...says Doc Holiday in the epic Tombstone. I will shake your hand, but don't be offended when I break out the pocket sized hand sanitizer and apply. It's not you, it's me! I am now a germophobe.
It starts simple enough with bottles of hand sanitizer at every sink, plus several strategically placed throughout the house. One in each car, plus the aforementioned pocket bottles that travel with me. But it doesn't stop there. I've have said goodbye to buffets, potlucks, communal bowls of candy, and the box of donuts in the break room. Every door handle, faucet tap, table top, or chair arm poses unseen danger. The next time I take communion in church I will bring my own unleavened bread and flask of wine...er, grape juice. The tough one is shaking hands, because I really like that. So when I bathe my hands up to my wrists in 62% ethyl alcohol with aloe, don't take it personal.
Obviously, I have reason to be cautious as my immunity is rebuilt over the next two years. I will receive childhood immunizations all over again starting next July (one year after transplant) and then follow up shots throughout the the year up until two years out. As for my exposure to illnesses like the common cold, I need to go through the process of getting sick and allowing my body to build it's own defense, just like an infant would. That is why I will be able to return to work at the end of this month. I HAVE to allow myself to be sick so that I can be healthy. I only pray that any sickness I do experience in this next year will be mild and forgiving, allowing me to build my immune system but not wipe me out completely or worse, put my overall health at risk.
Post transplant life is good, freeing, liberating. I am no longer bound by blood counts or the lack there of. All numbers are higher than they have been in years and steadily increasing, but we are training ourselves not to watch them like a sports ticker. What we are watching is my kidneys and liver to make sure they are tolerating the meds and showing no signs of Graft vs. Host Disease or GVH. Another interesting precaution is sunlight. A sunburn can trigger severe GVH for the rest of my life, so come summer time I'll be the guy in the wide brimmed hat, wearing SPF 50, drinking beer under the umbrella at the beach. I suppose I live in the right part of the country to protect myself from sunlight.
With constant improvement and recovery, I am finally returning to work healthy for the first time in a year. Tomorrow I will be walking into Shuksan Middle School preparing to face the reality of spending my days with pre-teens. Fortunately, it is a staff work day tomorrow so I get to ease into my classroom and the school before students arrive. Shuksan Staff, I can't wait to see you guys again.
With my new found vigor, I have been training again. Training for what, I'm not sure yet but I'm pretty competitive so I'm sure I'll have to kick someone's ass at something down the road. On my training route the other day, I realized that in-spite of saying that I am thankful to God for my health, I hadn't actually told Him, "Thank You!" So in a brief moment of solitude on a path-side bench at Northridge Park in a cathedral of trees, I thanked Him. I praised Him for His greatness and His orchestration of the plan for my life. I praised Him for creation and that the beauty of the forest pales in comparison to His handiwork in us. I prayed that my new lease on life would be a testimony to His power, His grace, and His love for us. Amen
Friday, October 21, 2011
Sunday, August 14, 2011
I usually don't take bone marrow, but when I do I prefer "Dos Equis."
The most triumphant moment in sports is the come-from-behind win. At a point in a contest when the scoreboard and the clock are as much an enemy as the opposing team, that is when a competitor makes a choice. It begins in the brain where in spite of the odds, the choice is made to fight no matter what the outcome yet never forgetting that victory is always the goal. The fighter mentally then transforms him or herself physically to where the body responds to the brain with almost subconscious accuracy and ability. At this point, the mind considers injury and exhaustion mere speed bumps as the body performs at almost superhuman capacity.
Sometimes the effort falls short. The rally caps are flipped over, the wide receiver crumbles in the end zone after feeling the football scrape the tips of his fingers, or the wrestler falls mid-scramble as time expires. Even in a loss, the fight is remembered and is memorialized among it's witnesses.
Then there are the victories. These are remembered by all, and quite often heroes are born from such stories.
In order to come from behind, there has to be deficit. There has to be insurmountable odds. Only by a missed shot can there be a rebound and a put back. Only through a lopsided scoreboard can there be a come-from-behind win. Only through the breakup of a great band can they reunite. Only through sickness can there be healing. Only through death can there be resurrection.
I think once again of our friends Rob and Bree-Ann whose young daughter Reese is undergoing chemo to clean up after a brain tumor that was surgically removed. Talk about being in the trenches. Of course I can make no guarantee, but in 10 years or so I see a beautiful young girl and her family with a come-from-behind story that brings indescribable faith and joy.
Ten years ago, I could have never imagined how my own odds would shape me. Three out four quarters were mild battles, fought methodically with each team claiming narrow leads on the scoreboard. Then in the fourth quarter, the opposing team struck with a vengeance and nearly claimed victory. But the game was not over, and the good guys brought out their secret weapon (Bone Marrow Transplant) in the fourth quarter.
And so here we are in the fourth quarter (at least of this game), and everyday we feel a little closer to just downing the ball and running off the field as we watch the last few seconds tick off the clock. My doctor here in Baltimore is confident that my previous conditions, Aplastic Anemia and PNH, are history and that I am now quite simply a Bone Marrow transplant patient. I am still taking some meds for a year or so but already, at day 44 post transplant, my blood counts are higher than they have been in years with all counts steadily increasing.
My sister has every right to be proud of herself for her bone marrow absolutely kicking butt in my body. Incidentally, here is an interesting fact about Bone Marrow donation. Since the donor is female, the chromosomes in my blood are now XX instead of XY. One of the doctors jokingly said I could commit a crime, leave blood at the scene, and blame Kari. I suppose I should start drinking Dos Equis beer and become "the most interesting man in the world."
My own come-from-behind story is still being written, and I would be cheating my creator if I did not give him thanks and praise for the miracle at work in me. I just hope the miracle does not end with the restoration of my body, but continues with the daily renewal of my faith and the faith of those around me.
Sometimes the effort falls short. The rally caps are flipped over, the wide receiver crumbles in the end zone after feeling the football scrape the tips of his fingers, or the wrestler falls mid-scramble as time expires. Even in a loss, the fight is remembered and is memorialized among it's witnesses.
Then there are the victories. These are remembered by all, and quite often heroes are born from such stories.
In order to come from behind, there has to be deficit. There has to be insurmountable odds. Only by a missed shot can there be a rebound and a put back. Only through a lopsided scoreboard can there be a come-from-behind win. Only through the breakup of a great band can they reunite. Only through sickness can there be healing. Only through death can there be resurrection.
I think once again of our friends Rob and Bree-Ann whose young daughter Reese is undergoing chemo to clean up after a brain tumor that was surgically removed. Talk about being in the trenches. Of course I can make no guarantee, but in 10 years or so I see a beautiful young girl and her family with a come-from-behind story that brings indescribable faith and joy.
Ten years ago, I could have never imagined how my own odds would shape me. Three out four quarters were mild battles, fought methodically with each team claiming narrow leads on the scoreboard. Then in the fourth quarter, the opposing team struck with a vengeance and nearly claimed victory. But the game was not over, and the good guys brought out their secret weapon (Bone Marrow Transplant) in the fourth quarter.
And so here we are in the fourth quarter (at least of this game), and everyday we feel a little closer to just downing the ball and running off the field as we watch the last few seconds tick off the clock. My doctor here in Baltimore is confident that my previous conditions, Aplastic Anemia and PNH, are history and that I am now quite simply a Bone Marrow transplant patient. I am still taking some meds for a year or so but already, at day 44 post transplant, my blood counts are higher than they have been in years with all counts steadily increasing.
My sister has every right to be proud of herself for her bone marrow absolutely kicking butt in my body. Incidentally, here is an interesting fact about Bone Marrow donation. Since the donor is female, the chromosomes in my blood are now XX instead of XY. One of the doctors jokingly said I could commit a crime, leave blood at the scene, and blame Kari. I suppose I should start drinking Dos Equis beer and become "the most interesting man in the world."
My own come-from-behind story is still being written, and I would be cheating my creator if I did not give him thanks and praise for the miracle at work in me. I just hope the miracle does not end with the restoration of my body, but continues with the daily renewal of my faith and the faith of those around me.
Monday, July 25, 2011
Moving Out
So, here's the thing about bone marrow transplants. They are BOOOOOORIIIIING! The word "transplant" conjures all sorts of images of doctors clearing the halls, knocking over trays of hospital food to get the precious marrow from the donor to the recipient in time. It couldn't be further from the truth. It's just a big red bag that hangs on the IV pole and drips away. The most exciting part of the day is the number of times the nurses check vitals looking for any reaction to the marrow.
The good news is that my stay here in Unit 5B of the Weinburg building has been boring from the beginning. The nurses like to say here, "Boring is good," which means no surprises, no complications, no major concerns and that has largely been the case. I battled a fever just a few days after the transplant that cooled quickly with aggressive antibiotics, but that has really been the only bump on a very smooth road. Even the effects of the chemo have been very tolerable with the worst behind me.
The next major step is seeing blood counts start to recover and that may not happen for at least another week. I haves lived with low counts for so long that I don't feel an empty tank, but I am no less excited about seeing blood counts start to come up. Once the counts start to appear, it will be easy to tell if it is the new marrow that is working and not my own trying to bounce back. Because my own marrow produced abnormal red cells, the new marrow will produce healthy blood cells which they can easily test for.
