I apologize for the lack of communication over the last week. I was able to cram three more chemo sessions in between Monday and Friday. On Monday I received one of the drugs that I had only received once, peg-asparinagase, when I was an impatient. I guess it is a pretty serious drug that can have some pancreatic side effects. But they were pleased with the results from the last treatment and pleased with my labs from that day so I told them to bring it on and they gave it to me on Monday. It seems like my body responded pretty well to it. Then I had Tuesday, Wednesday, and Thursday off. On Wednesday, Hanna and I went down to Alexandria because she had orientation for her new job with Fairfax County Schools (Congrats to her!!) I was also able to help her do a little apartment hunting, which I was excited to do. And, of course, we got to see the trifecta of Blayneys which is always a treat. Then on Friday it was back to the hospital for the last chemo treatment of this "extended first round" It was a chemo called vinchristine, which i have had several times. The worst side effect of this treatment is a loss of sensation in the fingertips. It is almost like a constant prickling or numbness that has been with me pretty much from the beginning. It is one of the more constant side effects are pretty annoying, but there could be many worse things. They said that the feeling should eventually return it just may take a while, even after treatment is over...ugh. I guess I should take up a career in putting out torches with my fingers or something in the meantime...haha
One more highlight from the weekend, Mr. Gabler, Evan, Logan, Hanna, and I went down to the Phillies rout of the Cardinals yesterday and sat in one of the skyboxes. It was a very memorable experience of cheesesteaks, peanuts, and Jimmy Rollins go-ahead grandslams. Thanks again Mr. Gabler for that opportunity.
Now this week is more of a waiting game to see how the chemo affects the residual leukemia left in the marrow. I went to the hospital yesterday and again tomorrow to check 7,456 different kinds of blood markers to see how I am doing. For the most part, they have been very pleased with how my blood has maintained.
Then, Friday is the big day. I go back in for a 4th bone marrow biopsy (no worries, the morphine has already been requested). They will find some corner of my bone to draw into and take out the piece of bone that will analyze where we are at. Then it is a bit more waiting over the weekend and a meeting with Dr. Claxton on Monday to analyze the results.
So, this week is full of a lot of hope, a good bit of tears, a ton of fear, and some anxiety, oh, and, lets not forget, tons and tons of prayers. If the leukemia decreased to 5%, i believe we will move on to the next course. If there are some more setbacks or complications, they we have to put it into the hands of the doctors and see where they wanna take it from there. Either way, I am ready....scared, but ready.
As this time goes on, it is becoming more and more the routine, which I guess is good in a way and scary in a way.....though some days it still feels like this all began yesterday and I have yet to catch my breath. One thing I have never felt is alone and for that there are not nearly enough words of gratitude.
Im not gonna lie and say I was not crushed by last weeks news, but I did pick myself back up and I am ready to fight for whatever it is they tell me I need to do....more chemo, transplant. I will get through this stronger.
One other thing I want to mention just because it has been on my mind lately is the bone marrow transplant registry. I will write more later because I do not have tons of details but I think there are popular misconceptions about this procedure. It is almost always non-evasive and not too different than donating blood. A donor goes to an inpatient center and they draw his/her blood for about 4 hours, filter out some stem cells, and filter back in the rest of his/her blood. The stem cells are then used to infuse the cancer patient and those cells hopefully take over the marrow and create a whole new immune and blood system. It is not painful and relatively easy and saves tons of lives. This is something I never knew but hope to become more involved with. You can learn more at www.marrow.org
Well.....this is long enough for now. Keep praying for this big week, but know that, no matter what...
ALL will be well
Here is one for the ages: "If you wanna view paradise, simply look around and view it" - The Great Willy Wonka
Monday, July 27, 2009
Sunday, July 19, 2009
its a new week
I had a rough time dealing with the news from Thursday's meeting with Dr. Claxton. I dwelt on it a lot this weekend but I am now ready to face the new week with a new attitude. There are things that are in my control and what is happening in my bone marrow is not one of them. What I can control is my attitude, my demeanor, my faith, and my heart. So I am going to focus on those things and I am going to continue to do my part. I am still scared and still unsure of how the next chapter of all of this will read, but I will not be brought down. And I know that this book is going to be a good read and it will involve victory in the end.
