your support, it has pulled me and my parents through some of the rougher stretches.
*** Also ***
For future reference, no news is good news from my front. I'll be sure to update the blog in the case of any substantial changes, but in the meantime it is my goal to begin blogging fairly regularly about lessons and challenges that God has put on my heart to share with everyone. Blogging is a very effective way for me to process things that I am learning and new ideas or concepts to me. So if your interested, journey over to my other blog! (http://itsmyjoy.blogspot.com) I'd love for you to read some of these thoughts and give feedback through comments if you are able. Feel free to add to my thoughts, bring up other implications or even challenge something because I guarantee that i'm never going to see every angle of an issue.
Thursday, February 10, 2011
Wednesday, January 12, 2011
Clarity in a Complex Puzzle
As some of you know, over the past few weeks I have been to a few more Dr. appointments, but this time outside of Akron. I had one in Pittsburgh a couple of weeks ago and one yesterday at the Cleveland Clinic. I could ramble on and on about all the details about what was said at each appointment and how that compares or contrasts to other opinions and blah blah blah... but i'll spare you, and my fingers. After all, it seems as though my perception and understanding of my health is shifting with every new appt. So here is a summary of our most recent findings according to experts from the Cleveland Clinic and UPMC.
+ The tumor in my brain is not clearly progressing (growing) and there's doubt as to whether it has changed at all.
+ The dotted tumors up my spine aren't currently cause for alarm and aren't clearly progressing either.
+ The tumor in my lower back is presumed to be dying.
+ There could be a link between my tumors and a genetic issue present in extended family members.
+ Surgery on my lower back is still frowned upon and not ideal.
(Remember, All of this could change because both medical centers are still researching my tumor and all it's evil little nuances. Not to mention this is all based on my understanding of what the doctors said, which I mentioned before is always changing and rarely spot on.)
So it seems that suddenly, once again, the tide has changed. Once again it seems as though I can be a part of this process of healing. By eating with wisdom, taking care of my body, and counting on a large portion of God's grace, I'm back in the ring ready to go at it again. But please take this lesson i've learned to heart; Our health and physical well being is not promised to us on this earth and at any moment it could be taken away. While I'm excited at a potential improvement to my health, it's no longer an idol that I worship, and it shouldn't be one for you either. If my health or your health goes south, don't be surprised or angry with God because he promises blessings, but on a much deeper level. Over the next two weeks as the Clinic and UPMC review my case, my pathology and genetic information, everything could easily shift again; for better or worse. Pray for further strengthening of my spirit as my flesh seems to be really indecisive. Pray for the ministry I have through encountering so many doctors and nurses. But most importantly, pray that God would teach you these lessons i've learned through my journey so that you could be freed from idols that you are slaves to. It's liberating to live in a position where you don't count on your own plans for your life. I'm beginning to understand what it means to give to God our whole life, even the things we hold closest to us.
Thank you for your love and support, I really have been blown away by the generosity and support I've received from everyone in my life!
- Patrick
+ The tumor in my brain is not clearly progressing (growing) and there's doubt as to whether it has changed at all.
+ The dotted tumors up my spine aren't currently cause for alarm and aren't clearly progressing either.
+ The tumor in my lower back is presumed to be dying.
+ There could be a link between my tumors and a genetic issue present in extended family members.
+ Surgery on my lower back is still frowned upon and not ideal.
(Remember, All of this could change because both medical centers are still researching my tumor and all it's evil little nuances. Not to mention this is all based on my understanding of what the doctors said, which I mentioned before is always changing and rarely spot on.)
So it seems that suddenly, once again, the tide has changed. Once again it seems as though I can be a part of this process of healing. By eating with wisdom, taking care of my body, and counting on a large portion of God's grace, I'm back in the ring ready to go at it again. But please take this lesson i've learned to heart; Our health and physical well being is not promised to us on this earth and at any moment it could be taken away. While I'm excited at a potential improvement to my health, it's no longer an idol that I worship, and it shouldn't be one for you either. If my health or your health goes south, don't be surprised or angry with God because he promises blessings, but on a much deeper level. Over the next two weeks as the Clinic and UPMC review my case, my pathology and genetic information, everything could easily shift again; for better or worse. Pray for further strengthening of my spirit as my flesh seems to be really indecisive. Pray for the ministry I have through encountering so many doctors and nurses. But most importantly, pray that God would teach you these lessons i've learned through my journey so that you could be freed from idols that you are slaves to. It's liberating to live in a position where you don't count on your own plans for your life. I'm beginning to understand what it means to give to God our whole life, even the things we hold closest to us.