Now boring may be good for the transplant, but it's driving me nuts. Sure I'm reading, watching movies, taking naps, doing what I can to let time go by, but checking out and coming in as an outpatient is sounding better and better all the time. The good news is that barring any surprises, I will be checking out this coming Sunday to start the next phase of the recovery process. I'll stay in campus housing and come in just during the day for treatments. It doesn't sound very different, but getting out of this unit having a little more independence will make a huge difference for me.
I do need to recognize Kari, my sister, in this whole process. She was a trooper and in spite of her anxiety before, her exhaustion the day of, and her soreness during recovery, she gave cheerfully and willingly. Thanks to Lach who marched her around DC just a few days after the procedure, she recovered quickly (the doctors told her it is good for her to be up and moving). I love my sister, and I will never forget what she went through for me.
The waiting game continues, and prayers for continued patience are appreciated. Obviously we are praying that counts start to come up and that I can remain relatively free of complications, but waiting sometimes is harder than anything else.
The good news is that my stay here in Unit 5B of the Weinburg building has been boring from the beginning. The nurses like to say here, "Boring is good," which means no surprises, no complications, no major concerns and that has largely been the case. I battled a fever just a few days after the transplant that cooled quickly with aggressive antibiotics, but that has really been the only bump on a very smooth road. Even the effects of the chemo have been very tolerable with the worst behind me.
The next major step is seeing blood counts start to recover and that may not happen for at least another week. I haves lived with low counts for so long that I don't feel an empty tank, but I am no less excited about seeing blood counts start to come up. Once the counts start to appear, it will be easy to tell if it is the new marrow that is working and not my own trying to bounce back. Because my own marrow produced abnormal red cells, the new marrow will produce healthy blood cells which they can easily test for.
Now boring may be good for the transplant, but it's driving me nuts. Sure I'm reading, watching movies, taking naps, doing what I can to let time go by, but checking out and coming in as an outpatient is sounding better and better all the time. The good news is that barring any surprises, I will be checking out this coming Sunday to start the next phase of the recovery process. I'll stay in campus housing and come in just during the day for treatments. It doesn't sound very different, but getting out of this unit having a little more independence will make a huge difference for me.
I do need to recognize Kari, my sister, in this whole process. She was a trooper and in spite of her anxiety before, her exhaustion the day of, and her soreness during recovery, she gave cheerfully and willingly. Thanks to Lach who marched her around DC just a few days after the procedure, she recovered quickly (the doctors told her it is good for her to be up and moving). I love my sister, and I will never forget what she went through for me.
The waiting game continues, and prayers for continued patience are appreciated. Obviously we are praying that counts start to come up and that I can remain relatively free of complications, but waiting sometimes is harder than anything else.
Friday, July 8, 2011
Grace, Love, and Warm Cookies
Every once in a while, God throws us something special. It feels less like a divine moment and more like getting a full size candy bar while trick-or-treating or catching a free t-shirt that's been shot from a cannon at a college football game. He reveals to us exactly how and who he uses to answer our prayers. The prayer and the answer is between Him and me, but the message is universal. Our hope and our faith are justified in an instant when secret Santa stands up at the Christmas party and says, "It was me, I hope you like it...it had 'you' written all over it!"
It does confirm my faith in the Almighty, but that may not be God's only purpose. What God says to me here is that he loves me and he wants me to be happy. God is in no way proving himself to me. Instead, he is sending me a care package from heaven and the cookies are still warm. Like a father longing to embrace his son from far away, He just wanted to show me how much he cares for me.
So far this process has been uneventful and verging on boring...at least for me. "Boring," my nurse said, "is a good thing around here." I am tolerating the chemo well, although I am only two doses in and expecting my third this evening. It is amazing to me how such a little bag that takes only an hour to run can turn people upside down, physically and psychologically. So far, nothing has been as bad as I have anticipated. Whether that continues remains to be seen.
One of the positive turns in this process is that I may be released from inpatient to outpatient status much sooner than originally thought. That means I would live across the street in hospital outpatient housing and come in for daily treatments. Things need to continue to go as well as they have so far, but it is a possibility none the less.
"The Donor" is en route via road trip in a hippie hybrid car (just kidding Lach, I love that car) and should be in town Monday. According to the hospital staff, I'm being born again...again. They refer to transplant day as my new birthday. July 12 is easy for me, just another bag dripping from my IV pole but my sister has a rough go. She'll be under anesthesia, but recovery can be a little uncomfortable.
I can't sign off without thanking everyone for your prayers and support. Through all of you, God has revealed to me new measures of His love. I only hope each of you can experience the same Grace, Love, and warm cookies that God has shown me.
It does confirm my faith in the Almighty, but that may not be God's only purpose. What God says to me here is that he loves me and he wants me to be happy. God is in no way proving himself to me. Instead, he is sending me a care package from heaven and the cookies are still warm. Like a father longing to embrace his son from far away, He just wanted to show me how much he cares for me.
So far this process has been uneventful and verging on boring...at least for me. "Boring," my nurse said, "is a good thing around here." I am tolerating the chemo well, although I am only two doses in and expecting my third this evening. It is amazing to me how such a little bag that takes only an hour to run can turn people upside down, physically and psychologically. So far, nothing has been as bad as I have anticipated. Whether that continues remains to be seen.
One of the positive turns in this process is that I may be released from inpatient to outpatient status much sooner than originally thought. That means I would live across the street in hospital outpatient housing and come in for daily treatments. Things need to continue to go as well as they have so far, but it is a possibility none the less.
"The Donor" is en route via road trip in a hippie hybrid car (just kidding Lach, I love that car) and should be in town Monday. According to the hospital staff, I'm being born again...again. They refer to transplant day as my new birthday. July 12 is easy for me, just another bag dripping from my IV pole but my sister has a rough go. She'll be under anesthesia, but recovery can be a little uncomfortable.
I can't sign off without thanking everyone for your prayers and support. Through all of you, God has revealed to me new measures of His love. I only hope each of you can experience the same Grace, Love, and warm cookies that God has shown me.
Thursday, June 30, 2011
For Reese and the Gilfillans
I am not sure how to start this post. I desperately want to lift baby Reese and the Gilfillans in prayer and I suppose our prayers should be enough. We talk to the Almighty directly and he answers us. He has been faithful to me and my family, answering our prayers daily and even providing for unforeseen needs. However, here is baby Reese whose trials this past week seem insurmountable and Rob and Bre Ann whose uncertainty must feel torturous. As a father, it is hard for me to imagine a second of peace amidst that storm. It makes it hard to pray for something for which I lack faith of possibility. I believe that God can heal Reese, but I cannot imagine what the family is experiencing.
Lord give me the faith to believe you can do ALL things!
Another thing I feel is a sense of helplessness, knowing that only God can wrap his arms around that baby her family. It feels much like my own inability to heal myself, but seeing others suffer is much more difficult and has me faced with the human urge to "do" something. Maybe it's the masculine "fit it" mentality that has my stomach in knots. There is NOTHING I can do but pray, and it is hard when my lack of faith make God feel so far away.
Lord give me the discipline to pray for Reese and her family, even when my faith is weak. Heal her body. Give her parents inexplicable peace and rest, and let the world know you are God through the accomplishment of your will.
Praying for Reese
Lord give me the faith to believe you can do ALL things!
Another thing I feel is a sense of helplessness, knowing that only God can wrap his arms around that baby her family. It feels much like my own inability to heal myself, but seeing others suffer is much more difficult and has me faced with the human urge to "do" something. Maybe it's the masculine "fit it" mentality that has my stomach in knots. There is NOTHING I can do but pray, and it is hard when my lack of faith make God feel so far away.
Lord give me the discipline to pray for Reese and her family, even when my faith is weak. Heal her body. Give her parents inexplicable peace and rest, and let the world know you are God through the accomplishment of your will.
Praying for Reese
Sunday, June 26, 2011
So far our time in Maryland has been relatively uneventful. This has mostly been a week of adjustments. The first and most significant piece of our new life is learning about the medical center at Johns Hopkins.
I flew solo on day one and began a series of scans and functions tests that determined my preparedness to handle the transplant process. Day two was much of the same but the family came along this time. A break during the days events allowed us to eat lunch at and tour Baltimore's inner harbor. The day finished for me with the ever popular bone marrow biopsy and we managed to beat the afternoon traffic on I-95 north.
In between scheduled appointments and various medical buildings in the hospital, I was able to familiarize myself with the campus and even start to feel comfortable there. The Weinberg building is an all in one cancer care center. Although I am blessed to not have cancer, my treatment falls under their realm of expertise, so the Weinberg it is. After an educational class Kelly and I attended on transplants, we actually were able to tour the floor where I'll be staying during the first 3-4 weeks of the process. I have to say it was pretty nice. It's definitely a hospital room, but built with comforts and amenities like a TV/DVD player, a dresser, a recliner, etc. Because of the risk of infection with transplant patients, the entrance to the room is like an airlock. You walk through two separate doors with a sink in between, insuring all those that enter and leave are washing every time. I may not be quite as excited about it after the novelty has worn off, but it was cool none the less.