On Friday, I started the second phase of the first course of chemotherapy. It involved two drugs given through an IV. I go back tomorrow to get a third drug and then again for one more treatment on Friday. Then I wait a week, have another bone marrow biopsy and they will see if this extra two weeks will throw me into remission. I am hopeful that this will be the case.
Friday was also an uplifting day that I want to mention. I spent the day with Mom, Dad, Grandmom, Aunt Ann, Alexis, Kelsey, Hanna Jo, Colin, Evan, Mrs. Gabler, John Hand and little Max at my parents house. It was great to be surrounded by friends and family. And there was great love, great support, great food, and great hugs from all of them.
Also, one more bit of good news. My taste buds are pretty much restored. Everything is a little off, but no more metallic taste, no more sweet taste, and I am enjoying food again.
Thanks for walking the walk with me.....it is inspiring and means more than anybody knows and it helps me to go on fighting, even though I am scared, sometimes terrified.
ALL will be well
"Cancer is so limited, It cannot cripple love, It cannot shatter hope, It cannot corrode faith, It cannot destory peace, It cannot kill friendship, It cannot supress memories, It cannot silence courage, It cannot invade the soul, It cannot steal eternal life, It cannot conquer the spirit."
On Friday, I started the second phase of the first course of chemotherapy. It involved two drugs given through an IV. I go back tomorrow to get a third drug and then again for one more treatment on Friday. Then I wait a week, have another bone marrow biopsy and they will see if this extra two weeks will throw me into remission. I am hopeful that this will be the case.
Friday was also an uplifting day that I want to mention. I spent the day with Mom, Dad, Grandmom, Aunt Ann, Alexis, Kelsey, Hanna Jo, Colin, Evan, Mrs. Gabler, John Hand and little Max at my parents house. It was great to be surrounded by friends and family. And there was great love, great support, great food, and great hugs from all of them.
Also, one more bit of good news. My taste buds are pretty much restored. Everything is a little off, but no more metallic taste, no more sweet taste, and I am enjoying food again.
Thanks for walking the walk with me.....it is inspiring and means more than anybody knows and it helps me to go on fighting, even though I am scared, sometimes terrified.
ALL will be well
"Cancer is so limited, It cannot cripple love, It cannot shatter hope, It cannot corrode faith, It cannot destory peace, It cannot kill friendship, It cannot supress memories, It cannot silence courage, It cannot invade the soul, It cannot steal eternal life, It cannot conquer the spirit."
Thursday, July 16, 2009
a setback
It was not the words that I wanted to hear from Dr. Claxton, "I am a little concerned about the results." The last biopsy found residual signs of leukemia and a remaining 12% in my marrow (they were hoping that it would be under 5%). So that means that I could not move on to the second course of the clinical trial. Instead I will be going on with an extended portion of the first course. So it will be two more weeks of similar treatment to what I have been getting.
It really upset me because I feel as though it is something that I have no control over. I have held up my end of the bargain over the last month but the marrow inside of me was unable to do the same. Dr. Claxton also had some concerns about some of the chromosomoes within the marrow.
So it was a down day. The worst is the feeling of helplessness. It is just a matter of if the leukemia is being cleared out or not and, up to this point, it has cleared out alot but it could have been better. Today was the first day in a long time with alot of tears, but I was able to share them with my mom, hanna, colin, and evan......which helped more than they know.
Tomorrow I will go back for more chemo and start the drugs of the first course over again. This will last for two weeks, followed by another biopsy and more tests that will hopefully show the leukemia in full remission, less than 5%
I'm gonna keep doing my part and fighting hard and staying positive, but it was hard today and really scary to know the treatment hasn't fully cooperated. It brought back the fear from the original diagnosis.
Cancer is an unknown beast and a faceless evil. Its so hard to think about it being in my body. I'll do everything I can to get it out of me but I just hope and pray that it and the drugs do their part now too.
I know that I will wake up tomorrow ready to take on the chemo and positive about knocking this out of me. Today was just a tough pill to swallow.
but still.....ALLwill be well
I'm sticking with this quote for now:
“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II
It really upset me because I feel as though it is something that I have no control over. I have held up my end of the bargain over the last month but the marrow inside of me was unable to do the same. Dr. Claxton also had some concerns about some of the chromosomoes within the marrow.