Thank you for your love and support, I really have been blown away by the generosity and support I've received from everyone in my life!
- Patrick
Wednesday, December 29, 2010
Do They Know it's Christmas?
In regards to my adventure on Christmas for those of you that heard of it but not actually what happened...
I knew it was unwise to try and finish my shopping on Christmas Eve, but I really wanted to exchange one of the books I bought for another one. That's reasonable, right? Well apparently not. The crowds weren't bad, the lines not too long and Borders still had what I wanted in stock. Unfortunately my body didn't receive the memo that it was Christmas Eve and it's not allowed to misbehave. While shopping for books I started seeing some stars all over the store which was strange because I didn't recall seeing any stars the last time I was there. The bright stars turned to dizziness, dizziness turned to headache, headache to migraine, and by the time I arrived back home... it was time to turn around and head to the ER.
I know it might seem strange that a migraine is cause for a trip to the ER, but because the of tumor growth/thickening in my brain, there is the risk of complications in my brain and of course headaches and nausea are two of the symptoms. By the time we reached the ER my speech was slurred, left hand numb and I was spaced out. It was definitely scary at the time, but after a long few hours I was admitted and moved up to another floor to spend the night. The CT scans showed no new change in the brain (thank the Lord) and after a good night sleep (aided by some nice drugs) I woke up feeling better. After a morning / afternoon of more testing I was home around 5pm Christmas day! The End.
Later this evening, my parents and I will be heading to Pittsburgh to meet with a Doctor about a clinical trial of some medication that is being developed to treat Ependymomas in a similar fashion to a Chemo drug. We are hopeful that this new method might be effective on my tumors, otherwise we wouldn't be driving down there. I'll probably put a new post up when we get back with an update.
Thank you for your support, it means a lot!
- Patrick
I knew it was unwise to try and finish my shopping on Christmas Eve, but I really wanted to exchange one of the books I bought for another one. That's reasonable, right? Well apparently not. The crowds weren't bad, the lines not too long and Borders still had what I wanted in stock. Unfortunately my body didn't receive the memo that it was Christmas Eve and it's not allowed to misbehave. While shopping for books I started seeing some stars all over the store which was strange because I didn't recall seeing any stars the last time I was there. The bright stars turned to dizziness, dizziness turned to headache, headache to migraine, and by the time I arrived back home... it was time to turn around and head to the ER.
I know it might seem strange that a migraine is cause for a trip to the ER, but because the of tumor growth/thickening in my brain, there is the risk of complications in my brain and of course headaches and nausea are two of the symptoms. By the time we reached the ER my speech was slurred, left hand numb and I was spaced out. It was definitely scary at the time, but after a long few hours I was admitted and moved up to another floor to spend the night. The CT scans showed no new change in the brain (thank the Lord) and after a good night sleep (aided by some nice drugs) I woke up feeling better. After a morning / afternoon of more testing I was home around 5pm Christmas day! The End.
Later this evening, my parents and I will be heading to Pittsburgh to meet with a Doctor about a clinical trial of some medication that is being developed to treat Ependymomas in a similar fashion to a Chemo drug. We are hopeful that this new method might be effective on my tumors, otherwise we wouldn't be driving down there. I'll probably put a new post up when we get back with an update.
Thank you for your support, it means a lot!
- Patrick
Saturday, December 18, 2010
Life... good grief
"Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever."
- Psalm 23:6
One of my favorite songs, written by Jon Foreman, comes from this, the twenty-third psalm. The writer, David, finds comfort in the reality that those who trust in the Lord become members of his "house" and will be followed by goodness and love (mercy) for all the days of their life.
On Wednesday of this week, I received news of another life-altering change in my battle with spinal tumors. After surgery, 6 weeks of radiation therapy and loads of medication over the last 9 months, it turns out that these tumors will not relent. The most recent MRI of my spine and brain has shown an apparent thickening / worsening / growth in some tumors; primarily on the spinal cord. With the conventional treatments exhausted, we have to begin to look outside of Akron.
That wasn't the news I expected, imagined, or desired. It was powerful right hook to the jaw late in a boxing match which I thought I was winning. Suddenly, I found myself dizzy, spinning, and way behind in this match. It seems as if at this point, it's going to take something special, something unconventional or something miraculous to pull me back into the fight.