So many of you have been asking about timelines, and we wanted to be sure of the schedule ourselves before releasing dates. I will be admitted to the hospital on Tuesday July 5 when I will start what will be 6 consecutive days of high dose chemotherapy. The chemo is intended to wipe clean the slate of my own bone marrow which doesn't work right anyway. Of course, most are familiar with the side effects of chemo and the joy ride that can be. On the seventh day I get to rest (sound familiar) and Tuesday July 12 is "Day Zero" or transplant day.
That brings us to the donor. My sister Kari is actually in Maryland for the weekend to do some testing of her own at Hopkins on Monday and Tuesday. She'll fly back to Houston Wednesday and not return until the day before transplant day. Although she will be under general anesthesia for the harvest, her procedure is outpatient and she be out of there the same day, although a little uncomfortable. The transplant team will harvest about 1.5 liters of bone marrow, filter it down to pure stem cells, and the drip it from a bag into my IV. The actual transplant is pretty uneventful for me, although Kari will have a big day.
Following the transplant they give me another two days of chemo, this time to prevent Kari's immune system in the stem cells from rejecting the graft which is the basis of graft vs. host disease. Then it is a waiting game, waiting for those stem cells from that little bag to take root and start cranking. With daily blood draws and constant monitoring, we may see progress within a few days, but it takes weeks to even consider leaving the room. When the white blood cells start to show up and my body has a fighting chance of defending itself outside a hospital room, I can move into an outpatient apartment on the hospital campus and just come in for daily treatment. That can go on for weeks as well, all depending on how quickly my body recovers.
Call it ignorance or naivety, but I grow increasingly more comfortable with the weeks and months ahead. I guess since arriving, and even in the days and weeks approaching our departure, God's hand in this adventure has been more and more evident by the day, providing for every need whether emotional, financial, and otherwise. I even feel a weird bubble of protection from getting sick as both girls have thrown up since leaving Bellingham. Once again, our confidence and faith in this process is confirmed daily and as this next week passes I hope for more of the same. The nerves will build but that keeps us sharp, prepared, focused and faithful.
In the midst of preparation, I am reminded of purpose. Whether or not I know the full extent, God has a purpose for the summer of Brian and I am convinced it is not limited to my healing. Nothing that we go through is by accident, and maybe someone who would have never softened otherwise to God's grace will experience it for the first time through the faith of God's people.
Thank you all for your continued prayers and your support. God has used you already in miraculous ways to bring us to where we are today.
I flew solo on day one and began a series of scans and functions tests that determined my preparedness to handle the transplant process. Day two was much of the same but the family came along this time. A break during the days events allowed us to eat lunch at and tour Baltimore's inner harbor. The day finished for me with the ever popular bone marrow biopsy and we managed to beat the afternoon traffic on I-95 north.
In between scheduled appointments and various medical buildings in the hospital, I was able to familiarize myself with the campus and even start to feel comfortable there. The Weinberg building is an all in one cancer care center. Although I am blessed to not have cancer, my treatment falls under their realm of expertise, so the Weinberg it is. After an educational class Kelly and I attended on transplants, we actually were able to tour the floor where I'll be staying during the first 3-4 weeks of the process. I have to say it was pretty nice. It's definitely a hospital room, but built with comforts and amenities like a TV/DVD player, a dresser, a recliner, etc. Because of the risk of infection with transplant patients, the entrance to the room is like an airlock. You walk through two separate doors with a sink in between, insuring all those that enter and leave are washing every time. I may not be quite as excited about it after the novelty has worn off, but it was cool none the less.
So many of you have been asking about timelines, and we wanted to be sure of the schedule ourselves before releasing dates. I will be admitted to the hospital on Tuesday July 5 when I will start what will be 6 consecutive days of high dose chemotherapy. The chemo is intended to wipe clean the slate of my own bone marrow which doesn't work right anyway. Of course, most are familiar with the side effects of chemo and the joy ride that can be. On the seventh day I get to rest (sound familiar) and Tuesday July 12 is "Day Zero" or transplant day.
That brings us to the donor. My sister Kari is actually in Maryland for the weekend to do some testing of her own at Hopkins on Monday and Tuesday. She'll fly back to Houston Wednesday and not return until the day before transplant day. Although she will be under general anesthesia for the harvest, her procedure is outpatient and she be out of there the same day, although a little uncomfortable. The transplant team will harvest about 1.5 liters of bone marrow, filter it down to pure stem cells, and the drip it from a bag into my IV. The actual transplant is pretty uneventful for me, although Kari will have a big day.
Following the transplant they give me another two days of chemo, this time to prevent Kari's immune system in the stem cells from rejecting the graft which is the basis of graft vs. host disease. Then it is a waiting game, waiting for those stem cells from that little bag to take root and start cranking. With daily blood draws and constant monitoring, we may see progress within a few days, but it takes weeks to even consider leaving the room. When the white blood cells start to show up and my body has a fighting chance of defending itself outside a hospital room, I can move into an outpatient apartment on the hospital campus and just come in for daily treatment. That can go on for weeks as well, all depending on how quickly my body recovers.
Call it ignorance or naivety, but I grow increasingly more comfortable with the weeks and months ahead. I guess since arriving, and even in the days and weeks approaching our departure, God's hand in this adventure has been more and more evident by the day, providing for every need whether emotional, financial, and otherwise. I even feel a weird bubble of protection from getting sick as both girls have thrown up since leaving Bellingham. Once again, our confidence and faith in this process is confirmed daily and as this next week passes I hope for more of the same. The nerves will build but that keeps us sharp, prepared, focused and faithful.
In the midst of preparation, I am reminded of purpose. Whether or not I know the full extent, God has a purpose for the summer of Brian and I am convinced it is not limited to my healing. Nothing that we go through is by accident, and maybe someone who would have never softened otherwise to God's grace will experience it for the first time through the faith of God's people.
Thank you all for your continued prayers and your support. God has used you already in miraculous ways to bring us to where we are today.
Tuesday, June 7, 2011
We are still waiting. Everything is happening slower than it was supposed to. I suppose it's human anxiety that maintains a stronger foothold on our schedule than it really should. Who am I to question the timing? Have I not yet learned my lesson about who is really in control here?
The other day, Kelly was recalling years ago how her closest friends in Bellingham moved to the other side of the country within a few month of each other. At the time it was devastating for her, and it has been difficult since then to stay close with people that she gets to see maybe once every couple years. But here's the thing, one of her friends moved to Elkton, MD, a mere 45 miles from Baltimore. See what I'm getting at here people. The Great Conductor started writing this score years ago, and we just need to pick up our instruments and play the notes.
My summer at "Camp Hopkins" will not begin for at least another week, once blood samples have been tested and a Bone Marrow match is confirmed. I imagine my summer camp experience will be a lot like my previous experiences, except that first hour boating will be replaced with first hour "IV bagging" and second hour sailing will take the form of second hour "trying not to puke...ing." Historically, my visits to the infirmary to see the nurse have worked out well, so I am encouraged.
God's ability to provide for our needs has been nothing short of miraculous. Many of you have given financially, for which we could never say enough to truly express our thanks. Many co-workers of mine donated sick time so that I could end my school year early to prepare. Many prayers have already been answered in the early stages, and we have faith that God's plan for my health and our future is secure. Your continued prayers are heard and appreciated.
It is with our human attempts at patience and faith we await the call to leave. In the meantime, we will enjoy this rare season of time together as a family.
Wednesday, April 27, 2011
Countdown
It is official! We are making plans for a Bone Marrow Transplant at Johns Hopkins in Baltimore, MD. The actual date has yet to be finalized but we are planning on getting started by the first week of June, possibly sooner. We have been in contact with the doctor and other Hopkins staff to make all the necessary arrangements.
Communication with the hospital has been smooth and easy. It is all the other arrangements that generate stress and anxiety as we get closer to June. We are planning on moving the whole family out for the two months that I will be at Hopkins. Kelly and the girls will be staying with friends in Elkton, MD, about an hour away from Baltimore. Kelly will be with me as often as she can, but it is important for her to be with the girls so that their summer is as normal as possible.
Summers off are easy for a teacher, but a nurse does not share the same luxury of vacation time (at least not as much). Kelly is having to take unpaid leave from work for at least two months which leaves us with some financial needs. God is already providing for some of those needs through the generosity and creativity of friends and family. Our good friends Curt and Emily hosted a weekend of photography sessions and donated the fees they received to help us cover our summer expenses. Other friends have donated money to The Brian Porteous Donation Fund that is set up at the Whatcom Educational Credit Union. WECU will accept donations at any branch or through the mail to WECU, PO Box 9750, Bellingham, WA 98227-9750.
Please do not misunderstand us. Many of you have asked us if you can support us financially and the account gives you an opportunity to do so. More important to us than money are your kind words, your thoughts, and your prayers as you have followed us and continue with us through this process.