So it was a down day. The worst is the feeling of helplessness. It is just a matter of if the leukemia is being cleared out or not and, up to this point, it has cleared out alot but it could have been better. Today was the first day in a long time with alot of tears, but I was able to share them with my mom, hanna, colin, and evan......which helped more than they know.
Tomorrow I will go back for more chemo and start the drugs of the first course over again. This will last for two weeks, followed by another biopsy and more tests that will hopefully show the leukemia in full remission, less than 5%
I'm gonna keep doing my part and fighting hard and staying positive, but it was hard today and really scary to know the treatment hasn't fully cooperated. It brought back the fear from the original diagnosis.
Cancer is an unknown beast and a faceless evil. Its so hard to think about it being in my body. I'll do everything I can to get it out of me but I just hope and pray that it and the drugs do their part now too.
I know that I will wake up tomorrow ready to take on the chemo and positive about knocking this out of me. Today was just a tough pill to swallow.
but still.....ALLwill be well
I'm sticking with this quote for now:
“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II
its claxton time
So, I guess the third time was the charm. On Tuesday I went in for the bone marrow biopsy and the spinal tap, but this time they slipped a little morphine and ativan into my IV and it was way easier and way more comfortable. According to Hanna, I was also WAY loopier which provided her with some extra entertainment...haha. I am telling you though, there really was z zebra in that room.....nobody believed me. But, in all seriousness, i was thankful for how smooth it went. Nurse Practitioner Connie performed the procedure and I think also got a kick out of my chatty goofiness. Because I stopped taking this pretty powerful steroid on Tuesday, I have also had some withdrawl pain from that in my body.....It kinda feels like I spent 3 rounds in the ring with that big Russian guy from Mike Tyson's punchout. Its a throbbing of the muscles and joints everywhere. But, they were able to give me a prescription pain killer that has really helped. I'm glad that modern medicine and the nice people at Rite Aid Pharmacay have my back on all this stuff.
That piece of marrow that they took on Tuesday holds the answers to how well the treatment has been going. I go to see Dr. Claxton today to evaluate the results, see where I stand, and make decisions on where to proceed from here. I scared and anxious, but excited to find out just what has been happening in my body. I can hold up my end of the deal, stay positive, and fight with everything I have but now we will know if the chemo is holding up its end of the deal.
Extra prayers today are greatly apprecieated. I truly thank everybody for walking this walk with me. It has taught me so much about my family, my friends, people in general, my faith, and myself. And, no matter what the results today, the fight is still on and I'm not stopping and..
ALL will be well
“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II (maybe he was reading this blog.....)
That piece of marrow that they took on Tuesday holds the answers to how well the treatment has been going. I go to see Dr. Claxton today to evaluate the results, see where I stand, and make decisions on where to proceed from here. I scared and anxious, but excited to find out just what has been happening in my body. I can hold up my end of the deal, stay positive, and fight with everything I have but now we will know if the chemo is holding up its end of the deal.
Extra prayers today are greatly apprecieated. I truly thank everybody for walking this walk with me. It has taught me so much about my family, my friends, people in general, my faith, and myself. And, no matter what the results today, the fight is still on and I'm not stopping and..
ALL will be well
“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II (maybe he was reading this blog.....)
Monday, July 13, 2009
Big Day Tomorrow
Just wanted to post a quick update. I was at the hospital this morning and today was the grand opening of the new and improved cancer treatment center at Hershey Medical Center. My appointment was at 8am so I was the very first patient.....they said my door prize would be in the mail...haha. Its a great new facility and the cancer treatment area has alot more space and alot more privacy.....not to mention flat screen TVs and a snack room....i told them they would never get rid of me now. My blood work today was all very positive.....particularly my white blood cell count almost doubled, which means that I am less prone to infection and don't need to worry as much about particular foods or crowds or anything.