But, even in this trial, I'll stand up and fight. God never taught me to quit. God never suggested that I complain. God never leaves or checks out. His goodness and love have followed me and will continue to follow me all the days of my life. Our health, our safety, and our comfort were never promised in the physical realm. Just ask Job, Paul or Jesus. God's goodness and love go far deeper than the physical, they're spiritual truths. In the middle of pain, in the middle of suffering, God's promises remain true and we can rejoice in anything. We, as followers of Christ, are members of the house of the Lord, FOREVER... period.
Verse one of this Psalm proclaims that the Lord is our shepherd, and we shall not want. That sounds silly because I absolutely want to be healed from this disease. But the word want goes so much deeper than a superficial want. The reality of belonging to Jesus brings with it the joy of being completely and utterly satisfied in him and his love. No circumstance can change his love for us and our completeness in him. Paul goes as far as to declare in Philippians that he has learned to be content in every situation.
This news is still really hard for me to digest. I want to get physically well again, I don't want a list of medications, I don't want to be tied down by this, but at the end of the day, God still calls me his son. His love for me is cause for joy even in trials, and the opportunity to serve him and make his name great is the only thing worth living for. Our idols of health, safety, prosperity, fame... they'll crash eventually, but praise be to God that he has torn down my idols for me through this experience. I'm empowered to live in complete freedom from those lies that enslaved me with fear, and at every moment in my life I can remember...
..."I will dwell in the house of the Lord forever."
I'd appreciate your prayers and your encouragement in the upcoming weeks / months / years as the human side of me fights to stay positive and close to God.
p.s. for encouragement, you don't need to ask me about me as much as you need to tell me about your lives, your joys and your struggles. Talking about me and my health gets old, but your stories and lives never get old! Hearing what God is doing in lives of others is more encouraging than you'd think.
Love you all,
- Patrick
- Psalm 23:6
One of my favorite songs, written by Jon Foreman, comes from this, the twenty-third psalm. The writer, David, finds comfort in the reality that those who trust in the Lord become members of his "house" and will be followed by goodness and love (mercy) for all the days of their life.
On Wednesday of this week, I received news of another life-altering change in my battle with spinal tumors. After surgery, 6 weeks of radiation therapy and loads of medication over the last 9 months, it turns out that these tumors will not relent. The most recent MRI of my spine and brain has shown an apparent thickening / worsening / growth in some tumors; primarily on the spinal cord. With the conventional treatments exhausted, we have to begin to look outside of Akron.
That wasn't the news I expected, imagined, or desired. It was powerful right hook to the jaw late in a boxing match which I thought I was winning. Suddenly, I found myself dizzy, spinning, and way behind in this match. It seems as if at this point, it's going to take something special, something unconventional or something miraculous to pull me back into the fight.
But, even in this trial, I'll stand up and fight. God never taught me to quit. God never suggested that I complain. God never leaves or checks out. His goodness and love have followed me and will continue to follow me all the days of my life. Our health, our safety, and our comfort were never promised in the physical realm. Just ask Job, Paul or Jesus. God's goodness and love go far deeper than the physical, they're spiritual truths. In the middle of pain, in the middle of suffering, God's promises remain true and we can rejoice in anything. We, as followers of Christ, are members of the house of the Lord, FOREVER... period.
Verse one of this Psalm proclaims that the Lord is our shepherd, and we shall not want. That sounds silly because I absolutely want to be healed from this disease. But the word want goes so much deeper than a superficial want. The reality of belonging to Jesus brings with it the joy of being completely and utterly satisfied in him and his love. No circumstance can change his love for us and our completeness in him. Paul goes as far as to declare in Philippians that he has learned to be content in every situation.
This news is still really hard for me to digest. I want to get physically well again, I don't want a list of medications, I don't want to be tied down by this, but at the end of the day, God still calls me his son. His love for me is cause for joy even in trials, and the opportunity to serve him and make his name great is the only thing worth living for. Our idols of health, safety, prosperity, fame... they'll crash eventually, but praise be to God that he has torn down my idols for me through this experience. I'm empowered to live in complete freedom from those lies that enslaved me with fear, and at every moment in my life I can remember...
..."I will dwell in the house of the Lord forever."
I'd appreciate your prayers and your encouragement in the upcoming weeks / months / years as the human side of me fights to stay positive and close to God.
p.s. for encouragement, you don't need to ask me about me as much as you need to tell me about your lives, your joys and your struggles. Talking about me and my health gets old, but your stories and lives never get old! Hearing what God is doing in lives of others is more encouraging than you'd think.
Love you all,
- Patrick
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