I am still relying on blood transfusions about every two weeks to sustain me. At first it was frustrating but now I see it as more of a means to and end. If the transplant works, not only will transfusions be a thing of the past but so will the laundry list of medications. I feel like a car that needs to completely fill the engine with oil and water every time I stop for gas. As my body uses up the previous transfusion, my energy begins to drag and I feel tired which does not mesh well with a full work schedule and early mornings.
With a busy schedule, it is easy to lose a Godly perspective. I am guilty of forgetting that it is only through Christ I am saved, only by God's grace that I exist, and only by God's blessings that I have an amazing wife, two wonderful daughters, a loving family, and friends that love me closer than brothers. I need to find time for God to speak to me through a hectic schedule, chronic fatigue, and consuming preparation and planning. Only then can I reclaim the peace of mind that God promises amidst the most difficult of circumstances.
Thank you again for your prayers and your thoughts.
Friday, April 8, 2011
Grace Enough for Today
My greatest fear was that we would come back empty handed...that the doctor would simply say, "You are doing all you can do." Family and friends offering to bend over backwards to make everything possible would be left with praying that a bunch of horse size pills will somehow start working and I would just bounce back. There was a moment a couple nights before the appointment where I was mentally preparing myself to be disappointed that I would not be a candidate for any other treatments.
The results of the appointment could not be more distant from my worst fears. In fact, the doctor surprised us with a treatment that since my original diagnosis in April of 1999, we no longer considered an option. That's right folks...Bone Marrow Transplant! In 1999, that was the first treatment option if I had a matched related donor which made Kari (my sister) the only potential candidate. She was tested and considered close but not a "match" so we went a different route. The risks were still to high with non-related matched donors and on we moved.
So here we are 12 years later and this doctor who has seen more patients with Aplastic Anemia that anyone in the country tells us that not only would Kari's bone marrow work, but both my Mom, Dad, or my daughters could be potential donors (obviously not ideal if avoidable). Advances in the transplantation process allow for a close (but not perfect) related match to take in Aplastic patients with the dangers of Graft vs. Host disease reduced to less than 10%. Kari would have to be retested but she would be the most likely donor.
The procedure is still lengthy and risky, but what amazed us the most is that the word CURE became a part of the conversation for the first time in 12 years. A successful Bone Marrow Transplant would CURE the Aplastic Anemia as well as the PNH disease which caused my hospitalization in November. Essentially, my own stem cells would be wiped clean and replaced with new cells from the donor, replacing the disease and dysfunction with them. The doctor quoted cure rates conservatively at 70% and realistically closer to 80%.
The procedure and recovery would take 60 days. Thirty of those days would be spent at the Hopkins facility in Baltimore where the transplant as well as pre and post treatment would take place. The next 30 days would be spent in Baltimore but with daily outpatient visits for treatment and follow-up. With no complications, I would be able to return home after the 60 days.
Here come the questions...What about timing?...What about Kelly?...What about the girls?...What about money?...Our heads were (a still are a bit) spinning! Spending the last part of our spring break in a small valley in the Canadian Rockies, we are beginning to chew on little bites at a time, like God is only feeding our brains with enough to swallow but not too much to choke on. Grace enough for today!
We are about 95% sure that we are going to move forward with this, with the 5% being the simple fact that we have not yet contacted Hopkins and told them we are a go. We have faith that questions will be answered, time lines will be set, contingencies will be accounted for, and we will move forward. We are at peace with the decision to go through with this and we maintain our faith and hope in God's great plan for our lives.
Once again, your prayers were heard, your thoughts were felt, and God continues to hold this fragile body in the palm of his hand.
Thursday, March 31, 2011
I am writing from Elkton, Maryland a day and a half or so after a red-eye flight out of Sea-Tac, a mediocre sleep on the plane, and a two hour power nap once we reached our good friends' home. Today is a day of relaxing which for me means watching the SPEED Channel during the day and the Final Four tonight. For Kelly and her good friend Lori, it means a manicure and a pedicure in Wilmington, DE for some much needed girl time. Tonight, I'll bring a little West Coast/Pacific Rim grilling to this little East Coast town with some Beaver Chicken (basically teriyaki but far superior).
The appointment at Johns Hopkins is scheduled for Tuesday morning at 8 am ET. We have no idea what is in store, what the doctor will recommend, what types of treatments I am even eligible for based on my diseases and treatment history. All we know is that this doctor has seen as many if not more patients than anyone with my conditions and we are seeking the best medical advice available. Frankly, we are trusting that God has already given this doctor the wisdom to guide us through this process, whatever it may be.
Your encouragement and your prayers have meant so much to Kelly and I as we have prepared for this trip. The planning, the reservations, the timing...everything has seems as thought God has orchestrated this from the beginning. That should come as no surprise, should it? The maker of the universe should be able to conveniently schedule a doctors appointment during our spring break. Yet even the most mundane and seemingly insignificant details I often chalk up to coincidence should be recognized as divine moments where God literally reaches down, firmly grabs my shoulder with his massive hands, and guides me.
This post would be incomplete without me venting my continued frustration with the lack of progress in my blood counts. I feel like I need a punch card for blood transfusions lately. I have had to visit the hospital at least a day per week during the past month for one reason or another, capped by a full day of taking two units of blood and platelets on Thursday to "top off" before taking off during spring break. It is survival right now but it is all we can do.
As for this weekend, Kelly and I are going to enjoy our first visit to this part of the country. Annapolis Sunday, DC Monday, and Baltimore Tues...Not a bad weekend for boy from Corvallis, OR and a girl from Kelowna, BC.
The appointment at Johns Hopkins is scheduled for Tuesday morning at 8 am ET. We have no idea what is in store, what the doctor will recommend, what types of treatments I am even eligible for based on my diseases and treatment history. All we know is that this doctor has seen as many if not more patients than anyone with my conditions and we are seeking the best medical advice available. Frankly, we are trusting that God has already given this doctor the wisdom to guide us through this process, whatever it may be.
Your encouragement and your prayers have meant so much to Kelly and I as we have prepared for this trip. The planning, the reservations, the timing...everything has seems as thought God has orchestrated this from the beginning. That should come as no surprise, should it? The maker of the universe should be able to conveniently schedule a doctors appointment during our spring break. Yet even the most mundane and seemingly insignificant details I often chalk up to coincidence should be recognized as divine moments where God literally reaches down, firmly grabs my shoulder with his massive hands, and guides me.
This post would be incomplete without me venting my continued frustration with the lack of progress in my blood counts. I feel like I need a punch card for blood transfusions lately. I have had to visit the hospital at least a day per week during the past month for one reason or another, capped by a full day of taking two units of blood and platelets on Thursday to "top off" before taking off during spring break. It is survival right now but it is all we can do.
As for this weekend, Kelly and I are going to enjoy our first visit to this part of the country. Annapolis Sunday, DC Monday, and Baltimore Tues...Not a bad weekend for boy from Corvallis, OR and a girl from Kelowna, BC.
Thursday, March 17, 2011
Happy Saint Patrick's Day. I was really worried tonight, however my worry did not begin with a sub-par blood draw yesterday or a general feeling of fatigue that comes with low counts. When I arrived at the hospital at 6 pm to receive another two units blood, I thought to myself, "Day one of the NCAA tournament is probably not a bad time to be stuck in a hospital room with nothing to do but watch basketball." Once settled, I simply asked the nurse to bring the portable TV arm close enough so I could get started with tournament action. The worry set in when the damn thing would not turn on.
Nothing to do but watch tournament basketball and I DON'T HAVE A FREAKING TV. Considering my options, I was about ready to inquire with the nursing staff about a simple fix or another room when it dawned on me...live games online, and I remembered my laptop. God is good.
As I write I'm watching Gonzaga and St. John's duke it out and Gonzaga has an early 32-21 lead. Gonzaga is what I like to call a "homer" pick in my bracket. I end up picking a bunch of teams based on a clear west coast bias, regardless of seed or match-up. It usually buries my bracket early but I can sleep at night. One of these years all my Pac-10 (or should I say Pac-12) teams (and other west-coasties) will work their way to the Sweet 16 or the Elite 8 and the tournament will belong to me. Until then, I'll keep lighting $5 on fire every year and enjoy watching every other team advance.
So here I am in the hospital again on a Thursday night getting transfused with Red Blood Cells. The counts have been worse but we saw a trend this week as I got checked, and after taking platelets on Monday night I knew that I would need blood again to get me through the next couple weeks. Here were the counts yesterday, March 16:
Hemoglobin: 5.9
Hematocrit: 17.1
Platelets: 28,000
The platelets are obviously higher because of Monday's transfusion but the writing was on the wall for the red cells. Not wanting to give up any weekend time, I decided to come in as soon as possible and take care of business after school. It will be a late night tonight, but it will be done and I can function on Friday and enjoy my weekend.
It is so frustrating to be so dependent on something so essential to health and life. Think about it, I am literally plugged into a fueling station that is letting my motor continue to run. Whatever function we humans are designed with to sustain our own fuel with only the simplest of building blocks is non-existent in my body right now and that kind of scares the hell out me. I can't help but think about how long this is going to last, having to get hooked up on a weekday evening just so I can turn around and head back to the day job and contribute to society.