Tomorrow marks the end of the first Course of my Clinical Trial......Day 29 -----it will be rewarding to cross that one off on the calendar. I will be having two injections of chemo, a bone marrow biopsy, and a spinal tap where they will put chemo into my spinal fluid. Then they will run approximately 488,149 tests on all of that to see how well the treatment has been working. I go back on Thursday to meet with Dr. Claxton, my main oncologist and get the results. If the chemo has killed enough of the leukemia cells then I will graduate to the second course of treatement which is a whole new slew of medications and chemos. If there is still a significant amount of leukemic cells in my marrow then I will be extneded for another two weeks on similar treatement to what I am currently getting and then re-evaluated. So, I am saying some serious prayers that there are good results this week.
On a happy note, I had an amazing weekend in St. Mary' s Pennslyvania at a family reunion with the Gabler family....who have been a second family and so much more than that for over a decade now. It was incredible uplifting and healing to be around such amzing and loving people. Did way more for me than any drugs or hsoptial time could have. I thank them all for including me in their family. I also got go be there as my Hanna and my rommie Evan became new, first-time Godparents to their newest Godson...Ronan Francis Blayney. It was great to be there.
much love and ALL will be well
Tomorrow marks the end of the first Course of my Clinical Trial......Day 29 -----it will be rewarding to cross that one off on the calendar. I will be having two injections of chemo, a bone marrow biopsy, and a spinal tap where they will put chemo into my spinal fluid. Then they will run approximately 488,149 tests on all of that to see how well the treatment has been working. I go back on Thursday to meet with Dr. Claxton, my main oncologist and get the results. If the chemo has killed enough of the leukemia cells then I will graduate to the second course of treatement which is a whole new slew of medications and chemos. If there is still a significant amount of leukemic cells in my marrow then I will be extneded for another two weeks on similar treatement to what I am currently getting and then re-evaluated. So, I am saying some serious prayers that there are good results this week.
On a happy note, I had an amazing weekend in St. Mary' s Pennslyvania at a family reunion with the Gabler family....who have been a second family and so much more than that for over a decade now. It was incredible uplifting and healing to be around such amzing and loving people. Did way more for me than any drugs or hsoptial time could have. I thank them all for including me in their family. I also got go be there as my Hanna and my rommie Evan became new, first-time Godparents to their newest Godson...Ronan Francis Blayney. It was great to be there.
much love and ALL will be well
Thursday, July 9, 2009
Its breezy up there
Well, yesterday I joined the ranks of the greats.....Yule Brenner, Michael Chicklis, Howie Mandel,......Demi Moore. Check out the pics:
This is just getting started......6 hands at work, i had ALOT of hair.
I tried to convince everybody that this was a good look. Sort of a half comb over.....i didn't get very far.
.........and finally:
Like father like son! I think we look pretty sharp
Tuesday I had two more treatments of chemotherapy. I handled it pretty well and have been able to stay pretty active and healthy. I'm hoping that trend continues. This is the beginning of the last week of the first course of treatment. There is still a long way to go but it is exciting to hit some milestones. Still just looking at it one day at a time. This coming Tuesday I will have another bone marrow biopsy and another spinal tap to analyze the effectiveness of the chemo in the first course. This will be the first MAJOR test to see how things are progressing. I am nervous but hopeful. Hanna and I are off to Hershey right now to see if I need any blood transfusions, so its not a bad trip. We kind of look forward to these trips actually....the nurses and other patients are amazing and we have alot of laughs and I'm excited to show off my new 'do'. Special shout out to Nurse Patti who made me an orange creamcile smoothie the other day, trying to fatten me up. She's a rock star.
There are not enough shout outs to my friend and family either. I could not stay positive without you all. Much love and...
ALL will be well.
A quote my friend Hubert sent me that I loved:
"Feed your faith, and your fears will starve to death" -- Author Unknown
Monday, July 6, 2009
Three weeks in....
Today marks the completion of the first three weeks of the first stage of chemotherapy. It feels good to be into this a little bit and on my way with this fight. I have had some side effects of the chemo.....fingers tips have some sensory issues, things have sorta shifted from tasting really "metallic" to really "sweet". Some would think of this as a bonus....but its not as good as it sounds. Its more like waffle syrup being on everything at all times in gross quantities. gets a little old. I have also slendered down 20 pounds which i am trying to put back on........pardon the pause here while I gnaw on this stick of butter :) And they tell me that the mane of hair on my head should not be long for this world either. But, i'm okay with that. The Commish was one of my favorite shows growing up.