The question came up between Kelly and I if I should still be working, considering the mental and physical demands and how they may or may not be affecting my health. Neither one of us could even decide for ourselves what the impact is and therefore we could not come to a conclusion. So indecision defaults to the norm and the alarm is set for 5:30 tomorrow morning so I can prepare my classroom for another day of 12 and 13 year old learners.
In the last blog, I described our efforts to travel back to the east coast to meet with a new doctor that could partner with us in treatment options. I am extremely happy to announce that thanks to a relentless pursuit of results by my wonderful wife, we are scheduled for an April 5 appointment with a doctor at Johns Hopkins in Baltimore, MD. We are realistic that we may leave with as many questions as answers but this medical center and this doctor have treated as many if not more patients with my conditions than any other. The experience alone gives us confidence that we are moving towards the best treatment options and the best hope for my future.
As much as I am relying on God's strength right now for everything, my heart is heavy for friends and family that are living through trials of their own. My prayers for others include defibrillator surgeries, job loss, and recovery from surprise heart attacks. I spend as much time thinking about and praying for the closest family and friends, knowing full well that the stress and weight of worry can be as debilitating as the affliction itself. Being strong for those you love needs just as much divine intervention as fighting the battle itself.
Gonzaga is up by 14. Looks like I might get a "homer" pick after all. Maybe the Dawgs will show up tomorrow and really make me glad I picked from the heart.
Brian
Nothing to do but watch tournament basketball and I DON'T HAVE A FREAKING TV. Considering my options, I was about ready to inquire with the nursing staff about a simple fix or another room when it dawned on me...live games online, and I remembered my laptop. God is good.
As I write I'm watching Gonzaga and St. John's duke it out and Gonzaga has an early 32-21 lead. Gonzaga is what I like to call a "homer" pick in my bracket. I end up picking a bunch of teams based on a clear west coast bias, regardless of seed or match-up. It usually buries my bracket early but I can sleep at night. One of these years all my Pac-10 (or should I say Pac-12) teams (and other west-coasties) will work their way to the Sweet 16 or the Elite 8 and the tournament will belong to me. Until then, I'll keep lighting $5 on fire every year and enjoy watching every other team advance.
So here I am in the hospital again on a Thursday night getting transfused with Red Blood Cells. The counts have been worse but we saw a trend this week as I got checked, and after taking platelets on Monday night I knew that I would need blood again to get me through the next couple weeks. Here were the counts yesterday, March 16:
Hemoglobin: 5.9
Hematocrit: 17.1
Platelets: 28,000
The platelets are obviously higher because of Monday's transfusion but the writing was on the wall for the red cells. Not wanting to give up any weekend time, I decided to come in as soon as possible and take care of business after school. It will be a late night tonight, but it will be done and I can function on Friday and enjoy my weekend.
It is so frustrating to be so dependent on something so essential to health and life. Think about it, I am literally plugged into a fueling station that is letting my motor continue to run. Whatever function we humans are designed with to sustain our own fuel with only the simplest of building blocks is non-existent in my body right now and that kind of scares the hell out me. I can't help but think about how long this is going to last, having to get hooked up on a weekday evening just so I can turn around and head back to the day job and contribute to society.
The question came up between Kelly and I if I should still be working, considering the mental and physical demands and how they may or may not be affecting my health. Neither one of us could even decide for ourselves what the impact is and therefore we could not come to a conclusion. So indecision defaults to the norm and the alarm is set for 5:30 tomorrow morning so I can prepare my classroom for another day of 12 and 13 year old learners.
In the last blog, I described our efforts to travel back to the east coast to meet with a new doctor that could partner with us in treatment options. I am extremely happy to announce that thanks to a relentless pursuit of results by my wonderful wife, we are scheduled for an April 5 appointment with a doctor at Johns Hopkins in Baltimore, MD. We are realistic that we may leave with as many questions as answers but this medical center and this doctor have treated as many if not more patients with my conditions than any other. The experience alone gives us confidence that we are moving towards the best treatment options and the best hope for my future.
As much as I am relying on God's strength right now for everything, my heart is heavy for friends and family that are living through trials of their own. My prayers for others include defibrillator surgeries, job loss, and recovery from surprise heart attacks. I spend as much time thinking about and praying for the closest family and friends, knowing full well that the stress and weight of worry can be as debilitating as the affliction itself. Being strong for those you love needs just as much divine intervention as fighting the battle itself.
Gonzaga is up by 14. Looks like I might get a "homer" pick after all. Maybe the Dawgs will show up tomorrow and really make me glad I picked from the heart.
Brian
Monday, March 7, 2011
With instability being the only constant, my extended weekend began with a simple step of faith and proceeded with what I would consider an divinely orchestrated plan. God has an amazing way of sending us little messages, nudging us in seemingly awkward directions, and finally showing us the map after we've reached our destination. This is just as true for a short weekend as it is for the navigation of our entire lives.
On Thursday night my wife stopped by our Shuksan wrestling practice with some concerns of her own, and in our conversation she asked how I'm "feeling." That is a loaded question and the answer always differs depending on who I'm talking to, but I know what she wants to know and I didn't hold back. I was beat down...exhausted! I knew my counts were low and it takes REALLY low counts for me to be able to feel that weight.
The first step is always to get my blood drawn, so a planned Friday morning blood draw was bumped to Thursday night and sure the enough, the numbers didn't lie:
HGL 5.2
HCT 15.8
PLA 10,000
The Hemoglobin and Hematocrit were as low as they had ever been, which was no surprise. The best way to describe red cells being that low is that I can literally feel the weight of my limbs hanging from my body without lifting them, I can feel my pulse race over 100 bpm just standing up, and it can even effect the clarity and quality of my speech if I talk too fast. I needed rest and I needed blood.
For those of you who have read previous posts, you know that ordering and receiving blood products is not necessarily a slam dunk. Ideally, I would take a sick day on Friday, go to the hospital for a blood transfusion, and feel much better sooner than later. The decision to take the day off on Friday came out of self preservation and no promise of blood being available that day. In fact, I anticipated resting all day and planning on a Saturday transfusion that would leech half my weekend.
Here is where God took over my schedule. I received a call Friday morning letting me know that one unit of blood was already available and in Bellingham (what are the chances of that) and I was to come in right away. The second unit and platelets would be available later in the day, conveniently after I went and coached our first Shuksan wrestling match of the season over at Fairhaven Middle School.
A quick stop at Subway for a Chicken Bacon Ranch Sandwich (with chipotle sauce) and I was back at the hospital for round two late on a Friday night, thus taking advantage of a precious sick day and getting needed medical attention. More importantly, I was able to preserve my entire weekend for precious time at home with my family. A morning of homemade blueberry buttermilk pancakes and sausage (yes I am the chef) sure beats an IV start with a type-and-cross at St. Joe's.
The most difficult realization this weekend was the reality that the blood counts are not improving with current treatments. We are incrementally increasing doses as the kidneys can handle it but so far there is no progress. In my last post, I mentioned that Kelly and I are seeking out other possible treatments and not limiting ourselves to Bellingham or even the state of Washington.
Since the last blog post, we have forwarded my medical records to Johns Hopkins medical center in Baltimore to a doctor that has specialized in Aplastic Anemia and PNH for years. Once Hopkins reviews my records, Kelly and I will fly to Baltimore for a consultation to talk about the best options for treatment and our future. One treatment in particular would involve returning to Baltimore for the summer to undergo an aggressive but potentially successful treatment for patients with very similar case histories.
The point is, there is HOPE! Hope for new information. Hope for discussions of curing rates versus long-term medication management. Hope for a future!
On Thursday night my wife stopped by our Shuksan wrestling practice with some concerns of her own, and in our conversation she asked how I'm "feeling." That is a loaded question and the answer always differs depending on who I'm talking to, but I know what she wants to know and I didn't hold back. I was beat down...exhausted! I knew my counts were low and it takes REALLY low counts for me to be able to feel that weight.
The first step is always to get my blood drawn, so a planned Friday morning blood draw was bumped to Thursday night and sure the enough, the numbers didn't lie:
HGL 5.2
HCT 15.8
PLA 10,000
The Hemoglobin and Hematocrit were as low as they had ever been, which was no surprise. The best way to describe red cells being that low is that I can literally feel the weight of my limbs hanging from my body without lifting them, I can feel my pulse race over 100 bpm just standing up, and it can even effect the clarity and quality of my speech if I talk too fast. I needed rest and I needed blood.
For those of you who have read previous posts, you know that ordering and receiving blood products is not necessarily a slam dunk. Ideally, I would take a sick day on Friday, go to the hospital for a blood transfusion, and feel much better sooner than later. The decision to take the day off on Friday came out of self preservation and no promise of blood being available that day. In fact, I anticipated resting all day and planning on a Saturday transfusion that would leech half my weekend.
Here is where God took over my schedule. I received a call Friday morning letting me know that one unit of blood was already available and in Bellingham (what are the chances of that) and I was to come in right away. The second unit and platelets would be available later in the day, conveniently after I went and coached our first Shuksan wrestling match of the season over at Fairhaven Middle School.
A quick stop at Subway for a Chicken Bacon Ranch Sandwich (with chipotle sauce) and I was back at the hospital for round two late on a Friday night, thus taking advantage of a precious sick day and getting needed medical attention. More importantly, I was able to preserve my entire weekend for precious time at home with my family. A morning of homemade blueberry buttermilk pancakes and sausage (yes I am the chef) sure beats an IV start with a type-and-cross at St. Joe's.
The most difficult realization this weekend was the reality that the blood counts are not improving with current treatments. We are incrementally increasing doses as the kidneys can handle it but so far there is no progress. In my last post, I mentioned that Kelly and I are seeking out other possible treatments and not limiting ourselves to Bellingham or even the state of Washington.
Since the last blog post, we have forwarded my medical records to Johns Hopkins medical center in Baltimore to a doctor that has specialized in Aplastic Anemia and PNH for years. Once Hopkins reviews my records, Kelly and I will fly to Baltimore for a consultation to talk about the best options for treatment and our future. One treatment in particular would involve returning to Baltimore for the summer to undergo an aggressive but potentially successful treatment for patients with very similar case histories.
The point is, there is HOPE! Hope for new information. Hope for discussions of curing rates versus long-term medication management. Hope for a future!
Monday, February 28, 2011
The battle of health compromization has a unique list of casualties, the most recent being a trip that was planned with a great group of guys to the the Pac 10 Championships of Wrestling in Corvallis, OR. Most of you know that Corvallis is my hometown and almost more so than the wrestling, I was looking forward to playing host to our coaching staff and several Squalicum wrestlers along for the trip.
As the trip approached and plans were solidified, the wiser half of our household leadership committee (Kelly) brought to my attention some factors that I was aware of but had chosen to ignore for the sake of really wanting to go on the trip. Factors such as 6 hours on the road, sleeping in hotel rooms, still nursing a cold, fresh off a platelet transfusion on Wed., and the possibility of needing red cells before the weekend built a strong case toward staying at home for the weekend. I reported to the committee that all points were valid and that I would need the next day to mourn the loss of the trip and be ready to move forward by days end...the committed agreed.
Now back in the saddle, after a weekend of REST at HOME, I am ready for a full week of work and am grateful for the love and support of those closest to me that absolutely have my best in mind. I heard the weekend in Corvallis was unbelievable, especially the Huli-Huli chicken from Local Boyz Hawaiian Cafe but I couldn't have been happier resting at home with the family.
As mentioned earlier, I did have to receive platelets on Wed. night when the count dropped to 6000. The red cells had also fallen but I was not feeling symptomatic so we decided to hold off and get drawn again on Friday. I had already began to make plans to be in the hospital on Saturday morning to receive another transfusion. Expecting the worst, I logged onto my hospital patient account and read that the Hemoglobin had gone from 5.4 to 6.0 and the Hematocrit was up to 18.2 from 16. Remember that these counts are still critically low and most people can't walk with these numbers, but if I am not getting blood at 5.4 then I'm certainly not getting it at 6.0. We celebrated mediocrity that night as a family by going out to mexican food.
I will get another blood draw Tuesday morning in an effort to stay on top of what are still very critical counts. We are constantly praying and hoping for stability first and growth second. The meds are still not showing much progress, however my kidneys seem to be doing better and better at allowing the higher doses to process in my body. It will take sustained higher doses of meds to get things turned around and even then it will be slow. Continued prayer for progress and patience is appreciated.
Kelly and I are starting to do more research in the areas of Aplastic Anemia and PNH and we are learning that there are treatment options that might be worth looking into in the future. Without getting into too much detail, there are doctors across the country that specialize in these particular diseases and have treatment protocols that we have only been made aware of recently. We are starting the process of arranging consultations with these doctors to see if there are new stones to overturn.
I can't thank all of you enough for your continued prayer and support. It has been difficult but God is using each and every one of you to lift up me and my family and allow us to endure through this season. God Bless!
Brian
As the trip approached and plans were solidified, the wiser half of our household leadership committee (Kelly) brought to my attention some factors that I was aware of but had chosen to ignore for the sake of really wanting to go on the trip. Factors such as 6 hours on the road, sleeping in hotel rooms, still nursing a cold, fresh off a platelet transfusion on Wed., and the possibility of needing red cells before the weekend built a strong case toward staying at home for the weekend. I reported to the committee that all points were valid and that I would need the next day to mourn the loss of the trip and be ready to move forward by days end...the committed agreed.
Now back in the saddle, after a weekend of REST at HOME, I am ready for a full week of work and am grateful for the love and support of those closest to me that absolutely have my best in mind. I heard the weekend in Corvallis was unbelievable, especially the Huli-Huli chicken from Local Boyz Hawaiian Cafe but I couldn't have been happier resting at home with the family.
As mentioned earlier, I did have to receive platelets on Wed. night when the count dropped to 6000. The red cells had also fallen but I was not feeling symptomatic so we decided to hold off and get drawn again on Friday. I had already began to make plans to be in the hospital on Saturday morning to receive another transfusion. Expecting the worst, I logged onto my hospital patient account and read that the Hemoglobin had gone from 5.4 to 6.0 and the Hematocrit was up to 18.2 from 16. Remember that these counts are still critically low and most people can't walk with these numbers, but if I am not getting blood at 5.4 then I'm certainly not getting it at 6.0. We celebrated mediocrity that night as a family by going out to mexican food.
I will get another blood draw Tuesday morning in an effort to stay on top of what are still very critical counts. We are constantly praying and hoping for stability first and growth second. The meds are still not showing much progress, however my kidneys seem to be doing better and better at allowing the higher doses to process in my body. It will take sustained higher doses of meds to get things turned around and even then it will be slow. Continued prayer for progress and patience is appreciated.
Kelly and I are starting to do more research in the areas of Aplastic Anemia and PNH and we are learning that there are treatment options that might be worth looking into in the future. Without getting into too much detail, there are doctors across the country that specialize in these particular diseases and have treatment protocols that we have only been made aware of recently. We are starting the process of arranging consultations with these doctors to see if there are new stones to overturn.
I can't thank all of you enough for your continued prayer and support. It has been difficult but God is using each and every one of you to lift up me and my family and allow us to endure through this season. God Bless!
Brian
Sunday, February 13, 2011
Uncertainty and lack of progress still plague my increasingly busy schedule. Friday morning (Feb. 11) I had a blood draw that showed that my Hemoglobin and Hematocrit had fallen to 5.6 and 17.0, both of which are critically low. I decided to get the ball rolling myself by calling two doctors, scheduling a blood transfusion to help me feel as good as I could feel, all things considered. I literally did everything in my power to make sure I would get "plugged in" as soon as possible, which meant I had to cancel our middle school wrestling practice to get to the hospital in the afternoon once my teaching obligations were met.
So, ready with about 5 hours of time killers to get through the transfusion, I showed up at the hospital at my scheduled time of 3 pm. Admitted, in a hospital room, and happily reading ESPN the Magazine, my nurse comes in and informs me that my blood (which of course is almost as rare as my running list of conditions) has yet to be driven from SEATTLE and the soonest it would be here is 5 pm. Are you kidding me?
Knowing that a 5 pm start time may or may not get me a hospital tray upon my return, I decided to give in to mounting week long craving for a Boomers burger. If I couldn't refuel my system then I would at least refuel my stomach. It's amazing how much one can find peace of mind over a Boomers burger, waffle fries, an Oreo shake, and a copy of the Echo Ads.
Before leaving the hospital, the nurse and I agreed I would just show up closer to 6 unless I heard from him otherwise, and a call to my cell phone at 5:30 confirmed that the blood was not ready yet and there was no point in coming in earlier. However, I was out and about and listless so I went to the hospital anyway to just check in and visit Kelly who works only one floor above. As I'm walking into the hospital lobby, the nurse blows up my phone to inform me that the blood would not leave Seattle until 8 pm and would be arriving no later than 10. At this point my heart just sunk in my chest and my frustration was overwhelming. Did they know what my numbers were? Did they know I had somewhere to be tomorrow? Did they know the unit closes at 11:30 pm and I would have to be admitted overnight to get the blood now? I was ready to drive to Seattle myself, not to get the blood but to unload on the incompetent employees of the Puget Sound Blood Bank that were slowing my life down.
Here I pause. My condition should slow my life down. I should be "taking it easy." The schedule I run and the energy with which I run it is unnatural considering my current condition. All I can say is that I can't help it. I thrive on the passion with which I teach and coach. I feel energized getting up early in the morning, putting on a pressed shirt and tie, and working with middle school students all day. I receive a second wind walking to the locker room to get ready for wrestling practice or during the 15 minute drive to Squalicum to work with the Storm wrestlers. One of the reasons I wanted the blood Friday night was so that I could be recharged and ready for the girls regional wrestling tournnament at Sedro-Woolley High School on Saturday (where one of our girls took 3rd and qualified for the state tournament...GO STORM!).