The doctor also received the results of my second bone marrow biopsy. They said they saw a decrease in the number of leukemic cells.....which is a good thing and on track to what they expecteced to find. So the treatements seem to be doing what they are supposed to be doing at this point.
Happy Independence Day to everybody! The highlight of the weekend was being able to have a completely normal day on Saturday, drive to Alexandria with Hanna and Logan and meet Ronan, the one week old baby boy of my good frineds Shana and Warren Blayney. He is gorgeous and already has more hair than I will have in a few days. It was inspiring to see new life and gave me even further reason to dive back into this fight.
I head back to the hopsital tomorrow to start the 4th week of chemo. I will two pretty powerful drugs tomorrow so hoepfully they don't knock me off my feet.
I could never truly express what my friends and family have meant to me through all this. There are not enough thank you's to go around. the cards, books, food, hugs, calls, texts, and visits have all meant more than I can express. We will all fight this together....one day at a time. and, not doubt.....
ALL will be well
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ---Lance Armstrong (hoping he wins it again this year)
The doctor also received the results of my second bone marrow biopsy. They said they saw a decrease in the number of leukemic cells.....which is a good thing and on track to what they expecteced to find. So the treatements seem to be doing what they are supposed to be doing at this point.
Happy Independence Day to everybody! The highlight of the weekend was being able to have a completely normal day on Saturday, drive to Alexandria with Hanna and Logan and meet Ronan, the one week old baby boy of my good frineds Shana and Warren Blayney. He is gorgeous and already has more hair than I will have in a few days. It was inspiring to see new life and gave me even further reason to dive back into this fight.
I head back to the hopsital tomorrow to start the 4th week of chemo. I will two pretty powerful drugs tomorrow so hoepfully they don't knock me off my feet.
I could never truly express what my friends and family have meant to me through all this. There are not enough thank you's to go around. the cards, books, food, hugs, calls, texts, and visits have all meant more than I can express. We will all fight this together....one day at a time. and, not doubt.....
ALL will be well
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ---Lance Armstrong (hoping he wins it again this year)
Wednesday, July 1, 2009
Some more bragging......
so not only do i have the smallest amount of red blood cells ever recorded, I also apparaently have the hardest/densest hip bone in town. The bone marrow biopsy went okay yesterday but the nurse practioner had a very difficult time breaking into my bone because it was so strong.....I was rather proud :)
Other than the biopsy (which is to check to see if the treatment has been clearing out the marrow of the bad cells), i had two different chemo treatements yesterday. All went well and I have been way less nauseous this week. The nurses at the outpatient chemo center are all amazing and I think that there will be some new lifelong friends out of this hiccup. I cant say enough about everybody I have interacted with out at Hershey.
I also want to brag some more about those around me. I had a great surprise yesterday that came at a great time. Some of my friends made a scapbook for me of memories and well-wishes and it was an enormous spirit lifter. I can't describe how blessed I feel.
Well, today is another day to cross off the calendar, take a big step forward, and kick some butt. its the only option.
thanks for walking with me. Here is another favorite quote of mine:
"Friendship is unnecessary, like philosophy, like art, it has no survival value; rather, it is one of those things that gives value to survival"
and....ALL will be well
Other than the biopsy (which is to check to see if the treatment has been clearing out the marrow of the bad cells), i had two different chemo treatements yesterday. All went well and I have been way less nauseous this week. The nurses at the outpatient chemo center are all amazing and I think that there will be some new lifelong friends out of this hiccup. I cant say enough about everybody I have interacted with out at Hershey.
I also want to brag some more about those around me. I had a great surprise yesterday that came at a great time. Some of my friends made a scapbook for me of memories and well-wishes and it was an enormous spirit lifter. I can't describe how blessed I feel.
Well, today is another day to cross off the calendar, take a big step forward, and kick some butt. its the only option.
thanks for walking with me. Here is another favorite quote of mine:
"Friendship is unnecessary, like philosophy, like art, it has no survival value; rather, it is one of those things that gives value to survival"
and....ALL will be well
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