The decision was made to schedule the transfusion for Sunday morning at 9 am when the blood would be ready, I would be rested, and there would be no further scheduling conflicts.
And that is where this blog finds me...sitting at the keyboard of a Dell net-book, washing down graham crackers and peanut butter with grape juice (hospital staples), watching NASCAR qualifying for next week's Daytona 500, and receiving 2 units of much needed red blood cells.
I describe the source of my daily energy as "Hybrid like," but without the battery. I always feel like I have the energy to do what I want and need to do in my daily life. There is no other explanation for this sustained energy than God given. Forgive me for any cliches that may sneak in here, but in my mind there is only one explanation for my ability to carry on. My physical and mental strength is being upheld and sustained by God almighty, who has my best in mind, loves me more than anything in the world, gave is son for me that I might have life in this life and the life to come.
I am absolutely hooked on Zac Brown Band right now. The song "Let It Go" provides anthem-like lyrics for me as listen:
Keep your heart above your head and your eyes wide open
so this world can't find a way to leave you cold
You know you're not the only ship out on the ocean
Save your strength for things that you can change
forget the ones you can't
You gotta let it go!
It makes it easy to let it go in the hands of the Almighty!
So, ready with about 5 hours of time killers to get through the transfusion, I showed up at the hospital at my scheduled time of 3 pm. Admitted, in a hospital room, and happily reading ESPN the Magazine, my nurse comes in and informs me that my blood (which of course is almost as rare as my running list of conditions) has yet to be driven from SEATTLE and the soonest it would be here is 5 pm. Are you kidding me?
Knowing that a 5 pm start time may or may not get me a hospital tray upon my return, I decided to give in to mounting week long craving for a Boomers burger. If I couldn't refuel my system then I would at least refuel my stomach. It's amazing how much one can find peace of mind over a Boomers burger, waffle fries, an Oreo shake, and a copy of the Echo Ads.
Before leaving the hospital, the nurse and I agreed I would just show up closer to 6 unless I heard from him otherwise, and a call to my cell phone at 5:30 confirmed that the blood was not ready yet and there was no point in coming in earlier. However, I was out and about and listless so I went to the hospital anyway to just check in and visit Kelly who works only one floor above. As I'm walking into the hospital lobby, the nurse blows up my phone to inform me that the blood would not leave Seattle until 8 pm and would be arriving no later than 10. At this point my heart just sunk in my chest and my frustration was overwhelming. Did they know what my numbers were? Did they know I had somewhere to be tomorrow? Did they know the unit closes at 11:30 pm and I would have to be admitted overnight to get the blood now? I was ready to drive to Seattle myself, not to get the blood but to unload on the incompetent employees of the Puget Sound Blood Bank that were slowing my life down.
Here I pause. My condition should slow my life down. I should be "taking it easy." The schedule I run and the energy with which I run it is unnatural considering my current condition. All I can say is that I can't help it. I thrive on the passion with which I teach and coach. I feel energized getting up early in the morning, putting on a pressed shirt and tie, and working with middle school students all day. I receive a second wind walking to the locker room to get ready for wrestling practice or during the 15 minute drive to Squalicum to work with the Storm wrestlers. One of the reasons I wanted the blood Friday night was so that I could be recharged and ready for the girls regional wrestling tournnament at Sedro-Woolley High School on Saturday (where one of our girls took 3rd and qualified for the state tournament...GO STORM!).
The decision was made to schedule the transfusion for Sunday morning at 9 am when the blood would be ready, I would be rested, and there would be no further scheduling conflicts.
And that is where this blog finds me...sitting at the keyboard of a Dell net-book, washing down graham crackers and peanut butter with grape juice (hospital staples), watching NASCAR qualifying for next week's Daytona 500, and receiving 2 units of much needed red blood cells.
I describe the source of my daily energy as "Hybrid like," but without the battery. I always feel like I have the energy to do what I want and need to do in my daily life. There is no other explanation for this sustained energy than God given. Forgive me for any cliches that may sneak in here, but in my mind there is only one explanation for my ability to carry on. My physical and mental strength is being upheld and sustained by God almighty, who has my best in mind, loves me more than anything in the world, gave is son for me that I might have life in this life and the life to come.
I am absolutely hooked on Zac Brown Band right now. The song "Let It Go" provides anthem-like lyrics for me as listen:
Keep your heart above your head and your eyes wide open
so this world can't find a way to leave you cold
You know you're not the only ship out on the ocean
Save your strength for things that you can change
forget the ones you can't
You gotta let it go!
It makes it easy to let it go in the hands of the Almighty!
Saturday, February 5, 2011
This week has been one of the sweetest weeks of my professional career. From the moment my students walked into the classroom, I felt like I was home again. All the confidence and assurance of choosing the right career for myself came flooding back in an instant as I found myself greeting, talking with, helping, and even bantering with students again. Of course each day brought a moderate stress load of prep and planning, but I was able to manage.
The staff at Shuksan was amazing in welcoming me back and checking on me daily to make sure I was maintaining energy levels and making sure I had everything I needed for the four different subjects I am now teaching. I found it so easy to tell them that teaching was giving me more life than it was taking and I was so glad to be back.
The most difficult part of this week physically has been managing sleep. As I have said before, high doses of different meds affect sleeping and waking at inopportune times, waking me up too early or not letting me go to sleep soon enough. In spite of this, I have felt well rested this week and God has been faithful in allowing me the rest if not the sleep quota I set for myself each night.
I am now getting blood draws once a week to maintain progress and the most recent draw (Tues. Feb. 2) continues to show stability and even moderate improvement:
Hemoglobin: 7.0
Hematocrit: 20.6
Platelets: 10,000
Other counts that we are looking at closely are kidney and liver processing levels. Some of these counts have started to rise above what is safe and acceptable so we are adjusting doses of certain meds to keep those under control. It is a fine balancing act between giving my blood what it needs and not overwhelming my organs with toxicity. Please pray that the organs can handle the necessary doses of meds to sustain my improved counts.
I continue to take daily meds for my Aplastic Anemia and I visit the infusion center for an IV drug once every two weeks to treat the PNH disease. There are moments where I feel so dependent, but I am grateful for the modern medicines that allow me to function as I am. God is faithful in so many ways.
Tuesday, January 25, 2011
Moving Forward
One thing about heavy doses of medication is that it messes with sleeping and waking. Up earlier than usual today, I find myself grateful for the time I have to drink buckets of coffee, do a little Ebay shopping, and sit down to write another entry.
During my scheduled infusion on Tuesday, my doctor answered a point blank question about whether or not I should return to work. He actually told me that my counts are stable enough and showing enough improvement that he okayed me to return to work next week. He even went as far as saying that a full return is okay to preserve any remaining sick time I still have stored. The major concern was risk of infection which has always been a risk for me. Kelly and I were more concerned about risks related to stress of work and how that might affect progress. The doctor reassured us that the medications will do their work in spite of the day job.
Neither Kelly nor I are naive about how work and stress can affect the physical body. Much of our "return to work" conversation was peppered with questions like, "What time are you planning on getting to bed?," and, "What time are you going to get up in the morning?," followed by, "Do you have anywhere you can rest at school during the day?"
Although my schedule will adjust, returning to work will be refreshing and live giving. I love teaching, working face to face with students, coaching, and collaborating with other staff in my school. The beginning of the second semester provides such a clean new beginning for myself and my students, so much so that I am enjoying those early September butterflies all over again as I prepare.
The Numbers Game
The one question that most people have when I speak to them face to face is, "How do you feel?" I love answering that question because I can give the most positive and honest answer. I feel great, in spite of the numbers (the numbers are still keeping me humble, and serve as a reminder to not push too hard too fast.)
Here they are as of Tuesday Jan. 25:
Hemoglobin: 6.4
Hematocrit: 18.8
Platelets: 12,000
Although the red cells are not showing progress, the platelets have shown stability and even the slightest growth. Keep in mind the difference between 6 and 12 is NOTHING when compared to the low end of normal which is 150. Platelets however are a good indicator of early growth.
As I write I am listening to one of my top 5 favorite songs of all time. The song "Hold me Jesus" by Rich Mullins has resounded as an anthem in my life for more that one ailment or trial. Here are some of the lines:
"Sometimes my life just don't make sense at all,
when the mountains look so big and my faith just seems so small.
So hold me Jesus 'cause I'm shaken like a leaf,
You have been King of my glory, won't you be my Prince of Peace."
and...
"Surrender don't come natural to me.
I'd rather fight you for something I don't really want,
than take what you give that I need."
Thank you all for your prayers, your thoughts, the meals, the gifts, the calls, the visits, the emails, the comments, and every other countless way you have blessed me and my family. Everything has served to strengthen our faith and our spirits during this continuous battle. I thank God for all of you!
Monday, January 17, 2011
There have been several blood draws since my last post, and the consensus is that nothing is happening quite yet. I have had transfusions of platelets and red cells which boost the numbers only temporarily but by body has not shown an ability to produce on it's own. Hopefully a few small adjustments to medication will ignite a spark and we'll start to see even the smallest improvement.
Here were the latest numbers as of Friday Jan, 14. See my previous post for normal ranges (remember the Hemoglobin and Hematocrit are up only because of a recent transfusion):
Hemoglobin: 6.7
Hematocrit: 19.5
Platelets: 6,000
Meanwhile, I need to thank you for your prayers for patience as much as anything else, because waiting is hard. I am not a sit and stay type person, and resting is a learned activity for me. With thoughts of work and contributing to society simmering on the back burner, I need to release my agenda and allow myself to heal in whatever time it requires.
I have been so grateful however for the time I've been able to spend with my wife and daughters. Usually my family is widowed from November to February for the high school wrestling season, but I have never watched so many dance classes, had so many coffee dates, or seen so many basketball games as I have this winter. I am truly grateful for the time I have had with my girls and with Kelly.
I do believe that God had my best in mind recently when he did not allow the Oregon Ducks to beat Auburn in the national title game. Putting up with "Duck fan" is bad enough without them winning a BCS game.
Thank you all for your continued thoughts and prayers through this battle.
Not a verse today, but an older song lyric by Stephen Curtis Chapman:
"His strength is perfect when our strength is gone."
Tuesday, January 4, 2011
This is my first attempt at blogging. Check that, it is my second but the first was obligatory and covered a topic I knew so little about it was almost embarrassing. How much can a football and wrestling coach really enlighten rugby fanatics and families about a tour to Scotland anyway? No, this blog is the first outpouring of something far more meaningful to me, however fun the tour may have been.
I am writing to inform, update, vent, and even possibly inspire. Inspire says I? Well, that sounds a little arrogant so let me qualify the word by saying that I feel "inspired" to write.
"...speaking of beliefs and feelings, is it so hard to believe that God has brought you here?"
- Priest in Confessional from the movie The Boondock Saints
So here I am, feeling in some way inspired to write about myself. Any why? The purpose is layered deep but at least the surface is perfectly clear. In recent months I have experienced some significant health issues, which for those of you that know me well is nothing new. I have dealt with significant health problems in the past, but the game has changed and now it is time to inform.
In April of 1999, I was diagnosed with a blood disease called Aplastic Anemia, an auto-immune disease that prevents the body from making enough blood. I have undergone varying degrees of immuno-suppresive therapy that has allowed me to function relatively normally for almost 12 years. During that time my blood counts have spiked and dipped, but very rarely has it affected my quality of life.
On November 1, 2010 the game changed. After a moderately successful day of teaching middle schoolers, I ventured 25 miles south to coach a JV football game. During the game, I felt the onset of illness but was experiencing flu-like symptoms and thought if I could make it home I could sleep it off. To make a long story short, the next day I was hospitalized with liver and kidney failure caused by a blood clot in a vein in my liver. After a week of hospitalization, a team of doctors, and a myriad of tests, I was diagnosed with another equally rare blood disease called Paroxysmal Nocturnal Hemoglobinuria or PNH. This gem of a disease causes the precious few red blood cells I have to break down prematurely and cause clots in my veins. The two diseases are related in that patients with Aplastic Anemia are more likely to have PNH, although there is no cause determined for either in my case.
That is a lot of medical B.S. and if you want more feel free to follow the links, but here is what it has meant to me since that day in November. I haven't worked since. I guess is pays to only take a day or two of sick days per year because when you need them, dammit you NEED them. At first it was the recovery from organ failure but right now my blood counts are critically low and improvement is a waiting game. We are currently relying on bi-weekly blood counts and hoping and praying for improvement. For those of you scoring at home or alone, here are today's counts (Disclaimer for those of you in the medical profession, prepare to break into a cold sweat when you read these):
Platelets: 6000 (normal range is 150,000 to 450,000)
Hemoglobin: 6.1 (normal range is 14 to 18)
Hematocrit: 17.6 (normal range is 42 to 52)
For those of you praying for me, MY normal is not within the normal ranges listed. At best I hover below all three, but I function normally at such levels and that is what we pray for in the Porteo-house. I am on separate drugs for each disease, none of which have any immediate side effects and long term side effects are much like other drugs where organ function is the major concern. Blood counts are the primary indicator of any changes in my condition and we watch them very closely.
Bored yet? I am. Reciting this information is a little redundant for me, but I know that so many of you care about me and my family. This information is to help you understand exactly what is going on, how I am doing with it, and how you believers can pray for us.
As for how I feel, I feel remarkably well. The counts say otherwise but I have a very hard time telling the difference between healthy counts and low counts in my body. Change is often gradual and my body adjusts slowly as the counts either increase or decrease. That is why blood draws are so important for measuring progress. I had great hopes of returning to teach middle school on Jan. 3 but I am protecting the stress level of my day in hopes of my counts improving. The new return date is now Jan. 31 pending improvement.
I suppose I should say something inspirational, motivational, or encouraging for all of you that dared to read this entire post. Let me leave you with a couple things I have learned so far from this ordeal.
Psalm 46:10 says, "Be still and know that I am God..." The literal and all too real translation for me is, "Be still, or I let you get your ASS beaten, and THEN you'll know that I am God!"
On a serious note, 1 Timothy 4:8 says, "Physical training is of some value, but godliness has value for all things, holding promise for the present life and the life to come." Our physical bodies are SO secondary to the health of our spiritual lives, today and tomorrow.
Brian
I am writing to inform, update, vent, and even possibly inspire. Inspire says I? Well, that sounds a little arrogant so let me qualify the word by saying that I feel "inspired" to write.
"...speaking of beliefs and feelings, is it so hard to believe that God has brought you here?"
- Priest in Confessional from the movie The Boondock Saints
So here I am, feeling in some way inspired to write about myself. Any why? The purpose is layered deep but at least the surface is perfectly clear. In recent months I have experienced some significant health issues, which for those of you that know me well is nothing new. I have dealt with significant health problems in the past, but the game has changed and now it is time to inform.
In April of 1999, I was diagnosed with a blood disease called Aplastic Anemia, an auto-immune disease that prevents the body from making enough blood. I have undergone varying degrees of immuno-suppresive therapy that has allowed me to function relatively normally for almost 12 years. During that time my blood counts have spiked and dipped, but very rarely has it affected my quality of life.
On November 1, 2010 the game changed. After a moderately successful day of teaching middle schoolers, I ventured 25 miles south to coach a JV football game. During the game, I felt the onset of illness but was experiencing flu-like symptoms and thought if I could make it home I could sleep it off. To make a long story short, the next day I was hospitalized with liver and kidney failure caused by a blood clot in a vein in my liver. After a week of hospitalization, a team of doctors, and a myriad of tests, I was diagnosed with another equally rare blood disease called Paroxysmal Nocturnal Hemoglobinuria or PNH. This gem of a disease causes the precious few red blood cells I have to break down prematurely and cause clots in my veins. The two diseases are related in that patients with Aplastic Anemia are more likely to have PNH, although there is no cause determined for either in my case.
That is a lot of medical B.S. and if you want more feel free to follow the links, but here is what it has meant to me since that day in November. I haven't worked since. I guess is pays to only take a day or two of sick days per year because when you need them, dammit you NEED them. At first it was the recovery from organ failure but right now my blood counts are critically low and improvement is a waiting game. We are currently relying on bi-weekly blood counts and hoping and praying for improvement. For those of you scoring at home or alone, here are today's counts (Disclaimer for those of you in the medical profession, prepare to break into a cold sweat when you read these):
Platelets: 6000 (normal range is 150,000 to 450,000)
Hemoglobin: 6.1 (normal range is 14 to 18)
Hematocrit: 17.6 (normal range is 42 to 52)
For those of you praying for me, MY normal is not within the normal ranges listed. At best I hover below all three, but I function normally at such levels and that is what we pray for in the Porteo-house. I am on separate drugs for each disease, none of which have any immediate side effects and long term side effects are much like other drugs where organ function is the major concern. Blood counts are the primary indicator of any changes in my condition and we watch them very closely.
Bored yet? I am. Reciting this information is a little redundant for me, but I know that so many of you care about me and my family. This information is to help you understand exactly what is going on, how I am doing with it, and how you believers can pray for us.
As for how I feel, I feel remarkably well. The counts say otherwise but I have a very hard time telling the difference between healthy counts and low counts in my body. Change is often gradual and my body adjusts slowly as the counts either increase or decrease. That is why blood draws are so important for measuring progress. I had great hopes of returning to teach middle school on Jan. 3 but I am protecting the stress level of my day in hopes of my counts improving. The new return date is now Jan. 31 pending improvement.
I suppose I should say something inspirational, motivational, or encouraging for all of you that dared to read this entire post. Let me leave you with a couple things I have learned so far from this ordeal.
Psalm 46:10 says, "Be still and know that I am God..." The literal and all too real translation for me is, "Be still, or I let you get your ASS beaten, and THEN you'll know that I am God!"
On a serious note, 1 Timothy 4:8 says, "Physical training is of some value, but godliness has value for all things, holding promise for the present life and the life to come." Our physical bodies are SO secondary to the health of our spiritual lives, today and tomorrow.
Brian
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